Home To Message Boards Site Map 

Requesting New APer’s...

post their progress here.

AP is really a hard protocol to start.  There is a lot of worry and fear that it's not working or questions if this or that would help.  But because of the previously aforementioned feeling 'jumped on' many people starting AP do not feel comfortable saying any of the negatives as they struggle to get the disease into remission. 

I really lucked out...being newly diagnosed I mostly coasted into feeling great.  I didn't have a lot to 'undo' if that makes sense.  But some of people just starting AP have been on a lot of the traditional drugs and may have a harder time than I.  Here they could get support as well as light the way for others starting on the road back to health.

We APers have never said it was an easy road...but somebody somewhere has to start posting the ups and downs of the treatment plan.

Maybe they could post their med, the dosage, and the time on AP at the top of the post so everybody can see what's going on.  Like:

Pip AP 11+ months, Mino 200 mgs MWF

I hope this makes sense.

Pip

AP 5 Months, 150mg Minocin MWF, 17.5mg MTX/wk, 400mg Hydroxyquine/day


Okay, I'll start. Sometimes I feel like I'm not cut out for this protocol and I'm on the least risky regime possible (in terms of joint damage). I get that my immune system is supposed to attack the mycoplasma, and as I'm taking MTX this may be seriously inhibiting my immune's system ability to do this, but I still have all sorts of scary herxing reactions! The way I figure it is even though I'm on MTX I still don't get colds that other people get and my wounds still heal, so I must have some immunity action going on and that's attacking those pesky mycoplasma being lured out by the Minocin. I started only taking 50mg Minocin MWF and slowly built up to 200 (eventually i dropped back down to 150 because I was getting better results there). Every time I would raise my dose I would get weird reactions. One morning my foot was "broken" and I could barely walk, BECAUSE ALL MY MEDS HAD STOPPED WORKING OVER NIGHT, I got a debilitating back pain in my lower back BECAUSE I HAD SUDDEN ACUTE KIDNEY FAILURE. The pain in my elbow meant MY RA WAS RAPIDLY PROGRESSING. I was keeping a progress chart and after a few months I started noticing a pattern: every time I raised my Minocin I was getting one of these extreme reactions, but they would always be short lived. Sometimes I would have SUDDEN ACUTE KIDNEY FAILURE about 2 hours after my Mino dose and a few hours later I would be fine again. So it got so I could recognise herxes.

Now I'm on the second part of phasing in AP, which is phasing out MTX. I predicted that with each drop of my MTX dose I would get a period of herxing as my immune system got a little stronger and killed more mycoplasma, but that it would happen more slowly than when upping the Minocin because MTX stays in your system for weeks. I made my first reduction of MTX 5 weeks ago. For the first maybe 3 weeks nothing happened and then I had a terrible week! All my old aches and pains came back along with some new ones, and my knee started swelling up again. Also, I went to put on my shoe and I had to force my foot in because it was so swollen. That's right, THE ANTIBIOTIC PROTOCOL THERAPY WASN'T WORKING! And even the slight reduction on 2.5mg MTX was enough to tumble the whole house of cards. Then Pip! reminded me of the healing power of the lemon/olive oil drink, I made one every day for a week, and now I'm feeling pretty good again and the swelling is gone. Tomorrow I will take my last 17.5mg dose of MTX, and if I continue to feel good, next week I will take only 15mg.

So while I'm dying a thousand deaths over here, I keep reminding myself that from day one I knew it would be 3 steps forward, 2 steps back. Yes, sometimes I lay awake at night, especially when something or other is throbbing with pain, and wonder what the heck am I doing? Also, I wonder how some people have the fortitude to jump in with both feet and stick with it for a year, maybe two, before they start to see significant improvement. Those people are inspiring to me. Also, when I'm really freaked out I go to the Road Back board or testimonial pages and read other people's stories, and I also find stories of AP successes in other places as well. I read studies and new research and notice more and more the medical community is coming around to the idea that infection plays a role in AI diseases.

Sometimes when I'm a doubter I take it as a sign that deep down I don't really believe this will work, but then I comfort myself that I don't have to believe it will work for it to work, I only have to believe it will work even if I don't believe it will. (Haha! That's my new moto!).

So those are, in brief, some ups and downs so far. I think Pip is right and it would be helpful for APers to post more of this stuff so we don't feel alone or that what we're going through is unusual. I'll keep you posted!


AP: 3 1/2 months  200mg. MWF plus Plaquenil and Naproxen

I am glad to see this thread.  I want all the info and stories of others on AP.  After reading everyone's daily challenges with RA I realize mine isn't really bad.  The AP seems to have kicked in.  I can tell when I herx now too as I feel crummy for a day or so then back to feeling better.  I read the boards all the time on rheumaticsupport.net.  It is a wealth of info for APers! 

Last week, I started taking Threelac(for yeast) and NAC.  It has worked wonders already.  I have much less pain and achiness this week.  I sure hope it continues.  I am enjoying less pain!

mamamiax439303.2681018518

Hi Pip:

I've been on AP for 2 1/2 years. My RA came on suddenly and very aggressively. Was the owner of a handicap packard.

The first month of AP was HORRIBLE. I herxed big time.  Here were my symptoms: dizziness (went away after a week or so), horrible pain everywhere even where I wasn't having problems, extreme fatigue (could not get out of bed except to go to the bathroom, slept like 18 hours a day on most days), nauseated.  There may have been more but those are the ones that stand out.

It was only this extreme the first month then it started very gradually and I mean gradually to get better.  There were times when the pain totally went away only to come back with a vengeance.

My confidence in the protocal and the Roadback.org board was the only thing to get me through it along with a VERY supportive hubby. The herx started within hours of my first minocin so it makes a lot of sense to me about this whole microplasma thing. I really felt like my body was fighting itself.

It has taken two years for me to achieve remission which was in January of this year. Then I was hit with a pretty nasty flare due to a death in the family and a move to Korea but that has subsided.

I never considered myself a very brave person but what I've lived through and achieved, I must say I am pretty darn proud of myself right now.

I still don't eat like I should. I need to kick the Pepsi habit and I know that would help too.

It also helps tremendously to have an AP doctor who is very familiar with this. My doctor, recommended to me by roadback.org, has been instrumental in my remission.

This treatment is not for the faint of heart. It's been the toughest battle I've fought to date.

I just want us ALL to be painfree!

Becky

 

Gale - AP 1 1/2 months, Minocin 200 mg. M/W/F, Medrol 4 mg. daily, Methotrexate 25 mg. IM weekly, Orencia 500 mg. monthly

 

I'm an AP 'newbie', so I'm in the 'patiently waiting for AP to kick in so I can begin to wean off the biologics' stage. I also happen to be one of those who has been on just about every biologic and traditional treatment regimen out there, AND I have significant joint damage to both knees and feet, so I know my 'roadback' probably isn't going to be an easy one. But thanks to the wonderful support of both the 'traditional' and AP members of this board, I know this is something I can do!

Unfortunately, like go-go said, it's definitely a 3 steps forward, 2 steps backwards process. Herxing, although a good thing can be debilitating at times, and it's usually during those times that I begin to question my committment. So that's when I go to the Roadback and read the testimonial pages. Some of those success stories are absolutely AMAZING!

Anyway, I have not yet had that "ah ha" moment that Pip talks about, but I do know it's coming. It's all about patience...something I don't have a lot of, BUT I'M LEARNING!!

Does 16 months count as "new?" My RA came on very quickly. The first two rheumatologists I saw called it rapid-onset. I went from no symptoms one month to barely being able to walk or lift my baby the next month. My RA worsened every day that I went without medication (December 2005 to April 2006, I was on nothing but Advil). I was due to start Enbrel in February 2006, but I decided to see an AP rheumatologist instead. Within 2 months of being on antibiotics the depression and fatigue lifted. Within 6 months I was 90% better and could make a fist with both hands. In 8 months my sed rate and CRP were normal and my Rheumatoid factor had dropped from 282 down to 14.

I, like Pip, am very lucky that I found AP early on in my disease process. I think that is why I was such a quick responder.

Take care. Karin :)

Pip - AP 1 year, 200 mgs. Minocin MWF

This is the post I'm making at the Roadback today.

Today is my one year anniversary on AP. 

 

Ive known this date was coming and have been struggling with what I wanted to say on such a auspicious occasion.  What witty truism could I write that would inspire newbies to keep on when the entire process is filled with steps back?  How can I show with my own healing that the science behind AP is solid and that no matter what the traditional rheumies say, this will work for you!

 

After dental work went bad18 months earlier, I was finally diagnosed in March 06 with rare Palindromic RA.  Within 4 months I was on a walker at night and by the 5th month needed a wheelchair on 3 separate occasions.  Id approached a total on 10 docs for AP.  All except 1 was willing to prescribe Minocin but none were willing to monitor me.  Around doc # 5, I gave up and flew out of state to one of the top dogs in AP because I felt I was wasting precious time.

 

Im glad I did.  Because Id never been on the traditional meds, I was an early responder.  Within 2 weeks I was able to open a milk jug again for the first time in about a year. 

 

Its not to say I didnt have steps back.  There was one other occasion I couldn't open the darn milk gallon.  My  3 month herx was a doozy with my hand swelling up like Felix the Cats glove.  My 6th month herx scared me to death a case of pneumonia like Id never had before.  My lung capacity dropped so much that I was unable to breathe and couldnt lie down.  Actually, most of my fear was that the traditional docs were going to use this herx as a reason to take me off the Mino and I knew it was only a herx not some sort of delayed allergic reaction.

 

During this entire time I just got better and better.  I was able to run again only a couple of months after starting AP.  It was ungainly and ugly as heck, but I did it!   When we decorated for Christmas I was able to help out up on the roof.  Didnt fall off once!  Four months after starting AP I was able to ice skate for the first time in decades.  I can take stairs up and down and even at a trot if need be.  When we started packing for the move I lifted and carried, carted and toted with the rest of them.  I was able to drive a car across the county by myself with a 6 year old in the back seat as my co-pilot.  Something I was packing for a year earlier and thought Id lost forever.  Again. 

 

That trip across the country showed me something Id not been willing to internalize before.  I knew of the hyperpermeable gut lining theories but didnt realize that it also applied to me.  Forgetting my probiotics for 6 weeks set me back and some of the stiffness and achyness returned and took a few months to undo.  Now, Im focusing on the gut to continue my healing.

 

Because I believe if we focus on all aspects of our lives that got us into this mess not only can we heal, we have a darn good shot at a cure.   Stress remediation, anyone? 

 

So, now Im in some sort of weird mid-life health crisis.  I keep doing things just to prove to myself I can.  Ive boogie boarded!  And I promise you this my goal over the next year is to heal enough to surf! 

 

So 2 steps forward, 1 step back!  You still end up much further ahead than you ever dreamed possible.

 

Happy healing!

 

Pip

 

P.S.  Thank you Roadback for giving me my life back!

 

Minocin - 100 mg twice daily since 8/6/07. 

Reactions to date:  My right hand which has been a block of ice for 6 years since a 2001 W/C neck injury which ruptured a disc is suddenly warm to the touch.  My husband told me about a week into the treatment when we climbed into bed and were snuggling good night.  I hadn't even noticed. 

Return of carpel tunnel symptom:  Since this was one of my first initial MCTD symptoms, my night time numbness in both hands has returned, and I am back to wearing my hand and wrist cock-up braces at night, which is working.  I declined the CT surgery 3 years ago as I told the surgeon who was pushing double hand surgery on me that I didn't think it was CT of the usual sort, and wanted more testing to see if it was something else causing it other than repetitious movement.  EDIT:  I just finished reading that CT is sometimes one of the first symptoms of RA, and it was, for me, one of my first symptoms, and that treating the RA first is the correct treatment, not surgery.  Well, then I guess I managed to duck two surgeries by refusing to take his two second exam and pronouncement I needed dual surgeries. 

General well being:  Every day I am having a slight lifting of my general sense of well-being and not feeling as sick, with decrease in exhaustion factor. 

Herxing:  Nothing yet, but thanks for all the PMs reminding me not to get cocky.  Today I had a return of the bleeding nose ulcers, but my primary recently switched me from cortisporin ointments to another cream, as she said after 5 years of the ointment, I had built up a resistance.

Books:  My books arrived and I am studying AP Protocol.  I was shocked that on the Minocin printout from Costco Pharmacy it lists this under Other Uses as a treatment for RA.  I am also shocked to read the posts that Minocin has parity with MTX, Plaquenil, etc. as a DMARDS, but I was never offered this treatment. 

Costco pharmacies, hearing services, eye services, and food courts, including wine and beer sales are open to the public without membership because they are licensed services, and must be open to the entire populace without a surcharge. 

justsaynoemore39319.6552430556Minocin 150mg MWF, 400mg plaquenil/day, 15mg MTX/wk, Fish Oil


Pip, BIG HUGE CONGRATULATIONS for one year of AP! Go, Pip! You're an
inspiration.

Cathy, keep on truckin', GF----the hand is a really good sign.

I'm at about 6 months of a super slow mtx wean. I'm down to 15mg. I had
a bad couple of last days when my knee and ankle both swelled up
(swole?), much to my alarm, but I have "stayed the course" and they've
both decreased again. There's just one bit of swelling on my ankle. Also,
last week I could squat (finally!) but this week I can't. This is the two steps
back portion that's the hard part. Last night I read some new testimonials
on the Road Back and I went to sleep feeling a lot more hopeful. I also
remind myself that what I consider to be bad days now were what I
considered to be good days 6 months ago. AP progress is slow so it's
easy to forget where you came from and how far you've come.

Also bouying me up are my current readings about helicobacter pylori. If
we ever have to ask why the medical community does not embrace AP
and the infectious theory for RA we only have to look at the story of H.
Pylori to see a real life true example of the same kind of situation and
how the whole thing played out in the end (Barry Marshall received the
Nobel Prize, 2005, 90% of peptic ulcers have been cured, relieving the
suffering of millions) . Thank you Barry Marshall and Tomas McPherson
Brown for not giving up, even as the rest of the world ridiculed and
isolated you.

Hey Karin, I read your testimonial on the Road Back and it's great! Keep
up the good work, APers!Gimpy-a-gogo39319.4772569444

Thank you for starting this thread, Pip.  I've reached the end pretty much of trying the biologics and it's just not working.  I'm moving to a new state and hoping with this move I will find a new Rheumy who is open to new things.  I'm truly considering AP.  It's wonderful hearing what you are all going through!  Thank you.

Hugs,

Jen

FYI...before I'm off to a wedding, some interesting info about ulcers and H. pylori.

When H. pylori was first identified as the major cause of peptic ulcers, it was found in 90% of people with duodenal ulcers and in about 80% of people with gastric ulcers. As more people are being tested and treated for the bacteria, however, the rate of H. pylori- associated ulcers has declined. For example, a 2001 study suggested that about half of ulcers are not caused by H. pylori . Instead, they tend to be caused by regular use of nonsteroidal anti-inflammatory drugs (NSAIDs), which include aspirin and other common pain relievers. Genetic factors or, rarely, Crohn's disease or Zollinger-Ellison syndrome, also cause ulcers.

Some researchers now believe that duodenal ulcers are not caused by H. pylori , but that the presence of the bacteria simply delays healing. This fact, they say, may explain why up to half of cases of acute duodenal perforation show no evidence of H. pylori , and why duodenal ulcers can recur even after H. pylori has been eradicated.

A 2006 study published in the Journal of Biological Chemistry indicates that a protein called decay-accelerating factor (DAF) acts as receptor for H. pylori . Animal studies show that blocking this interaction renders H. pylori harmless to the stomach. Researchers hope the discovery leads to new drugs that can reduce the risk of peptic ulcer.

http://www.umm.edu/patiented/articles/what_causes_peptic_ulc ers_000019_2.htm


Lynnsorry to be so ignorant but just what is "AP"?  just a short definition would be helpful for those who do not understand the lingo.

good luck to you Pip on this thread, Lord knows you try so hard to be helpful to others suffering with RA,,,,congrats on your first year

tks in advance...rose

Rose - AP stands for 'antibiotic protocol', which embraces the infection theory as a cause of RA and other AI diseases. Most often, the infectious agent is mycoplasma, but can also be other bacterial L forms. The use of low dose antibiotics, particularly the tetracycline family, attacks the disease process at its source...the infectious agent itself.

Hope this helps!

And Pip! congratulations on the one year, and thanks for being so instrumental in helping me find this alternative medical treatment for my disease.  You are the best !!!!  GoGo, many thanks too.  DITTO!!!!!

I wanted to ask anyone doing the AP therapy - do you still take pain meds from time to time?  I'm really really researching this and was wondering if you have a chance to supplement the therapy with anything on the really hard days?  Thanks all!

 

Jen

Jennifer - I am only a few weeks into this, and before I started my low back went out and I also have osteoporosis, so I have been hitting pain pills and muscle relaxants pretty hard, until the chiro finally got me going again about a week ago.  At least it wasn't a fracture.  My goal is to be weaned off the methotrexate and plaquenil.  But in answer to your question, at this point, I still have pain, that hasn't changed at all but it sure is nice to have my right hand back. 

Likewise, Jen. I havn't weaned off my traditional meds yet, but that is the ultimate plan. I have only been doing AP for a couple of months, and I'm still in the '2 steps forward, 3 steps backward' phase. It seems that every "AH HA" moment (as Pip puts it) is followed by a few days of flare and pain. But, I AM having those "AH-HA" moments!

Like others have stated, this type of treatment isn't for the faint of heart, and it definitely requires committment and (most of all)PATIENCE.

Pip, Karin, and Go-Go are excellent sources of information, so if you have any further questions, feel free to post them here or PM one of them!

.

justsaynoemore2009-06-16 16:24:39Rose, if you're interested in Antiobiotic Protocol Therapy a really good book
to read is The New Arthritis Breakthrough by Henry Scammell (your local
library probably has a copy), and a website to visit is
www.roadback.org.

And yes, you can use pain medication while on AP. I personally don't, unless
you count MJ, but I never used them before AP either (except for the
occassional, now VERY rare, ibuprophen).

I just reread my first post on this thread and it made me realise I had the
same symptoms the first time I reduced my mtx that I do now that I've
reduced it a second time, only this time they showed up sooner. And so it IS
a herx! Hallelujah! This board is almost better than a diary in some ways.Gimpy-a-gogo39319.7046412037PS Jennifer, if you post on the Road Back Message board a volunteer will
email you a list of AP doctors in your new state[QUOTE=jennifermichael]

I wanted to ask anyone doing the AP therapy - do you still take pain meds from time to time?  I'm really really researching this and was wondering if you have a chance to supplement the therapy with anything on the really hard days?  Thanks all!

 

Jen

[/QUOTE]

 

Jen: I haven't taken so much as an Advil in over a year because I haven't needed it! I did take Advil for the first few months of treatment to lower inflammation and allow the antibiotic to penetrate (although it did nothing for the pain). Many people do start off on prednisone, kenalog injections, etc, until they can wean off anti-inflammatory agents. Hugs, Karin :)

karin101339319.9288194444

I saw this on the RB board and thought it was hilarious! It is so interesting that the word still isn't quite yet "out" and gastroenterologists still don't want to prescribe antibiotics for ulcers. My girlfriend has an ulcer and the doctor has only prescribed pepcid! They haven't even tested her for H. Pylori! Crazy. The proof is there and they still won't listen to it. The CDC has had to resort to a public service announcements so that the public will go and ask their doctors for antibiotics for ulcers:

I wanted to share the giggle I got when I found these funny CDC public service announcements while researching H. Pylori.

 
You must have Real Player to listen:
http://www.cdc.gov/ulcer/psa/audeng28.ram
and
Well, I can speak for ulcers and AP! I considered myself to stay pretty well-informed, but when I had ulcers about 8-9 yrs. ago, I had no idea about antibiotic treatment for them. I was referred to a gastro, in terrible pain especially all night long and miserable throughout the day. I expected to have something shoved down my throat, then to be told I'd be on long term meds and have to adjust my diet forever. And to always feel bad anyway, really! But the gastro said, no, we just test your blood now and if comes backs positive you take antibiotics for ten days. Cured me!! And until I was better, I had no idea how bad I had felt - I had been sick for awhile, and it didn't really register until the pain was unbearable.

An antibiotic has been approved for IBS. Keep your eyes on that one. Much more promising in my opinion than the more advertised magic marker on the belly Zelnorm that was already pulled for some kind of horrendous side effects.

Pain and AP - my theory is that my daughter is pain-free because she had antibiotics first. She was in terrible pain, cried when I touched her. I really thought she might die - it was unbelievably scary. They put her in the hospital and treated her for a bone/joint infection and she has been basically pain-free since (she is so opposite - her worst pain has been after steroid injections!). When they could not prove the infection, the antibiotics were stopped. I am upset they were stopped at that point, but our AP dr. says just getting them in the first place really saved her. He says about the dr., "God bless him", and says he only stopped them because he was scared of malpractice, it is not Standard of Care when they can't prove the infection.

While it is not uncommon for young children to not have JRA pain, since she did have pain that stopped, I contribute that to antibiotics and not the fact she doesn't express pain. Hope that makes sense!

She has been back on antibiotics (Zithromax, 1 tsp. 2 x week) since Aug. 2006. She doesn't take anything but that, and ran a mile in a Fun Run yesterday!!

Hi,

I am not currently on AP therapy, but my current treatment with integrative manual therapy has found significant amounts of bacteria in my gut and my bones!  I definitely have "Leaky gut syndrome". The presence of bacteria in my bones has made  me think again about AP therapy.   Right now my therapist says she can treatment without the antibiotics.  I plan to give her another month.

I am taking some herbs which have antibiotic properties.  So maybe I am on a kind of AP therapy. 

Pip! thanks for this thread.  I too experience a " 2 steps forward, 1 step back" in my therapy.  Fortunately my lows have never gone as low as when I first started my treatments.

Congratulations on your one year anniversary.

 

Thanks all!

Cathy - go, go go! 

Lynn - I'm having a supre busy weekend involving setting up the patio so I don't have time to read the study you provided.  Give me a few days because I know I have some questions.  Enjoy the wedding!

Jennifer -

I'm still not weaning the Salsalate (asprin w/out the stomach irritation because my RF is still sky high at 286).  I'm weaning the pain pills now.  I think I can come off pretty easy but notice a loss of energy when I don't take them at all.  Is that possible?  Anyway, the operative word it 'wean'.  You know what you can take and the object with AP is to get off as many of the meds as possible.  When you don't need it, you'll forget to take it.  Silly?  But true.

Gale -

What was your first "ah ha" moment? 

I should tell everybody that when I got my 'milk gallon' it was my husband that noticed.  I was in the middle of drying off a soccer-playing-in-the-rain child and making hot chocolate for her.  Fast forward to Christmas and our families' tradition of buying an ornament that symbolized the entire year for us.  We're at one of those Christmas Villages that do Christmas all year and we're looking for just the right one!  I'm thinking maybe a 'first tooth' or a school bus for the baby and I'm chattering away at the hubby and turn to look at him and he has this sort of sick twisted look on his face.  And I freeze.  I'm thinking like 'what did I forget? Who died?" and he says "you really don't remember, do you?"  And I just stand there like a deer in headlights and he says "PRA, you have PRA".  And it hit me.  I am no longer my PRA - I'm me, Pip, who happens to have PRA.  When that kicks in you can take on the world again.

Suzanne -

You are amazing!  And I'm like that.  Pred made me worse and most every doc said 'that's not possible' to me. 

Thyme -

Yes, that's why I push the 'diet' angle.  Too much ancedotal evidence linking foods with ABX or anti-viral properties to discount, especially since the 'leaky gut' research.  What I had was too fast and furious too take the time for diet IMHO so I have always intended to 'go for my cure' but maintain with naturals later.  Please let me know what your docs say about curing leaky gut.  I'm still trying to get my hubby to type up my new diet (haven't started yet) so I can post about it.  A lot of paper.  Sigh.  I have a friend doing what you're doing and she herxed a lot on her stuff too.  Same stuff IMO, just not as concentrated. 

All -

My original point in this post was for APers to post more of the ups and downs (especially the downs) so that others could learn from the posts.  GoGo was most on with my intent.  See how it worked out.  She got down and looked at it later and went 'wow'.  We all need hugs when we get scared or mad.  Even me!  LOL  There is a disturbing tendency with APer's to say most of the 'good side' but we're afraid to post the downs because we get jumped on.  Or we did.  A lot of that has gone away on AI.  But for people considering AP they have to really understand the 2 steps forward 1 back thing.

Let me give you an example.  I saw a post on another board with a person starting the equivalent of AP but they didn't even realize it.  The doc pescribed doxy as an antimalarial.  Can any of you imagine starting AP and NOT knowing what you know now?  I tried to remain upbeat but posted a warning - and got the equivalent of 'don't go too far or I'll just delete you'. 

Pip

 

My first "ah ha" moment. Well, it happened about 2 weeks ago. I woke up one morning and was lying in bed when all of a sudden I realized I had my arm up over my head. I used to LOVE to sleep that way but hadn't been able to get my arm up over my head for several years. BIG moment for me as I realized this was indeed a Pip "ah ha!"Pip - this is a friendly hijacking of a thread, but it ties into the vaccine one ...  GoGo - on pages 152-154 of Henry Scammell's book Scleroderma, he explains thalidomide, which is the drug that was prescribed in England with such horrifying results on the offspring.  Diethystilbestrol (DES) is the drug I am talking about over on the vaccine thread.  It's just interesting that Scammel is tying the two together with the AP therapy.  I might be getting some luck here finally.  Okay, back to our regularly programmed thread. 

Well, guess I get to take the thread back On Topic - last night I think I have started into my first "herxing" as this childhood HSV-1 (mouth canker sores) that my great new primary diagnosed recently with a simple cotton swab culture, broke out again.  And its morphed into a different-looking weird bump that disappeared overnight, but exactly opposite of it on the gum is where the usual canker has appeared.  I have mentioned before I had scarlet fever (ie strep) at age 3 after being taken out of the dark of Alaska for the first time to LA where my parents were from, and dropped unconscious while outside playing.  I have read up on the symptoms of scarlet fever and it sure doesn't match up to what my Mom said happened - which was my hands and feet turning bright red, so that's what the doctor (who called to the house, this was in 1959, oh for the good ole days) said was scarlet fever.  But I am pondering that it was a lupus flare from being in the SUNSHINE.  And after a full day at Disneyworld three years after it opened :) 

Anyhow, I am almost through four weeks on minocin, still feeling good, but this is the first flare or return of symptoms I have had of any signficance and if it doesn't spread and get worse, then I will be very lucky.  The last outbreak turned into a huge bacterial infection, but since I am on an antibiotic, I hope it holds it down, because these things are horribly painful when they happen and it hurts to even drink water.  Then I drop 20 lbs. and look like a scarecrow.  I am hopeful this is going to stop this circle of symptoms I have had it seems my entire life.  Oh, and the carpel tunnel stopped suddenly, just like it did three years ago. 

You know, oddly, when I got my 6 month pneumonia herx and really couldn't breathe - it was awful - this was the first time in ages that I beat the thing in only one dose of ABX.  The time before they gave me 3 zith packs. 

My AP doc also said I'm never to take Mino with any other ABX again.  I refused to get off and the docs at the Great U had to scramble to find something compatible with Mino.  He said if it happened again, use the regualr meds to kill the pneumonia THEN get back on the Mino. 

So...food for thought if it develops.

Pip

Ugh...so all week I was having a pretty bad herx or flare. I reduced my MTX to 15mg a couple of weeks ago and like I said both my knee and ankle swole up (mostly gone now) and I was getting crazy hit 'n' run pains pretty much everywhere. There were a couple nights of bad sleep and yesterday I had wicked tendonitis in both arms. This week I took 2 ibuprofen in one day (I usually take none and really these 2 didn't do much). I was actually looking forward to taking my mtx today to alleviate some of these symptoms.

Well, today I woke up feeling a lot better. I'm still having all those things but way way muted, and no foot pain at all.

And I know it's not because of the mtx because I haven't taken it yet!

I guess people never get used to herxes. I read the roadback bulliten board and reading about other people's herxes past and present help me get through mine a little more optimistically. So I'm just going to continue what I'm doing until I feel consistantly better, reduce my mtx again and restart the cycle. Whoopie!

Just wanted to share in case others are having the same kinds of cycles and need to comiserate.

.

justsaynoemore2009-06-16 16:25:47Thank you for this thread. Awhile back someone complained about certain people pushing AP. That just amazed me. We are here to learn from each other and I am grateful for threads like this.

I have decided that I will go on AP whenever I have the first problem with the biologics which I didnt want to take in the first place. But I didnt really know much about RA let alone AP therapy.

You certainly opened up  another alternative for me and others here on this board posting on all your experience with this therapy.
Thanks

Thank you Thinkthin!

GoGo - once the pain starts to mute you're in the zone.  Seriously!  It's that weird threshold I keep nattering on about.  For me, anyway, there was a point were something would go off - but it was nowhere as bad as when first diagnosed.  Hopefully you're there now and the next lowering of the MTX is child's play.

Does anybody have a plan or has started working on weaning any of the biologics?  Even if you are not doing AP - any suggestions?  People ask me about this all the time and I have to say...uuuuuhhhhhh!  I have no idea how the biologics work so ....any help would be appreciated.  What would be the safest pain free way.

Pip

Thank you for the welcome on the other thread i didn't want to

interupt her thread and thank you for opening our minds on ap

i am not saying one way or the other i would use it but just to

know there are other options just makes you feel better.

Have a pain free night.

Thanks,

Pip

Pip, I'm actually tapering MXT I've gone from 20 mg to 17.5 and will try and taper to 15 mg in a couple of weeks.  I was going to try to taper in the spring but my knee replacement and excision and skin graft on my nose took precedence.  Am focusing now on tapering.  Still on Remicade but would like to taper MXT as much as possible.  Like to give my liver a little R&R.  Lindy 

Update on new AP therapy:  Star (start) Date 070806 (so I am an original Trekkie, sue me :)

After a little more than three weeks, I am slowly gaining some hope here, after seven years of hell of progressively deteriorating while everyone fiddled around with my "depression" causing everything from seizures to elbow nodules to an infected diseased gall bladder that had to be removed as sepsis was setting in, and a total lower back disc collapse with microdisc back surgery, but I was making it all up to cage for narcotics and was sent to the psychiatrist.  Does this sound familiar?   

I am waking up every morning feeling better, not worse.  This is the first significant change in my overall sense of well being since suddenly becoming sick seven years ago. 

No side effects so far, the weird bump and ulcer in my mouth lasted 24 hours, a huge relief.  The best part is my right hand and my body temperature feeling warm, not ice cold.  I still have swelling in my right hand, but that is from the w/c injury of a herniated neck disc which I refused surgery on.  The neurosurgeon would have gone through my thyroid to perform the surgery.  Good thing I refused as a few months later I had to have a total thyroidectomy as the goiter had wrapped around my breathing tube and pushed across my feeding tube, that was the reason I couldn't swallow or breathe.  And yes, my doctor was playing with my boobies (mammograms) instead of focusing on my problem I presented myself with, breathing and swallowing problems.  Typical man. 

Pip, I see the rheumy in a month or so (he lets me pick when I want to come back "2-3 months, you choose", along with ("1 or 2 a day Plaquenil, I don't care either way"), and cannot wait for my full blood test results.  I am of the understanding the AP "Harvard" Protocol (minocin 100 mg 2x a day for me) can blow your blood results out of proportion, so I am really getting excited to see how he handles all of this.  I go in today for an 8-week TSH test as the predisone shot up my readings to 81 or something close to that.  I will NEVER take predisone ever again.  Seems to cause osteoporosis too, hmmm.  

I am still flabbergasted that AP protocol is a DMARDS and on parity with MTX, etc.  Four rheumys and not ONE mentioned this medical treatment as a choice.  For me, the only choice given was MTX for the rest of my life, then reluctantly adding Plaquenil when quinine sulphate was pulled from pharmacies for my severe leg cramping (that's a sign of osetoporosis).  He said he would hold out the "big guns" (I am assuming biologics) for later on.  Oh, and a brochure to the Arthritis Foundation.  Boy, that make you optimist when the treatment you are about to embark on is already deemed a failure by your specialist.  After reading about the skin cancer and biologics, I am hopeful that when my rheumy-prescribed treatment of MTX for life and Plaquenil fails, I will be through the majority of the initial AP protocol, and can decline the "big guns". 

Some hope, finally - thanks to all the other APers on the Board for your support, love, and hilarious PMs keeping me going. 

justsaynoemore39325.2622800926

Yeah, the numbers can get really messed up when starting.  The only real important one (says she who was obsessed with the RF) is the LFT's.  That shows how you're prossessing the toxin die-off out of your body and can spike and scare the heck out of docs.  And me!  You know about Milk Thistle so...

Live Long and Prosper!

Pip

.

justsaynoemore2009-06-16 16:26:20 Sufferin' Succatash, JustSayNoeMore, I had no idea you had so much medical issues---well, maybe a bit of an idea. Sometimes I'm bewildered that it can be 2007 and medicine is still mumbo-jumbo-me-don't-know so much of the time.

It sounds like you're off to a good start with AP. I don't want to be a kill-Joy, a no-go-Joe, a stick-in-the-Mud, but I don't want you to get discouraged if you backslide or get weird things going on. AP can be a bit of a yo-yo, I understand, and in some (most) cases the progress is at about the speed of a glacier. But like it's been said before, you slide back but never quite as far back as you were to begin with. So it's good to keep some sort of record you can reference. Geez, maybe I'm talking to myself more than you here, haha!

So maybe you'll just be one of those cases where it's full steam ahead! I notice the Harvard Protocol has less of the yo-yoing than the Brown Protocol for a lot of people. Here's hopin'!

And keep up the good work.

Ohe me, oh my---I almost forgot to say congratulations on your amazing progress so far!!!!! The arm thing is great news. I'm so glad it's working for you after 7 years of pains and frustration
Gimpy-a-gogo39325.5221759259Okay, here's my latest update all about me, me, me....

I reduced my mtx to 15mg about 5 weeks ago and after one week I
started getting into trouble. I was getting pain in pretty much all my
joints except my spine, neck and jaw. Like I mentioned before my knee
and ankle swole up but that only lasted for a few days---well, my ankle
took a little longer. I thought, okay, this came on pretty fast but hopefully
it's a herx. I was being affected in joints I normally have no trouble with,
such as my hips and hands. Some days even my skin would sort of hurt.

Even though I was doing really well on mtx when I decided to give it up
and start AP, I'm not very brave. I am actually a pretty wimpy person so I
was kind of freaking out when the herx or flare went what seemed like on
and on. A few times I considered putting my mtx back to 20mg, but then
I wouldn't really have tried. First, there were other things I could do, like
see a proper AP doc, or adjust my diet more. My weird fizzing detox bath
seemed like a good sign to keep going. Also, I had decided at the
beginning to give each drug change a full 6 week trial before I gave up on
anything, so I persisted.

Also, I usually swim about twice a week for exercise WHICH REALLY
MAKES A HUGE DIFFERENCE in how good I feel, but the pools have been
closed for almost 2 months here because of a civic strike, so I've
barely had any excercise, which I'm sure contributed to my unwell being.

One thing I noted through the whole herx or flare was that yes, I was
having pain, but I wasn't having any other of the RA hallmarks of
discomfort. No visible swelling, no depression, and no fatigue. I have
been plagued by depression and fatigue when my RA was not controlled,
so I took the absence of these as a sign what I was experiencing was a
herx, rather than a flare. Also, like I said in a different post, a few people
commented that I was looking weller than they had seen me for a long
time, and that i was energetic, too.

Anyway, about 5 days agp I woke up and almost all of the pain was gone,
and so far it's stayed gone. And during these five days I have overexerted
myself, not had nearly enough sleep, and still haven't excercised. I'm not
doing perfect and there's still room for improvement, but overall I feel
better and better on this AP.

But yeesh, they're not kidding when they say 3 steps forward, 2 steps
back!

Like JustSayNoeMore noted, the encouragement I have received from
others who believe in this treatment (or just well wishers) has been
extremely helpful and I want to send out a thank you for that!


Gimpy-a-gogo39339.4841435185

5 whole days!

You go, girl!

Hugs,

Pip

.

justsaynoemore2009-06-16 16:28:33

I'm a bit strapped for time today (just got 63 student essays to grade ), so Ill admit that I've only read the title and first post of this thread, but I am up for anything.

The one recurrent fact I've read about RA is that so much about the cause/reasons for onset/cure is unknown.

From July 2007 online article in Medical News Today: "RA is the most common form of inflammatory arthritis and costs society more than $80 billion each year. The disease affects more than one in every 200 Americans. However, research funding for RA averages as little as $25.90 per patient and remains significantly low compared to other chronic diseases that affect far fewer people like lupus, diabetes and multiple sclerosis, which average $330.00 per patient."

I think it's fabulous that there are so many drugs that are working for people with RA, just as in any disease. But just as biologics have made strides and are described as "wonder drugs," so might antibiotics be the next step given some time. There is still room for improvement if we can haven't reached the cure phase yet, so--as I mentioned--I'm up for anything.

Are there many AP trials occurring? I put the Scammell book on hold at the library, as I'm interested  in reading more about this. 

 

Not many at all.  There's some incredible stuff coming out of Vanderbilt University - I keep meaning to bookmark their PR page.  There's some good research coming out of Israel and England too.  But for the most part this is something nobody is interesting in pursuing.  The Mira Trials only happened because of some concerted politicking by the Roadback. 

Sadly, I've come to the conclusion that nobody wants to 'cure' this if it would interfer with a revenue stream. 

Even that study that GoGo posted that showed that UofM was able to prove that microbes tunnel into white blood cells was looking for 'therapies'.

Pip

Okay, so yesterday was my third Sally Field Boniva day (if you see me flying around in a nun's habit, shoot me down, please), and again I have to admit the first 24-48 hours afterwards are incredibly hard to go through.  You can feel this deep deep deep bone pain, its hard to describe as I have never had this before, but I know it passes.

So I do a fizzle bath this afternoon and when I got out, all my inflammed areas were just bright red, the usual ones, and then for the first time, the ones that never have any reaction.  My lupus mask and scarf were apparent, that' not new.  But the spot under my right breast bone that then burns through to under my right shoulder bone were visibly red for the first time.  This is what I went to urgent care for in 2002 - this just sudden slamming pain into my chest, and no one could ever figure it out.  EDIT:  the diagnosis was depression, so I have the strongest case of depression ever recorded. 

I hope it means its dying off and moving out.  GoGo - pages 291-293 of The New Arthritis Breakthrough refers to thalidomide, and my mother took diethylstilbestrol for miscarriage while carrying me, which is now linked to autoimmune disease.  It's all coming around in a big circle for me. 

justsaynoemore39342.488125

Cathy -

Congratulations - you are only the second person besides me to say they 'got' depressed on AP.  This makes us a statistical sample of two.  :-)

If it doesn't lift within 48 hours you need to make some choices.  Talk to your PCP and see what she thinks.  1) drop back your dose some so your body can process the toxins.  2) if you're on an AD - think about raising the dose to compensate.  If you're not on an AD I don't know if getting on one will help.  My depression was vast and lasted 7 1/2 weeks.  It takes about 6 weeks for optimum syrum levels on an AD.  So...your call.  3) use the whole lemon/olive oil drink 2 X a day as a toxin reliever and flush.  Are you on milk thistle?  4) have your hubby recognize warning signs.  My hubby realized my depression was dose related so he started following me around and making silly faces and 'fake crying' when he'd find me crying for no reason.  I'd still be crying but I'd start laughing and it felt better for a while. 

Hope you feel perky again soon!

Hugs,

Pip

Some of the newer antidepressants start to work in a week or two.  Paxil and Zoloft, for example.  Omega-3 fatty acids (fish oil, flax, etc) have also been shown to help with depression, so perhaps you could try to eat more omega-3 rich foods or take supplements.  Cognitive therapy helps too; anti-depressants are like training wheels.  You still have to learn to ride the bike.
Pip, Jasmine, fellow posters, I owe an apology.  I was referring to my six year diagnosis of "depression" causing that slamming pain in my chest, pancreatitis, an inflamed diseased gallbladder, etc. etc. etc.  I knew it wasn't "depression", but I had it so bad one GI specialist after doing a endoscopy and colonoscopy wanted me to see his "friend" in Sarasota to do an experimental biopsy of my pancreas (which had a hot spot on the MRI, now gone) for cancer.  That's pretty powerful depression.  I know there is a clinical depression attached to Hashimoto's which was diagnosed in 1990, and so does RA et al.  I have a wonderful psychotherapist and am also a recovering alcoholic with a great group of support people.  I definitely was down last week, but this week I am perking back up.  Thanks for all your concern and I am going to speak to my rheumy on two points the end of the month (actually 3, I am on minocin now) 1) why you never offered any pain medication; and 2) depression RX to help with the pain.  I know that rheumatologists are MDs and can prescribe anything, but so far, four rheumatologists and not one has mentioned pain control - its only been depression, steroids, chemotherapy, malaria-based drugs, and folic acid.  All infections go to my primary.  Very strange.  Pip, GoGo, everybody - this minocin is working :)  Hey JustSayNoeMore, I thought you were saying you were depressed to be
sarcastic because your doctors diagnosed your mystery conditions as being
"depressed". I didn't realise you were really depressed! Depression doth
sucketh. If you have to take more meds to deal with it, then you have to, but
I find it's good to exhaust other avenues (at least for me). I don't want to
trivialise depression---I know first hand how serious it is---but exercise
can alleviate much of it. Also, I found on AP depression was my first
condition to lift. I hope you feel better soon.

I'm on day 8 of feeling great! If this continues in one more week I'll decrease
my MTX again. So I think the minocin is working for me, too.

GoGo - depression is a symptom of RA, I have been depressed at times in my life, but I sure know a true depression from just being off for the day.  I feel great.  I was depressed, so deeply depressed I could convince medical doctors not to believe their own blood work and order unnecessary procedures for mythological diseases.  LOL 

The minocin is working, and I found that reference to TB-similarities in the book.  I was so desparate two years ago that I took myself to public health and got tested for TB because it was the only thing I could think of that was causing this chest/lung pain (and lived in Alaska for 43 years which has raging TB in some villages), and being told it was just my incredibly powerful depression.  And it was negative for TB, so I went back to being depressed :)  But I am reading a link between TB and RA on a cellular level - fascinating stuff - I need a life.   

So yesterday and so far beginning today, I feel great.  Bounced right out of bed, which was my usual start until a few years ago.  Feel full of energy and I have a big day ahead, and none of the usual dread that at some point I will fall apart and finally have to give up on whatever project I am doing and rest.  And if I have to, I will, as I am working on the acceptance part of this disease.  I sure hope I am past the anger part :)  And I didn't have the dry skin feeling (but the skin felt fine to the touch) after this third fizzle bath.  I am starting to enjoy them once I was convinced my skin wouldn't melt off or something.  I really have too weird of an imagination. 

I will say that this Boniva for osteo is the most powerful drug I have taken orally.  It's like the opposite of what I was feeling before diagnosis and felt my joints being eaten up from the inside and couldn't get that across to a doctor.  Now I feel the Boniva in the bones.  I thought bones didn't have feelings?  I just had a flash on a new teeshirt "Bones Have Feelings Too".

I am convinced this minocin is working.  I am almost finished with my second full month on the antibiotic.  I finished the Arthritis book last night and am just blown away at how this has been kept quiet by the AMA and ACR, just like the findings for ulcers being bacteria, not stress.  And the stats on how doctors are still not treating ulcers with antibiotics was unreal, decades after the findings.  I plan to re-read the Arthritis book with a highlighter and pull out about four gems I found that pertained specifically to my disease process. 

And whomever recommended the Zen Suffering book, thank you.  I started it last night, and can see its going to be a huge contribution to my mental, emotional, and spiritual well being.

Take care everybody ~~ Cathy

Cathy: I got a TB test (while pregnant) and I have often wondered if there was something in that that sparked the RA.

Hmmm...

Take care, Karin

So, I haven't been doing so well the past 48 hours, and couldn't figure out why.  Finally took my temperature and it was 97.  I was shaking with cold again, so I finally gave in and went to bed hugging one of those long heating pads and just shook until it finally stopped.  Woke up dripping with sweat LOL.  I haven't had a cold episode like this in months.  I always wonder about this because I thought RA had a fever attached to it and I am always subnormal.

But I know exactly when I slipped into this mentally, it was last night after attending a health and wellness seminar put on by my "Mad Hatter" colonic irrigation massage therapist, and three other of his colleagues, one who is an medical doctor doing human growth hormones.  I had a very good time, learned alot, not bad for four amateurs, and I wasn't expecting Oprah or something.  Anyway, afterwards, two women who are involved and sat in the very back came up to me and just ripped the seminar to shreds - too long, boring, terrible speakers, worse thing ever.  Well I have been to awful seminars where I paid money, and this one was free.  I just said the people around me up front seemed to enjoy it.  I just don't understand people, and I let their negativity hit me.  Almost 60 people attended, that's huge.  My husband came too, of course, with some grousing, and he was bored by the whole thing which didn't surprise me, but he did say he thought the ionic foot baths sounded good.  His birthday is around the corner, I smell a gift certificate.

Anyway, I went back and reread the basic symptoms of RA and MCTD and there I was again in print and I had to remind myself I still have this stuff, even though I have been doing so much better.  Ever since I took that Boniva last Saturday I have had my first real bout of stiffness, everywhere.  I am having serious second doubts about this one.  I asked hubby to bring home another load of hydrogen peroxide and I plan another fizzle bath as they sure help.

I guess this is a herx.  What a word. 

justsaynoemore39346.7667013889

Hugs,

Pip

Okay, so today I had the first really wild change.  A couple of days ago all the tips of my fingernails peeled off a layer.  Since I starting getting sick about 7 years ago, I had noticed my usually great nails were ridging and knew that means disease.  So, suddenly every tip at the same time, the top layer peeled off, then yesterday I noticed the nails were just clear, and bright and the ridging had disppeared.

About 10 years ago I started coloring my hair to cover the graying that suddenly started because I am one of the lucky ones, and have always had a huge great head of brunette hair that as my husband puts it "you never have a bad hair day, you come out of bed with gorgeous hair".  I digress, but I had never colored my hair before this.  So, when I was diagnosed with "the lurker" (thanks Pip, perfect name) I read it wasn't good to dye your hair, so I stopped.  And let my hair grown long for the first time in decades.

And was it gray, I knew it was graying, but I was a little shocked at how much had turned gray, but I am 51.  And the gray hairs are all wirey and stick out, but I was so sick I could give a hoot anymore.

So today I saw my chiropractor, who has stuck with me through this whole ideal (he was the w/c chiro I was assigned 7 years ago).  He was getting ready to adjust my neck and he said, your gray hair is gone.  I said what?  He says your hair is growing in brown again.  I was like what?  The minute he left after the appointment, I looked in the mirror and the damn gray is going away.  And I felt my hair and its not dry and brittle anymore, and you can see the color coming back in about an inch now from the roots.  And the gray that's still in there isn't wirey and sticking straight out, they have gotten soft and are disappearing.

This is amazing. 

 

justsaynoemore39353.3159606481

Ok, that is the weirdest thing I've ever heard.  I'd post that on the RB and ask if that's happened to anybody else...but I'm guessing 'no'.  Not that I wouldn't like that to happen.  The only reason I have soft hair now is the Folic Acid I'm taking.  And that took months to get there.  And my 'greying' is now more 'white'. 

God, I hate feeling 'old'.

GoGo, any other APer's - any hair changes? 

Pip

You can't really use me as a case sample because I'm on too many drugs! My
hair is falling out from the 15mg of mtx I'm still on (planning on 12.5
starting next week if i continue to feel so groovy!) and it's also turning blond
from the plaquenil.

I was planning on posting that the minocin has given me about 20 new
freckles, though *internet smiley*.

PS...those ionic foot baths are crazy! I've seen one done. I'd like to try it
myself sometime.Well, it will be interesting if my teeth turn back to a decent color - they suddenly turned gray when my hair turned gray and my nails went bad.  I showed all this to my primaries (lost count), but it was my depression.  I have the strongest case of depression in the entire history on mankind.  It's been amazing what it has caused to happen to my body.  justsaynoemore39353.317662037

GoGo - the ionic foot baths are amazing.  Mine always immediately go to orange (joints/calcium), then finally black, then black flecks, which supposedly is the heavy metals being pulled out through the pores of your feet.  I don't go to any of the other colors for other diseases.  And man, do your feet feel good afterwards. 

My "Mad Hatter" who does these said he had one guy pulling out pebbles of heavy metal from the bottom of his feet and it turned out he worked in construction most of his life and of course that was before masks, etc. 

PS  I wish I didn't have to edit every post for grammar.  My brain cells are fried.  More depression. 

justsaynoemore39353.3212615741I don't believe aspartame is banned in Europe.  Here's their food safety website:

http://www.efsa.europa.eu/EFSA/KeyTopics/efsa_locale-1178620 753812_Aspartame.htm

"

Aspartame is a low-calorie, intense sweetener. It is a white, odourless powder, approximately 200 times sweeter than sugar.

Aspartame is used in a number of foodstuffs such as drinks, desserts, sweets, dairy, chewing gums, energy-reduces and weight control products and as a table-top sweetener throughout the world. The sweetener has been authorised for many years in many countries following thorough safety assessments.

The sweetener and its breakdown products have been a matter of extensive investigation for more than 20 years including experimental animal studies, clinical research, intake and epidemiological studies and post-marketing surveillance. Aspartame was found to be safe for human consumption, a conclusion which was reconfirmed in the review carried out by the Scientific Committee on Food (SCF) in 2002 .  

In 2005 the Ramazzini Foundation in Bologna, Italy published findings of a new study on the carcinogenicity of aspartame carried out in rats. EFSAs AFC Panel assessed the study and findings of the Ramazzini Foundation and adopted an opinion."

Jasmine

Mercola thinks Aspertame is the root of all evil.  Seriously, he wrote a book about it.  My thoughts - It's fake so it can't be good for you - but I doubt it's as bad as Mercola says.

Pip

[QUOTE=Pip!]

Jasmine

Mercola thinks Aspertame is the root of all evil.  Seriously, he wrote a book about it.  My thoughts - It's fake so it can't be good for you - but I doubt it's as bad as Mercola says.

Pip

[/QUOTE]

Betty Martini is another anti-aspartame tyrant.  Personally, I've never liked the taste of it, but I've never seen any reputable scientific evidence that it causes everything from autism to colon cancer like some claim.  I even worked at Nutrasweet back in the 90's - I was the only one who didn't drink Diet Coke/Diet Pepsi.  They all looked at me like I had three heads.

LOL

Pip

I've never touched the stuff. My belief is if you need a factory to make it
there's no way it's healthier than the thing that grows from the ground, that I
could make with no electricity if I have to. That's why I eat butter instead of
margarine, too.You know, there's more methanol and formaldehyde in your average 12-oz glass of juice (especially if it's not extremely fresh) than there is in a 12-ounce can of aspartame-containing diet soda.  Some of the claims of these people just floor me.Really? But my juice container just says "oranges" in the ingredients? Is
formaldehyde a natuaral forming gas?

Actually, I hardly ever drink juice unless I just made it in my juicer. I don't
really drink pop, either. Just coffee, tea, water... and alcohol, heh.
Sometimes a bottle of Aqua Libra for special occassions. I like fizzy water,
even though I know it's not that great for you.

Oh, and cream on alternate days. Gimpy, as soon as you pick fruit or make juice from it, it starts fermenting.  Formaldehyde, methanol, ethanol, acetic acid and other stuff are natural byproducts of the fermentation products.  It's nothing to be worried about; the amounts are quite low.  If the levels were harmful, we'd all be quite sick I'm sure. JasmineRain39353.4380555556Well, so I was kind of whining a coiple of weeks ago about how I wasn't doing so great on reduced mtx and AP and then this week I'm on my 7th day of virtually pain free living! Well, my toes hurt for a few hours one day and my right foot toes hurt a wee bit right now, but it is a truly remarkable week. I also just got my lab tests back and my sed rate is 2.

My current drug regime is:

Minocin 100mgIBID (that's twice a day) on Monday Wednesday and Friday
Methotrexate 12.5mg Thursday (started at 20mg)
Plaquenil 400 mg/day

Supplements
Fish Oil, 10,000mg/dayday (equalling 3000mg EPA/DHA)
Probiotics, lots and lots every day
Folic Acid, 5mg/day
Milk Thistle, 450gr/day

I think it's working, Captain!
PS...yesterday I needed something off the floor and was surprised to find myself crouching. It didn't hurt when I got up either. I think that might have been my "aha" moment.

I don't know if any of you have read my journal. A few years ago, under different owners,  this was a cool web site and we could post journals. With the new ownership they cannot be updated anymore so it ends in 2003.

I went off Minocin several years ago and so far so good.

http://arthritisinsight.com/community/stories/gary1.html

Good Lord Gary!

If you make it to 5 years - you're 'cured'.

Everybody oooohhhhmmmmm!

Pip

Higgy, I have read your journal before but IT IS AWESOME to hear you're still
doing great today. I've never believed RA is incurable.

Thank you so much for keeping us updated!Ooooooooooohm

Glad I checked back in here - this is a great and positive thread - thanks Pip. 

After Remicade, enbrel, humira, orencia, mtx, arava all failed me and did some wild and not fun things to my body my rheumy suggested I try AP - he was not all that informed about it so we have learned together but he did get me in to the Mayo and they have been a really big help - one rheumy I saw there told me to sit back and watch because he felt as people informed themselves about AP because of medical cost or personal preference AP would finally be more of a frontline treatment. 

I have been on Minocycline for a year now (okay in about a week) I found my perfect dose so far is 100 mg. MWF - I was taking 200 then 150 and had some problems so 100 works.  I am working 40 hours plus again and can't believe how good I feel.  I can't take any other "RA" meds with it and when I started AP I was on Prednisone.  For me it worked pretty fast - I remember around Christmas thinking wow I feel good, but I thought maybe it was just mind of matter with me wanting it to work and was so sitting around waiting for the other shoe to drop I kind of ignored it - then in January - February had some herxing problems and that's when we started tweaking the med - since then I am pretty much pain free and loving it.  I do tend to over do sometimes and then I may need an Aleve or occasionally have taken a Darvocet.  I recently went to Dallas to meet some friends and I did take my pred and pain pills with me in case - I did great.  Weather changes get to me more than anything so I may take something then if I need to.  My RA was sudden onset and very aggressive - the changes in the last year have been amazing.  I just had my yearly exrays and there was no new damage at all - so the AP is working.   I wonder if the AP worked so quickly for me because I still had the MTX and Arava in my system or if I was just lucky - I am just thankful everyday that it worked!!!!    Sorry, didn't aim to write a book - but it so nice to be able to talk about it with out having to defend it.  Thanks again Pip.  Hugs and good vibes.

OMG!  Mayo!  I am truly amazed!

Congrats and stick around more!  This board is really good about 'healing' and we all pretty much help each other out with all kinds of stuff. 

Hugs,

Pip

aLinB39382.7966898148

Lin - http://arthritis.about.com/od/antibiotic/Antibiotic_Treatmen t_Using_Antibiotics_To_Treat_Arthritis.htm

"According to the American College of Rheumatology, 'Minocycline is prescribed for patients with symptoms of mild rheumatoid arthritis. It is sometimes combined with other medications to treat patients with persistent symptoms of this form of arthritis.'"

All I know is that minocyline is a DMARDS, given parity with MTX, Plaquenil, etc. in the treatment of mild to moderate RA.  I found that shocking to discover a year after diagnosis.

For the life of me, I have no idea why this treatment is not given to us as an option to choose from, instead of being hit hard first by the diagnosis, then secondly told take ________________, which is whatever that particular rheumatologist is comfortable with prescribing.  No discussion of what else is available, what are the options, what is possible. 

I am flabbergasted at the callousness of rheumatologists saying things like: 1) you have RA (plus more for me); then 2) you have to take MTX for the rest of your life; and then 3) prednisone, a highly toxic and dangerous drug, and this is all done in one visit of about 20 minutes.  This is craziness.  I honestly don't know of any other part of medicine that treats patients like this: that we have no choices when that's not true, and it borders on bullying abuse. 

Lin - I hope this drug works for you.  Now I know why using collidial silver worked for me, years before I was diagnosed or even having strong symptoms.  It's an antibacterial.  Good luck and I am sure Pip and GoGo will have more for you next time they log on.  Cathy

 

 

 

 

justsaynoemore39382.772974537

Cathy, I don't fall into the patient category that you described in your post.  I went the AP route as soon as I was diagnosed with RA and unfortunately it didn't work for me.  That was approximately 11 years ago. 

I've had 4 RD's, one prescribed AP protocol, a second one offered it and I declined based on my prior experience with it, the third RD didn't prescribe it, and my most current and last RD I hope, prescribes AP for other patients in his practice.  I haven't found that the AP prescribing RDs are that elusive. 

None of my RDs treated me like you described.  Maybe I'm just fortunate.  I know that I've posted my experience in the past and it's totally different than others on the forum.  I think that people have good and bad responses from their medical treatment and their RDs.  

Am still really curious about my original questions.  Can't quite get my head wrapped around why only one antibiotic is used in AP protocol or maybe there's more and I just don't know about them.  I'm willing to try it as long as I can continue other RA meds and maybe taper the other dmards and biologics.  Lindy 













P

Lindy - I am starting to think my whole RA experience has been totally absurd compared to everyone else's.  I always take my hubby or a friend with me to appointments so I have a witness, because its just plain abusive.  And my husband and friends are just as outraged as I am, but there is nothing you can do.   

ALTERNATIVE An alternative oral tetracycline derivative for RA is doxycycline. It may not be as strong as minocycline for RA although this point is by no means proven. A particular advantage of doxycycline use is its lessened likelihood of hyperpigmentation. Patients who have experienced hyperpigmentation with minocycline can be converted to doxycycline and followed for what hopefully will be an improvement in the darkening and continued arthritis benefit.

http://www.roadback.org/index.cfm/fuseaction/studies.display /display_id/183.html

Lindy - good luck and keep us informed.  Cathy

Lindy, Although it may not be the ideal way, I'm doing AP in conjunction with DMARD/biologic therapy, and I strongly believe it's working. Although I haven't been able to cut back on my Methotrexate or Orencia, I'm feeling much better than when I was on biologic therapy alone. I've only been doing AP since June, so I'm still a newbie at it, but I remain very hopeful!That's me many times confused.  Sulfasalzine is Azulfidine which is an anti-inflammatory drug, not an antibiotic........sorry guys, momentary madness on my part.  Am going to go back and delete post asking questions. Thanks for your help and I still may add AP.  Lindy The Doc's keep telling us that too many antibiotics is dangerous because when we really need them, there will be nothing strong enough.  Is this a concern?

That's OK Lindy! I actually thought it was ME who was confusing my drugs! LOL

Cathy and Brisen, you must think I'm crazy, or I've had too many Vicodin or I'm drinking and I can assure you I'm none of the fore mentioned - just have confused myself.

I did a further search and found that Sulfasalzine is a combination of salicylic acid and sulfapyridine (AN ANTIBIOTIC)

Let's start all over......it's classified as a DMARD.  Is it a DMARD because of salicylic acid (aspirin) or sulfapyridine (the antibiotic) or the combo?  Aspirin doesn't appear anyplace as a DMARD so I assume that it's a DMARD due to the antibiotic.  My original question was why does Minocin seem to be the only AP prescribed for RA?  Can other antibiotics be prescribed and do they work as well?  I just started Sulfasalzine and have a ton of questions.  Thanks again and really I'm not crazy, just confused Lindy

The only thing I really know about Sulfasalzine is that it's used as an anti-inflammatory, usually in conjunction with Plaquinil or one of the other DMARD's. I really didn't know it was a combination drug in the antibiotic family.

Like I said Lindy, I'm still really new at this AP stuff, and learning as I go along. Hopefully, Cathy, Pip, or GoGo can answer your questions.

And we know you're not crazy!

GaleThanks

Minocin seems to be the drug of choice because it inhibits a protein on the slimy-not-really-cell-wall of the critters so they can't reproduce.  Dr. Brown found in experiments that the tetracycline family worked best in bringing the disease under control.  He found the pusling method worked best because the serum levels dropped at around 22 hours so the buggers got lured out of the white blood cells where they were hiding and "WHAM" you hit them again. 

That being said, Dr. Brown has been dead almost 20 years and researchers are continuing with his work.  Some drugs, like Zithromax or the penicillans, work best on the strep myco's.  While Mino did wonders for me my RF is still really high and my strep titers were inching upwards so my AP doc added in Zith to start attacking the buggers that way.

I'm inclined to think that most any antibiotic will help.  The question is how do we get more research into this?

Pip

P.S.  Lin - you said Mino didn't work in the beginning.  Did you say why and then delete? 

Lindy - being confused is an artform for us

Now you have me thinking (bad sign).  I have no idea how a drug gets promoted to being classifed as a DMARDs.  Good research project and the first poster with the correct answer gets a cyber-^5.  I would venture to guess it is labelled a Disease-modifying antirheumatic drug because it was proven scientifically to modify rheumatic conditions?  We know aspirin doesn't work, so I guess that does narrow it down to the antibiotic properties. 

I also don't know why minocin works, even though I have read the books.  Perhaps because it fights mycoplasmas, not bacteria or germs?  Its original usage was for acne.  I wish Pip and GoGo would stop messing around living their own lives and get in here ASAP - ROFLMAO. 

Now & then - your question is great.  I am 51 and my family practitioner when I hit her up for this treatment (because I knew the rheumatologist would refuse) said at your age and you are suffering, who cares?  Not a great answer for a younger person, but it was a great moment in alot of bad doctor moments for me.  I do know the minocin does not cause yeast infections easily like other forms of antibiotics, if that helps at all.

Lindy - I have seen Sulfasalzine listed on many posters signatures as one of the drugs they take, and have been meaning to look at it, and will make a point to now.  Perhaps another poster taking Sulfasalzine can help you out here. 

And a quick update on Month 3 of minocin - the inflammation in my hands suddenly reduced so much that both my wedding ring and my other ring on my right hand just fell off yesterday.  I couldn't believe it.  It just finally hit me that RA is a disease of INFLAMMATION.  I can be so dense, I hadn't even realized how swollen my hands have been because I had this condition for so long before diagnosis, I didn't even realize they were swollen.  I thought my hands were normal, and they do look normal.  This latest development really has hit me hard to integrate.  How could a rheumatologist not even first TRY antibiotics for INFLAMMATION, instead of going straight to the hard drugs?  Or at least incorporate antibiotics with the hard drugs. 

Don't be confused, be happy you are in a forum for people with a confusing disease!  Cathy

.

justsaynoemore2009-06-16 16:34:56

Pip, I can't remember if I was on AP for 6 months or a year.  I think it was a year.  I got no better, in fact worsened to the point that I was hospitalized, IV steroids, etc. and sent home to begin new therapy.  After 6 months of MXT with no signs of improvement I went off everything and slowly got better.  After 6 months I felt almost normal and went into denial big time for many years until (drum roll please) the flare from hell hit and guess what, I'm still dealing with it.  Felt really good for several months on Remicade and MXT and a flare has hit me in the last month and is progressively getting worse.  Nothing seems to be helping.  RD increased Pred., added Sulfasalzine, and is changing biologics to Humira.  I start Humira on Sat.  Was curious as to why Sulfasalzine is considered a DMARD and feel it must be because of the antibiotic component.  That's why my questions about AP and Sulfas.  If you come up with anything let me know.  I'm going to question my RD closely the next time I see him. Lindy

 

Now and then -

The antibiotic resistance question is one of the things thrown out to discourage people from trying AP.  The fact is, Minocin is a 3rd generation tetracycline that doesn't work in the same way most newer classes of antibiotics work.  The newer ones are more of a 'slash and burn kill anything in there' type.  The older antibiotics like the tetracyclines worked by inhibiting a protein. 

It is highly unlikely that you'll get a major infection and the only drug to save you will be a 40-50 year old off patent class drug that is commonly prescribed for acne.  :-)

I have some questions that I can't seem to answer.  The older drugs do not seem to have 'antibiotic resistance' yet but have been around years and years.  Why is that?  I mean, you never hear dermatologists saying "we can't treat your acne with that because acne is resistant to Minocin".  So, why are we seeing these antibiotic resistant strains for the newer class antibiotics.  Is the problem only in bacteriostatic drugs?  Or only in bacteriolides? 

Again, something I cannot prove, but I'm betting the problem is in the design of the newer drugs - and THOSE are the drugs that breed bacterial resistance.

You'd think we could get a microbiologist with RA to hang out on this board.  How do we advertise - Microbiologist with RA needed! 

:-)

Pip

Lin -

Were you on probiotics the first time on AP?

Pip, just found this:

Mechanism of action

Sulfasalazine is cleaved in the colon by bacterial enzymes to release acetylsalicylic acid and sulfapyridine. The method of action of sulfapyridine is unclear but may involve inhibition of the transcription factors which are increased in inflammation.

No probiotics, just Tetracycline or Minocin.  Don't remember which.  Lindy

[QUOTE=justsaynoemore]

 I do know the minocin does not cause yeast infections easily like other forms of antibiotics, if that helps at all.

[/QUOTE]

Cathy - I don't know where you got that.  Have you seen any research on that.  I suspect we have serious yeast/gut issues to start out with and when AP fails, it tends to be probiotic based.  JMHO

Pip

Oh sweetie -

If I had to place a bet - I'd bet the farm that's why you got so bad on AP.  When I forgot my probiotics for just 6 weeks I felt bad in my hands and feet.  It took forever to get back on track and I suspect I'm still dealing with it inside.  When you were in the hospital - what did they do?  Did anybody think you might have an out of control yeast infection?  Do you have your chart or any of the tests they ran?  Because if they put you on steriods - then the MTX - and the biologics - if you have an underlying fungal infection - of course you're getting worse. 

Pip

[QUOTE=Pip!]

Now and then -

The antibiotic resistance question is one of the things thrown out to discourage people from trying AP.  The fact is, Minocin is a 3rd generation tetracycline that doesn't work in the same way most newer classes of antibiotics work.  The newer ones are more of a 'slash and burn kill anything in there' type.  The older antibiotics like the tetracyclines worked by inhibiting a protein. 

It is highly unlikely that you'll get a major infection and the only drug to save you will be a 40-50 year old off patent class drug that is commonly prescribed for acne.  :-)

I have some questions that I can't seem to answer.  The older drugs do not seem to have 'antibiotic resistance' yet but have been around years and years.  Why is that?  I mean, you never hear dermatologists saying "we can't treat your acne with that because acne is resistant to Minocin".  So, why are we seeing these antibiotic resistant strains for the newer class antibiotics.  Is the problem only in bacteriostatic drugs?  Or only in bacteriolides? 

Again, something I cannot prove, but I'm betting the problem is in the design of the newer drugs - and THOSE are the drugs that breed bacterial resistance.

You'd think we could get a microbiologist with RA to hang out on this board.  How do we advertise - Microbiologist with RA needed! 

:-)

Pip

[/QUOTE]

http://jac.oxfordjournals.org/cgi/reprint/45/6/763



Well, there goes that theory.

It does say this is the first time that Mino and the tetracyclines have been documented to 'cross-induce" resistance to each other in TetM-positive S aureus isolates in vitro.  This was 2000.

Pip 

I think the main reason the newer antibiotics are breeding more resistance simply because they are used more frequently.

But they went first according to what I've been reading.  I just thought it was the mechanism.  There was a really interesting article in the LA Times on this really harmless bacteria that caused military soldiers to hemorhage.  Still, if the tetracyclines are under attack now, I'm not willing to give mine up.  Sorry.

Pip

http://www.latimes.com/features/health/la-sci-bacteria30sep3 0,1,4190005,full.story don't forget to look for spaces and retry if the link doens't work.

Never asked you to give it up; just wanted to show that there are risks with everything. Hi everyone, This is the first time I've posted on this board and thought I'd just jump in here. Of course there is risk in every medicine! But I've noticed that after I talked my Rheumy into giving me Minocycline that I don't have to go in and see him as often or get my blood work done as often, so I'm assuming that he thinks the risks are less than some of the other drugs. That said, the reason I opted for Mino is because everything else I tried I had bad reactions to, including having to go to a cardiologist with suspected chemo induced congestive heart failure when I was on Methotrexate. Something Pip didn't mention about Mino is that it also modulates the T cells in the immune system (thats how most Rheumys tend to think it works) and that there has been research on it being a mild antidepressant. After all the research I've done, I tend to believe Mino works by both getting rid of cell wall deficient mycoplasma and modulating the immune system.
Hope you don't mind if I go back to the orginal intent of the thread. I have active RA in most joints from jaws to toes, plus where my ribs connect to my spine. I've been on Minocycline now for six and a half months. I had steady improvement for the first five months. Less fatigue, fewer fevers,not as depressed, less pain. Then things started to flare (flare or herx?). Last month has been really hard to deal with. My jaws were so bad I lost 15 lbs from not wanting to chew my food.(not a diet plan I recommend) Although, thinking back not as many parts are as painful as before starting Minocycline, so there is hope. The truth is there are days I want to call the Rheumy and tell him to put me on something else, but then I think back to the problems I had with other drugs, and how far I've actually come and I don't call him. The only way I can describe the progress I've had on Minocycline is to compare it to a stock market chart, with its big spikes and dips, but if you look at it over time there is improvement. I hope this is kinda what you had in mind for your thread Pip. Sorry if its not.
Take care,
Shannon
Yes, minocycline is less risky to the individual than the "traditional" DMARDs... but widespead, longterm use of minocycline (or any antibiotic) will breed resistant microorganisms.  This is a risk for the entire human species.

Just something to think about, that's all.

I actually thought I'd found a board where everybody could discuss their treatments. Oh well, now I'm contributing to the demise of the human species. I have enough problems right now. I'm out of here. panda39383.3871412037 [QUOTE=panda] I actually thought I'd found a board where everybody could discuss their treatments. Oh well, now I'm contributing to the demise of the human species. I have enough problems right now. I'm out of here. [/QUOTE]

Gee, I thought we were discussing treatments.  If you had actually read some of the posts around here, you would see that minocycline is one of the options I plan on discussing with my rheumatologist in November.

One of the posters expressed concern about antibiotic resistance; another poster said he/she didn't think that microbes developed resistance to minocycline.  I was posting information showing that it does happen in some cases.

I don't see how that's a bad thing.

.

justsaynoemore2009-06-16 16:35:51

.

justsaynoemore2009-06-16 16:36:37

Hey Panda!  (Love the name!)

In Scammells book it's mentioned that there were no known cases of bacterial resistance to tetracyclines.  But that was in like 1989-90.  If this is true, then we do have to consider bacterial resistance.  Actually, it would be a greater concern for the people with suppressed ummune systems, but we have to think about ALL aspects of our care.

Jasmine rocks!  She's great with research.  You don't have to worry about 'defending' yourself here, we've all just agreed to 'live and let live' and we're all just trying to heal. 

And, just to harp on my favorite topic - you are on a LOT of probiotics, aren't you?  I didn't know how important that was until I started to 'backslide'.

Hugs and please stay!

Pip

Hey Jasmine!

I know what Panda means - when we first go to other boards, darn do we get jumped on.  I keep saying AI is different.

Well, maybe not on politics...LOL

Pip

Cathy, the article you posted was exactly what I was looking for.  Thanks for your help.  Now I have questions for my RD based on that article and what I now know about Sulfasalazine.  Lindy [QUOTE=Pip!]

Hey Jasmine!

I know what Panda means - when we first go to other boards, darn do we get jumped on.  I keep saying AI is different.

Well, maybe not on politics...LOL

Pip

[/QUOTE]

I'm not trying to jump on anyone... even fish oil, my own personal fave, has negative points.

I didn't think you were - we have to know everything about this stuff or we're not going to heal.  But I can tell you stories about some of the boards I've been on.  Heck, think back to some of the free-for-alls we've had here in the beginning about AP.  I still shake my head in amazement about poor Gale who innocently walked into a firefight by some trolling bad guys.  LOL

Pip

.

justsaynoemore2009-06-16 16:41:40 Oh man, I missed all the action on this great thread this weekend (although I did post once and then delete).

Panda, I wish you would participate, because the more I hear other people's stories the more I'm "boosted", and I think that's true of a lot of people. Plus, when you hit barriers people might have good suggestions.

In the intention of the thread I will now post my AP progress: So this weekend I was still feeling good and there were Hallowe'en parties...lots of Hallowe'en parties. Saturday night I went to this thing at the cemetary and walked around, and then I went to a couple house parties. At one there was really good music and I DANCED, that's right, and it was great, so I danced for about 45 minutes but then I started hurting and that has continued until now, so I guess I overdid it with that dancing. But boy-o-boy, I wouldn't have believed it a year ago, that I could dance for 45 minutes one day. And even though I'm kind of hurting it is definately not that bad. And that dancing was fun.

I wanted to post some thoughts on antibiotic resistance: We are warned that overuse, frivolous use, and inappropriate use of antibiotics leads to antibiotic resistant in bacteria. That is a concern, but regardless of whether tetracycline antibiotics are suspect in this, and regardless of whether with all the stronger, newer antibiotics out there these tetracycline antibiotics will be needed to "save the day", the bottom line is I am not using these antibiotics overly, frivolously, or inappropriately. I have an infection which causes me to have a SERIOUS PROGRESSIVE DEBILITATING ILLNESS, and I'm using them for exactly what they're needed for. It's like if someone has an infected cut on their leg that is in danger of developing into gangrene, you don't warn them that if they treat the infection with antibiotics there might be bacterial resistance to that antibiotic down the road, do you? No, you give them the antibiotic.

So to me the whole bacteria resistance thing is not really relevant in my choice to use antibiotics for my RA. There's no point in me not taking them so they'll work for my next serious progressive debilitating illness, or me not using them so they still work on someone elses acne.

Anyway, I just wanted to make that point since it's often not mentioned in this particular debate.

Hope every one is doing okee dokee!
Gimpy-a-gogo39384.528287037

Hey GoGo!

That's fantastic!  I danced last year at a Halloween party - and hubby got all prickly cuz he thought I was going to flare!  Bully!  This year, no dancing as we aren't going anywhere.  Sigh.

You know, I thought of something similar.  I thought, you know you wouldn't tell a person with raging strep to not take antibiotics and 'hope for the best'.  But that's exactly what I DO have, raging strep (and c. pneumonia even tho I tested negative).  I'm taking the ABX exactly for what it was designed.

Pip

GoGo, you went go-going :)  (Only the elders in here will get that one).  That's fantastic, and glad you had such a great time. 

Edited to add that I did another bath Sunday.  No fizzing but my areas of inflammation were tingling inside and afterwards you could look at the palms of my hands and see these pockets of stuff.  And that's what my Mom always told me about my scarlet fever at age 3.  They called the doctor (who came to your home back then) and I was unconscious, and he turned over my hands and said watch - and Mom said they turned bright red.  And scarlet fever is strep and can cause rheumatic conditions.  Mom said he also worked with them to figure out where I contracted it, and because of the incubation period, they decided it was when we went through the Seattle airport through the international section as Alaska wasn't a state yet.  Guess he thought I contracted it from probably someone from Asia.  I never figured that part out, but really thought it was a strange thing to do. 

justsaynoemore39385.1578935185Okay...I STILL don't really understand Herxing. Got back on my Mino after my racing heart stuff. Been on 100 mg 2X daily for about a week. (dumb me didn't write it down!)
So today I wake up and think ....wow, pains are not so bad today. Good day for my sewing. Then about 4-5 hours later, I got sick. I felt really sick, flu like, sore throat, terrible headache, so so tired, etc. Oh and before that for the last 3 days, I have been fighting with ungodly chills! Chilled to the bone and a sweatshirt, sweatpants, and a sweater on top did not help.
I laid down to read my book (Arthritis Breakthrough) and fell asleep for 2 hours. I feel okay now except for some mild throat pain, and a headache.
Oh, right now, I am just eating 4 -8oz yogurts per day for my Probiotics.

I REALLY want this to work!
GrammaKathy, you never know for sure, but that sounds like a herx ro me. I use this chart to track my progress and herxes, and all that stuff you have been experiencing is listed as possible herx reactions (plus there are blank spaces to write in less common ones you might have). This chart is for people doing MP, but it's still very useful for people like us on regular ol' AP. I have had a few herxing episodes of tremendous chills and flu-like stuff.

Apparently after a while you get better at telling what's a herx and what's a flare and what's not even RA related. I can tell sometimes what is for sure a herx, but a lot of times I just don't know. Since you haven't been on AP very long it's probably a herx as you are on a fairly high dose and your body will have a lot to deal with at first.

Keep in mind this is a very slow therapy with a lot of hills and valleys. I have been having a really challenging time with that and keeping these tracking charts really helps me to see the gradual uphill progress.  Keep up with your blood work and x-rays, as well, so you can catch any problems if and when they occur, and don't expect to do everything in a day. This is a lot of lifestyle changes and it helps to approach it gradually.

.

justsaynoemore2009-06-16 16:42:22

Stardate Sunday 11.25.07 15:18 EDT:

So I decided to do a fizzle soak of just my carpel tunnel hands to see what would happen.  I did a hot water soak in the sink basin for five minutes, then added epsom salts for five minutes, then would liberally pour hydrogen peroxide over both hands and wrists, soak for about five minutes, then pour again, three times.  Then I just waited (next time I will take a stool to sit on because my back was killing me, I can never get it just right). 

What I noticed, and maybe when you are in a bathtub of water with just a white candle for light, is that when I had my palms down nothing happened, but if I turned my palms up, little streams of bubbles would come from my hands to the top of the water.  And my hands were tingling all over, just like my feet do after a full bath.

On the AP front, I am into my fourth month of AP therapy using the Harvard Protocol of two 100 mg pelletized caps of Minocin.  I am having alot of trouble trying to remember to take the pill one hour prior to a meal or two to three hours after a meal.  Frain bog.

The best part of the past few weeks is that the malaise, flu, fatigue, the SICK feeling is disappearing and so is the ache in my muscles, which supposedly is polymysitis (sp), or leaking enzymes out the muscles.  It makes you feel like you have the aching flu all the time.  That is gone, just gone, suddenly and its holding.

If I hadn't had this set back with the CTS, I would be doing incredibly well, but I had my chiropractor xray my hands for comparison with the ones he took a year ago and I have no RA bone erosion (yeah the chemo MXT is working), but the osteoporosis is very apparent in all my joints and I know have bone rubbing against bone, which is causing the hand pain right now.  A double whammy with CTS from inflammation and bone friction. 

Captain Coxy, signing out. 

 Well Captain Coxy...in reviewing your starship data I find that this  progress report is 2.9 centigrade west and 6.4 centigrade east on the upscale of thumbs up. Will expect numbers to be cohesively parallel in 2.2 weeks or 12.15.07 whichever comes first on Alpha Centariun. Well done ...Over and out Captain....oh and I almost forgot....Beam me up Scotty!

.

justsaynoemore2009-06-16 16:42:46

Congrats Cathy - glad to hear you're going boldly where no RA/SD/etc. person has gone before!  Keep putting one foot in front of the other! 

Today marks my 15th month on AP.  To celebrate this long weekend I've shopped til I dropped.  Seriously, I am darn disappointed on the Christmas selections in this area.  I have a friend visiting and all I've been able to do is drag her from one mall to another.  Got to walk off all the Thanksgiving food someway!  Been to 3 different malls from top to bottom and anchor store to anchor store.  I've been up and down the Promenade.  Walked the entire Pier.  Walked a couple of miles down Venice Beach.  Had an 'only in California moment' when passing stores blaring Prince to stores blaring 80's punk and the percussion band playing a souped up rock version of California Hawaiian hula drums were overridden by the chanting Hari Krishna's coming down the boardwalk with full regalia and cymbals. 

I LOVE LA!  It was the perfect after Thanksgiving moment!

Hugs,

Pip 

I feel so damn good this week, I just have to say

I
AP
...assuming that's why I feel so great. Darn my habit of mixing up therapies. Well, I feel so good I just won't change a thing! (Until next week when I put my MTX dose down to 10mg). Oh...the roller coaster...gettin' back on....

Down to 10!!!  You're booking right along!

Yeah!

Pip

I know! Eat my dust!
Seriously, I knew it would be slow going but who could ever anticipate this
slow? But at least my plan is working out so far.

No, I was seriously happy for you!  I think the last I heard was 15 so....wooohooo!  Wasn't 15 where you got stuck for a bit and had to go back to?

Pip

Pip, I knew you were sincere---it was just so cute that you said I was
"booking" that I had to persue that thought further.

Yeah...I was stuck but then I raised my Minocin from 150mg MWF to 200mg
MWF and that unstuck me. Thanks for making me remember that! I have
been trying to recall what had caused the bit of delay, and that's what it was.
It's working, Captain!

AND you're at the best pulsing dose!  Double wooohooo!

10 mgs on Monday!

Make it so, Number 1.  Engage.

Pip

Somehow I don't see a Captain Pip on the USS Enterprise.  LOL

  Nothing grand here yet. Hands are swelling out of control, damn pain in them is making me so darn mad! Gotta have everything opened for me. Practically cry through loading the dishwasher. Legs ache all the time. Knee/leg pain won't let me sleep.........

I HATE THIS CRAP!

Okay, a nice dark blue for calming, and relaxing. Anyone have RA in the neck? I have a serious "pain in the neck". LOL Not really funny. It hurts like hell, it's hard to sleep well, and there is a huge knot on upper spine; guess its like c1 c2 c3. C2 would be the HUGE knot. It feels like that bone has quadrupled in size! Anyone else have this? I know...go to the RD! I have my appt Dec. 7th. I plan to have her check it.

Hey GrammaKathy! 

I was wondering about you!

What was your start date?  You must be coming up on your 3 month herx from hell.  Maybe you're in it now? 

What's your dose schedule and dosage?  Can you drop back a bit to give your body time to recover?

Also, are you doing the Whole Lemon/Olive Oil drink?  Did you see all the research Happ did on why it works!  It should really, really, really lessen the herx - and I never believed that until my hubby made me drink the damn stuff.  I HATE LEMON.  Makes me gag.

I had the pain in the neck thing.  Where the skull meets the spine.  It's almost all gone now but occasionally I still get a bit stiff.  My AP doc told Karin that that's a sign of severe RA.  But you said C1, 2 and 3.  That whole space?  Did the knot come on with AP - or just made it worse for a bit?

Hugs,

Pip

Lots of questions! LOL Okay, my start of course I did not write down but it was my last appt and we scheduled 2 mos apart this time, sooo, about 2 months.

The neck thing hurts where the skull and neck meet, but that is more of a major headache spot. The HUGE bone is right at the top of my shoulders. I guessed at the #'s. If I rub left to right over the area, it crunches! also, when I lay on my side, there is a definate swelling all up and down my neck from top to bottom. (skull to shoulders) I also have this wierd throat sensation that NO ONE knows what it is! Had every test known to man. it's a mild choking feeling; like something is pushing against my throat from the back. Sometimes, it will make me cough if I turn my head a certain way. YUP! I am strange.

Spine image:

okay. According to this, it looks like it may be C6-7. C7 feels like it has gotten 4x's larger. It's huge. I also have limited movement left and right, but mostly right. It all came on real suddenly I think. I thought I slept wrong. 3-4 days later it was still there. Then I started rubbing my neck one night, and it was all swollen!


What's your dose schedule and dosage?  Can you drop back a bit to give your body time to recover?

200 mg a day. I drop back alot. Always forget or have to skip one or 3 a week. It's hard to take them 1 hr before 2-3 after, and 1/2 hour before laying down.


Also, are you doing the Whole Lemon/Olive Oil drink?  Did you see all the research Happ did on why it works!  It should really, really, really lessen the herx - and I never believed that until my hubby made me drink the damn stuff.  I HATE LEMON.  Makes me gag.
No clue on this one. What this cocktail all about. I like lemon, but mixed with olive oil? YUCK! I have a really heavy gag reflex to nasty tastes.

It's one am. Almost bedtime. 





I forgot to say that the choking thing was going on way before any RA stuff. It's been about 2 years and so far it's "All in my head". Sorry doc, this is real. I know all about anxiety causing it, it's not that. I wrote it off 2 yrs ago to anxiety; it's not. 

I WAS a smoker for 30+ years. Quit 2 years ago.        
Best thing I have ever done.
Hi GrammaKathy! I'm sorry you're not feeling better yet. AP can be really slow and take a long time to kick in, so please don't give up yet! Also, I know I keep saying this but high doses of fish oil have really helped my inflammation incredibly. I'm talking really a lot. But it took 3 months before even that kicked in.

Visiting the roadback bulliten board might be helpful. I don't post a lot there but I check in almost every day. The most inspiring real time story I saw was this woman who kept coming in and saying the AP wasn't working, it wasn't working, it wasn't working. She had had a few pain free days but it wasn't working. She didn't believe in AP but she had tried everything else and AP wasn't working. She switched to a raw food vegan diet and the AP wasn't working. Oh wait,  the AP is working! It's working! Haha!

She is still having serious problems with one finger joint but other than that reports she feels great! (It's weird how there's often one stubborn joint that hard to get under control. Mine is the top of one foot).

My own story can not be an inspiration to you as I started with my RA under control and my whole approach has been to never let it out of control (hence my weaning method), but I'm a bit of a wimp so even when I have a big herxing week or a painful day it's hard to "keep the faith". Fortunately, you don't have to believe in it for it to work. 2 months is hardly anything in AP time, so please don't give up!

I hope you feel better soon.

Have you thought about a kitchen timer and one of those huge pill cases?  That's what helped me in the beginning.  Even now that timer is great in that I'm not skipping stuff.

I pulse - I do MWF 100 in the AM and 100 in the PM.  I think it gives the body more time to get the Mino out of the system.  I think I read the dose lasts something like 18 hours in the body.  And it was weird, as I was getting better I eventually noticed that I was 'nights off' in that T and Th nights I felt good, I'd take another Mino Wed AM, and the cycle would start all over again.  It's easier to see the spread of more and more good nights that way.  JMHO

OK Whole Lemon tastes like a frothy lemonade - assuming you like lemon.  I HATE lemon. 

  • 1 whole lemon, rind, pips and all
  • 1 Tbsp cold pressed olive oil
  • 1 cup water
  • couple of heaping Tbsp's of frozen juice concentrate for sweetness.  I used cherry because I couldn't handle the acid of OJ.
  • Few Stevia grains to taste - (I ADMIT I used Splenda - shoot me!)
  • Into blender and puree
  • Strain thru strainer -
  • Add 1 heaping TBSP lecithin to reverse neuropathy if you have that
  • Drink

Only the top 3 ingredients are required.  The rest is for taste.

How's your state of mind?  Any lifting of the brain fog or depression?  That's usually the first to improve?

Hugs,

Pip

P.S.  Thinking about the knot - I had something similar that eventually went away.  I thought I'd slept wrong but it was the PRA.  have you tried heat pads?

D'oh! I forgot to add the Lemon/olive oil drink recipe...thanks Pip!

I second it tastes like a refreshing, frothy lemonade. I only use lemon, olive oil and water in mine. My Traditional Chinese Medicine practitioner just clued me in to the amazing antimicrobial benefits of honey, though, so if I ever feel like the drink is not sweet enough I might add that. However, I find the drink quite palatable as is.

I also second that my depression was the first thing to lift on AP, with fatigue following closely behind.
Well, its hard to say because they got me taking a bucketload of anti depressants! LOL. BUT...I have noticed it is not as bad. I also am back to a more normal sleeping pattern. 8-9 hrs instead of 11-12.
I still have some days I play catch up and can't get out of bed or I want to nap after 3 hours.

The pain in my hands and legs is increasing. I guess that's a bit normal though. 

OH...I do visit RoadBack quite often, but never really find much to help me, so I always come here looking for you all. 


GrammaKathy39414.9501388889

I like the Roadbacks' info on natural treatments to supplement what's going on with AP.  Anything that kills those buggers is OK in my book! 

Ooooh, I did that 12- 14 hours a day of sleeping thing.  I've rewound enough to be back to my old sleeping patterns - but unfortunately that's no good either.  I sleep about 7 hours a night and wake up too easily - like if the light goes on with the neighbors garage space.  I've been out searching for sleeping masks GoGo mentioned but haven't found anything I really like yet.  I want to try them on but if I don't find something soon I'm just going to order the stuff she and Happ found online. 

Yeah, the increase in pain is normal.  You are taking huge amounts of probiotics, aren't you?  My pain got worse when I skipped that and it takes too much time to get back up to speed when the gut flora gets too low. 

You might consider doing the MWF thing.  You'll still heal (I promise) but you get more of a break and if you need to skip a dose to control the herx it's easier that way - less in your bloodstream at any one time.  There were 2 times I didn't want to herx so skipped a dose - both around the Holiday's last year.  It worked.

Hugs,

Pip

P.S.  My first "Ah-ha" moment was when I could open my milk jug again for the first time.  After that moment I just hung on as I knew it was working.

.

justsaynoemore2009-06-16 16:44:00I am currently on 10mg mtx/week (from 20), 200mg Minocin MWF, and 400mg Plaquenil/day.

I just got back from my RD who I haven't seen for 6 months (my fault). She said she can't find any inflammation or arthritis, and that my sed rate is still 2 (it was only 17 at DX). She said I'm doing as good as can be expected, and that people generally never do any better than I'm doing. (I believe I can be better than this as I still have bad days and I still get areas of focal pain, plus I am sort of weak. I fully expect I will continue to slowly improve, but this is still encouraging results so far).

She has a few other patients doing AP and I asked how they were doing. She said the ones who started it really early on seem to be doing fine, but one or maybe 2 had to stop because of skin discolouration issues.

I asked for some x-rays to be sure I wasn't sustaining any new joint damage, so she requisitioned some. I will post my results here when I get them.

So so far, so good, clinically speaking! When I get to 5mg MTX I will just drop the MTX after I finish herxing, since this is the lowest dose that has any effect.

Then I will start on the plaquenil.

.

justsaynoemore2009-06-16 16:44:27

GoGo -

Correct me if I'm wrong, but I thought you were her first patient?

Pip

Edited to say:  CONGRATS!

Pip!39419.7900810185Pip, no, she just isn't "into" AP. She already had a couple people on it when I went on it. At first she discouraged me from doing it, but as I was well informed and insistant she went along with it. At the time she said she had a few patients trying it and that she's a lot more open minded than she used to be. Which is a good thing because she does a lot of research around these parts. Okay, 2 1/2 weeks ago I reduced my MTX by a further 2.5 mg, from 12.5 to 10, and I think I'm herxing a little bit right now but I went to a Christmas party last night and I danced again and all that happened was one hip hurt a little bit on the outside. I'm still getting twinges and moments of localised pain but my improvement since beginning this journey is astounding!

Thank you, AP!

Last year at this time I was on AP only over 3 months - and I went dancing too!  It was so much fun!  I was dancing with my daughter and all her little cousins and showing them how to 'hustle' and some basic dance moves!  It was hilarious - until my husband got all cranky and made me stop.  Something about getting the 'flare from hell' the next day.  Whenever he'd leave the room, I'd start dancing with the kids again and they'd all try to look innocent when he came grumbling back! 

Guess what?  I danced most of the night (until he sat on me) and DID NOT flare the next day!  It was heaven.

Pip

.

justsaynoemore2009-06-16 16:45:03So my-going-down-to-10mg-mtx "flare" happened right on schedule (herxheimer reactions are getting so predictable these days!). A few days in I mentioned to BF I was in a herx or flare and he said "this is the first I've heard of it" and I said "a year ago if I felt like this it would have been a 'good day', now it's a 'flare'"and as soon as I said it I realised how true it was and what it meant. (I did have yesterday when my foot was so bad I was linmping in the morning. First in, last out).

So I am seeing slow improvement. I still have problem spots like my foot and my knee gets "twinges", and I feel kind of fragile like if I really pushed it I could make things hurt, but my twinge spots are getting less in number and my good days are far outnumbering the bad.

I am eyeing gluten free and other RA diets with interest. I have a friend who is gluten free and dairy free and is the most amazing cook you ever did meet, so she's inspiring me that gluten-free does not equal deprived. It's just learning a new way to do things.

I have really increased my probiotic intake through diet and supplements and I think that's helping as well.
200mg Minocin MWF, 10mg mtx/weekly, 400mg Plaquenil/daily,
10,000mg Fish Oil/daily, Probiotics

RA 20 months, AP 10 months


Yesterday I washed my hair and afterwards there was a normal amount of
hair in the drain, NOT handfuls of clumps of hair like there have been
since I started mtx.

This is great on it's own, but it also confirms (for me at least) that my
pains last week were all mild herxing reactions and that the 12.5mg mtx
is washed out and I'm down to level 10m. That's half of where I started,
and I still feel better than I did pre-AP.

Oh how I hope this trend keeps up!

Congratulations!!!!  What a great news for the holidays!!

I have a couple of questions (I apologize if the answers are buried somewhere in this long thread!) - First, have you reduced the Plaq dose any, or is your goal to reduce mtx, then Plaq?  Second, have you always been on fish oil, or did you add it when you started AP?  Just wondering how much 'credit' to give it in your successful equation.  Thanks for sharing this and your good news!!!! 

Suzanne, my plan is to get off the MTX completely and then start working on the plaquenil, and I have used fish oil since almost diagnosis (it works great on my inflammation), but I still think it is an important factor in my equation.

My RD is funny (in a haha kind of way). She's okay with me steering my medical ship because as she says "you have a plan". She also said a lot of her patients were already on "AP" because they take Plaquenil of Sulfalazine and those are both antibiotics. It's not quite what we think of as AP but at least her brain is going in the right direction!

Christmas Day was my 16th month aniversary since starting AP. 

Last year I felt so good compared to where I was when I started only 4 months earlier, that I felt almost 'normal'.  I was able to do all the Christmas-y things needed for a 5 year old.  I was able to string lights and get up on the roof and stuff turkeys and make Thanksgiving dinner for 16 and wrap presents and...the list is endless.

What's so amazing to me is how much better I got over the last year.  I didn't think it was possible to get much better...and am pleased to report that the improvements keep coming. 

My FIL is about to start AP because of how much I've improved.  He and my husband were talking about how much more I was able to do this year compared to last.  It was eye opening to see this PRA thing from their perspective. 

According to my hubby, I was able to do even more this Christmas.  I scrubbed down my FIL's house.  I cleaned rooms from top to bottom including washing walls and ceilings.  I traipsed thru a field looking for the perfect Christmas tree.  I've helped unload and load storage so we could get our Christmas stuff out so we could decorate.  Really, I lifted and carted with the best of them.  I'm no longer holding back, if that makes any sense.  No more waiting for the hubby to move something, if the darn box was in my way, I moved it or carried it myself.  I helped decorate two houses.  I've done laundry for days (to clean and sort and donate what's useable at two houses) and helped hang clean drapes at one.  I've hit mall after mall (or what passes for malls here :-) to finish shopping I swore I had done in January.  Dammit, Santa was going to bring a pink Amped Idog if I had to strangle one of the elves myself!  LOL   I've cooked.  I've wrapped presents (OK, I do that every year :-).  I've helped do the same stuff at my mother's house.  I've crawled on the floor in two houses setting up the Christmas Village (we have a overpopulation problem in the Village :-) and at mom's house everything has to be 'just so' or she'll try to do it herself. 

I've squatted, bent, stood on tiptoe, lugged, stretched, climbed ladders and stairs and scrubbed down icky bathrooms.  I wore high heals all day!  It was Christmas and maybe I was too exhausted to notice - but nothing hurt!  My shoulders ached from all the scrubbing but NOTHING HURT!

I've been 'bad' too.  I've eaten junk.  I've not slept over 5 hours in days.  I've been seperated from my meds because I'm so behind and had to just take it and hope for the best because who had time to follow a schedule when you're running like this? 

So...if you can't do all this stuff this year, next year somebody is putting you to work.

Pip

Edited because I wrote my name twice.  Did I mention I was exhausted?

Pip!39442.2006018519

I am so interested in AP, I really am! I'm just a little nervous because I'm doing a very strict diet and part of it involves building up good bacteria with probiotic yogurt and such. So I am nervous to take an antibiotic. But then someone said the sulfasalazine is like an antibiotic. So now I'm not sure.

I just need to get on the darned probiotic. And get a compounding pharmacy to get the corn out of my sulfasalazine tablets. Argh! There is never enough time.

Some of those people on the RB are on some doozies of a diet.  The probiotics are the key tho, IMHO, for AP to work.  I'm going to try GoGo's kefir smoothies when I get back home to LA.  They can only help.  :-)

I've heard of the compounding pharmacies and some of the stuff they can do. 

You know, I forgot to mention something in my post.  My vision seems to be improving.  Last year at this time I couldn't thread the sewing machine on my own even with my reading glasses on.  This year, no problem.  (I only sew at the Holidays - LOL).  JSNM said her opthamologist says Mino is good for the eyes.  I just want to know how/why?

Pip

My rd appt was Friday. She felt the Mino was having no beneficial affects, so she took me off. :( I was on it for 2 months, and really did not see any improvement. I just spent 30 bucks on fish oil, Culturelle, and calcium/vitamin D tablets!

Now, I have no idea. She did not start me on anything, did not tell me to reschedule, etc. I did get a cortizone injection in my rt knee; which she said is shot. Left is a bit better, but not good.

.

justsaynoemore2009-06-16 16:50:45

Kathy -

Most people post that they 'turn the corner' around the 6 month mark.  If you've been at the RB, you can see it can take a while to work.  That's why I focused on the Ah-ha moments (opening my gallon of milk for the first time in months etc.) until it really got going.  Others have told me of combing their own hair for the first time in years.  Or of other 'little' things.  But it's the little things that make you hang on and keep going when you have your step back (or 2, or 3, or 4) and you wonder if it's really working or if it's only some sort of wishful thinking. 

And I really thought I was fine after only 3 - 4 months because of how well I responded and how fast.  I think I was an 'early responder' because I hadn't been on any of the other meds except a couple of pred packs that did NOTHING for me; if not made me worse (and most people love the stuff).  That being said, it does take a bit for most people to respond.  My AP doc says it can take over 2 years for some people depending on their situation.  So this makes the 'Ah-ha' moments more important because it gives you something to cling to when you are sure you're getting sick again.

So...if she's not giving you anything else and isn't even giving you the Mino - do you think maybe it's time to find an AP doc or even another Rheumy?  I'd hold out for Mino but that's me.... we know I'm nuts about the stuff.  Did you have even one Ah-ha moment?  Were you journaling?

Hugs,

Pip

Pip - It's those 'Ah-ha' moments that you talk about that have kept me going! I've been on Minocin for 6 months now, and although I haven't turned any major corners, I definitely have those occasional 'Ah-ha' moments so I KNOW it's working...I'm just one of those that started AP with a lot of joint damage, so I know it's going to take time.

On the subject of eyes - kids have to have their eyes checked every three months, for uveitis/iritis.  My daughter's have always been fine, and I do not really know the percentage of children who have eye involvement, but it is enough that it warrants regular checks.

I do try to 'read' the ped opth, though.  I was also his patient, so I feel like I can do that.  While my daughter was still on Motrin, the checkups seemed pretty run-of-the-mill.  But when I went in and listed her meds and said she had stopped Motrin, he looked a little anxious and asked how long ago.  That was the first time it occurred to me that while NSAIDS did not alter the course of the disease, they could be protecting her eyes.

She checked out fine.  Coincidentally or not, she was already on AP, too.  I asked if it was good sign she had no inflammation in her eyes after stopping Motrin, and he said yes, it is a very good sign.

The next few visits seemed run-of-the-mill, too, but yesterday as he finished the exam, he said, "I just think it is great she has had no eye involvement all this time."  He said it like it was remarkable, like he was pretty surprised it could happen without traditional meds.  

He even asked if we were still seeing the ped rheum LOL. 

Yup Pip! I am looking for a new doc. I guess she cured me, because she told me to call the office if I have any more problems!
The more I think about it, I do think the Mino was helping. I remember about a week or so ago, I opened a jar of spaghetti sauce, without pain!
Then, I go online to "MyChart" and see she entered that my Naproxen was ended this visit! I think she is trying to kill me, not help me! LOL.
My last bloods taken were 8 months ago.
I am making an appt with my sister's doc. She has a bunch of stuff (lupus, UCTD, inflammatory arthritis, Raynaud's, etc)

My bottle still shows 4 refills of Mino so......
 

GrammaKathy39444.9813541667i maybe on to something. I asked doc for a less strong antibiotic after all these months on the hard stuff. As with the allergic reaction, the raise in the pred and antihistimines and all. And it just seems that the antibiotic is taking down the swelling in my ankle and shoulder better than anything else. Maybe it is a combanation of all the antibiotics or maybe i am nuts? Well something is working at least. And i mean this was a big hard knot on my left shoulder last night. And well it was not small even six hours ago or even four hours ago. Wow it is really shrinking. Still swelling and a knot but so, so much better. Will keep you posted. I can stay awake on this one so i would hope it would work. I am exhausted each dose it has gone down. The infection is still there but the swelling in my joints is getting better. It would be crazy but i do not have to understand it, I just enjoy feeling a little relief. Let you know in a day or two. As i have men chasing plans if healthy enough.

.

justsaynoemore2009-06-16 16:51:19I met a guy at a Christmas party who is doing the Marshall Protocol for some
chronic back and other problems he has and he said it's all been hard but
he's getting good results. So now I am reading more about MP and looking
more into the possibility of trying MP, since I have such a good MP doctor
nearby. I think I will phone for an appointment since this guy said it can take
about 3 months to get in. The only problem is he's not on MSP so I will have
to pay out of pocket. I guess it will be worth it to get well.


Pip!

I just had to tell you!!!! I'm soooo excited. I've had RA for four years now. Just got back to Korea for a visit in the States. My AP doctor did the whole gammet of blood tests. I am painfree and in remission and thought the test should be good but...

I have no signs of inflammation and all RA tests are negative! This is the first time since being diagnosed 4 years ago. I had been Seronegative for RA then went Seropositive. The inflammation levels have been steadily coming down but I never thought they would ever be gone. It was a difficult road but AP does work. My AP journey took two years to see complete remission with a lot of ups and downs.

Thank you so much for your support and for roadback.org. A year ago I had a wheelchair card for driving and now I can run, jump and skip like a teenager. It was a very Merry Christmas for my me and my family.

Becky in South Korea

That's awesome news Becky, and VERY encouraging for those of us that aren't there yet!

GrammaKathy - fantastic on the 4 refills!  That buys you time.  Geez, do we sound like a bunch of addicts or what?  Psssst - Got any Mino?  LOL

Gale and all - just focus on those "ah-ha's".  Everything else is just speed bumps on the road to health. 

GoGo - I'm thinking seriously of it too.  One of my old docs just got interested in the MP.  Anyway, I'm going to be doing a ton of research on it come the New Year.

Becky - I'm so happy for you!  Go girl!  Keep up the healing.  There is so much more we can do!  Surfing!  I think we should surf together.  As long as you promise no pics of the fat girl in the bathing suit!  :-)

Milly - I think you may be starting to see.  Don't be diappointed but it can come back.  It's like a 'war' for your body.  Some times the Mino wins; some times the microbes, but like any good movie, the myco's are vanquished in the end.  I love a good movie!  And I want to know you're feeling good to catch one of those men!

Oh, and I have a question.  I keep coming back to your teeth.  I know you have the one that's started this whole recent thing off - but those strong antibiotics should have killed that off pretty quickly.  What else is going on in your mouth?  Have you always had teeth trouble?  Did you have a lot of root canals?  Did you have your wisdom teeth pulled?  Any huge lumps in the back of your mouth where behind where the tooth would have been?  Periodontal disease?  I can't figure out what's going on in there and it's driving me crazy!  I think you all know my abscessed tooth is what 'started' my PRA so....anything to do with teeth intrigues me?  Anybody else with no more periodontal disease since starting AP?

Hugs,

Pip

P.S.  I saw my perio last week.  I was very bad and had NOT taken care of my teeth.  I'm supposed to get a cleaning every 3 months etc. but with the move, etc, I just never found a new dentist.  Guess what - my supposedly incurable periodontal disease is definitely gone - even with being bad.  She was amazed again!  Woo Hoo! 

Oh my PIP. Dating and RA, they are both unpredictable. Well i may catch a man if i ever make up my mind. LOL I am working on it. Had some good days and really enjoyed myself. Well decided to go with a new one, oh he is wonderful we went to a friend of his and played spades New years Eve. I maybe coming down with an upperresperitory thing or it maybe The RA. I have been stiff and had the bite thing. Feels like little ants are in the back of my eyes just biting me. Potasium maybe a little low? Will get blood work results tomorrow. Well i would like to be well enough to catch this man. I thinks he's cute. And i can not seem to get rid of him. Thats good. He is mmmmmmmm younger than me. mmmmmmm he is 34. He has a good job that he has had for years so really a fine catch i would say. We laugh alot. He has a mystery dx. nothing bothering him at the moment. But he had to have an elbow drained years ago and some sort of flare in his hip once he said. Told him to get an answer. He said well they did not find anything and it's gone. He seems to like that answer right now. I am not comfortable with it. Anyway i had some good energy tollerable days. The swelling is down it seems it maybe trying to flare tonight, but it maybe other stuff as stomache and lungs and my muscles are stiff. Oh this man has good manners and cleans up the table really quick. He likes to bake pies. But in reality I do not know how things will go. As he has not had a chance to see me down yet. He is a young energetic guy with friends and kids and plays golf. So maybe he can keep him self occupied. As i do not want to slow anyone down as life is to short as it is. Anyway not wasting my good days PIP. will keep you posted. Nurse just called low glucose low, low potassium. So back to the hospital for more blood work.milly39449.3181712963So last week I felt the typical wave of a slight flu-like feeling.  Actually got really discouraged and was second-guessing all the time what I am doing by going to AP.  And then it finally happened, the first mouth ulcer in months and months as I knew they would come back first.  I had them before the chemo, so had thought the extra folic acid was keeping them at bay.  But I was told to stop the folic acid after the MTX weanoff, so I was not surprised to suddenly feel one.
 
So, here is my usual strange part.  It wasn't inside the lining of my mouth or in the gums or under my tongue as usual, it was in the inside of my lower lip, and I never get them there.  It came on just BAM with no tingling.  When I looked at it, it was just pure white bubbling infection and I have never caught one of my mouth ulcers in this early of an ulcer stage.  I have never seen it this early, then by the end of the day it turned into the ulcer and started a slight tingling like usual when I finally catch a look at it.  It lasted only three days, broke down into two very small ulcers, then a third one bubbled up, then they disappeared.  A huge difference from these horrifying huge ones I have had in the past, a couple of which were close to my back molars and they would get cut up by rubbing against these sharp teeth.  They also lasted up to ten-fourteen days, sometimes longer.
 
So, I am thinking I contained a ulcer with the antibiotics for the first time, and my immune system kicked in again.  I never knew these ulcers started with infection, never saw that phase before. 
 
I then had no body pain whatsoever on Saturday, and worked hard.  I worked hard again yesterday, and held up all day, good stamina and felt great.  I took pain meds just to keep ahead as I couldn't believe I would manage two days in a row.
 
Today, I feel great again to start out, third day in a row, a record.  I am starting to think Pip that my hand flare was retracing and my six-month herx/reflare.  Cathy justsaynoemore2009-06-16 16:52:26Good luck JSNM I was thinking i would have to have the antibiotics if i had ulcers of anykind. I am swelling but i am day three of Leviquin. Well they took it away from me just when i got sick. So maybe it will help. I was starting to swell before i got the Leviquin other wise i would say a herx. You know it was like i got by for three years on the Leviquin and i mentioned they were using it for AP therapy and bam no more Leviquin. Oh well i have it now i guess that is all that matters. Milly - NEVER say AP to docs - your antibiotics will disappear quicker than you can say Jack Robinson.
 
JSNM - that's how it was with my pneumonia - first time I beat it in one Z pack in years!  Congrats and keep moving forward!
 
Pip
Thanks Pip - I was good on Monday all day, and only did 2/3rds of my prn pain meds I allow myself for daily maintenance.  So far today (one hour) I feel okay, not as great as the past three days.  And my poor leaky gut has stabilized too.  The only thing I added is the Activa my hubbie brought home.  It must have my gut ingredient in it.  C justsaynoemore2009-06-16 16:52:58
MINOCIN: LESS IS MORE


I've been struggling with my AP program for a while and being stalled on my MTX taper. I had gotten down to 10mg/week but my usual 2 or 3 week "herxing" cycle was going on and on and on and I started to believe I was actually in a mild flare and only the MTX had been keeping my RA at bay this whole time. I went back up to 12.5mg a week but continued on 200mg Minocin MWF.

Then I went to the bush for 4 days and I didn't take enough probiotics and yay! got a raging yeast infection.

I was trying really hard to clear this up as I had minor surgery (not RA related) scheduled for my hootchie cootchie area this week, so in desperation I stopped taking the Minocin in order to speed up the yeast infection clearing. This is the first time I have stopped taking Minocin since I began AP.

Well, I couldn't believe what happened. I felt so good it was like I had no RA at all. At all. Nothing. No pain, no swelling, no subclinical inflammation. It was AMAZING and it lasted for 5 days. Then I decided to take some Minocin again and within 2 hours of taking 100mg my knee started complaining and I started getting "twinges" in various joints. For sure I was HERXING.

I had forgotten with Minocin that sometimes less is more. I guess when I went down to 10mg mtx my immune system gained enough power that the 200mg Minocin 3 times a week induced my 10 week herx I thought was a flare.

I have now gone back to 10mg MTX and will reduce my minocin to 150mg MWF if the herx/flare continues.

I am grateful for this evidence that AP hasn't given up on me, even though I was starting to consider giving up on it. When I started I thought it would take about a year to get completely off the MTX and here I am, only halfway there. But I now have renewed faith that this treatment will be effective for me, so I am approaching this plan with renewed vigour!
. 
justsaynoemore2009-06-16 16:54:17If you find a doctor that looks like Collin Farrel I want to know. And i don't care if he's any good or not. LOLLOL Milly!
 
GoGo - that't the ticket - learning what's going on with your body and working with it to healing.  I'd still just herx and be done with it.  Like you, I'm too afraid they're going to regroup.
 
Congrats Cathy, too!
 
Pip

.

justsaynoemore2009-06-16 16:54:39So I saw my RD yesterday. It's been two years since my DX and one year since I mixed AP into my treatment. I got some new x-rays and my RD says there has been NO CHANGE since my baseline x-rays. All lab tests report in normal range and my sed rate fluctuates between 2 and 4.

I asked about getting blood tests while on my 4 month road trip coming up and she said I'm now on such a low dose of MTX and my lab reports have been so consistantly good to just not worry about it while I'm away.

I asked if I should make an appointment to see her before I leave and she said to make one but if I'm still the same as I am now to cancel it later.

I still have some sub-clinical inflammation at times but overall I'm doing great.

Soon it will be time for less MTX.GoGo - this is fantastic!  You just keep on going, girl!
 
Hugs,
 
Pip
Had my 2-month check today and all systems are a go, another great set of labs.  So that's four months of good labs, and only minocin.  I was given go ahead to move to 200 mg for sclerederma, so am moseying over to Road Back and go through the doctor's protocols.  Have to see a dermatologist about the fingertip ulcers and have MRIs scheduled for both hands and wrists.  Another great visit, I love this woman, a true physician.  Cathy
 
Edited to say WOO HOO to Go-Go - that was two days into my Seattle trip and I read the post, and forgot to respond when I got back.  Heck, I forgot it all :) 
justsaynoemore2009-06-16 16:55:16Hey - finally got back this far!
 
Congrats!  She does sound like a gem!
 
So, when do you do the MRI and check into the finger tips?
 
Also, did you get my email?
 
Hugs,
 
Pip
Good job to you all. Love to hear good news. Keep us posted.Hey guys!
 
I know I kept saying I'd do this but life got in the way.  I have been on AP for 21 months and 3 days!  Yesterday was my latest AP doc appointment. 
 
The upshot?  My SED and CRP (the stuff that causes damage) is normal.  My RF and strep titers keep bouncing up and down.  I'd be discouraged if I didn't feel so good.  I want REMISSION NOW!  Feels like some sort of bizarre movie.  Attica!  Attica!  Attica!  RF down now!
 
So, my doc was happy with the progress I made on the brain fog since we got rid of the Armour Thyroid and the Salsalate.  Who knew ASPIRIN could cause you to go hypothyroid? 
 
We started talking about my sleep problems that I've been working on and he had a cool suggestion.  I was worried about starting melatonin as I was worried my body would get used to it.  I went into the whole PPI's acid rebound effect and about nasel sprays.  And he said something really interesting.  He said maybe my body 'reset itself wrong' after the stroke/adverse reaction/whatever and that we could jump start it.  So, he's going to have me start on melatonin and get me up to 3 pills (9 grams???) a day.  That may take a while as I'm apparently sensitive to ANYTHING.  Then we're going to 'pulse' me off so that my body can start making it's own.  LIKE WITH PRED!  I'm like, you pulse people off pred?  And he's like, yeah, everybody has a problem around 5 mgs so we pulse them until the adrenals kick in again. 
 
And that made me think of you guys!  If you're not pulsing off - maybe that's the problem? 
 
Finally, I don't know the last time I updated my signature - but it was before October when I started Zith to go after those strep titres.
 
So, note the new signature!  I got off the Protonix, and the Armour Thyroid (thanks JSNM for the hint about Aloe Vera) and we've lowered the folic acid from 2.5 mgs.  I've talked about the supps but never put them in the signature.  The stuff on the 'to be added' list is stuff I forget about all the time and I'm planning on being more regular about taking them.
 
So - old sig -
 
Antibiotic Protocol - Minocin, Salsalate, Folic Acid, Protonix (weaning), Armour Thyroid, Milk Thistle & 1/2 my old Tramadol for pain!
 
And new sig is just below.
 
Hugs,
 
Pip
 
Edited for a slash instead of a period. And using the wrong initials for Cathy!
Pip!2008-05-28 10:21:05Did any of you see that info about the Pred pulsing to kickstart the adrenals?  Thoughts?  I was excited about that possibility.
 
Hugs,
 
Pip
Pip, I've been pulsing to kickstart the old adrenals but it didn't work for me.  I was on 35mg of Pred. for over 4 years and I have old adrenals that never functioned fully at their best.  Pulsing is the only way to taper off if you've been on it for a longer period of time.  Good reminder for everyone.  Sometimes I do different things and participate in medical treatments and forget to post about them.  My RD is inventive and open to mostly everything. 
 
This is really exciting news for you and I'm so happy that you're progressing.  If feels really good to see and feel progress. Lindy 
LinB2008-05-28 14:58:20am i missing something  Ermm  i only see last years post...Geek

Boney
ooooops i was looking at when the members jonied  Wacko
got to reread

Duh  Boney
hi pip i am alittle lost here your ap seems to be doing really well
for you  Thumbs%20Up but i dont know what  melatonin is . and what this has to do
whith pred Ermm

Boney
Melathione is a natural substance secreted by the pineal gland that is what helps us sleep.  If you don't have enough, you wake easily and wake up non-refreshed.  I haven't slept right in 11 years so I'm working on trying to fix that. 
 
Boney - a lot of our meds take over for stuff that naturally occurs in the body and if it's coming in one way the body kind of goes, 'whoa, no need for me to make any more of that, they're covered' and sort of quits.  Our adrenals can quit when we're on more than 5 mgs. of Pred so its really hard to wean off.  When the doc said 'jump start' I was excited as I thought this might work with my melatonin problem but it might be a lot better for the people weaning Pred.
 
Lin - you're the only person I've ever seen about pulsing Pred.  How did it work please?  He said something like once I get up to 3 tablets I need to start doing 3 and 0 and 3 and 0 and then 2 and 0 abd 2 and 0 until I'm sleeping like a baby on the nights I'm not taking melatonin.  Does that sound about right to you?
 
I hope Babs sees this.
 
Pip
I did, Pip!  thanks for thinking of me..
 
but know that I am thinking of you when I post this:
 
 
please be careful..  it's a powerful supplement.
Yep, that's the drill for Pred pulse.  Have tried it twice and I guess I'm on 5.5 mg. for the rest of my life.   How do  you know for sure that your body's not manufacturing Melatonin?  What if you do get too much?  Please be careful, remember the Aspirin thing Shockedand how all of these treatments interact with one another.  Lindy

.

justsaynoemore2009-06-16 16:55:57

Babs -

Thank you soooo much for the research.  Do you know how important that was?  1) its another HORMONE and 2) that's the HPA axis again.  There was a ton of interesting things in there!  And, yes, I will be careful.  It always seemed to me that people taking to work night shift or for jet lag were being unnecessarily cavelier about it.  But I'm sure I can fix this if I just can find the right trigger. 

Lin - thanks to for the warning.  Yep, I'm going to see if I can get tablets and maybe start out at 1/2 and take it reeeeeaaaallll slow as only me would get screwed up on aspirin.  My hubby is starting AP next week (I think, have to check the calendar) and I'm going back to the doc with him so he can get a play by play and we both know what to look out for.  My doc jokes about my 'reactions' too so he's aware. 

As for too much - maybe I'll sleep for a week and wake up refreshed! 

Hugs,
 
Pip
P.S.  Lindy - sent you email too!
I started AP about 2 weeks ago. 

Started at 50mg twice a day (100mg total), and worked up to 100mg twice a day and it didn't work.  Was so dizzy and lightheaded I felt drunk, could not cope.  my hand swelled up and I felt like crap.

Took the weekend off, now I'm on 50mg twice a day, on MWF.  Will work up to 100mg twice a day, MWF.

i am giving this about 3-6 months and then the next gun in my arsenal is Enbrel.  I have low WBC so I can't (won't) take Mtx.
Don't forget to journal.  Seriously, when you do, you 'see' it working.  That swollen up hand, I had that baaaaad!  It looked like Felix the Cat's glove. 
 
And you did the perfect thing - drop down, get over the herx, and do it again later.  You'll come out ahead...you mark my words. 
 
Dizziness is normal when starting and goes away rather quickly.  A month or two, max. 
 
Are you taking your probiotics?  Really, really important says the one who forgot for 6 weeks and almost blew this. 
 
Cathy - have you seen this (obviously not - duh!)  You did the slow work up the dose thing, didn't you?  I just did the 200 mgs MWF because I just figured it couldn't get any worse.
 
Hugs,
 
Pip
I started out on 2x a day, seven days a week.  The light-headedness which slowly came on was bizarre.  I did that washout of both MTX and minocin at Christmas for high liver tests.  I elected after two weeks to restart the minocin on pulsing 1 per day MWF, then about two months ago moved up to 2 per day pulsing MWF.  I quit the Plaquinel as it was given to me for leg cramping, which has stopped.
 
Saying that, its my turn to report in on my 2-month labs I got yesterday.  ESR 15, CRP 1.5, ANA 31, all liver tests back to normal again, WBC/anemia numbers normal again.
I seem to be doing just fine without the MTX and plaquenil and only minocin.  Plus it helped that the lupus and malignant systemic scleroderma I was diagnosed with two years ago by my ex-rheumatologist have both been ruled out. 
The MRIS of my wrist/hands show synovitis in both wrists, with moderate to severe damage from previous sprains.  I believe that, I fell on the ice a million times in Alaska. 
So, it wasn't carpal tunnel, its RA synovitis of the wrists.  Glad I refused that double hand surgery twice - this could have been picked up with an ultrasound 5 years ago. 
 
The wrinkling of my fingers - no explanation, biopsy completely normal.  I am thinking that my inflammation is down so much that its just stretched skin.  Since my rings are falling off my fingers again, I know something is different.
 
Other than that, all is well.  Good luck cncdream - I started AP in October '07.  Cathy
justsaynoemore2009-06-16 17:26:01[QUOTE=Pip!]

Babs -

Thank you soooo much for the research.  Do you know how important that was?  1) its another HORMONE and 2) that's the HPA axis again.  There was a ton of interesting things in there!  And, yes, I will be careful.  It always seemed to me that people taking to work night shift or for jet lag were being unnecessarily cavelier about it.  But I'm sure I can fix this if I just can find the right trigger. 

Lin - thanks to for the warning.  Yep, I'm going to see if I can get tablets and maybe start out at 1/2 and take it reeeeeaaaallll slow as only me would get screwed up on aspirin.  My hubby is starting AP next week (I think, have to check the calendar) and I'm going back to the doc with him so he can get a play by play and we both know what to look out for.  My doc jokes about my 'reactions' too so he's aware. 

As for too much - maybe I'll sleep for a week and wake up refreshed! 

Hugs,
 
Pip
P.S.  Lindy - sent you email too!
[/QUOTE]
 
Good.. I wouldn't want you to foul up what  you've accomplished thus far... and I hope you get lots and lots of good sound sleep!!
ok thanks for the explain pip

Boney  Thumbs%20Up
One way or another I am going to try AP.  I have been calling around trying to find a doctor and recieved alot of help from those at Road Home.  I am not scared I am excited about the possibilities.  We all live with pain on a daily basis, so I belive the old saying it has to hurt if it is to heal.  I would hate to have lived my entire life saying maybe I should have.  So instead I say now I will.  Just as soon as a kind hearted doctor prescribs the meds.  [QUOTE=Prix560]One way or another I am going to try AP.  I have been calling around trying to find a doctor and recieved alot of help from those at Road Home.  I am not scared I am excited about the possibilities.  We all live with pain on a daily basis, so I belive the old saying it has to hurt if it is to heal.  I would hate to have lived my entire life saying maybe I should have.  So instead I say now I will.  Just as soon as a kind hearted doctor prescribs the meds.  [/QUOTE]

Have you asked your current rheum about adding minocycline?  Rheums use it, and if you say what you have just said here, maybe your rheum will be willing to let your try.

Good luck, however it turns out!

.

justsaynoemore2009-06-16 17:26:46As I am new to all of this...can someone tell me what AP is??Embarrassed
 
Boy there sure is a lot of stuff to learn. I'll get there Im sure!!
 
Cheers...Lyn Smile
It does not compare to MTX, antibiotics are considered mild DMARDs and MTX is a strong DMARD. Check out Johns Hopkins or about.com or mayo.com any research hospital.

Have you read up on C Diff? They are strongly recommending no one take antibiotics for any reason except serious infections. Its all in the news. Antibiotics kill the good germs in your digestive track except for C Diff, C Diff takes over and makes you seriously ill or kills you. Yes, you can take manufactured good germs but to late for C Diff to get you.

The whole thing is just a con job, a cult. Listen to your doctor. I would love to see where you get the percentage of doctors recommending it. Maybe 2%. Think about it. Trust your doctor. They post this with maybe 5 people over and over to grab newbies. Trust your doctor.

We're a growing cult Anna, as we have results. 

And please stop posting half truths about something you know nothing about.  C diff is NOT always antibiotics.  You may remember my 14 year old niece got it and she was IMMUNESUPPRESSANTS.   Gee, I wonder why THAT happened.  It made my SIL call me and say 'what do I have to do to get her away from those doctors.'  When school gets out, she's going AP. 
 
Actually, if we're on PPI's we have a greater chance of C diff than the regular population.
 
 
Anna - this is the last time you are going to post as Brrdgirl.  Period.  If you want to rant, rant as Anna.  Nobody believes a troll. 
 
Lyn - please excuse Anna.  She is fascinated by AP and cannot believe people get better by finding docs to treat them the way they want to be treated.  It makes her scared to think she made the wrong choice.  I mean, if we're getting better and she's not...then we HAVE to be lying.  I mean, her doctor can't be wrong, can he? 
 
AP is the Antibiotic Protocol.  It was developed by Dr. Thomas MacPherson Brown.  The book to get is "The New Arthritis Breakthrough" by Henry Scammell.  It details the development and history of AP and the politics behind all this.  And as I'm sure Anna will love to know, it's the # 1 best selling arthritis book on Amazon. 
 
We use low doses of Minocin or one of the sister tetracyclines (some use Zith) to beat this monster into remission.  I am not in remission (yet) but plan to be.  You can go to the American College of Rheumatology (you know, those quacks) and see we're an approved DMARD on par with MTX or Plaq.  Minocin (brand) or Minocycline (generic), per them, has the most benign side effect profile of ANY of our meds.  Think about it - it's safe enough to give to teenagers for acne. 
 
 
Anna is right tho - this is not an AP board.  AI (except for Anna here) is a wonderful board that is happy when people are doing well NO MATTER WHAT MEDS A PERSON USES.  Just Anna has a problem with this.  Sigh.  Or she's the only person dissing a med that works for others.  I can't understand it.  Anybody who feels the pain we felt and would deny people relief...Anna is a bit...twisted.
 
So, if you want to, lurk on www.roadback.org and watch people working their way back to health.  It can be a struggle, and when we first find the Roadback, it all sounds like Greek and doesn't make any sense.  I promise, it will if you learn about it. 
 
But if you do decide to do AP - or not - please stay here.  When Anna attacks people like she just did and they try AP,  it makes them feel insecure about posting about the two steps forward and one step back with the process.  We do need more APers to post so others can learn from the ups and downs.
 
That was the intention of this thread.
 
Hugs,
 
Pip
PS.  The Arthritis Foundation says Mino is "Minocycline is effective in about 60 percent of people with RA who use it."  That is almost 2 X the effectiveness rate for the biologics with a much harsher side effect profile. 
 
Maybe some newbies will chime in on this.  From my experience, the anger and rage that comes through in the troll's posts inspired me to learn more about AP.  I couldn't understand how someone else's treatment could bring up such emotion.

I've never seen a post on Roadback about c. diff. complications.  I didn't have c. diff. when I took mino, tetracycline, or erythomycin for acne, either.  My daughter hasn't had c. diff. on Zithromax yet.  None of her doctors, AP or not, have warned of it as a complication.  She does eat yogurt with live, active cultures, not manufactured.    How concerned are you about cross-resistance? [QUOTE=Lynn49]How concerned are you about cross-resistance?[/QUOTE]

I'm not.  Again, this is based on my experience of having been treated with the same class of antibiotic for acne, and the knowledge that they are still used to treat acne.  That is what makes all this 'superbug' or 'c.diff' talk so absurd to me.

My daughter sees other doctors besides an AP dr.  They are on the case, too.

The only alternative being offered to her current MWF Zith dose is Humira, mtx, 3xday NSAID, daily Prevacid, and a steroid injection given under general anesthesia.

She takes Zith ONLY and just finished dance class and started swim team.  No side effects.  We like things the way they are for now.
I have read studies that talk about antibiotic resistance developing for acne. It is not as benign or as absurd as it seems. Lynn492008-05-30 09:15:19She started swim team?  OMG - my girl is soooo behind!  We're taking lessons all summer just so she can catch up to the kids in her class!  I'm feeling inadequate.  She's starting ice skating in July!!!
 
Again, I'm not concerned with resistance either.  What are the chances that I get MRSA and the only drug to save me is a 50 year old 3rd generation off patent drug? 
 
If you're saying like Suzanne interpreted it - first thing they need to do to stop resistance is to get it out of farm animals if they're so concerned.  75% of the tetracyclines produced in the world go to animals that aren't even sick.  And no way is Big Agri going to stop that.  Then take it away from the pimply-faced teenagers.
 
Then they can take mine!  I'm using it exactly like it was intended to be used.  To treat an infection.  It may be an intracellular one, but one none-the-less.
 
Hugs,
 
Pip
P.S.  OMG - I didn't know Anna was one of the people that got you interested in AP.  I just assumed it was KarinRA.  But you are right, everytime she does something like this on AF, I get emails asking for more info.  I have thanked her publicly in the past.  :-)
Again, let Big Agri take it out of the food chain if it's such a concern.  Notice, it ain't happening.  Too much money involved.  But some sick old ladies wanting it for RA and it's a problem?  Give me a break.
 
Hugs,
 
Pip
[QUOTE=Lynn49]I have read studies that talk about antibiotic resistance developing for acne. It is not as benign or as absurd as it seems. [/QUOTE]

There are a lot of studies about a lot of things.   There is a study that says a certain biologic does not work nearly as well as a placebo, but I was told that was because they had "a really good placebo".

Again, we only have our experience in our situation to base our decisions on.  Do not try AP if you are concerned these issues.  It is really that simple, isn't it?

We know my daughter had pneumonia and staph on mtx.  We know that. 
[QUOTE=Pip!]
 
  OMG - I didn't know Anna was one of the people that got you interested in AP.  I just assumed it was KarinRA.  But you are right, everytime she does something like this on AF, I get emails asking for more info.  I have thanked her publicly in the past.  :-)
[/QUOTE]

The reaction to Karin's positive posts.  Quite an eye-opener, when you consider the source(s).  I wanted my daughter to be a Karin someday.
You know this is the problem with trying to have any kind of discussion. I simply asked a question...It's not neccessary to get all bent out of shape about it. Some peole have side effects from meds, some don't. I really don't understan what that has to do with this conversation...

I know that some people develop C-diff from taking antibiotics and that also there is some concern about antibiotic resistance to acne meds. I think posting that is valid. Just like people post all the side effects from the traditional RA meds.

Who's bent out of shape? Excuse me, I didn't realize that you were trying to have a discussion. My mistake...Well, you asked if I was concerned and I explained why I wasn't, and why that risk was worth it over the alternatives.  That seems like a discussion, so I don't know where it went awry....but it always kinda does, I guess LOL. So it seems..Suzanne - do you have the study with the 'really good placebo'?  I'd love to see that.
 
Pip
I have been on Ap for about 20 m0onths now and can't tell you how well I am doing - I used mtx, prednisone, remicade, orencis (abatacept), enbrel, humira, arava, and can't really remember them all - I  loved the remicade and did so well on it but after awhile it just quit working - the other meds either didn't work or caused me other problems some not so serious others pretty darn serious.  My rheumy got me into the Mayo and this is the plan they cme up with me and thank heavens they did - it is a real treatment with real results - like all  meds it doesn't work for all but it does work no matter what some say - it is not witchcrafgt or voodoo it is a real live honest treatment that doctors prescribe!!!!  I was down to working few hours a week (I was lucky hubby and I are smalll business owners and I could make my own hours) used a cane, walker, and was close to a wheel chair when I started this treatment - I have always been pretty positive my RA/PA was started with an infection so this may explain why I have done so well on AP, but I now work over 40 hours a week (small hardware store so I am on my feet and moving constantly)  I do yard work and my mom is elderly so I do a lot of things inside and out around her house - so it does work and may not work for you but it never hurts to try - my last exrays and MRI's show no new damage and my exhaustion level had also finally gotten close to normal - it is not overnight and there are bumps in the road as with all meds and you may need to do some tweaking here and there but with a good doc (mine is areal honest rheumatologist) you will work this out - I no longer can take any other RA meds like your basic mtx so this for me was a goodsend - if you are interested in AP stick to your guns and make your doc listen but if the other meds work and don't make you sick you may want to leave well enough alone - either way I hope all feel better soon and wish each other the best of luck for what ever treatment they choose.  BTW - neither treatment is right or wrong it's just one treatment can be either right or wrong for you.  Hugs and good vibes. 

.

justsaynoemore2009-06-16 17:28:00Even though he didn't mean to, LevLarry coined a new term!!  Minohead!!

If a Minohead is anywhere near as cool as a Parrothead, I'm proud to be a minohead!!!
[QUOTE=Pip!]Suzanne - do you have the study with the 'really good placebo'?  I'd love to see that.
 
Pip
[/QUOTE]

Super busy weekend!  After the comment was made, I looked all over for something, to no avail, while my bathrooms molded LOL.  Gave up, but had a thought since you asked, and I do believe this might be it:

http://www.druglib.com/abstract/ru/ruperto-n_arthritis-rheum_20070900.html

I also want you to know that I asked our ped if there was such a thing as a "really good placebo".  I mean, I know there isn't, but I thought there might be an explanation for the comment.  He is ever the diplomat, and blah blah blahhed about 'therapuetic effect'  and other things, not really answering.  I was just shy of pinning him to the wall with the sharp end of a Capri Sun straw against his jugular vein LOL - "THERE'S NO SUCH THING AS A REALLY GOOD PLACEBO, RIGHT???" and he said , "Right."

This is why there is sometimes a link to Pharmagossip on Trusted MD entitled "Clinical Trials - Ain't They A Bitch?"

Let's keep the med in this study anonymous on the board; interested parties can check it out if they like.  Thank you for your consideration.
Suzanne2008-06-02 06:29:49 [QUOTE=cdndream]
If a Minohead is anywhere near as cool as a Parrothead, I'm proud to be a minohead!!!
[/QUOTE]

My daughter is on Zithromax. 

MINOHEADS and ZITHGIRL.

Sounds like two acts at Lollapalooza.  APalooza.

.

justsaynoemore2009-06-16 17:29:08Pip, I cant PM you said you have exceeded your number of messages..

I have my appoinment july 15 (tues) at 9:30 am
and Wed july 16th ( at 2:30)

Will fly on Monday ,
most likely return friday
going alone at this point.
all covered under our plan

I am so happy!

It is worth a look into.
If it doesn't make me happy I can always return to other treatment,

Much appreciation,

Thanks

have you guys heard of this:

serraEnzyme

http://www.enzymus.com/serrapeptase


? not sure if it is the same thing as danzen?

does anyone know more about this...
It said it helped for pain.. I bought it

anyone have infor.

I need to survive the pain for another month here.

Thanks.Congrats Donna!  And yes, I agree, if it doesn't work, you still have all your other options.  I'm betting it will tho, because of the newness of all this.
 
I've not heard of the serraenzyme except from you.  But I'm intrigued.
 
Suzanne - I am ROTHFL!  And those Capri Sun straw are dangerous - that man doesn't know how close he came to death!
 
To all!
 
Hi, I'm Pip, and I'm a Minohead!
 
LOL
 
Pip
I will see doc for AP treatment July 8.  Looking forward to getting started.
 
Jan
We're rooting for you Jan!
 
Hugs and keep us posted!
 
Pip
I got my lab packet from drs. today:)
it saids I have to go three weeks before my appointment to have done.

Should I do it next week to make sure...it gets out there in time.. or does it need to be done exactly 3 weeks? If so I cant do it until the 24th?

I am really excited..
I have to complete all the paperwork too and get my records transferred.


Feeling pretty good today after a sore am.


Donna -
 
You need to call the doc - maybe something is important in the timing of the test.
 
WooHoo!  Good to hear you're doing better!
 
Hugs,
 
Pip

.

justsaynoemore2009-06-16 17:29:57I've been rereading some of these posts.
 
Jan
I will be posting an update in a few hours after I can get my computer to stop freezing every 6 seconds.
 
I HATE tech!
 
And my new post will be "STUPID APer's" with yours personally as the example.
 
Pip
Hi to all,
   I have been trying to read all these posts so I can tell my rheumy about AP (He has never mentioned to me so I guess hes not using this treatment)  One thing I read, I think Pip mentioned it, was "pulsing" pred to get off it.  Could anyone tell me what this means exactly in terms of pred tapering?  I need to get off pred really really bad; have already emailed my doc telling him I want to discuss AP next week.  Any help is appreciated.  Even taking Pred and just starting MTX (didnt want to) I am in constant pain, especially my hands and wrists, so I need to do something Im getting so despondant about not being able to do anything at all without hurting.  Thanks to all 
Not all rheumatologists treat with Minocin.  The  Road Back Foundation website www.roadback.org can assist with finding doc in your area who does.  You can send e msg and someone will get back to you.  Ask for ALL docs in your area.  That is what I did.
 
Take care.
 
Jan
 
Paula,
 
You have to be very careful weaning Pred.  How long have you been on it and where are you in dosage?  You cannot come off that easily if you've been on it a long time.  (LinB just posted about it on a different thread, the new guy???).   You have to come down slowly or your adrenals can quit and you need them.  So, please don't do a cold turkey - you can end up in a world of hurt. 
 
Also, if you go to Amazon you can order "The New Arthritis Breakthrough" by Henry Scammell.  It's one incredible book - riviting - not like the usual boring science tome.  If you get that you can get it read in one night (most people do) and get a lot of examples to help you understand the process.  It makes sense.
 
Don't be bummed if your doc isn't into AP.  I went thru 5 before I gave up and flew out of state for help.  When we got back and I was already on AP, I interviewed 5 more and still couldn't get somebody willing to monitor me.  The 11th is doing it so now I have docs in two states.  Many try to talk you out of AP.  I've been told everything (either it happened to me or it happened to one the people I know starting AP) that 1) it doesn't work for severe (I'm early onset severe) 2) it causes hepatitis 3) it causes Lupus (in reality it's drug induced and you come off Minocin and go on doxy or a different antibiotic) 4) we save that for the severe people (why not give it first then??? I mean, the list is endless and kind of creepy too, if they know enough to try and talk you out of it and it's a mild DMARD???
 
Anyway - I hope this thread helped you and we're here if you need us.  I've been having computer problems (AGAIN!!!) and JSNM is around here somewhere.  GoGo is on a cross country Canadian adventure and will be back in a few months.  Hopefully some of the non-regulars will jump in.
 
Hugs,
 
Pip
P.S.  I'll write my Stupid APer's monologue tomorrow.  I just got back online and need to catch up.
Thank you, Pip.  I know what you mean about quitting Pred, tried to get off it several weeks ago and thought I would die.  I think my doc will give me the antiobiotic, but I am not sure if he knows how to monitor as several of you have talked about.  Pip, when you have time, will you tell me what "pulsing" Pred means?  If it is something I havent tried I would like to.  I have only been on Pred seven months but now am also starting MTX.  It is now 4:37am here and this is always the time I feel like I could almost be normal.  I wake up at 3:30 every morning now.  Later on is when the pain really sets in.  Anyway, thanks again      Pip - cannot wait for the story :)  Maybe I will share my latest dumb AP/RA mistake.
 
PatandPaula - I am on a pulsing variation of AP (antibiotic protocol with the prescribed antibiotic Minocin) of MWF two 100 mg pellets triax twice a day, with very strict empty stomach and post-pill eating requirements.  I could not do the 7 days a week routine from the common symptom of lightheadedness.  This pulsing method is to supposedly let the bad guys out into the open and to fire away at them every 24 hours or so, as it supposedly takes around 22 hours for the disease to reproduce previously killed off bad guys.
 
I was told to be on heavy probiotics, which wasn't too hard for me to do as I actually was already on a pretty good RA diet/supplement/alternative doctors routine most of my life.  I knew something has been wrong for decades, and have contempt for the AMA.  I drink kefir and use NOW powered probiotic so it gets straight into my morning smoothies without a capsule to digest first.  I also eat alot of yogurt. 
 
I do a lemon drink which was suggested of one cup of water, a whole chopped lemon (rind, pits, everything) and I use about 2 tablespoons of olive oil.  Blend it up, sift through with a trainer, then drink the resulting liquid.  Some pansies in here use Stevia to sweeten the taste :) 
 
I do fizzle baths:  a hot bath of Epsom salts for five minutes to open the pores, then add in the backroom good stuff hydrogren peroxide they don't put on the shelves (two big brown bottle size) and soak another half an hour.  The fizzle starts when the bad guys are being pulled out of my skin.  Then I clean the tub as this is a terrific cleanser.
 
My mantra is colon health, as constipation is a symptom of RA/autoimmune.  Every night I drink a warm cup of prune juice, followed by an herbal laxative tea, and take a stool softner.  I drink tons of filtered water all day long.
 
Predisone:  I was told to do a fast, hard, completely unnecessarily harsh weanoff from Predisone by my ex-rheumy after 5 months of use post-diagnosis.  I will never take Predisone again. 
 
Good luck, keep us informed, and take care ~~ Cathy aka JSNM for unknown reasons Wink
 
 
 
 
Paula -
 
I've never pulsed Pred - I'm one of the only people in the world who thinks that stuff made them sicker.  Ok, and my husband, who demanded the docs take me off. 
 
However, my AP doc and I are trying to get my body to produce more melatonin naturally and he has me taking 1 mg. melatonin at night with me slowly working up to 3 mgs.  When I get there, he's going to try and pulse me off.  Just like Pred, he said.  The idea is to go 3 days on and one day off, and when I can sleep thru that, then go 2 days on and one day off while dropping the Pred one tablet etc until I can sleep regularly without it.  He thinks my melatonin levels may have reset too low after the stroke/adverse reaction/whatever.  I'm seeing him again on the 23rd so please don't try this with Pred until I get more info.  Or, maybe find one of LinB's posts and send her a PM.  I don't know what dose you're on but if you're not down to around 3 mgs then you are playing with fire.  Have you tried weaning?  I mg every week or so? 
 
Hugs,
 
Pip
P.S  When we pulse the ABX we do so every other day.  I think it's the same concept with weaning Pred to get the body to start producing its own.

Pip - 22 1/2 Months on AP

Stupid APer's.
 
OK, so we've managed to get me off Armour Thyroid/Salsalate fiasco and I'm waaaay inproved sleep-wise since late March.  I was using the Whole Lemon/Olive Oil Drink with sweeteners like a pansy and even managed to switch over to Stevia instead of Splenda.  And it tastes better too!  If you guys knew how much I hate lemons, you'd see the lengths I'm willing to go to to deal with this.  My thyroid levels are fluctuating up and down as my body is trying to figure out what to do about that thyroid - is it or isn't it from the aspirin or is it or isn't it a disease process?  Things going in my favor is that my thyroid levels were good prior to starting AP and this only came on part way thru the process so the doc thinks its a darn good chance it was the meds. 
 
Anyway - I got the Melatonin about 2 weeks ago and started using it and was immediately able to sleep.  If I forget it - no sleep.  Seems simple.  Of course, since I'm not having a problem sleeping anymore, no need to take the lemon drink anymore, right?  Wrong!  For non-APers - the lemon drink cuts a herx and I no longer herx so I don't need it for that.  I need it because it helps chelate heavy metals from the body as well as helps regulate glucose levels.  When I use the Lemon drink I sleep straight thru the night and do NOT wake up at 4:30 when that's the time my body seems to dump glucose to start preparing my body to wake up.  It dumps and - Zing - I'm awake. 
 
So, I'm sleeping and really seem to hit a new level of healing.  I mean, it's amazing.  AND THAT"S when I get stupid.  Not only do I not need my pain meds any more, I'm forgetting my supplements.  There go the potassium, the magnesium and just about everything on my list of meds.  For 2 weeks.  I mean, I forget either totally or maybe remember at 3 - 4 PM.  Not in enough time to take them and still take my antibiotics and I'll be dead before I skip those.  Only, I start forgetting them too.  At least I remember before bed. 
 
So, the sleep starts getting messed up.  No pot and mag means RLS comes back. 
 
No, WL/OO and that means the waking at 4:30 comes back.
 
Then, because I'm apparently more stupid than the average person, I take my back up meds out of my purse because it's too crowded in there.  So, when I have a small freak accident at the store and manage to get hurt and am bleeding from a table falling over on my foot (gonna lose the toenail) I don't even have pain meds on me to get it in me before inflammation sets in. 
 
The point to this -
 
Unless you are in remission - actual remission - and have been there for a while - DO NOT stop doing what's working.  Which was my theme when I was an idiot and forgot the probiotics for 6 weeks during the move.  Apparently all this stuff only applies to you - not to me.  Sheesh!
 
So, I'm back on everything and I'm going to be religious about all of it no matter how great I feel.  Thank God it wasn't more than a week before I figured it out or it could take months to undo this. 
 
And I've very surprised to see how improved sleep plays out in all this.  I thought I was doing great but when that kicked in I was doing fantastic!  I even started swim classes as I had so much more energy and wanted to start losing that Armour Thyroid-hypothyroid weight gain.
 
Arrrrgh!
 
Pip
Thank you so much, Cathy and Pip.  Cathy, I cant do the bath thing because I cant get out of the tub even if I manage to get in, but I am going to get some lemons and Ive already got Stevia.  Pip  I am on 5mg of Pred but I am still hurting, some days worse than others.  The best time for me is at 3:30 am when I wake up like you say you do every morning.  That is when I hurt the least.  Anyway, I guess I wont do anything yet on the Pred, too scared to try right now.  If I feel better in a week or two, I may try to reduce again.  Thanks again    Paula :  You can soak hands, feet, etc. in small tubs, or make towel compresses.  You have to get creative with RA :)  Pip, you sound just like me.  Sorry about the toe nail, I totally understand right now. 
 
My stupidness about two months ago was to forget to take my liquid calcium for about a week.  Right on schedule, a horrifying mid-night, straight out of sleep charley horse with a spasm as big as a baseball.  Takes days to get over it.  Pound calcium, it goes away and stays away. 
 
Congratulations on your progression from pansy to growing teeny tiny (insert Jesse Jackson word here) :)  with your lemonphobia.  My hubbie has it too.  C
Hi P&P, as soon as I go back and read all your posts I'll come back to this thread and tallk to you about Pred.  It will be later this evening.  Am getting ready to have a bbq here with Stan's childhood pals.  Nostalgia time for him.  LindyI took predisone 3 days with lower back problem, 8 years ago. There is NO way I would take that drug on an ongoing basis from what I have read.  No way.
 
Jan
Cathy, Pip, you girls are funny.  Cathy, I forgot to tell you; Im very jealous of you being able to take baths, I havent been able to do that since January.  Even if I got in, I sure couldnt get out!!

.

justsaynoemore2009-06-16 17:31:03Hey Paula - you're not going to fizz unless you're on antibiotics - we don't want to get your hopes up.
 
Also, I think it was GoGo that spritzed it on immediately after a shower and it worked too.  Saved money with the spritz bottle.
 
And Thank God LinB saw this - she'll be back and get you some good advice.
 
Hugs,
 
Pip
Hi Paula, I'm sooooooooooo tired...hope my post makes sense.  Also, had a couple of glasses of wine. 
 
Pred. taper can be very difficult if you've been on it for awhile.  Awhile can mean 1 month to years. 
 
Right now you're on a very small dose of Pred.  You should be able, when you're ready, and with the help of your RD taper 1mg. at a time.  If you taper 1 mg. each week you'll be off Pred. in 5 weeks.  A slow taper is the only way your body can adjust to the lessor amount of Pred.  You may have some uncomfortable days after you start the 1 mg. taper but within a few days you'll body will adjust to the taper, then it will be time to decrease by another 1 mg.  This cycle goes on until your off Pred. 
 
You'll read all kind of statements about Pred. some good, mostly bad.  For some of us it is the ONLY med. that worked to get us back on our feet, back to work, and functioning at least half way until the the dmards and biologics started to work.  Unfortunately, I had to be on 40 mg + for over 4 years.  It's taken 10 years to find the right combination of meds but my story is somewhat different than others you'll read.  I was seronegative for about 14 years and then had a sudden, severe flare or onset with an RF of 972 and all other labs positive.   This onset left me housebound and in bed for most of the day.  Pred. was the drug that got me up and moving about.  In some ways it saved my life, in other ways it complicated it beyond belief. 
 
In the last 8 months I've tapered off Pred. because I've finally achieved clinical remission.  I'm still on 7.5 mg. because my adrenals aren't functioning.  When you've been on Pred. for a long period of time your adrenals stop functioning and don't produce the steroid that you're body needs to function.  I'll probably take 7.5 mg. for the rest of my life. 
 
I won't be like others and say I'll never take Pred. because one never knows the direction their disease will take.   If I find that I'm bedbound and can't walk then I'll take Pred. so I can function until other meds start working. 
 
I hope that whatever medications you choose work for you.  You're early in the disease process and it's highly likely that you'll have positive results.  Lindy
Lin, your post does make sense, thank you very much.   I have tried to decrease the Pred and wound up bedridden.  Even right now, I am in so much pain, I want to go in there and take the whole bottle of Pred.  Something has got to change, I know that.  And now I have this cyst in the middle of my palm that is killing me.  Been ther fore a month and is growing,  Anyway, thank you so muchSee - LinB knows!  There's always somebody here that knows the answer.
 
Hugs and if you have more questions, I'm here.
 
Pip
 The book, THe New Arthritis Breakthrough by Scammell has alot of info.  My local library didn't have it in Ventura County but I did an interlibrary search and got it from South Pasadena.  I wonder if anyone knows any other libraries that have it.  It would be nice to be available so you don't have to buy it.   I was happy to buy it but everyone may not be.
 
Jan
An interesting note why antibiotics are discouraged long term for any disease.

http://pokedandprodded.health.com/2008/07/10/fecal-transplants/#more-419

Besides stopping a computer virus, minocin makes me feel well again, not sick.  I have energy, I am no longer fatigued.  18 months of other DMARDS did nothing to make me "feel" better again.  That's all I wanted, and I got it.  I am living with the consequences, which we all have to deal with. 

Anna,
 
This is the thread about and for APers.  Please post your drivel somewhere else so people can mock you openly.
 
Again, because RA has obviously effected your memory - my 14 year old niece who is on immune suppressents got c. diff.  That makes me more worried about you guys as that makes sense.  Suppress the immune system and any ugly bad bacteria is, of course, going to rear it's ugly head.  And you forgot my biologics and c diff studies I posted from PubMed. 
 
Please stay off this thread.  Spread your manure somewhere else. 
 
Pip
Pip-
 
Well said!!
 
Jan
Let me carefully step over the bird droppings, I have some news to share.  They have added a new abx to my daughter's treatment.

And by "they", I mean the children's hospital, not the AP dr.

Yep.

After three years, we are back with Infectious Disease, at least temporarily.  The AP dr. ran some labs to rule out things he does not treat.  He does not treat Lyme, and she came back with Lyme titers.  Not titers only a LLMD would love.  "Meets CDC criteria" titers.

Am I saying she has Lyme?  Nope.  But everyone agrees these results are significant.

Much to my surprise, the children's hospital had never tested her for Lyme.  Silly me, just assuming that when they test for Cat Scratch Fever, send you home with a brucellosis dx, then put you through neuroblastoma testing, they would have tested for the disease that was discovered when moms wanted to know why all their kids were being dx'd with jra.  Silly silly me.  My bad.

I'm told it is possible that she has something something something that can look like brucellosis and/or Lyme in labs.

They are testing her again, at the lab they use, which is the one that said she had brucellosis.  I said that was fine, if it made them feel better, but based on our experience....

So in addition to her MWF Zithromax, they have added amoxicillin 3 x day for a month.  Our long, strange trip continues.....
Suzanne-
 
Good luck with the ongoing situation.  Hang in there until your daughter gets all the help she needs!!!   Praying for you.
 
Jan
OMG!  Lyme!  And the ever-more-rare-CDC-approved kind!  You just go girl!  Hopefully she'll get the cure!
 
Hugs,
 
Pip

.

justsaynoemore2009-06-16 17:32:09Hi all,
  I asked my doctor to give me the Mino last week and he did (saying he usually doesnt prescribe)  I took two pills Monday, Tuesday I felt very bad, ill and dizzy, but went ahead and took the two pills (100mg) anyway.  Wednesday couldnt get out of bed.  Could anyone tell me if you think it might be better for me to start out at one pill  day every other day or any other advice?  My doc doesnt do this so I am pretty much on my own here except for you guys.  SO any suggestions are appreciated.  THanks a lot 
Hey Paula  and congrats!-
 
It's great you reacted right away to Mino but I'm betting you don't think so right now!  It's pretty much telling you it's going to work - once you get it under control.
 
OK - usual disclaimer - not a doc so if something doesn't make sense, double check with him.
 
The key to AP is hard to wrap your head around.  Less is more.  So, if ever you react to it (herx - and common herxes in the beginning are dizziness, herx-flaring, stomach upset etc.) is to stop the med, let the body sort of reset and get on an even keel, and start at a lower dosage. 
 
Personally, it sounds like he scripted the Harvard Protocol - 200 mgs a day.  I prefer and used the Brown protocol - 200 mgs MWF.  Less is more (bug killing).  So, what you might consider is stopping over the weekend and starting on Monday (W and F only) again at 1 pill a day to see how you react.  Make sure it's taken 2 hours without food before or after.  I get up, have breakfast, take the Mino 2 hours later and then have lunch 2 hours after that. 
 
Did you get a journal to record stuff like this?  You are looking for patterns and "ah-ha" moments to keep you going while you deal with the 2 step forward, one step back until you're back to 'you'. 
 
Also, have you started probiotics?  Get the good stuff!  Get as many different strains and as many 'live cultures' as possible.  I use Solaray Multidophilous 12 available at Whole Foods.  It doesn't have to be that - just the most strains and encapsulations.  That will really help you as it helps your body use minerals and vitamins you're taking in.  It won't stop a flare but it'll really lessen it.
 
Finally - search here on AI for the Whole Lemon Olive Oil drink - that will cut a herx like no tomorrow.   I swear by it because I hate lemon and my husband made me drink it because of how much better I did on days I used it.  So...use it every day until you're in remission.  I stopped using it when the pain went away but started up again just before bed as it helps me sleep.  Love that drink!  (keeping in mind I hate lemons - LOL)
 
Also, would you be so kind as to tell me your RA meds history - I might have some clues as to what to expect if I had that.  If you told me once and I forgot - sorry!
 
Hugs and have a pain free roadback to health!
 
Pip
PS - Get the New Arthritis Breakthrough by Henry Scammell available on Amazon for stories on how this might effect you until you get remission.  And, don't forget to lurk on www.roadback.org.  It sounds like they're speaking Greek but after a while it will all sink in and you 'get this'.  Hugs again!Oh Pip, thanks so much for your kind response.  I am on 4.5 mg pred (tried reducing, almost died the last time)  and 4 pills mtx (only on 3rd week) and advil and multi vitamins, calcium, fish oil, ginger bromelain, folic acid (1mg).  I did stop the mino and was thinking about taking one pill tonite before bed, and see how it works on mond wed and fri like you said.  I havent got the probiotics yet because I havent felt like driving, my wrists and hands hurt so bad.  Thanks a lot for your response.   

If you just started the MTX - you might ask your doc if you can stop - you will rebound a little but maybe not so much as it still isn't into your system right now.  That needs a few months - the reason I say that is they you won't have to wean it later.  It's all depends on what you think you can handle.  My experience is when people feel better they don't want to wean anything thats working.

Can your doc give you stronger pain meds until you get this under control?  I used tramadol.  I just don't think Advil is going to cut it and you don't want to take too much.

If you don't mind my asking, if you are newly diagnosed, do you suspect why you're having such a hard time getting off the Pred?  Did they have you on massive doses in the beginning?  I don't know much about this but wish I did.  Maybe pain meds would help with weaning that.  I hope LinB sees this.

Hugs,

Pip

Pip, I was diagnosed in January, have never taken more than 9mg of pred even tho they told me to take more.  I was diagnosed with Polymyalgia Rheumatica  then when I tried to reduce Pred my wrists and hands started hurting and swelling, my doc says RA also. I dont know why I cant get past the 4.5, I just get really sick and hurt so bad all over, and it doesnt go away in four or five days (thats how long I lasted at the lower dose)  I am allergic I guess to all pain meds, tramadol, darvocet mobic  all made me sick, so dizzy I had to go to bed and felt terrible.  Took Diflucan, didnt help at all.    Wish I had never started Pred.     I will ask doc about MTX but he has been bugging me to take since May and I finally gave in couple of weeks ago after I couldnt reduce Pred.  Thanks  PipMaybe if you start AP it will help and you can wean the Pred?  I don't know your schedule but that doesn't sound like an 'allergic' response to pain meds.  That sounds like a side effect.  Has your doctor tried everything?  Most side effects will abate in a month or two until your body gets used to it.  If you're not blowing up like a blow fish, that's a good sign, tho.  I have a sulfa allergy and DO blow up like a blow fish.  My next step is 'unable to breathe' which is why I don't do sulfa.  LOL
 
The hard part of AP is 'working thru' or getting past the problems.  Once you do that it's smoothe sailing. 
 
Hugs,
 
Pip
Yes, Pip, youre absolutely right; its not allergic reaction, its just that they all seem to make me dizzy and ill and I have to go to bed.  I havent given up on AP, I'm going to try again and I'll let you know how it turns out.  Thanks again I was more concerned about the pain meds - man, I can't imagine dealing with this disease without some kind of pain control.  And when we stop moving it seems to get worse.  I don't have any idea how you're dealing with this without that!  My hats off to you!
 
Pip

I've been recommended 100mg MWF to start by experienced AP doc.

Jan

 

I started out on one 100 mg pill seven days a week.  The lightheadedness which developed was bizarre - I felt like my body was going to levitate.  I am now on pulsing MWF and dropped my MTX, Plaquenil, and Folic Acid, plus the rheumatologist.  I have a great family practitioner who has taken on my whole case, which she says she rarely does as her practice is colds and injuries. 
 
Minocin cured the fatigue/feeling deathly sick syndrome.  That's all I wanted and I will deal with the physical consequences as they pile on.  It's been going on for years anyhow, and all I wanted was my energy back, and it did.
 
Good luck and hang in there - its worth it.  Take care ~~ Cathy
justsaynoemore2008-07-18 18:56:47Thank you Cathy.  Thats all I can type now my hands hurt too bad. Hugs, Paula, hugs,
 
Pip

Pip  youre so nice   Paula

Tomorrow is 23 months on AP -
 
I saw my AP doc yesterday.  I'm doing great (I've been saying that - lol) but my labs have started dropping again.  My RF is down to 308 and my strep titres are down to 240 from 280.  Phew - that was worrying me even tho he was happy about the numbers even when they were going up.  Go figure.  Anyway, everything else is 'normal' and has been for almost 15 months??? so when that RF hits 0 I get to be in remission.  I just hope it doesn't take forever!
 
Hugs,
 
Pip
Hi everyone and a special hello to you Pip! I'm researching AP therapy and this thread is a great source of information.  I'm hoping that one of the three doctors I will discuss this with will agree to monitor this therapy for me. 
 
One thing that concerns me...I read that diet plays a very important part in the success of this therapy.  That could be a problem for me.  I do attempt to eat fruit a lot and some vegetables (though not enough) but the kicker for me is avoiding the sugar and grains.  How well do you all do diet-wise?  Are you strict about it?  If not, did it hamper your ability to see improvement? 
Jesse - besides this thread, Roadback is a good place to see that people are all over the place on that one!  Some swear diet made a huge difference, others say they haven't changed a thing.  It's pretty much like here and diet with the traditional meds, in my opinion.

My daughter on AP eats like all of her five yr. old friends do.  Try as I might, it's sugary....
One of the top AP docs in the country - been doing it for around 40 years - says diet does not matter.  Of course, improving one's diet is bound to make a person feel better, RA or not. Pip - congratulations.  To bring your numbers down so much is a true accomplishment.  Thanks for being a "cheerleader" and if I hadn't of tumbled into this room chasing Alan who had posted one of his wonderful poems on another site, I would have not known about the DMARDS of minocin.  Huggles~~CathyThanks Suzanne and Joe, that's encouraging.  My husband will help me stay on the straight and narrow as much as possible, but I know myself and sugar is my middle name and bread is my nickname!
 
BTW, I've told my husband about AP and he's very supportive.  Anything to get me off those RD drugs.  The fact that AP has good diet/supplement recomendations is also very helpful.  He's really big into organic, healthy diet, ginger tea and many things AP seems to encourage.
 
Finally, I got a return call from my PCP who I had asked about AP.  His nurse said he's not well versed in it but will be happy to discuss it with me.  I think I can get him on board and I will go that route if the RD won't help me and the AP doctor isn't approved by my insurance.  
Jesse - that's how I had to do it.  Never even asked the RD because when I asked in the very beginning how long I had to be on the MTX, he was shocked and said "forever".  I know that's a lie.  I asked my primary, and she went to the RB site to the Doctor's section, and said why not, you are 51, in pain, what's there to lose?  I love her.  Good luck - AP isn't a cure all, but I don't feel sick anymore and the fatigue disappeared.  And I know the inflammation is way down from these wrinkled fingertips and fingers from being stretched out of shape from the swelling that wasn't detectable by any trained medical professional. 
 
At this point in my life, I don't have much time to mess around with brain-washed RDs who can only prescribe one drug for RA.  Insane.  Take care and it's good you are taking such a good long look at AP before making a decision.  I made up my mind in about two seconds when I read the infection-connection premise.  ABX have always made me feel better for a good long time, I just didn't know I had RA and what extra benefit I was getting for my chronic sinus infection :)   Take care and you have a great hubby too!  Cathy
justsaynoemore2008-07-24 18:30:13

Jesse - since I was Palindromic and because I was newly diagnosed, I had it in my mind that I'd be on the meds a year and be easily cured.  It takes a lot to wrap your head around the idea of 'chronic' illness.  And a lot to realize that a bunch of different factors contributed to my 'coming down with RA' at all. 

So, no I didn't do the diet - I'm slow switching over to it.  We've dumped some of the Splenda for Stevia.  (Hubby uses some because of diabetes and we don't think you can cook with Stevia but who knows LOL).  We stopped buying a lot of non-organic foods.  I actually have cut my bagel consumption because I think it's in my way of the 'cure' and switched to Oatmeal for breakfast.  I mean - I've done this really slowly because I just wasn't able to wrap my head around the diet aspect. 

My guess, from all my research, is that the diet thing is really important if we're going to attempt to go med free sometime in the future - and that's my goal.  There is a lot of interesting research on how gut mucosa influences immunity.  So, because my AP doc says 10% end up going med free - and because I want to be in that 10% - I'm learning about how to 'heal the gut'.

And if you think the difference between AP and non-AP rheumies is tough to understand - wait until you look at the 'diet wars'.  LOL

Hugs,

Pip

Edited to add - I'm slowly working on everything that got me sick in the first place.  I'm working on fixing my mineral panels, trying to teach my body to sleep right, exercising and losing weight, figuring out how to deal with stress - the list is endless but not insurmountable.
 
 
Pip!2008-07-24 19:17:55sorry if I am late here...

Pip, did you have your appointment today?

Diet is the bulk of it... I think these super supplements I got have made me hungrier?
been eating alot.. but not gaining any weight. still at 108.

I havent done the antibioitc yet.. I read all the side effects last night... I am slowly looking at it but I
am not 100% there yet. Have lots of energy back... and still havent received the energy boost and multivitamin.

Hope all is well with visit.. Let me know .
My next appointment is Jan 13th.. tues
I already booked flight. Jan 11 go home jan 14th
I am definetly sold on diet and supplements and stress management.. not sure I can do the antibiotic

I am scared... my philosophy is if I want to be in the top 10%   go there..
if I believe it... it can happen.

working on removing stress from life next

hope all is well







Doing fab Donna!  And yes, it was Wednesday.  Love those guys!
 
If you aren't ready for the antibiotic - then don't do it!  Only you can decide what to do about your body.  You're doing it the hard way!  LOL
 
Hugs and more hugs and we'll go out the next time you're here!
 
Pip
 
Edited to say - wish I could have done the diet first - I was such a baby about that bagel!
Pip!2008-07-24 21:24:23I am such a baby about the antibiotic:)

:-)I am such a baby about sugar.  WWWAAAAA!  I want ice cream!  I want some cake!  Chocolate baklava?  Gimme!   LOLI just read over the side effects list for minocin, assuming I'm able to take it with my past allergy history with tetracyclene. (The itchy eyes may have been from something else) .Tinnitus and hearing loss can happen.  Major problem. I'm already deaf in one ear with major tinnitus in that ear and a small amount in my hearing ear.  Not good.  (Sigh)  This isn't going to be easy, I can see that.  Trying to decide what to do is making my hair hurt.  ConfusedJesse -
 
I have a packed day today and spent my morning researching nanobacteria and OA so I have to run - today is the library, ice skating (gonna see if it's the skates), a play date and any store that sells Webkins. 
 
You are on a subject that is near to my heart.  I have a friend that has AIED and is seriously looking into AP to treat it.  She is the best researcher I know. 
 
The thing is - is the AIED a result of the body attacking itself - or is it a herx which will be fixed by AP.  I'm leaning towards herx because of the studies I've seen.  However, I don't count - only you can make that decision. 
 
Please search here on AI for AIED and 'hearing loss' and similar.  I posted a ton of stuff in the last year or so.  You might also search Google and/or PubMed for mycoplasma, nanobacteria (my new love) and infection, bacteria or virus. 
 
When I get home I'll search my filing cabinet (still under construction) and post what I found for you. 
 
Hugs,
 
Pip
 
Edited to say - PS - if you can, send me what you find so I don't duplicate it.
Pip!2008-07-25 09:46:48I've been doing the whole lemon/olive oil drink and it does help to detox.  Definitely.
 
Jan
Hi Pip,
 
My nephew, his wife and twin 3 year old boys arrived for a few days visit so I won't have time for any additional research for a while.  I hope to carve out enough time to sneak a peek here and there on the boards, but we'll see. 
 
I worry that if I make the wrong choice, either staying with the DMARDs or going to AP, I'll lose what's left of my hearing.  Hopefully I'll learn enough to make an intelligent decision one way or the other. 
what is difference between brand name and generic brand of doxcylyine?
I was given the brand name...
I am considering taking it.. the dr. wouldnt had prescribed it , if he didnt think it would help.
wish I had more guts... trying to research this lazy thyroid they said I had.
Turns out from what I found that by doing the diet thing, taking things like kelp, seaweed, raw veggies all good to stimulate thyroid. avoiding grains, soy and flouride seem to help improve function. These things all improve my arthritis.. I knew that.. maybe it is a thyroid thing?   
maybe I need to relax a bit.. I feel so anxious about this and that cant help.

Jan, how are you doing on the treatment?
any relief or side effects? We got different medicines didnt we.
I got all the supplements... did you get any?
I know they are pricey but they really work good.
I have alot and they seem to keep coming in each day.
I got my multivitamins today... still waiting for the energy boost.


Well, I'm taking a short break from the family activities and I thought I'd do some of the research you suggested, Pip.  I did find the article you had posted a while back on nystatin and I'm taking note of it for AIED hearing loss.  That, along with aldosterone is something I never knew about as a treatment for AIED.  My new tinnitus and hearing is stable so I'm just trying to make sure it doesn't get any worse.  That's where my concern for minocin as part of AP therapy came in.
 
As for the mycoplasma, nanobacteria, I Googled that and I have to admit, this kind of research is beyond me.  I just don't have the knowledge to absorb that kind of material.  Besides mycoplasma being linked to pneumonia and nanobacteria being some form of ancient bacteria that some researchers don't even think exists, I'm lost for the kind of information I need with regard to minocin and hearing loss.  I did learn that like many drugs, minocin can not only cause loss, but treat it as well, just like MTX.  Come on already!  This is confusing enough without the drugs being a double edged sword.  It seems like we AI people can't get a break.   
 
Anyway, I'll keep plugging away until I learn enough to feel comfortable making a decision about  AP. 
Jesse -
 
That's what surprised me on this when you first posted about the hearing.  When I saw the charts I was like - whoa - its just like us!  Then I found stuff that says it can stop it and that thats what I sent to my friend.  She's doing Chinese medicine right now as she thinks thats safer.  Go figure.  OK, my husband is making omlettes and then I have to take the baby to get her hair cut and then when I get back, I'll start another AIED thread and post everything I can find in my cabinet for you. 
 
As for the nano-bacteria - that's what's implicated in OA too and it also responds to tetracyclines.  And there's new research there showing it's probably alive because it responds to light.  Sigh.  Is this stuff cutting edge or what?
 
Hugs,
 
Pip
Thank you Pip.  When I did a search under your name I did find a couple of AIED mentions, but anything you have will be welcome.  I know there are a few of us here who deal with hearing issues due to either the meds or AIED.    Jesse - I am adding my two cents from another thread going about dropping your current DMARDS to just minocin, which is the idea.  I kept up the MTX for a few months, suddenly developed high liver enzymes, did a two-week wash that wasn't any fun at all, and never started back up.  A few months later I dropped the plaquenil, but not in time I fear.  I admire you for taking your time and doing your research.  I did too, and since I just don't get or follow this "antigen" part, I am so glad I found out about AP as an option, as the RD didn't give me any choices at diagnosis, just his one cure-all MTX drug and out the door.  Well, just had my two months labs and checkup, and everything is completely normal, with a RF of 67.  Everything else is perfectly normal, the liver tests are completely normal again, thankfully.  My white and red blood cell counts are finally over the hump and rising steadily, not one point off of being below normal like the last tests, so I am very very very glad I quit the MTX and the Plaquenil.  I have no idea why the rheumatologist pushed my blood counts way down into subnormal with the MTX. 
 
And I had found the blood test for MCTD and it was normal too.  So, of my original rheumatologic diagnosis 2 years ago (backed up by three verbal second opinions, no testing) of MCTD of RA, lupus, scleroderma and polymyositis has been proven through further testing to be negative for MCTD, lupus, scleroderma, leaving only RA and I haven't bothered with the polymyositis part.  Guess that means I only have RA!  And responding and in control using minocin alone. 
 
I got plugs put in my tear ducts and my eyes are moist again and it feels GREAT after years of dryness.  My opthamologist says its probably post-menopausal and also said for having A/I my eyes are in GREAT health - he loves it that I am on the minocin as its so good for eyes.  He said this despite having a corneal ulcer and a beginning abrasion. 
 
I herniated out and compressed into my spinal sac my L4/L5 disc, no wonder I was hurting.  It started getting better at 10 days which is the "recognized" number for days for back problems to resolve, so my chiropractor and I are keeping this degenerative disc disease, 4 collapsed discs, several herniations and tears (all not related to RA of course) under control.
 
Progress, finally.  I am so thankful I found AP through this forum.  Thanks to all the other APers in here to show me my way.  Cathy
I replied to the post "The truth about minocin" which was posted by levlarry in January 2008. Even now I don't require pain medication for my RA but from time to time take tramadol for an ongoing knee problem which has shown much improvement since beginning physical therapy some months ago.  Life Is Good.
--------------------------------------------------------------------------------------------------------------
LevLarry: Certainly hope your ready for this!

In April of 2007 I began taking minocycline.

Since my medical history will prove I tend to have positive or negative reactions to drugs within a short period of time. My gp began with a 25mg. dose every M,W, and F for two weeks and since I had no problems with this dose but was already beginning to show improvement we went to 50mg. every M,W, and F. The only problem I had was mild tummy and belly discomfort for a couple of weeks. No diahrrea or anything else.

So we, my gp and I, have agreed to stay at 50mg. I have a prescription for tramadol which I haven't used for months and months and months for the RA. My left knee is in need of medical attention and there are days when it hurts so I've taken the tramadol for the pain. (Have an appt. with an ortho specialist in Februrary - 2nd. opinion required by insurance.)

If you knew what the mtx did to me you would realize the decision for me to take minocycline wasn't difficult at all.

SmileThank you to all that provided so much info in regard to AP therapy and made it easier for me to do my own research.



watchingwolf2008-07-31 05:31:33JSNM and WW it's good to read your positive posts.  I'm especially encouraged by your post JSNM, because you and I have some similar issues (DDD, DES, taking the same RA drugs) and I'd love to think I could get the same result. 
 
My last concern is adding yet another drug to my mix.  My poor liver!  So far the numbers have creeped up only very slightly, not enough to take me off anything, but adding the minocin or other antibiotic for perhaps many, many months does cause some worry.  I wish I knew how long it would be before I could drop the MTX and Plaq. 
 
Anyway, I'll have to wait until my next RD appointment.  We've decided to go on vacation for two weeks in August and I don't want to play with my meds while I'm away from home.  I'll have a good long talk with the RD and go from there.  I'm really excited at the possibility of being able to stop the MTX and Plaq. some day. 
It's good to see everyone's positive posts!  Here's to more to come!

We are halfway through my daughter's Lyme-ish treatment with amoxicillin.  She seems to be pretty much the same - which is not bad at all, considering she is happy, active, and pain-free.

But still, I'm looking for sign!  Something!  Please! She seemed to have a little more energy, but we weren't looking for improvement there, thank you very much.  I need something else!

This morning, she came into the kitchen giggling, "I had a dream".  She never shares dreams with me.  Was it a sign????  She said she dreamed we went to see the ped rheum.

Sounds like a sign!  Was it a good dream or a bad dream, I asked.

"I don't know.  I woke up while we were still in the waiting room."

Still waiting for my sign, sigh.  And that song, 'just give me some kind of sign, girl' is stuck in my head LOL.
Still in the waiting room!  LOL!
 
Hugs,
 
Pip
at least it was a dream and not a nightmare [QUOTE=buckeye]at least it was a dream and not a nightmare[/QUOTE]

I don't think she would have a nightmare about the ped rheum - she's totally smitten!  She says, "He's the silliest doctor EVER!"   She giggles and laughs through the whole exam.

He probably thinks she's got mental problems or something LOL, because he's usually not trying to make her laugh.....the girl can't help it, as the saying goes.

.

justsaynoemore2009-06-16 17:35:31Suzanne, I'm so happy to read your positive post about your sweet girl.  More good news to come, I'm sure!!!A SIGN!!!!!!  A SIGN!!!!!  A SIGN!!!!!!

Had my older daughter at PT today (don't ask; be thankful I have spared you some of our never ending drama!).  Had to take my little Lyme-ish one with us, which is unfortunate because she definitely has a hard time NOT being the center of attention in any type of medical setting.  

So today to bring the spotlight over to herself, she did push-ups.  She's five and she did real push-ups.  Real push-ups on a wrist that doesn't extend.

First, I was like, "Stop showing off", then I realized and said, "I can't believe she did push-ups with that wrist!" and the therapist said, "I can't believe she did, either!".

So I had a sign witnessed by a medical professional.   Yippeee!!!!!
SUZANNE !!!!! SUZANNE !!!!! SUZANNE !!!!!
 
Wow.
 
XXXOOO to the best Mom in the whole world. 
It's always better to have any sign witnessed by a medical professional - altho, then the others just say it's a fluke.
 
Hugs,
 
Pip
Suzanee -- how wonderful! Great news. I can finally use my right hand again in yoga class, but when i tried to do pushups (girl pushups, on the knees, that is) it is still painful. I got through 5 though, and before I couldn't do any. So, we will all take progress.
 
Enjoy and celebrate.
 
Bonnie
Thanks all!

Bonnie, thanks for sharing!  I'm glad you are seeing progress, too, and I like when I see plaquenil involved because that would be a next step that seemed reasonable to us, if needed.  Take care.
Suzanne, I am thrilled at your great news.  You must be just over the moon!  Congratulations.  Hello ...
I am a new Aper...
pulsing MWF vibramyocin..
I am not sold 100% on it yet Pip..
but I am going through trial and error
phase.. been just not sold on bacteria connection totally
think stress and emotions trigger it all and nutrition can heal the gut so much better when we feed our body healthy immune super foods and deal with the hidden feelings and stress...
Is there a stress RA thread Pip...
I know we say diet... and it helps me so so much.
But we swim Pip... what else does everyone else do to help with stress.
Dancing.. yes I do that to.. but I am constantly looking for new ways in dealing with so much.
School starts in three weeks...
I am trying to prepare... but anxiety is setting in....
I am feeling good but I need to relax. How do you guys do that?


Donna - some of the big AP researchers aren't sold on the infection connection - they think Mino is some sort of powerful cell regulator.  Others, such as myself, think its killing stuff. 
 
I would think that if you believe in the leaky gut aspect then it's even easier to believe in the infection connection.  One of your bodies first lines of defense is the stomach and the acid it produces.  Think of H. Pylori and the link to ulcers and heart disease.  Something got out of the gut and started the cascade that becomes disease.  To my way of thinking it can be only heart disease or it can be RA or Lupus or cancer.  Depends on your specific genes and what your body is susecptible to. 
 
Have you read the New Arthritis Breakthrough?  Or The Infection Connection by Kathleen Poehlmann?  (spelling). 
 
I think stress is part of this big time (at least for me).  And again, it ties to leaky gut.  What happens when we're under stress for a long time - the Adrenals produce hormones that say 'fight or flight'.  The stomach starts to roil.  And in that kind of really oversimplified situation its easy to see how stress helps something to get out of the stomach/Gi tract.  Also, I've seen research on the hijacking phenomena of microbes - they siphon off our needed nutrients to fuel their growth.  One of the ones they really like the most is adrenaline (spelling - damn - you'd think I'd have learned to spell this stuff before LOL).
 
Want to hear something funny - I don't do anything to relax.  I'm not a relaxed kind of girl.  I need to keep busy and keep studying.  So, unless reading science counts, I really don't do anything to relax.  When I was first diagnosed and reading about how it's necessary to reduce stress I thought "the body is supposed to handle stress, any cure involving no stress is not a cure."   I only swim and ice skate because I'm trying to overcome my apparently possibly reluctant thyroid and lose weight.  There is too much research out there showing how fat functions like an organ - ie - the fatter we are the more hormones we concetrate in our fat cells - and hormones are something the microbes love to live off of. 
 
You don't have that problem.  LOL
 
Hugs,
 
Pip

This info may be of interest to many. * Gentle Hugs *

/www.streetdirectory.com/travel_guide/12880/rheumatology/when_are_antibiotics_used_to_treat_arthritis.html

//arthritis.about.com/cs/antibiotic/a/antibiotictreat.htm
watchingwolf2008-08-12 11:33:27APers, how many of you are doing this without the support of your RD?   I don't know how my RD is going to react to my desire to try this.  I'm waiting for my copy of "The New Arthritis Breakthrough" and I'm hoping to be able to argue my case intelligently.  But if he's against it, I'm not sure what to do.  I'll see him next month and I'm using this time to prepare.  So, tell me, what does your RD say about this?  Jesse - just ask.  If they say no, ask you primary.  I fired my rheumatologist and my primary is handling my RA, quite well as I am feeling great.  If they both say no, find another doctor.  25% of rheumatologists are now prescribing minocin.  Perhaps because they are catching it earlier before it becomes severe.  Unless you are in the category of catching this overnight, which happened to a male friend of ours - one day he was fine, the next day, severe RA.  Cathy justsaynoemore2008-08-13 03:52:50I'm the one that blew thru 10 docs trying to get AP.  I was told everything from 'it doesn't work' to 'you're severe (actually early onset severe in my paperwork)' and it doesn't work.  People I've helped with AP have told me docs have told them everything from 'you'll get hepatitis' to 'you'll get Lupus' (both go away when the med is stopped).  None of the docs they saw told them that part tho.  If you're steering a patient to serious meds you don't want true info to interfere with what you're saying. 
 
All MD's except one were willing to prescribe, and none were willing to monitor me.  Go figure.  At #5 we gave up and flew out of state to see an AP doc.  When I got home I 'interviewed' the last 5 docs.  Same story.  Doc 11 was a fluke while I was loading the moving van to move out of state because we couldn't get the medical help I needed.  He laughed when I said 'interview'.  He's my new primary in MI.  Nice guy and he is monitoring me.  The MI rheumy at the great U, knowing we wanted something for 'infection' never told me about AP.  When we went back, with the New Arthritis Breakthrough in our hands, he took one look at it and said 'well, it's better than anything I can give you' and technically is my local rheumy as he prescribed. 
 
My mom, who has severe OA, watched my downfall.  I mean, I went down hard and fast - diagnosed in 3/06 and on a walker by July and had to use a wheelchair 3 X by August when we were flying out of state for help.  She told my relatives I was dying.  She still thinks I was dying.  I felt like I was dying and I guess it must have shown.  So, when I start to get better, she decides she wants AP for her OA - and can't find a doc who will help her.  It took us a year to find her a doc to prescribe there - same song and dance from every doc she sees. 
 
My SIL, worried that I'm leading mom on a wild goose chase, contacts the great U's rheumatology department and asks a doc about AP and if it will work.  The doc tells her 'we don't really use that here'.  Except, the doc she contacts was mine - and he damn well knows a few of his patients are on it - as I am - and we're all doing great. 
 
My point in this ramble - read and study and if what you see makes sense and you want on - just resign yourself to shopping docs until you find the one that will help you help yourself.
 
Pip
Oh boy, that sounds discouraging.  But I'm fortunate in that I have found a doc who does AP but he's out of network.  I'll have to work on that.  And my PCP isn't familiar with it but will discuss it with me.  So that's good.  I see the RD next month and I'm really hoping he'll support my decision and keep treating me while I'm still on the RA drugs.  I like him overall and he's supposed to be tops in his field.  As long as I stay on his meds for a while he shouldn't object too much, as far as I can see.  Oh well, to be continued......
 
Thanks for your replies. 
We are having amoxicillin withdrawals.

Not my daughter.....Me LOL.

We have a gap between our follow-up appt. and the amox ending.  I want to 'freeze' things like they are, so they will know if anything changed!  I'm afraid she is going to 'backslide' before we get to the appt.

Also, there is a void in my life I need to fill now that I no longer have to keep up with and space out three amox doses equally throughout the day.  It had to be refrigerated, I was having to pack a cooler bag for every afternoon event.  She's sleeping late today, and I keep catching myself thinking, 'I better get her up, or I'll have to keep her up late tonight for the last dose'. 

Sigh.

Also, the whole family's drs. are all familiar with my little one's......saga.  In the past month, as three different ones have heard the latest, they have each had basically the same response:  'Wow.  They don't know what she has.'

"They" refers to the med school where all these drs. trained, so it seems like it pains them to say such a thing LOL.
Jess, my rheumatologist does not belive in AP or infection, but she was willing to prescribe it for me -- along with the plaquenil. I look and feel great now -- from knees that were swollen and could not bend -- they are perfectly normal -- I can ride my bike and do my yoga again. I am still on the plaquenil -- but have cut back from 2 pills/day (400 mg), to 1 1/2, and now to 1. Pretty soon I hope to go to every other day. I know the minocycline is working. I hope to do the minocyciline MWF, and the plaquenil the off days. I am changing very slowly.
 
For stress, yoga has been a godsend for me. I go to class every week, and practice on my own another 2 or 3 times/week. Sometimes it is for only 20 minutes -- I sit quietly, focus on my breath, and do a few simple, restorative poses. If you have not tried yoga I strongly recommend it. It helps me stay very calm.
 
Bonnie
bonlucas, I get really excited when I read posts like yours.  I've just finished The New Arthritis Breakthrough and am starting The Road Back.  I feel certain that I have to at least give AP a try.  I've been pretty well controlled with the RA drugs as far as pain goes, but I really think it's just masking symptoms and not really keeping the disease in check.  And of course there are those nasty MTX side effects I've been getting.  As long as I stay on the RA drugs in the short term, I don't see what harm there is in trying AP.  
 
Bonnie -
 
I'm very interested in yoga - any suggestions on how to figure out if the teacher is any good?  Does it even matter? 
 
Also - love that you're taking it slow and not trying to be a downer, but you know it's a possiblity to herx when going down to MWF?  It's really common for people.  That's why I did the pulsing to start - I was a wuss and didn't want to go thru that again.
 
Jesse -
 
If you've read the books, you know it's 2 steps forward, one step back.  The end result - you should arrive in one piece!  LOL
 
Pip
 
Pip
my nursing drug guide said that the antibitics could cause intracranial hypertension.. that could be a stroke?
They said that this does not go away after stopping the medication... This is giving to lots of people fot lots of reasons.. it said this was an adverse reaction.. also that you could have difficulty swallowing, pericarditis and glossitis... I have to read my nursing books.. so I am just also more scared now.. I have been gluten free now for two solid weeks .. NO cheating... some relief but not complete but it is mild...
I am depressed I am missing real food:(
I am scared of the doxy ok.. scared of side effects of long term use of the antibiotcs.. the other medications are scary as well... so thats why I am depressed. I am on amoxoccilin now for a sinus infection.. I stopped the AP .. all supplements.. what is the use.. I am feeling defeated..
the RA monster has me in a hold.
I need help! Strength I need hope!Somebody correct me if I'm wrong - but intracranial hypertension is High Blood Pressure.  There's HBP all over my family and I don't even remember reading anything about HBP and/or stroke when deciding on using AP.  I am terrified of having another stroke and am glad recent Mino research says Mino will seriously curtail damage in the event of a stroke.  Have you looked at the ARC guidelines and side effect profile of Mino?  I don't even think that's mentioned there - so that makes me think it's exceedingly rare.  Which is not to say 'ignore it' - it's to say - 'watch it'.  I've seen posts on the RB on people's BP normalizing - low going normal or high going normal - so I'm assuming it's something the med corrects.  And I assume the docs watch and medicate if it's some sort of herx. 
 
Donna, your books were written well before people started saying the tetracyclines work for AI diseases and I don't think there's a med text book out there that says much positive about it.  If there were, I'm thinking more docs would be willing to try it.  You're cutting edge whether or not you want to be.  :-)
 
You have to take some med - like it or not.  Maybe you should look at the side effect lists for the other meds.  Mino is safe enough to prescribe to teenagers for acne.  I'd really like to see what they say about the other meds. 
 
Yeah, this is why I'm such a slouch about the diet connection.  It's there.  It can work - but I want real food.  Yet I have to do it at least for a few years.  What a baby I am, huh?
 
Have you considered your depression may be a herx?  As of now, I think I'm the only person to report getting depressed on Mino.  Everybody else reported the first thing to lift was the depression and fatigue.  Hubby had to follow me around making sobbing noises until I laughed and I'd have tears rolling down my face and trying so hard to stay upbeat.  7 1/2 weeks of crying.  7 1/2 weeks of hubby following me around to make sure I understood 'its a herx'.  It was horrible.  Then - poof - gone and back to normal. 
 
You are not defeated - you are definately herxing (sinus infection) and it's hard as hell to have faith when you're in the middle of it.  Just keep putting one foot in front of the other and everything should be OK.  Remember our stupid mantra - two steps forward, one step back.  God, I hated that.  LOL
 
Hugs and more hugs,
 
Pip
PS - thanks for posting this - most people feel they can't talk about the negatives with AP (and there are negatives to that whole 2 step thing).  But if we don't post the negatives people don't see how to work around the 'problem'.
 
Edited for spelling
Pip!2008-08-26 08:13:31I stopped the AP .. all supplements.. what is the use.. I am feeling defeated..
the RA monster has me in a hold.
 
Donna, you need to be on medication. Yes, it's awful to have this disease, but we don't get to choose whether or not we have RA. We have it. We get to choose how we react and what we do to make the most of our life. It doesn't have to be AP -- it can be a more traditional path if you need the support from your doctor. My rheumatologist says there is almost no one who should have to suffer anymore -- there are many options for managing this disease.
 
I love AP. It is working for me. I feel great. Sunday was my 55th birthday. I went to yoga class from 8:30 to 9:45. At noon I went for a 1 1/2 hour bike ride with my husband. I was tired afterwards, and took an hour nap -- but it feels wonderful to be active again.  I am so lucky. It is not perfect, but it's darn good. Set your sights on some solution and give it everything you have. This disease does not have to defeat you. Please do not surrender.  Email me if you want to talk.
 
Bonnie Lou
Pip -- the right teacher can make a huge difference in how much you learn and how much you enjoy yoga -- but you can get so much out of it regardless. When I started, I used videotapes. My kids had bought me one called "Yoga for Stress Relief" as a present one year. I started doing it and I got a little better. I bought some other tapes and expanded. I did that for several years before I even took a class. (I was a widowed/single parent in those days, and it was very hard to get out of the house for a class). It was great to have someone help me with the poses.
 
Now I can tell the difference between a lousy teacher, an average teacher, and a great teacher. I have found several teachers whom I adore. Start with a video -- Rodney Yee and Suzanne Deason have great beginner videotapes. There are others on video who are also good. A class is good if it takes some time for breathing and spirituality (at the start and the end of the session), if it encourages the use of props and alternatives if a pose is too difficult for you, and if the teacher makes you feel good about where you are. Yoga is not competitive. It's about understanding your body and its limits, and helping you reach just to your edge. It should never hurt. But it should be work and take effort.
 
Hope that helps. Bonie Lou
[QUOTE=Pip!]Somebody correct me if I'm wrong - but intracranial hypertension is High Blood Pressure.  There's HBP all over my family and I don't even remember reading anything about HBP and/or stroke when deciding on using AP.  I am terrified of having another stroke and am glad recent Mino research says Mino will seriously curtail damage in the event of a stroke.  Have you looked at the ARC guidelines and side effect profile of Mino?  I don't even think that's mentioned there - so that makes me think it's exceedingly rare.  Which is not to say 'ignore it' - it's to say - 'watch it'.  I've seen posts on the RB on people's BP normalizing - low going normal or high going normal - so I'm assuming it's something the med corrects.  And I assume the docs watch and medicate if it's some sort of herx. 
 
[/QUOTE]

Intracranial hypertension is high pressure of the cerebrospinal fluid - it's a different system from the blood circulatory system.  Yes, they're all connected in a way, but ICH can have many different causes completely unrelated to high blood pressure.  Tumors, CSF drainage/circulation problems, medication reactions, lots of stuff.
Bonnie, Pip, and all, could you please tell me how long you have been taking antiobiotics, what days youre taking and if you have to be on it forever?  I am trying it again, have taken one pill three nights now with no bad side effects.  Thanks for any advice  you guys can give me.Thanks...
all

Here is something I found on it... it was just a google search but thought I would share...
I just want to be careful.. I do not not want more problems..
diet may help...


I am so against some meds.. i cant even talk about it.. but I think dealing with any stress is better than any pill... I want to learn yoga too.

Gluten free is so hard... redness is coming down in my fingers... what do we know of chinese medicine or acupuncture?? I dont know too much... I feel like I am running out of things to try. I know the tango dancing helps...

I bet my RA would go away if I could get the feelings out I hold in and I bet if I worked through the pain of my stresses .. and with things like yoga, dancing and diet I could do it again without the meds..

just my thoughts.. I am exploring AP   I am still not convinced.... but will see.http://www.merck.com/mmpe/sec16/ch216/ch216c.html

here is that article.. sorry

My 2 year anniversary was yesterday.  I was going to post about it but Donna is having a hard time right now dealing with this and I didn't want to obscure what she's going thru.  Maybe in a few days. 

I'm doing the Brown Protocol - that's 200 mgs MWF.  Dr. Brown thought that method produced maximum microbe killing. 

My AP doc says maybe 10% of his patients eventually go med free.  I intend to be in that group.  :-)  But there is 'wishful thinking' and then there is stupidity.   I define the difference in those states as being very similar.  If I can still 'feel' the RA - and in a sustained clinical remission per labs - then no matter what the doc/labs say - I'm still PRA/RA.  I think a lot of us want it sooooo bad we ignore small signs that we're not there yet.  Like the occasional twinge or whatnot.  If it's there AT ALL - then it's still there and we'd be insane to go off the meds.  Since I don't think I'm insane - I want to be sure I've fixed all the problems that got me here in the first place (ie sleep problems, possible thyroid, stress <thanks Bonnie about the yoga - I'll get those tapes> etc.)  Then I'm going to go med free and see what happens.  If I make 5 years with no problems - I'm claiming the 'cure'. 

Best case scenario - I get my 'cure'.  Worst case scenario - I have to take a few pills the rest of my life (assuming I get past the year 7 rotate my antibiotics hump). 
 
Paula - good luck and we're here if you need us.  Ask questions away.  If you herx too bad, skip a dose.  Two steps forward...
 
Pip
post away Pip.. I am fine.. I am just not strong now... I need someone to cradle me now is all .. It am scared I wont succeed in school , I am tired .. maybe I will start again after these amoxicciln pills..
and start once a week or something build up to two.. just down now and need a boost. Please if you feel good and want to post your good news.. please do so. Body hurts and all I feel like doing is crying. I just cant . I hate when I need a good cry and it wont come.. That would help..
Then I would feel much better. Please go ahead and celebrate your successes. And dont worry about me.. I am tough.. I might cry alot.. but that isnt a weakness. It is a healthy thing. I am stressing because I know I need to but it wont come out. Then I would be ok.. I am going out with my kids all day tomorrow. They will make me smile too. Nothing is going to stop me.. definetly not this RA.
Thanks Pip, Im going to try the Mon Wed Fri thing and see how that goes.Paula - just take it slow and each time you think you can handle it, lower one of the meds until it all evens out and you're off of everything else.  Oooh - PROBIOTICS - skip those and I'd go as far as to say you're begging AP to fail.  Make sure you get some good ones. 
 
Donna - you have every reason to be scared.  This is a hard road, what with most docs not being on the same page you are.  Then add in going to nursing school where they're going to tell you its not going to work never mind the WORK involved with getting a degree like nursing.  You're whole life is in turmoil with RA/school/stress right now and in the beginning of AP, stress takes a HUGE toll.  I think you should just relax (yeah, easier said than done) and play with the kids.  That's the best medicine there is.  It's the reason I chose AP.  I wanted to play with my baby.  We've a Barbie date coming up next week - LOL
 
Pip
Hi Paula. I started taking antibiotics last October, so I am just shy of one year yet. I am guessing I will be taking these the rest of my life -- or until we learn something new that suggests another path. I started on the pulse dosing (M,W,F) and only take 1 pill/day.  I caught my disease early. My bad symptoms started in February 07 -- my confirmed diagnosis and medication began last October. I was much, much better in just three months. I found myself forgetting to take my celebrex (NSAID for inflammation) and figured out I didn't even need it anymore.
 
My doctor has me taking plaquenil as well as minocycline. I have cut the plaquenil back from 400 to 300 to 200 mg/day -- and I expect to go to 100 in the next month or so. I am changing very slowly.
 
I eat very well - can't remember the last time I had a soda or fast food or a packaged meal. I dont follow any extreme diet, but I did have blood testing for food allergens, and I have cut out the things that are a problem for me (milk, almonds, and so on.) I am maintaining a very healthy weight, try and get lots of rest, and appropriate exercise. Getting well and staying well takes a lot of intention. But for most of us, it's possible. Good luck.
Thanks Bonnie and Pip.  I forgot abot the probiotics, I need to go buy some.  Pip, Bonnie, what are you taking?  I use Solaray Multidophilus 12 available at Whole Foods but it doesn't have to be that.  Just get the biggest bang for your buck.  Like the most live strains and greatest numbers at encapsulation.  I take I think 20 billion per pill and I'm up to 6 per day.  Don't start at that much - it'll give you bad stomach upset.  Start slow, with one pill (I use with meals) and watch you're bowel movements.  Not too loose and not constipated and you're in the zone.  If you get loose again, up the dose.
 
Am I the only person on the Internet talking about BM's?  Ugg!
 
Pip
LOL, thanks a lot Pip, Ill sure watch them!!!!   Seriously, thank you.  Theres a Whole Foods by my house so Ill stop tomorrow and get some.

I am on to the 10th page of this thread ( gee I am getting good with this lingo) and my head is spinning. I am just waiting for my new arthritis breakthrough book to arrive, and going to see my RD on the 26th of this month to request AP treatment. My GP has already agreed to help me as long as I let my RD know.  I am so excited about trying this new treatment as I have been on Orencia for 4 months awaiting a miracle but feel worse than ever. I hope you guys are still around for me then. So glad to hear so much positive posts even when you are doing it tuff you stay positive......Thanks Pip for starting this thread and thanks everyone else for your imput.

Just wanted to report that while I was on vacation I went down to 10mg mtx, and am now on 7.5mg with no ill effects. And I started at 20. As soon as I'm down to 5 it's bye-bye methotrexate.Hi Paula -- I buy my pro biotics at www.benuts.com
 
 
They are expensive (almost $1/day) -- but I am testing completely negative for for yeast so I know they are working for me. I don't usually order online, as I stop by there now and then to pick up my supplements in person.
 
 
 
Annie, that's wonderful that your GP will help you with AP. I hope you get quick and complete results. But be patient -- it does usually take awhile for some relief.
 
And Gimpy -- how great that you are successfully cutting back on the methotrexate. It is always good news to hear when folks are doing better -- there is so much sadness and pain on these boards.
 
Enjoy.
 
Bonnie
Thanks Bonnie, I will try be patient, and I will keep refering back to everyones post to give me encouragement to keep on track.Thats wonderful Gimpy....I have just been reading bout you on this topic....well done. AnnieStill reading and learning from these posts.I just finished reading 'The Road Back" as part of "The New Arthritis Breakthrough" and I'm so excited to start AP.  Monday I see the RD and I've decided I'm going to really push for it.  I can't imagine what he could say to me to make me change my mind.  The side effects from the MTX is my body's way of telling me to get off this stuff.  I feel a little concerned about adding yet another drug to my mix until I can stop the Plaq. and MTX, but if it's the best way to do it, that's what I have to do.  I'm going to be needing the support of you veterans and new fellow APers too, so please stick around!  Of course, I'll be there for you too!Thats great Jesse, I am still waiting for my book to arrive, and will hopefully start AP early Oct. I will be very interested in how you go, so please keep us posted.  I am a little nervous too, but it has to be hopefuuly better than feeling like I do with all the drugs I am on at the mo.  We do have a great bunch of Vets and newies to support us though, so like you am looking forward to Oct. Hope all you other Apers are keeping well too!. AnnieSlow and steady wins the race!
 
GoGo - you're back!  WooHoo - missed you girl!
 
Bonnie - did you know about my 6 week stupidity where I moved and forgot my probiotics?  I have some sort of systemic yeast that I'm trying to kill off?  What tests do you do for yeast because I keep testing negative via my AP doc but...you know when you have yeast.
 
Hugs,
 
Pip
Pip-
 
Good to hear from you!!!!
Pip -- I do remember your posting about that on The Road Back board. I don't know what the yeast tests are --but I have the paperwork in my files at home. I will check and post the name.
 
I almost never miss a day of the probiotics. You end up being so structured -- once in a blue moon I screw up -- have even forgotten my antibiotic at home on occasion, and have had to shift my schedule (from MWF to MThSa) to compensate. It takes discipline to keep this working. But I am getting close to 1 year on AP and feeling great.
 
Bonnie
WELCOME BACK GO-GO !!!  WE MISSED YOU !!!
 
I haven't been around alot, but I have made a huge jump in my recovery from RA with long-term antibiotics.  It took a year, so thanks for telling me to never stop Pip.
 
I am having about two weeks of very very light symptoms, then get knocked down for a few days, but when I get up again, I am even stronger than before.  This is the first time in 6 years I have stopped spiralling downward and am regaining my health. 
 
And before treatment, it was a 6 year descent into medical hell while trying to get diagnosed, then being treated improperly for my low RA numbers by my ex-rheumatologist. 
 
I am so lucky I stumbled into this forum following a poem by Alan posted somewhere else, and then discovering AP in here.  I found my drug on the internet.  Amazing. 
JSNM-
 
Good to hear from you.  Hope you are doing O.K. with continuing weather stuff!!!!!
 
WHere did you see Alan's poem?
 
Jan
AW shucks, thanks you guys. I'd be posting more but I'm mega busy with post-trip organising. But every now and then I stop and marvel at how good I feel and how much I'm able to do these days. I still have twinges and get tired sometimes but it's so much better than 2 years ago. It's a slow but effective therapy.I've been reading Rheumatoid Arthritis: The Infection Connection by Katherine Poehlmann.  She has an appendix about nutritional guidelines for those dealing with chronic conditions.  I will post it when I have the time.  THey are rather lengthy but very helpful to me.  By the way, she is from southern California!!Here is a very short version of the 10 page Appendix in RA: THe Infection Connection by Katherine Poehlmann:
 
Dietary Considerations for Patients with Chronic Illnesses and Multiple Chronic Infections
 
  A Brief Outline of Eighteen Dietary Steps to Better Health
    by Prof. Garth Nicholson and Dr. Richard Ngwenya
    Institute for Molecular Medicine www.immed.org
    Huntington Beach, CA
 
General Nutritional Considerations for Chronic Illness Patients
 
The important points for chronic illness patients to remember are:
1. Do not eat sugar or high-sugar=containing food which can stimulate disease-causing microorganisms that require sugars for their growth.
2. Do not consume caffeine.
3.Reduce or eliminate milk products which stimulate the growth of yeast and fungi.
4. Reduce starch intake.
5. Increase intake of vegetables.
6. Reduce intake of yeast-containing foods.
7. Increase intake of dietary fiber.
8. Eat small amounts every one and one-half to two hours to keep the stomach partially full so that stomach acid and bile will not be overproduced and irritate the gastrointestinal system.
9. Eliminate alcohol which is converted to sugars and also damages the nervous tissue and irritates the gastrointestinal lining and tobacco.
10. Reduce the intake of cured or over-refined canned foods.
11. Increase water and juice intake.
      Suggested ratios of foods: 2/3 vegetables, 1/6 starch, 16 protein
 
Vitamine and Minerals for CHronic Illness Patients
12. Add at least a multi-vitamin, sublingual vitamin B complex and CO-Q10 to the diet.
13. Add a mineral supplement if certain minerals are not present in multivitamin.
14. Make sure enough lipids are being eaten, such as fish of fish oils.
 
Replacemtn of Gut FLora and Digestive Enzymes
15. Take a probiotic containing at least 3 billion live L. acidophilus plus other friendly bacteria at least twice a day in on antiociotics.
16. Take a supplement of natural digestive enzymes that aid in digestion.
 
Natural Immune Modulators and Natural Remedies (includes lemon/olive oil drink)
17. Add an immune modulator and a natural remedy.
 
Yeast/Fungal Overgrowth while on Antibiotics
18. When necessary, take an anti-fungal med or a natural yeast and fungal controlling remedy.
 
Note: this dietary protocol has been published in the online Townsend Letter www.tldp.com
(This was published in 2002 but think still going.)
 
Book available on Amazon if interested.
That sounds pretty much like a standard anti-candida diet. Makes sense.
Thanks, Jan Lucinda!Nice find Jan
 
Where did I find Alan's poem and then wandered over here?  You have got to be kidding, I have RA frain bog.  I know I started with a Arthritis Foundation pamphlet from my diagnosing ex-rheumatologist , and I knew I wanted to find a separate BBS of others like me.  And my wanderings took me through this site, because of stumbling over another BBS somewhere on the web where Alan published his poetry and mentioned AI, and I came through here to check this BBS out.  I have no idea where Alan posts other than here, I just like his poetry. 
justsaynoemore2008-09-08 16:16:53I like it too.
 
Pip
I found Arthritis Insight when it was mentioned on the Johns Hopkins board by someone, don't remember who.  Glad I looked there and glad someone mentioned it.Hey everybody. I saw my RD today, told him I want off the MTX and want to try AP.  I knew he wouldn't be thrilled but I was surprised by his strong reaction.  He said with my neurological involvment it's dangerous for me to stop the meds, but agreed to get me off of MTX and now I'll be using Imuran.  I'm going to start a separate post for more information on it, but so far from what I've read it's not that much different than MTX.  Right now I'm so confused and upset.  I had set up an appointment with my PCP to discuss AP and get his help acquiring insurance coverage for the AP doctor but now I don't know if I should go until I've tried the Imuran for a while.  The PCP isn't likey to go against the RD. 
 
My husband said I shouldn't be surprised.  An RD's whole practice is based on RA drugs and it's unsettling to them to think everything they've done and stood for could be so terribly wrong.   I was so excited to think I might be able to work toward an end to this disease and now I just want to cry. 

Dont cry, sweetie.  There is a TON of research on the fact that AP helps neuro.  You need an AP doc and I agree with your hubby. 

Maybe you should go to the Roadback and see if you can find an AP doc in your 'hood.

Hugs,

Pip

Jesse - my rheumatologist pitched a hissy fit too, so I fired him, and my family practitioner is now in charge of all my care.  The past six weeks have been the best six weeks in almost seven years, and I just hit my one year anniversary on AP.
 
You don't have to have a rheumatologist if you don't want one.  Hang in there, they cannot stop you from getting the drugs you are requesting, and what an awful way for a medical doctor to treat you.  You just keep doctor shopping until you find the one that will do it.  You can do this.  Cathy
Jesse, that's certainly not an uncommon story. I asked my GP to help me get my RD on board. I've been reducing my mtx slowly, but the whole AP is working and now my RD is totally working with me on it. I've gone from 20mg mtx to 7.5 weekly, and frankly I've never felt better since I first got RA. I got my bloodwork today and everything is within normal range and my sed rate is 2. I'm running and bike riding and I lived in a van all summer. It takes a long time and there's a lot of research and convincing medical professionals, but it's worth it.

When you see your family doctor take some studies on AP to show them and ask for advice on what to do. They may be able to refer you to a more sympathetic RD or even decide to oversee your treatment themselves. You might also get some names from the Road Back foundation that you can call and consult. Good luck, I hope it works out for you.
I just wanted to post that at about one year on minocin, I suddenly felt good, really good.  It lasted about two weeks.  Then I had a terrible three week battle with my low back and my RA flared.  I am now going into a new three week period of feeling great, really great, normal again. 
 
If this is the promise of antibiotic protocol, I am so very very very glad I found this forum and found this ACR-approved DMARDS for RA.  Thanks to everyone for all the support, because I am glad I stuck it out.
 
I thought after my eye duct procedure this week, it would knock me backwards, as usual.  Nope, was fine, handling it like I could do 7 years ago.  Them the car blew up, all sorts of personal stress, heavy stress at work, and still feeling great and every day feel a little stronger.  This is completely opposite of my 7 year descent in to RA hell and trying the MTX/Predisone/Plaquenil routine for 18 months, which as far as I can tell gave me osteoporosis, and no respite from my symptoms.
 
I know it won't last, but in my RA world, one minute away from the pain and symptoms is enough.  I now have 5 weeks in the past two months of feeling absolutely normal again. 
justsaynoemore2008-09-13 09:05:09Thanks for your responses.  I saw my PCP yesterday and he was more open minded about AP and has agreed to refer me to the AP doctor I gave him (through The Roadback people).  I'm hoping his referral will make the insurance company consider him "in network." I'm going to take my husband with me and my many questions and grill the AP doctor for all the answers I need.  
 
With the little research I've done so far as far as lupus and AP is concerned, I've learned that minocin is a big no-no and can worsen lupus.  It seems that it's even more important to tread carefully when lupus is involved.  That's why I don't want my PCP to do it.  Between the lupus, my tetracyclene allergy and deafness issues, I'm not going to be an easy patient to treat and I need an expert. 
 
Having said all that, I also have to say that I was told on a lupus support forum that lupologists generally don't recommend AP to treat lupus.  Here we go again.  But I am very encouraged by your successes and I thank you for posting them.  We'll see what the AP doc says.
There is some interesting information at www.mercola.com on AP.  Dr. Mercola, D.O. , is located in Hoffman Estates, IL.Jesse -
 
Your RD didn't do the Lupus tests.  JSNM - you had them done, what are they?  I'm thinking he's just spewing.
 
Either way - no, you don't use Mino with Lupus - you use doxy.  Most Rheumies neglect to mention that.  You might post on the RB for Lupus peeps to tell you how it works for them.  They tend to be very, very sensitive to the med and some get by on only 25mgs MWF for the rest of their lives.  Think about that - once you hit remission you're on less than one capsule a week to maintain.  Also, if you got the New Arthritis Breakthrough, there are a couple of Lupus people in there telling their stories.
 
Back tomorrow with the research I have on the neuro stuff.
 
Pip
 
 

Hi Pip!

I have a question, I have had RA for 18 years now. Have taken gold, Imuran, MTX, am now on Arava.  I have also taken plaquenil.  I have had only one period of extended remission in 2000.  Is it too late for me to try AP?  I would appreciate any info you have. Thanks! Smile 
 
I think it is always good to be open minded to everything, I am just so tired of not being able to walk and function like a normal person.
 
My Mom always said, If you aint tried it dont knock it!
 
Mariana

 

No, it is not too late.  You have suppressed your immune system a bit, but not drastically.  It will be a slow road, but you will get better.  The more suppression, the longer to get better.  It's kind of like rebuilding the body from the cells up - lol.  You might lurk on www.roadback.org.  There are a lot of people healing there and most of them were a lot worse off than here before they found AP.  You'll get a feel for patterns and will show you the 2 steps forward, one step back nature of healing.  I hate that part.  LOL
 
And I'm here if you need me.
 
Pip
I was told by my ex-rheumatologist in 6/06 and given the paperwork to prove him right that I had MCTD of RA, lupus, scleroderma and polymyositis.  I couldn't read these test results at the time and believed this moron.  I know how to read them now. 
 
I have had two separate second opinions, one at the University of Tampa, who looked over this same paperwork, no exam or no more tests, and they agreed with this moron.  Now I have three rheumatology morons who were wrong. 
 
A recent re-reading of these tests shows that they were ALWAYS negative for lupus and scleroderma, but the ex-rheumy and the two second opinion rheumies told me I had them.
 
I have since had the official double-DNA strand test for lupus - negative
 
Recent skin biopsy for scleroderma - negative
 
Recent blood test for MCTD - negative
 
I have RA.  Morons. 
I just want to report I'm on my 4th week of 7.5mg mtx and I feel great! I can see the light at the end of the tunnel where I can stop taking this medication completely.

I began at 20mg/week, and felt not even close to as great.

Go, AP!


Yes, Pip, if I do go the AP route I'll ask the lupus people on Roadback for their real-life experiences and assistance.  I'll also go back to the book and look up the lupus success stories.  I have to admit, the possibility of being on low dose doxy instead of the RA drugs is so tempting.  Hi all you APers, I have finally finished reading the New Arthritis Breakthough Book, done countless readings on this thread and Roadback.  I am seeing both my GP and RD on Wed, which I will ask if they both will support me on the AP treatment.
I am also taking data for them to view, but I still have a couple of questions for you guys, hope you can help me, as I am still a lot confused. I know I will have to discuss dosage etc with my Docs, but just want your views before I go.
 
1.  Is it wise to start AP without having the Mycoplasma & Chlamydia tests done? As I don't know what bacteria I have been exposed to.
 
2.  I want to start on low dosage and slowly increase, how do you know when & how much to increase to, does your body let you know, if so, how? does your weight have anything to do with dosage ( I am 50kgs).
 
3. Should I be taking any alternative medicines apart from Probiotics.
 
I kown it is all trial and error but the dosage has me lost, do you lower dosage when the herx is unbearable and what if you don't herx, do you increase the dosage? hope this doesn't sound too much like doubledutch.....thanks Annie
 
Annie, thanks to Pip and the AP members, I started taking Minocin (sp) before I was tested for anything.  I was only taking on mon wed and fri but I started to really feel better.  Later. after I was tested they found C. pneumonia.  My doc said to change to Doxy as he preferred it so I did and take it every day.  Last nite I added Clarithromycin (sp) for the first time.  This is to get rid of the c. pneumonia, hopefully I wont be on these for ever.  I am hoping to get rid of this bug and go back to either mino on mon wed and fri or doxy.  I am only telling you this to say it didnt HURT me, rather helped as far as I can tell and doc agreed.  I wish you the very best of luck.   

The tests are unreliable at best.  Same as our RF and CCP etc.  Some are sero negative.  Our joke is 'take a vial of blood and hope one swims in'.  I've even been to Dr. Chats on Rheumaticsupport.net that has doctors saying 'don't bother, you know something's wrong' which shocked the heck out of me.  But, if you are a lucky one, and one swims in...then they have more of an idea of what to do and how to aim at it.  And, as an added bonus, if you ever do IV's the insurance carriers will cover it for a 'known infection'.  But if you don't do the tests, don't sweat it.  If AP starts to fail (for me my strep titres went up) the doc knows how to add in another med until it starts coming down too.  AP docs tend to take your blood ALL THE TIME.  LOL  They are looking for if you are heading for remission.  I did not test positive for c. pneumonia but I know I have it.  So, we work with that. 

The goal is kill the microbe, not the patient.  So, the goal is to get to 200mgs MWF ASAP to do maximum bug killing.  Should you herx/flare, skip a dose or two and start again at 50 mgs and work up.  Or just start at 50 mgs.  Herxing, which sounds counter intuitive, is something you want to do.  I didn't really like that hand swelling up like Felix the Cat's glove (didn't hurt) or the horrible 6 month herx of a case of pneumonia that stopped our leaving town on time - but I'm glad they happened.  Both times I reached a new level of health.
 
I didn't trust 'alternative meds' when I started this road.  Thought a lot of those people were wacko's.  LOL  That being said, I would not overwhelm the body at one time.  This could (but may not) be a rough road in the beginning so I'd just recommend getting a mineral panel and supplement with what you're low on.  Like potassium, magnesium and calcium.  I got 2 charlie horses yesterday walking to school because in all the insanity with things I'm doing I forgot to take them for about 2 weeks. 
 
Pip
Paula..Thanks for your info, I think not being tested first is such a relief for me, as I don't know what will happen when I front my docs on Wed, as I am going to start AP the following Mon, whether I have their support or not.  I feel very positive with you guys to help me with any problems that might occur and hopefully my GP to monitor my progress.  Like you, I can be tested after starting.  I would be very interested in your progress as well as all the other APers, so please keeping posting on this thread, I love to read ongoing success with all of you.
 
Pip...Thankyou!! you have been my inspiration to start this protocal and without you starting this thread I wouldn't have known where to start...its all so confusing.  I will eventually try to see an AP Doc, but for now I will start at 50 or 100mgs.
 
Question. Do you stop at 200mgs, & do you split into am & pm? I know you said the goal is to get to 200mgs but why? I will reread the book (my hubby is reading it at the mo).
 
I understand by your other posts about the herx/flare and will think of them as a good thing (I hope).  It was so important to me to read about others on AP, so I know what to expect. I will get checked for minerals, & supplement, if am low.
 
P.S what is a charlie horse & can I ask, what star sign are you? I know you have gone through the mill this last week with this forum, I don't post a great deal, but read a lot &
believe me I appreciate all the work & research you & others do, which makes it a lot easier for people like me that don't! Hope you are feeling much better now.
Thanks Annie - I appreciate that.
 
A Charlie Horse is a really painful muscle spasm/cramp usually in the middle of your calf that, for me at least, wakes me up in the middle of the night.  They can happen in the day, but mostly night.  I got them during my onset (mineral panels really low then) and then recently because in all the madness of what's going on in my real life, I've been too busy to take my supps and it came back.  They also started when I was walking which is weird, usually you walk-off a Charlie Horse.  Sigh.
 
I'd started supplementing pot, mag and calcium to work on RLS which I had just before mense and to help me sleep better.  I'm assuming, but have no research to back this up, that since RLS is related to low essential minerals, than Charlie Horses are just more of that. 
 
Which goes to show how hard it is to get healthy because a non sick person could skip supps forever and be fine, but I'm not to that point again yet.   I will be, just not yet. 
 
Pip
To give everyone an update, I was dx with Probable RA around Christmastime 2007/2008. 

I saw 3 different rheumatologists and was told that a) I had aggressive RA, b) I did not have RA and c) I probably have RA.

I did not have a lot of swelling or morning stiffness.  They did an MRI and there was swelling found in the synovium, which explained the pain. 

My RF factor positive, with elevated sed rate and midly elevated CRP. 

I have been on Minocin (brand name that I get from www.buylowdrugs.com) on MWF, about 150mg a day, since March. 

I went back to the Rheumatologist recently and my RF factor is down, my sed rate is 2 and the CRP is normal.

I am still not pain free, but I am ALMOST pain free.

I am on no other meds, just probiotics.  No NSAIDS - they don't work for me.  If I'm having a bad day (pre-menstrual makes me flare) I take a Tylenol with Codeine.  Works great.

Thanks.
cdndream-
 
Good news!!!!!!  Glad you posted this.
Wow, that is fantastic..............just what I needed this morning, I had a two appointments with my GP & RD  today and I am armed with all the data for AP (which I am going to start with their help or not) but got a phone call from GP's office saying she won't be back for a month.  So I am going to RD only I am a bit nervous as I don't know what he will say, he is not very easy to talk to.
 
But your  news is an omen for sure, I have been dreaming about doctors all night.
 
Did you start on 150mgs?.......thanks for the post and again good on you!!!.  Annie
Thanks Pip, for the explanation, I have never heard of a charlie horse before but have heard about the cramps from lack of minerals.  And yes you will be well, with your positive attitude, just takes time.....Annie

cdn - thanks for posting, your story sounds close to mine.  Glad its working so well for you as it is for me.

Rockin - isn't it terrible we are afraid of our rheumatologists and medical doctors.  It's like having to see the principal and you don't know what you did wrong.  Good luck, stay strong, as you are the patient and have the control. 

Thanks JSNM, I will stay strong I'm on the count down now only a few hours before I see him, so I am on these forums getting as much info as I can...... I have followed your posts and glad you are doing well also!.......Annie

Hey Annie - did you see him today or is it tomorrow (Wednesday?)  Let us know.
 
Cdndream - damn - forgot what I wanted to ask.
 
Pip
NOW I remember - I get anything I'm going to get when I'm premenstral.  Before, when this was all coming down, it was baaaad.  Then, AP and now, this is the only trouble I have.  My RLS or charlie horses are my warning that I'm going to start soon.  Sigh.  I'm thinking something must make it way worse for me hormone wise because that's the only trouble now.
 
Pip
Got my script, my mind is in a whirl. What a relief.  RD said we will give it a try as nothing else seems to be working, but if my liver levels go up, I will have to go off it.  He said to start with 50mg x2 a day, & when I suggested pulsing he said what for.  After talking with hubby and from what I have read in the book, and this forum I think I will start with 50gm x 2 MWF. What do you all think?. I will start Monday.
 
No drinking to keep my liver ok. I want this so to work and will do everything I can to make it.
If you have bad herxes you can start with less. I started at 50mg Monday and Friday, then 50mg MWF then 100mgM/50mgWF and so on until I got to 200mg MWF...that's 100mg in the morning, 100mg in the evening, Monday, Wednesday, Friday.

And probiotics, probiotics, probiotics.


Good luck.

Milk Thistle will help for the liver enzymes.  And don't forget the Whole Lemon/Olive Oil drink.  It'll help the liver process the toxins and also will really cut a herx.  When I had swelling after I turned RA, it dropped it down withing 30 minutes to an hour.  Hubby made me drink it as I HATE lemon.  Had to gag that stuff down.

If you need the recipe, run a search here, or look in this thread.  I swear by it.

Pip

Hurrah!  Yes, milk thistle and the lemon/olive oil drink.  I don't think any of us should be drinking alcohol with this disease, just my personal opinion.  Pip & JSNM........Don't know to much about milk thistle, will ask at health food store and have read about lemon/olive oil drink, I will find drinking that ok as I used to eat lemons, just the thought makes my mouth water!.....must have been hard for you though, I can't drink milk so I know the feeling. 
 
Thankyou and will keep you posted, & I know I will be asking lots of questions in the future, so please bear with me.
Annie - wait until we start in on "leaky gut" LOL  Lots of good tips on this part. 
 
PS Edited to add that I am still getting better in spurts, then falling back a bit, then coming back stronger.  Today was the best day I have had since 2002 when this slammed into my chest and my first of many trips to urgent care/ER.  I wonder if it was the final death throes of my thymus.  Or the inflammation is down and the chest pain is gone - either way, I don't care - I feel great. 
justsaynoemore2008-09-24 17:54:16I started at 50mg twice a day, total 100mg a day. Took it every day. Had a bad reaction, dizzy, drunk feeling etc.. And then I got the mother of all yeast infections. It was horrible. I was taking probiotics, TONS, but apparently I have a yeast issue.

Now i am doing 150mg MWF, 50mg in AM and 100mg in PM. I also have to take 1 diflucan a week and some oral Nystatin. I get a very Candida tongue if I don't watch.

I drink wine every night and I eat too many sugary foods b/c my kids stress me out and it's my comfort thing. I am not overweight and I'm in decent shape and it's my only vice... If I cut out alcohol and sugar I'm sure my yeast issue would resolve but I can't... or won't... I'd be too miserable!!

My RD is awesome, I shopped around a bit and I'm glad I picked him. He emails me, he returns phone calls, he's funny and personable and very very very nice. If you don't like your RD, shop around!!!

Have a nice evening!Hi all,
  Just a follow up to tell you that after a week and half on the Doxy and Clarithromycin (special antibiotic dosing for c. pneumonia)  I feel like a new person.  I am scared to get too excited, but I really believe I would have kept on suffering (maybe forever?) if it hadnt been for Pip and others who helped me on this board.  I would urge anyone on this board ESPECIALLY those who are seronegative for RA to be open to antibiotics.  I would never have done the research for c pneumonia if I hadnt started feeling better on the Minocin thanks to Pip.  And to my knowledge I have never had pneumonia and havent run a fever since I was eight years old.  So go figure.  Pip, I thank you again.  You and others gave me the inspiration to research specific diseases and to start the minocin again after herxing on it the first time I tried.   All of this pain and suffering, being diagnosed with Polymyalgia Rheumatica and RA and even Dupuytren's disease, which is a nasty disease in itself, possibly could have been avoided if I had started antibiotics when I first got sick.  I now think the Dupuytren's, which two board certified hand doctors said I have, is really Flexor Tenosynovitis because my poor hands stayed swollen for so very long.  Anyway, just wanted to say thanks again.     
Gee I love u guys.  I have just been out to my son's housewarming after waiting months for the keys, he opened Moet champayne even though it wasn't the best, I had to celebrate with them. 
 
firsttly JSNM I am so excited for you and so pleased that you are feeling great, I hope it lasts & thankyou for being here for me.....
 
Cdndream..... I can honestly say I am very nervous about starting on Ap as I feel its the last thing I can possibly try...I want to do everything right, I don't want this RA and will never ever give in to it.......but I love to be bad as well, like having a drink of wine.....if I had to give up drinking completely, life would be so boring.  I am, also not overweight and try to stay in shape by exercising (not as much as I used to) and yes I would be miserable too. 
Good on you and hope you stay well!.  Annie
 
 

Remember - there are 2 types of herxers.  The on the floor (sounds like Cdndreams first experience) and the slowly get better only to be hit at 3, 6, 9-12, and 18 month peeps.  Don't get depressed, just work your way around it.  Until you hit remission!

Annie - I take an occassional drink but because I have yeast, it's rare as I don't want to feed the beasties.  They like sugar. 

Also, for yeast, you can add in Grapefruit Seed extract (I herxed on it so start low) or Oil of Oregano (still on the counter because you can also herx on it).

Pip

Gimpy-
 
I am starting with 50mg doxy M and F.  Started Monday.  So far so good.  Slight herx within 45 minutes.
 
Good luck to all!!!!
Jan - great news!  You are no longer a herx virgin!  How did you do today?  Take care and big huggles ~~ CathyIt's great so see so many new focus getting both access and success with AP. I am approaching my one year anniversary and I feel great. Most of the time I don't even notice I have RA.
 
I had a small victory last week. I finally slept with only one, very thin pillow. When my RA started in Feb 07 my shoulders were hit very badly, and I couldn't sleep on either side for a long time. Then, when I could sleep on my side again, I used two pillows to prop me up to relieve pressure on the shoulders. Little by little I have had less need for the extra boost, and now I am back to my normal self. It's a very little thing, but it says a lot.
 
Enjoy.
 
Bonnie
Bonnie - that's an Ah-Ha moment!  WooHoo!
 
LMAO JSNM - Herx virgin!  LOL
 
Pip
Hi all-
 
Doing O.K. today!!!
 
Regarding alcohol, in the Dietary Guidelines for those with Chronic Infections by Prof. Garth Nicholson,  he says DO NOT EAT SUGAR WHICH CAN STIMULATE DISEASE-CAUSING MICROORGANISMS THAT REQUIRE SUGARS FOR THEIR GROWTH.   He later states ELIMINATE ALCOHOL WHICH IS CONVERTED TO SUGAR.
 
Interesting guideline.  I posted this on page 36 of this thread if interested.

My RD just looked at me funny when I asked him for the Minomycin Script, I think he was just humoring me, he is semi retiring at the end of the year, but is keeping me on as one of his special patients. He brushed me off when I queried the dosage, he said daily, but I will start at 50mgx2 MWF. I will eventually travel to see an AP Doctor when I can arrange a visit.

Good on you Bonnie....I will patiently wait for that moment. Hope you keep having those Ah ha moments, as Pip calls them
 
Jan..... Thankyou, I read the Dietary Guidelines for Chronic Infections pg 36 (which I have printed and stuck to my fridge) , have done the elimination diet as well as a few others. I know my diet effects the pain but am not very consistent with it all, and sneak little bits here and there when hubby isin't looking (he is so regimented with his everything).  I do love to have a drink but knowing that I start AP Monday I have cut down and will stop altogether , maybe once in a while for a special occasion.
 
 
Congrats Annie, may your herxing be minor and your AH HA moments come quickly.  Keep us informed, it helps.  Pip, thanks for starting this thread.   Cathy  PS Bonlucas - yep, even a pillow is a victory in this war we are fighting, congrats :)  In August '06, we flew to Cali so I could see one of the top AP docs in the country.  I was bad off.  Really bad off.  I needed wheelchairs to get across the airports there and back, and one at Disneyland.  I hated the one at Disneyland the most - all those women (one man) in chairs or on those motorized carts. 
 
We decided to go to Disneyland because of how quickly I went down after diagnosis.  We'd watched my husbands beloved aunt die of RA just a few years earlier and we just weren't convinced AP would help.  What if this was the only chance we had to go to Disneyland with the baby?  What if I'd be dead in a few years?  So, a friend went with us - my husband to push the chair and my friend to ride the rides with the baby. 
 
At first, I refused to use the chair, but it quickly became apparent that I had no choice.  Hours there watching other people have fun with my baby.  The only bonus was they didn't make you stand in lines - if you're disabled they move you to the front of the line.
 
Today, we hit Disneyland again.  We missed a big celebration for the baby's birthday so decided to surprise her and take her out of school for one day.  It was also the reopening of the Haunted Mansion - Nightmare before Christmas.
 
I walked 12 hours straight.  Back and forth across the park.  I stood in line for a lot of rides and did everything a 'normal' would do.
 
I'm tired and my feet hurt.  But the old kind of 'feet hurt' - not the RA kind of feet hurt. 
 
Not only that - I outlasted my friend who came with us again - and my husband.  The only person able to keep up with me was the baby.  And she was sugared up!
 
LOL - So everybody sing with me -
 
"This is Halloween, this is Halloween, everybody hail to the Pumpkin King~"
 
Hugs to all -
 
Pip
Pip-
 
Sounds like a great day!!!!!  I guess you are ready for Halloween.
Pip.....sounds like a wonderful day.....you certainly have come a long way.......
 
I can remember that feeling too before my dx, falling into bed feeling exhausted, but feeling great after a wonderful day, now I fall into bed exhausted after spending the day on the couch.
 
....... am singing with you, but don't know the song...........Annie
I've been rereading some of these posts.  Last weekend we threw a huge 3 day party at an island resort for my BF's 40th birthday, with live entertainment and non-stop refreshments. I've been really busy and haven't been getting enough sleep. I kind of flared on the 2nd day, due mostly to almost no sleep, but it was short lived and I feel great agin, and everyone loved the party.

2 years ago there would be no way, even on 20mg mtx. I am still taking only 7.5mg of mtx, but I'm not quite ready to bump it down to 5. Holding steady.

Yes, it's taking a long time but I know I wouldn't feel this great if it weren't for minocin. I feel very grateful and lucky I found this therapy.

Thats the way to go!!!! 3 day partying!!!!!! sounds wonderful, what an inspiration you are.....keep on keepin well....Annie

WooHoo GoGo!
 
OK, you know I'm gonna say pick a 6 week period and ride it out.  I always say that.  LOL
 
Hugs and keep on partying!
 
Pip
Hi Pip!
 
I am taking Doxycicline 100mg every day.  It has been about 2 weeks.  I am feeling worse, is this normal?  I cannot get Minocin or Minocycline here in Croatia.  How long does this herxing period last.  My whole body aches and my back is killing me Cry  Thank you for any help you can give me.
Yes, very normal.  Very few people walk away without herxing.  It's why 'in the old days' they said basically 'buck up and survive it'.  Nowadays we've figured out its better to 'kill the microbe, not the patient'.  LOL  You feel worse because your body is processing a ton of toxins trying to move the dead microbes caught outside of the cells out of the body.  Have you searched here for the Whole Lemon Olive Oil drink?  I swear the swelling and pain dropped trememdously when I used it.  And as I've noted before, I HATE lemon, had to gag the stuff down.  But when my left ankle visibly dropped swelling within an hour - well - hubby MADE me drink it. 
 
So, my usual disclaimer, "I'm not a doctor, yada yada' but if it were me, I'd drop down to 100 mgs on MWF and see if it lets up.  If it does, and as soon as you can handle it, work up to 200 mgs MWF.  We call the MWF version the 'pulsing dose' and you get days off of herxing that way because there are days when you don't have the med in your system.  For me, I soon got 'weekends off' and felt great on Sat and Sunday but when I took the Mino on Monday, within hours I'd herx.  Once you can do that (recognizing the herx) then you're pretty much home free because the 'time off' becomes greater and greater.  Soon I got T and Th nights off.  Then the whole day.  Then it was just twinges etc.
 
Look for 'ah-ha' moments - things you couldn't do before that you can do again.  Write it in a journal because if you've been sick a long time, it's really hard to notice the slow way you're getting better. 
 
And your back will eventually get better.  My mom has OA really bad in her back and hasn't slept for years.  It hurt too bad.  A few weeks ago she called to say she really loves the Mino as she slept thru the night and HER BACK DOESN'T HURT ANYMORE!  GO, MOM!
 
Doxy will work as well as Mino.  They switch the people who react to Mino to doxy and they're fine.
 
Pip
PS - you might run what you're doing by your doctor.  Your call.  Hugs again!
Hi Pip,
 
Thanks for the info.  I cant find the whole lemon olive oil drink can you tell me what it is?  Is swelling also normal?  My ankles have been swelling more than normal, ok I havent been taking my water pills but I had been sort of ok with that before I started the doxy.  Will try your suggestion of MWF, every day was suggested to me by a friend on another forum who has had great success with doxy.
 
Hugs to you too, you are the best!
 
Maria
Hi Maria -
 
Yeah, but if you're miserable, you quit before you get to the finish line - remission!  Slow and steady wins the race, two steps forward, one step back, etc. 
 
Whole Lemon Olive Oil Drink -
  • 1 whole lemon, rind, pips and all into blender

  • 1 cup water

  • 1 Tbls. cold pressed olive oil

  • Couple of Tbls. frozen juice concentrate. OJ is best. I used cherry because I couldn't handle the acid.

  • Few grains of Stevia (natural sweetener). OK, I admit, I used Splenda

  • Hit puree' – strain thru strainer, mashing pulp to get more liquid out. (Do not make a double batch – this gets really ugly bitter if it sits).

  • If neuropathy is present – stir in 1 heaping Tbls., of Lecithin to reverse it.

  • Drink

I've since switched from the Splenda to Kal brand Stevia - really good and while expensive, a little bit goes a loooong way. 

I didn't have a lot of swelling until I started AP so I think I was having a problem processing the toxins out.  Between the WL/OO drink and the milk thistle my swelling was mostly down (except for my 3 month herx) almost right away except for my left leg which needed until Xmas (4 months into AP) to go down and pretty much stay there. 

Hugs again!
 
Pip
THe lemon/olive oil drink is helpful!!!I just make it with a whole lemon, olive oil and water. It's tangy and refreshing!

Thanks for bringing this up---I forgot how helpful it can be to get through my 7.5mg MTX herx.

(I'm a little achey, but nothing compared to how I was 2 years ago when I was on 20mg MTX).Did you drop again?
 
Pip

I had my first lemon/olive and water drink & was very refreshing, thanks Pip I am on my second week AP no changes yet to report.......Annie

Nobody gets out without herxing - expect the worst - celebrate the best!
 
Pip
Will do, will up my dose next week and will wait in anticipation...........Annie

Hi Pip!

I had a very stressful week (my Dad had pacemaker surgery) and I forgot to take my doxy on Monday and yesterday too.  What do I do?  Do I just take my dose tommorrow as you suggested and continue on?
 
I am going to buy a blender tommorrow so I can make the WLOO drink, would a mini cuisinart work?  Because I have one of those Smile 
 
My swelling is awful, my left ankle and calf are huge Confused I have the arthritis breakthrough and am slowly reading through it.
 
I also see you take milk thistle, what is that exactly?
 
Thanks for all your help!
 
Maria
 
Hey Marie -
 
Yep - just do it on Friday.  Don't try to play 'catch up' as you'll kill more microbes and could get a darn big herx.  Slow and steady.
 
I don't know about a mini-Cuisinart.  Try and see.  I just got one and am thinking of trying it too as my blender is almost dead (and has been almost dead for a year now) and smells of burning rubber each time I use it.  But it hasn't died yet and I just don't want to throw it in a landfill with it still working.  LOL  All it needs to do is make it lemonade-y.  So, I'm thinking the Cuisinart would work if the lemon rinds aren't too much for the little one.  You'll know with one batch.  :-)
 
Wow, you sound like me!  My left calf and ankle were the last hold out.  My AP doc mentioned it a couple of appointments ago (which was odd as to me it looked fine) but the guy is very observant.  My hubby then asked him something so I don't really know what he said.  I'll ask on my next appointment with him and let you know.  My 'guess' is that it had something to do with my heart (have a murmer).  Since AP kills heart plaque myco's too, I'm not worried about it.  We have heart disease all over my family. 
 
Either way, don't worry about the left leg thing too much unless you get red radiating pains and/or red streaks which could be blood clots.  Blood clots are not a 'side effect' of Mino, I'm only telling you what I was thinking when my leg swelled up.  My sis got blood clots in her leg and I got them in my lungs and a lot of the 'common denominators' of getting an Autoimmune disease, according to my research, is we get 'sticky blood'.  Sticky blood clumps together...so, if you do get that, get yourself to an ER.  Again, that's not a herx so I don't think that's whats going on, just something your body is doing.  Mine would get so bad I'd get 'sock imprints' on only my left leg. 
 
Milk thistle helps your body process toxins out of your body by supporting your liver.  It really helped me to normalize my high Liver Function Tests which were high 3 tests in a row BEFORE I even started AP.  I was terrified that my numbers would spike on AP (can happen) and they'd try to take me AP before my body got a chance to normalize.  So I started Milk Thistle and within only 2 1/2 months my LFT's were normal again.  My AP doc credits the Milk Thistle.  If you want, Google PubMed and search Milk Thistle.  Lots and LOTS of studies on it as liver support.
 
Hugs,
 
Pip
Pip, can you post a couple things about sticky blood?If I hadn't taken apart my filing cabinet I could.  I'll do a quick search and if I find something, I'll post it.  When it goes back together I'll find it.  I just found an Angel at Church that said she'd help me redo it.  If involves dumping AOL.  WooHoo!  Finally!  Seriously, what good is having over 10,000 emails on research if you can't find what you're looking for?
 
Pip
OMG - something that was properly tagged~
 
When the new filing cabinet is up and running, not only will I find the newblurb, I'll have the entire study attached to it.  I've found that even when the subject says X, the real conclusion is sometimes different.
 
 
 
Pip
 
edited to post correct link to second article - duh!
Pip!2008-10-09 12:41:28Thanks, Pip!Oops - apparently I didn't post the second link correctly.  This one is the blood thinning proteins and the relationship to stress - and since a lot of us are under intense stress prior to onset, I thought it important to save.
 
See the above, now corrected, link.
 
Pip
Hi again Pip!
 
Sorry to keep bugging you but I have one more question.  When I picked up my Doxy at the pharmacy the pharmacist told me I cant have any milk or milk products.  Since I am on a semi vegetarian diet and eat cheese, yogurt, cottage cheese, etc. and put milk in my coffee I just wanted to ask if this is true?  Could this be the reason for my swelling, etc.?
 
Thanks so much for your help, if I achieve remission after 18 years of suffering I will be so happy!
 
Hugs,
 
Maria
I am not Pip! but I have the answer to your question. The doxycycline medication binds to the calcium in dairy products rendering it less effective or useless. You just have to refrain from dairy a few hours before and a few hours after taking the medication. Other times dairy is fine. The same thing happens with minocin I usually have a bowl of yoghurt about 3 hours after I take mine.

Hey Maria -

And you might look into anti-inflammatory diets and possibly the controversial delayed onset allergy testing.  Gluten and dairy are major contributors to 'leaky gut' which is implicated in the onsets of these diseases.  You'll still heal but, IMHO, I'm not going to get my cure until I get off my big backside and go off all gluten and dairy free for a couple of years.  I hate the idea of that so...I delay.  Endlessly.  Because I feel great now and am...lazy.
 
GoGo - did you see that I fixed the second link so it's a different article now on how the blood thinning proteins influence these diseases?
 
Pip
Yes, I read it an I filed it. I stopped taking fish oil over the summer and I notice my blood has gotten quite thick. When I get blood drrawn it doesn't even leave a mark on the band-aid. I've started the fish oil again. I think it really helped my inflammation but it made my blood really liquid and thin as well---not necessarily a bad thing.Hi again,
 
Thanks for the info.  I have to say the last two days have been good KOW Smile  Ok yesterday I rested most of the day Wink Dont know if it is because I upped my medrol 1 4mg tablet yesterday or if the therapy is starting to work Smile  I hope it is Wink
We're rooting for you!
 
Pip
Yes, Maria.  Good luck.Rereading some posts.  I have a friend in for a few weeks who has horrible stomach/bowel problems.  I finally talked her into sprinkling probiotic powder into her food.  She is totally flabbergasted.  Probiotics work.  And so does minocin because I am just getting better and better and better.  Almost 3 months with minimal symptoms, fatigue gone, the feeling of sick being gone, inflammation down, labs normalized.  Amazing, absolutely amazing.  Thank you Pip and Robin and Suzanne and everyone else who keeps bringing the healing power of minocin to the top of list of this forum - RA patients need hope, and minocin gives it.  JSNM-
 
Glad you continue to do well and yes, probiotics have definitely been helpful to me!!!
JSNM-
 
Yes again, to probiotics!!
Hermsi85 has some good info on AP on his website if interested.  He posted on the Mycoplasma Article.So I've been considering a gluten free diet. It's a lifestyle change of big proportions, but at Thanksgiving a lot of people brought gluten free options (Hey, I live in Vancouver) and some of them were delicious---particularly the pies. It's hard to nudge myself into that because I feel pretty great, but I think I'd do greater and for longer with such a diet.Hi Pip and good to be here.......
 
I finally worked out why I got such a big herx ........ I was on a heavy dose of amoxicillin for a fortnight (when I had that virus and it gave me mouth ulsers).  When I stopped taking it my arm started to hurt -- it was only reading these posts today that made me realise it is a herx, just a bad one, so maybe it will revert to what it was before now I am off the penicillin.......thank heavens I finally realised, I was a bit worried it was a symptom of something new.......
Thanks,
Maz 
Hey Maz -
 
That makes me wonder if you have co-infections.  Penicillians (sheesh, you'd think I'd spell that correctly by now :-) causing that kind of a herx might be indicitive of strep as one of your problems.  Keep an eye on that.  If you need amox or whatever again, and it happens, you might talk to your doc about switching up the abx occasionally.
Today we had my AP doctor appointment and my husband had an appointment too.  We ended up being late because of construction (who put two lanes of construction on the darn 60 without telling anybody!!!) and my appointment got bumped because of that. 
 
Hubby still had his tho and they went over his last bloodwork trying to figure out what's going on with his DDD and OA and whatnot.  He's had progressive pain in his hip, which I keep linking to his diabetes, but its possibly burisitis.  I told the doc I really want him on AP (had brought in a ton of OA/nanobacteria/tetracycline studies as back up) but they weren't sure it was necessary yet. 
 
So, hubby asks me "what was the name of the test you wanted him to run?  C-something or other?' and the doc says 'CRP, we ran that' and looked it up.  42.somethingorother.  Doc goes 'wow!'.  So, I say, 'did you run the CCP?' and he flipped the page and he's barely positive with a 3.8.  Still, higher than I was.  I forgot to get copies of the chart (shame on me) and never asked about the RF because the the next thing the doc noticed is that hubby's IgM mycoplasma test was a strong positive. 
 
IgM is recent exposure.  Not something in the past; something going on now.
 
I'm stunned.  Doc is stunned.  Hubby is just sitting there looking like a deer in the headlights.  All I can think is 'he's about to join our club'. 
 
Doc goes, Minocin.
 
Hubby is officially one of us now - he's an APer. 
 
I am soooo proud.
 
We can nip this is the bud!  I am stoked.  Hubby is stoked.  I can't think of anybody who has been caught this early in the disease process.  How much do you want to bet he's only on AP for 2 years tops and is then 'cured'.
 
WoooHooo!
 
Pip
[QUOTE=Pip!]
 
We can nip this is the bud!  I am stoked.  Hubby is stoked.  I can't think of anybody who has been caught this early in the disease process.  How much do you want to bet he's only on AP for 2 years tops and is then 'cured'.
 
WoooHooo!
 
Pip
[/QUOTE]

He'd probably be "cured" even without the antibiotic faith-based BS
what's he being cured of??????He's CCP positive - he's one of us!
 
Pip
[QUOTE=Pip!]He's CCP positive - he's one of us!
 
Pip
[/QUOTE]

You're a danger to yourself and others
Pip - that is wonderful news that your husband's disease process was caught so early by your medical doctors.  And shame on the posters making fun of this, go play with yourself or something productive instead of wasting your time badgering posters.  Sick people, sick, sick, sick. 
 
This is an official complaint to Ernest to censure the two posters above and please kick them off the Board - they have gone too far this time.  Thank you.  Cathy
[QUOTE=justsaynoemore]Pip - that is wonderful news that your husband's disease process was caught so early by your medical doctors.  And shame on the posters making fun of this, go play with yourself or something productive instead of wasting your time badgering posters.  Sick people, sick, sick, sick. 
 
This is an official complaint to Ernest to censure the two posters above and please kick them off the Board - they have gone too far this time.  Thank you.  Cathy
[/QUOTE]
 
You have got to be kidding...They've gone too far.  LOL

.

justsaynoemore2009-06-16 17:47:03Hey I asked a simple question, I don't call people morons all day and rant and rave.
Besides I thought i was on your ignore list.
Please  Just Say No MoreBig%20smile
Pip - makes you wonder about this infectious theory, eh?  I wish you and your husband the best of luck as he starts our common journey.  Cathy!
 
Doesn't this just rock!  I'm about as stoked as I can be!  Think about how supposedly the CRP and CCP is indicitive of disease years before it shows up!  Do I not have the best doc in the world!
 
Pip
Pip, you and your hubbie are very, very lucky.  Best of luck.  From Morons to Freaks, its you three that do all the insults  of people that have different opinonsYeah - it does make you wonder, doesn't it.  We talked about it during lunch after the appointment.  He said it best, most docs are willing to 'wait and see' and are 'content to watch the every widening downward spiral'.  This doc is proactive! 
 
There was a woman in the office who came in unable to walk about a year ago and bounced in today! 
 
Huggles!
 
Pip
[QUOTE=Pip!]Yeah - it does make you wonder, doesn't it.  We talked about it during lunch after the appointment.  He said it best, most docs are willing to 'wait and see' and are 'content to watch the every widening downward spiral'.  This doc is proactive! 
 
There was a woman in the office who came in unable to walk about a year ago and bounced in today! 
 
Huggles!
 
Pip
[/QUOTE]

LMAO if you treat everyone that comes in chances are you're going to "cure" lots of "patients" that don't actually have RA
"He said it best, most docs are willing to 'wait and see' and are 'content to watch the every widening downward spiral".  The most succient summing up of traditional RA treatment I have read so far.  It's astonishing to read the stories in here of the escalation of more and more expensive drugs, and the lack of results.  The official definition of RA is a chronic, debilitating disease with no cure.  You are so very very lucky to have an MD who is open-minded and proactive.  Is the hubby going to be Mr. Pip! in here? LOL No - he thinks I spend too much time here anyway.  LOL
 
You know what I want to see - remember how we've talked about the insulin problems AI people have - and he's diabetic with a chance of being LADA.  I really want to see if this might help him control his numbers better.  Think about it, a study of one!
 
Pip
Aw, you just want to compete with Suzanne's study - I know you have been working on the diabetic connection, perhaps, unfortunately, your husband stumbled into the master plan.  And I am amazed - I wonder how many RA patients have others in their family who are not genetically connected to them develop RA.  I am still working on my scarlet fever/infection research - its going to come together someday, too much evidence of an infectious connection, coupled with hereditary factors.  Yeah - hubby has the gene for RA, we assume, as his aunt did. 
 
I'm still focused on that Canadian study where they reversed Type 1, thought to be impossible so Cell magazine made them we do the research.  Heard they are in Phase 2 clinical trials now. 
 
I wonder if he's gonna fizz?
LOL - take pictures and post them like Go-Gos hand :)I can't wait for GoGo to see this - she's the one who saw that research, article, whatever and said, how many of us would never go on to develop this stuff if given abx early.
 
Hugs to you again and glad you were hear to share our happiness.  Who would have ever thought a positive CCP would be reason to celebrate~
 
Pip
[QUOTE=Pip!]I can't wait for GoGo to see this - she's the one who saw that research, article, whatever and said, how many of us would never go on to develop this stuff if given abx early.
 
Hugs to you again and glad you were hear to share our happiness.  Who would have ever thought a positive CCP would be reason to celebrate~
 
Pip
[/QUOTE]

Put everyone with aches and pains on minocin - surpise!  Many will go on to NOT have RA (same as if they never took minocin)
CHECKED CHECKED AND RECHECKED -- SORRY PIP NO STREP FOR ME .......
Maz - did you see my news?
 
Pip
PS - great about the strep~
PIP WHAT WONDERFUL NEWS,,,,,,,,,,,,,
 
IT MAKES ALL THE DIFFERENCE IN THE WORLD TO CATCH SOMETHING EARLY, gives it a better chance at remission and cure --------- tell him from me he is lucky to have you on his side - and how good is your doctor !!  early medical intervention is the key to early results!
 
GREAT NEWS,
Maz
Maz-aust2008-10-16 19:45:44Hey Pip, your husband is soooo lucky. (Well, in a way. Soooo lucky would be to not have this problem in the first place). I wish I had a wife and doctor that caught this early and put me on minocin. I used to get really morose about how I could have been cured because I had fairly early detection (but I didn't know about knocking it down with ABX), but I've come to accept it is what it is.

I'd like to reread that stuff about insulin resistance, if it's handy (although I know you're working on organising your files).BTW, I'm still interested in people who are around people with RA and develop asthma. [QUOTE=Gimpy-a-gogo]BTW, I'm still interested in people who are around people with RA and develop asthma.[/QUOTE]


l'll pm you someone on the another board who had that issue in their family.  AND we're told my older daughter has asthma now. 

I'm confused, since it started after the pneumonia.   She is doing fine now, which they consider 'well controlled' - but  I'd like to see her off the meds now that it has been so long since the pneumonia.  We're keeping her on them until her next appt., though.

No doubt in the allergist's mind - he gave us info to participate in a study for her age group about controlling your asthma.  She wanted to do it for the $250 LOL, but it says you have to be dx'd for two years.
Nobody cared about my Medicine at Michigan article the other day, but it mentions what Pip is saying about her hubby:

http://www.medicineatmichigan.org/magazine/2008/summer/arthritis/

"The disease actually begins long before any physical changes develop in the joints. “Rheumatoid factor and anti-CCP antibodies have been found in stored serum samples from people who donated blood years before they had any signs of rheumatoid arthritis,” Fox says."

Let's mark our calendars - Pip and the Great U on the same page!
Suzanne -
 
I cared and read about 1/2 of it but had to get on the road and was going to finish when I got home but forgot.  I didn't realize it had that in it.  As for the Great U and I being on the same page - that apparently is only some of the researchers - the docs in the trenches don't say/do anything about this.  The advice from the Great U was 'don't lift anything heavy'. 
 
Hubby's problems started sometime during the move last year but wouldn't go away.  When he had to go home to deal with the house he saw his GP who suggested an MRI which showed substantial DDD and hubby was concerned about some phrase about 'progressive'.  So, he wanted a second opinon and decided on my doc because I get X-rays there yearly.  That and I kept harping on the sugar connection.  So, he started seeing them and they wanted to know what exactly was going on because whatever it was was not 'strain'.  At yesterdays appointment I found out that while the leg numbness has gone away, his hips started 'locking' when he sits for any amount of time.  So, you can see bells going off in my mind.  The back Xrays had confirmed the DDD and one shot showed part of the hip - which ALSO apparently had some thinning of something or other (I don't know enough on OA so excuse my lack of knowledge).  So yesterday they took shots of the hips which we'll know the results of next appointment because we had to race across LA to get back to pick up the baby after school.  It was the progressive lab reports that showed something happening immune-wise.
 
Also, somewhere in this mess I have some asthma/myco research - I'll keep an eye out for it.
 
GoGo -
 
I sent some of the studies to JSNM so if she still has them maybe she can PM them to you.  If not, when I get the filing cabinet fixed (I pray it's not months) I'll post a thread for anybody looking for research and send it to you from there. 
 
Also - sorry I forgot to mention about your thinking about going Gluten Free.  Yeah, I'm still thinking about that too but all my Holiday treat recipes are not Gluten Free.  I'm thinking of starting in the new year - if only to get rid of all these immune support products I bought over the last year and clogging up one kitchen cabinet.  LOL
 
Hugs,
 
Pip
 
 
I cared. I read it carefully. I just didn't comment on it. I need to reread it to make sure I fully understand what they said.Suzanne - hear hear !!!  In March I was in Seattle and was visiting a high school girlfriend and told her she needed to see a rheumatologist, as like Pip, my radar started going off as she was talking about her symptoms.  She got out the YELLOW PAGES, found Franco, got in right away, and has "starting" RA symptoms.  He put her on a short course of minocin to "nip it in the bud".  We are so close, close, close to getting a handle on this.    Time for a little update.

No more Lyme-ish treatment, but we are full of questions.  Her only abnormal lab, CRP, went down on the amox.  She had some neuro symptoms that she never had before on the amox - but they have stopped now that the amox has stopped.  We can jump on the Lyme herx bandwagon with that, I guess.  Since she is doing well, we will just keep questioning. 

She started Girl Scouts last week.  She loved it so much, but much to my surprise, for such a non-physical activity, it was the first time her arthritis has interfered.

She couldn't do the Girl Scout pledge with her right hand.

You hold up three fingers, together.  She could only hold up three fingers, apart, like 'I'm three' OR hold the three fingers together and her thumb and pinky had to be apart.

It's not the end of the world; she still writes and eats and picks up and plays with her right hand.  It is her dominant hand.

But I worried, of course, and her right wrist is the worst area anyway.  Then I noticed it really wasn't her wrist interfering, it was more like swelling in her thumb area, like on the palm.  So, a week of worry, what to do, topped off by her getting three vaccines (one live) on Friday, will she get worse?????

No, she didn't!  She could do the pledge this morning!  She was so excited!  So her thumb area is down a little bit, I guess.  Her wrist had better ROM, too, and she said that stretching her wrist doesn't bother her wrist - she only feels it in her thumb area right now.

When we used to go OT, the OT would say her wrist ROM seemed restricted by swelling in her forearm and around the wrist joint.  I just don't feel it there anymore.  It is like it has all moved down into her hand or something. 
I'm so glad she seems to be better today.  Had she done anything that beforehand that might have cause some inflamation in her hand?  Is she in kindergarden now?  Just thinking maybe she is writing/drawing more and maybe that is causing her arthritis to act up a bit. [QUOTE=Pam S]I'm so glad she seems to be better today.  Had she done anything that beforehand that might have cause some inflamation in her hand?  Is she in kindergarden now?  Just thinking maybe she is writing/drawing more and maybe that is causing her arthritis to act up a bit.[/QUOTE]

She is in kindergarten now - and in Montessori, they learn cursive in K!!!!  So she has cursive homework every night.  It doesn't bother her, though.  Sometimes when she doesn't want to do it, I worry that it is uncomfortable, but it always turns out to be she just doesn't want  to do it LOL.  Once she faces the fact it has to be done, she blows right through it.

I'm always analyzing, though (I know you know LOL) and I thought she was holding her pencil funny.  I thought she should be doing more with her thumb.  I'm left-handed, so it is hard to compare, so I went and got her older, right-handed sister.  They hold their pencils the exact same way!

I worried about scissors, too, last year.  I told the school OT and the counselor at her 504 meeting that she held them wrong.  They said no, I held them wrong LOL.

Montessori is great for JRA, I think.  They don't stay at desks, and everything is 'hands on'.  She gets to use her hands in so many other ways than just writing.  I think that 'variety' is good for her.  They also don't bring heavy books home.  And because they work at their own pace, if  they have to miss a lot of school, they aren't behind the whole class when they get back.
my daughter went to Montessori school until she was in 1st grade.  We loved it too.  It was so funny when she went to public school for first grade.  The teacher stopped me after school the first day and said "Montessori, right"?  I said "how'd you know"? she told me that Sam was asking what her choices were when she was given something to do, not raising her hand to speak to the teacher, and asking if her mommy was going to be here soon LOL
 
It is so hard to tell with little ones, especially in a joint that has been a bugger all along.  They get use to the pain and it is just normal to them.  We did not know for a long time some of the pain Oscar had been in for years.  He always was very complainy about going anywhere.  "How long will it take",  "do we have to go", "how much longer"...and these were not long trips.  One day I asked him not to complain so much and do like his sister and just relax and bring something to do.  He then told me that he hated to ride in the car because it hurt so bad to get out when we got to where we are going Cry.  I asked him why he never said so and he said "I thought it felt like that for everyone" Thumbs%20Down
 
 
[QUOTE=Pam S]
  I asked him why he never said so and he said "I thought it felt like that for everyone" Thumbs%20Down
 
 
[/QUOTE]

That's what my older daughter said after suffering for years every time she ate dairy! 

All I know is that my little one used to cry when I touched her.  She would get her blanket and lie back down ten minutes after she got up.  She would SCREAM if she fell.  Even if we didn't notice anything unusual during the day, her sleep was disturbed all night, she would cry out.  We could barely sleep.  She would looked relieved when I picked her up from preschool.  On longer car rides, she would be 'stuck' in the shape of the carseat for a few minutes after we arrived.  I'd have to carry her until she 'unfolded'.

I didn't even noticed she had stopped singing, until she was doing better and back to normal, making up songs as she played.

She wakes up with a smile everyday.  She is smiling and waving when I pick her up at school.  She dances around all night.  I know if her wrist was her knee, she wouldn't able to do that.  But it's not.

The only pain she ever has now is stomach pain.  That will slow her down.  We can't let her stomach get empty, it seems.

I have my 3-month blood pull on tomorrow.  I cannot wait to get my new lab results.  This has been the best 3-month period in almost 8 years, as I remembered today (the day I met my husband), I had just returned from Alaska to cool down as I got sick during the summer of 2000.  I thought it was the heat.  I came back and my shoe size was 1/2 bigger.  It was swelling. 

It is so fantastic to feel so good and not fatigued or foggy and today can walk 1.2 miles into The Everglades and see gators and fantastic flora, rather than when 4 years I told my husband I was positive I was dying, no doctor believed me, and I would never be able to work or take care of myself ever again, or even walk up and down our stairs.

I have worked a 40-hour week for almost a year now, am still alive, and starting to look around and see life again.  What a miracle. 
justsaynoemore2008-10-20 19:34:13Clap I loved reading this JSNM!  I am so happy you are feeling so good SmileWow ClapClapClap JSNM.....that is really fantastic for you....oh to feel like that!!!!! yes what a miracle..................let us know your blood results please..............AnnieThis is a quirky little article that outlines the very basics of RA (sort of RA 101):
Rheumatoid Arthritis: An Enigma

What caught my interest was this paragraph:

"The causes of rheumatoid arthritis are unknown. Even though infectious agents such as viruses, bacteria and fungi have long been suspected, there has not been any concrete evidence to prove that one of these contribute to the disorder. Hence this is one of the most active areas of worldwide research. "

Really? REALLY? How come we haven't heard about this? (This would be great if true, of course).

It could also be a case of really akward writing and the author meant looking for any cause is an active area of worldwide research, not that looking for an infectious cause is an active area of worldwide research.

.

justsaynoemore2009-06-16 17:49:26American Chronicle is a new publication to me.  Interesting article.I'm glad we have this thread.  It has been very helpful to me.Here is information on the Antibiotic Protocol for anyone interested.Well, I had my 3-month checkup with my wonderful family practitioner and my labs are spectacular.  Pip, everyone who helped me find AP in here THANK YOU.  I had given up hope I would ever feel well again, and to be free of the fatigue and brain fog and the feeling of being sick has been gone for almost 10 months now. 
 
My RF factor dropped from 67 to 54, sero-negative, and my WBC and liver numbers that went so bad on MTX are even better now, going back to mid-norm range, where I usually am at. 
 
My thyroid numbers are off, and we are reducing the dosage, but this is minor compared to having bad RA labs. 
 
We went over my splints, exercises, pain control, and everything is going well, unbelievably well.
 
Again, to everyone in here who has been supportive since I joined and given so much of yourselves as I come to grips with this chronic disease, thank you.  I had no idea what RA was, and helping me work through the anger, denial, the morons :), the emergency room trips, everything, has been so appreciated.  Take care ~~ Cathy
I'm glad you are doing well Cathythat's great,Cathy!!! I hope this continues to be better and better!!!

Shame on you and this forum!

AchingAudrey2008-11-30 12:22:04Congrats Cathy - I'm so glad you're doing better and better!
 
Don't forget - REMISSION - as in no pain and no more unending new 'diseases' is your goal.
 
Hugs and more hugs,
 
Pip
[QUOTE=Pip!]Congrats Cathy - I'm so glad you're doing better and better!
 
Don't forget - REMISSION - as in no pain and no more unending new 'diseases' is your goal.
 
Hugs and more hugs,
 
Pip
[/QUOTE]
 
I know this is an AP topic and I'm not on AP, but I'd like to ask a question.  Your post brings this back to mind and it's something I've wondered about from time to time since I started Enbrel. 
 
Why do we often settle for "oh my pain is bearable, so I'm doing well?"  I did that all the time before I started on Enbrel.  The American College of Rheumatology clearly states "no pain" on the list for remission, so why don't we "expect" that as part of our treatment?
 
OK KweenB I agree with you --- I am on AP (although not on mino) and my remission plan definitely includes a chapter in 'no more pain'. 
 
I have a question though about AP and me .....
Last Fri I upped the dose of amoxicillin to 5ml x 3 days then 3 times a wk Mon Thu Sat, whilst continuing the roxithromycin & clarithromycin pulsing Mon & Thu ---  well it's only a wk today and I have only just realised 1/2 hr ago that my itchy spots are not from mosquito bites (as I thought) but actually hives .....
The question is - should & cut back the abx??
 
 
kweenb - your point about "no pain" being part of the official ACR definition of RA remission is one I have also pondered, as I caught that too when I first was dxed and started my self education course, which I will never graduate from.  Why isn't "no pain" something we should be able to achieve with all the medications for RA that are out there?  How can we get to "no pain"? 
 
Maz - perhaps you should tell your AP physician about how you are medicating and see what their advice would be?

Maz -

WL/OO drink!  You haven't tried that yet, have you?  It's 'normal' to get itchy when we start out for the first couple of months.  That will go away when you lower the toxins more.  I couldn't stop scratching my left ankle and leg!  
 
Cathy - I think we're all supposed to be 'pain free' no matter which road we choose.  LinB is in remission and she says she doesn't have RA pain any more.  I think what ever else she has going is previous damage.  Lin, if you see this, correct me if I'm wrong. 
 
Pip
Hi Pip and other Apers,
 
Hope you are all in good health.
 
I have just had my first phone consultation with an AP doc. I am currently on 150mgs minomycin which he said was ok and not to increase because of my weight. He did suggest a course of Dalacin C Iv's to be added as I have Bronchiectasis and we have to address that bacteria as well.
My question is...... does any of you experienced Apers know anything about this abx, because after asking my RD to do the Iv's, he is very reluctant and wants to see the Ap docs notes before he will consider helping me, which worries me because he told me to go off Mtx and Sulfazalizine, I can just picture his reaction.
 
  I googled, trying to find more  info, but it all goes over my head.
 
I have been on Minomycin for 4 weeks..........Thanks in advance................Annie
Hi Pip, just wanted to let you know that I have a girlfriend who started AP with me approx 6 years ago, I must admit I gave up after 3 years as I felt it wasn't working for me, but my GF is still going and she swears by it, she can still work and now cycles marathon like rides for fitness and fun, I might add that they told her she would be in a wheelchair soon all that time ago. Her dream was to go to France and cycle the tour de France route in her own time, well only last year she did it!    All the best, Janie.  Keep this thread going its very informative and interesting and at least its also about RA. I also find this thread incredibly useful. Thank you, Pip!
Cathy, that's great news about your bloodwork. I got my most recent results today and everything is within "normal" range with a sed rate of 2.
Janie, thanks a lot for sharing your friend's story. It's very inspiring!Ditto.

.

justsaynoemore2009-06-16 17:51:02no pain may never be part of a remission criterea because its virtually impossible to distinguish between pain of RA and pain of RA damage.   I could be in a remission tomorrow and pain would still be part of my daily life due to the condition of my jointsJSNM-
 
Good luck.
I just heard from AP friend from the Road Back bulletin board.  Doing well.  So far so good. [QUOTE=buckeye]no pain may never be part of a remission criterea because its virtually impossible to distinguish between pain of RA and pain of RA damage.   I could be in a remission tomorrow and pain would still be part of my daily life due to the condition of my joints[/QUOTE]

Not to mention the fact that there are lots of non-RA things that cause painWink
That's true Jas.  I sometimes think I get off pretty easy because I at least have meds to help stop my pain and the progression of the disease.  I know so many people (guess it's the age group I'm in now) that suffer from chronic back pain, knee pain..... that suffer day in and day out that don't really have anywhere to turn.  Surgery maybe, but that isn't a guarantee with back pain, ya know? [QUOTE=Linncn]That's true Jas.  I sometimes think I get off pretty easy because I at least have meds to help stop my pain and the progression of the disease.  I know so many people (guess it's the age group I'm in now) that suffer from chronic back pain, knee pain..... that suffer day in and day out that don't really have anywhere to turn.  Surgery maybe, but that isn't a guarantee with back pain, ya know?[/QUOTE]

I hear ya... I've got an ankle that likes to flare up and remind me of how clumsy I was back in high school/college when I sprained it repeatedly.  It has nothing to do with RA, and everything to do with past clumsiness (at times enhanced by excessive alcohol consumptionConfused).
I have a friend with some kind of back ailment that whenever she coughs, her legs give out from some sudden pain so she falls down.  I know that sounds kinda comical, but can you imagine how much that would suck?Had my little one's teacher conference today.  Yes,  I know a teacher is not a doctor, but it was so good to hear how well my daughter does in school.  The teachers see her all day, surrounded by "normal" children.  Her teacher says she does everything the other children do and never holds back or avoids any activities.  Her teacher can see the problems in her hands, but said her handwriting is beautiful.  She said she loves to watch her dance, too!

Suzanne-

Great news!!!  Glad your daughter is doing well.
 

.

justsaynoemore2009-06-16 17:52:03 [QUOTE=justsaynoemore]Your Study of One is still the luckiest girl in the world to have you as her Mother.  [/QUOTE]

That is what her teacher said, too!  But we said we are lucky to have her.  We really are.

Jan and JSM, thanks for your kind words!

You're very welcome!!

Well, I was getting a little discouraged because it seemed like my 7.5mg MTX herx was lasting forever. These herxes I get with reducing MTX by small increments aren't that bad, just persistant discomfort. (It's way not as bad as how I felt when I was on 20mg MTX and no Minocin). But I just realised this morning looking at my health journal I've been completely pain free for about a week. Yooohoooo!

I've been noticing that the further away I am from my MTX dose the more pain free I am. When I take my 7.5mg MTX, I usually have pain that day and the next day or two, which gradually subsides until I am pain free (or relatively pain free) for the last couple of days. This defies any known theory or logic of MTX or AP. I have no idea what's going on there. Anyway, I had a head cold with a dry cough last week so I didn't take my MTx and now I feel great.

I am only too happy that I see the light at the end of the tunnel. If this keeps up soon I can go down to 5mg and after I herx from that I can get off this drug for good. This weaning method is not for the impatient!Gimpy-a-gogo2008-11-05 11:30:39 [QUOTE=Gimpy-a-gogo]

I've been noticing that the further away I am from my MTX dose the more pain free I am. When I take my 7.5mg MTX, I usually have pain that day and the next day or two, which gradually subsides until I am pain free (or relatively pain free) for the last couple of days. This defies any known theory or logic of MTX or AP.[/QUOTE]

Have you asked your dr. about this?  It sounds like you could stop weaning and just...stop...if you start feeling better as it wears off????  I would ask the dr. about it, especially since you are still on plaq.  - that would be like a backup.

I'm glad to hear you are feeling so good!
Thanks Suzanne. My RD doesn't know anything about AP so I'm flying blind here.

.

justsaynoemore2009-06-16 17:52:35I found this little nugget and have to post it, as I was prowling around the site, and found this (sorry its so long and I have highlighted in RED two goodies):
 
 

Rheumatoid Arthritis Symptoms and Treatment

What is rheumatoid arthritis?

Rheumatoid arthritis is a systemic disease, meaning it affects the entire body. It is a chronic disease, in which various joints in the body are inflamed, leading to swelling, pain, stiffness, and the possible loss of function. The joint inflammation begins in the synovium. Continuous inflammation of the synovium slowly destroys the cartilage, narrowing the joint space and eventually damaging bone. The inflammatory process can also occur in other parts of the body. RA can cause anemia and affect the nerves. Scleritis, an inflammation of the blood vessels in the eye can occur. The heart and lungs may also be affected.

Statistics

  • Rheumatoid Arthritis affects more than two million Americans.

  • More than 75 percent of people with RA are women.

  • Peak onset is between age 20 and 45.

Image source: NIAMS

What causes Rheumatoid Arthritis?

Inflammation is a byproduct of the body's immune system, which fights infection and heals injuries. When an injury or an infection occurs, white blood cells fight to rid the body of any foreign proteins, such as a virus. These masses of blood cells group at the injured or infected site and cause the area to become inflamed. Normally the inflammatory process is controlled and self-limited, but in people with chronic rheumatoid arthritis, something keeps this process going.

What exactly keeps this process going? No one really knows for sure, although theories abound. Scientists have found that certain genes that play a role in the immune system are associated with a tendency to develop rheumatoid arthritis. At the same time, some people with rheumatoid arthritis do not have these particular genes, and other people have these genes but never develop the disease. Stress, infectious agents, environment, and hormones are all suspected triggers.

What are the symptoms of rheumatoid arthritis?

The infamous symptom of rheumatoid arthritis is morning stiffness that lasts for at least an hour. Pain, redness and swelling may also occur in the joints. The joint symptoms are usually (but not always) symmetric, if the left knee is affected, so is the right, etc. Other symptoms can include weight loss, fatigue, and fever; a general flu like feeling. In about 20% of people with RA, inflammation of small blood vessels can cause nodules, or lumps, under the skin. They are about the size of a pea or slightly larger, and are often located near the elbow, although they can show up anywhere.

How is it diagnosed?

Rheumatoid arthritis may be difficult to diagnose. Many other conditions can resemble it and its symptoms can develop insidiously. Blood tests and x-rays may show normal results for months after the onset of joint pain.
According to the American College of Rheumatology, 4 of the following 7 symptoms indicate a diagnosis of rheumatoid arthritis:

1. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks
2. Arthritis of 3 or more joints, lasting for at least 6 weeks
3. Arthritis of the hand joints, lasting for at least 6 weeks
4. Symmetric arthritis, lasting for at least 6 weeks
5. Rheumatoid nodules
6. Positive rheumatoid factor (blood test)
7. Joint changes on x-ray

It is important to note that 20% of the people with RA will never have a positive rheumatoid factor; you can have RA and have a negative rheumatoid factor.

How is it treated?

Treatment of rheumatoid arthritis focuses on relieving pain, reducing inflammation, slowing or stopping joint damage, and improving the person's sense of well-being and ability to function. A combination of treatments is almost always used.

Rest and exercise:
Both rest and exercise help in important ways. People with rheumatoid arthritis need a good balance between the two, with more rest when the disease is active and more exercise when it is not. A physical therapist is useful in instructing the person with arthritis how to exercise without further damaging the joints.

Joint protection:
Splints, braces and supports can protect the joints and help prevent further damage. A doctor or a physical or occupational therapist can help get a splint and ensure that it fits properly. Other ways to reduce stress on joints include self-help devices, devices to help with getting on and off chairs, toilet seats, and beds; and changes in the ways that a person carries out daily activities.

Diet:
Everybody has a diet to "cure rheumatism," but there is no cure for rheumatoid arthritis, diet or otherwise. However some people are able to lessen their symptoms by a change in diet. Some claim that foods from the nightshade family--tomatoes, potatoes, green peppers, and eggplant--can exacerbate arthritis. About 5% of people with RA experience worse symptoms after drinking milk. Still others have an increase in symptoms after eating red meat. It is important to remember that no one diet will work on everyone and perhaps the best diet plan for a person with RA is simply a healthy balanced diet.

Medications:
NSAIDS (Nonsteroidal anti-inflammatory drugs) are commonly used to treat rheumatoid arthritis. Available over the counter or by prescription, they fight inflammation or swelling and relieve pain. NSAIDS are usually the first drug prescribed to a person newly diagnosed with rheumatoid arthritis. NSAIDS may relieve pain and swelling, but they do not slow the disease process.

DMARDS (disease modifying anti-rheumatic drugs) are also known as SAARDS (slow acting anti rheumatic drugs. As their name might suggest these medications take some time to be effective, up to several months. Most of them were originally invented to treat other diseases but were noted to have a positive effect on rheumatoid arthritis. Most of them do not have any common properties other than their ability to slow down the progression of the disease. The most common DMARDS used include methotrexate, hydroxychloroquine, sulfasalazine, gold and leflunomide (Arava).

The newest RA medications, biologic response modifiers, are drugs that interfere with the autoimmune response in RA. These are drugs that are genetically engineered to target the immune factors known as cytokines, particularly tumor necrosis factor (TNF) and certain interleukins, which play a major role in the destructive RA process. Enbrel and Remicade fall into this category.

Another new treatment is a device called the Prosorba column. It mechanically removes inflammatory antibodies from the blood. The blood is first removed from the body through a catheter (a process called apheresis) and then passes through a column coated with a substance called protein A, which binds to the antibodies. The blood is then returned to the patient.

Oral corticosteroids, such as prednisolone and prednisone (Deltasone, Orasone) usually work quickly to control inflammation. Due to the potential for serious side effects, long term use is usually discouraged. However if long term use is needed to maintain the control of inflammation, the lowest possible dose should be used. Corticosteroids can also be injected directly into the joint for relief of inflammation limited to one particular joint.

Recent studies have shown the antibiotics in the tetracycline family to have a positive impact on the progression of rheumatoid arthritis.

Topical pain-relieving creams, rubs, and sprays can be applied directly to the skin for temporary relief. There are many brands available over the counter.

Surgery:
Several types of surgery are available to patients with severe joint damage. These procedures can help reduce pain, improve the affected joint's function and appearance, and improve the patient's ability to perform daily activities. Surgical procedures include joint replacement, tendon reconstruction, and synovectomy.

What research is being done?

Researchers are studying genetic factors that predispose some people to developing rheumatoid arthritis, as well as factors connected with disease severity. Findings from these studies should increase our understanding of the disease and will help develop new therapies as well as guide treatment decisions.

Scientists are studying the relationships among the hormonal, nervous, and immune systems in rheumatoid arthritis. They are exploring whether and how the normal changes in the levels of steroid hormones (such as estrogen and testosterone) during a person's lifetime may be related to the development, improvement, or flares of the disease. Scientists are also looking at how these systems interact with environmental and genetic factors. Results from these studies may suggest new treatment strategies.

Some evidence indicates that infectious agents, such as viruses and bacteria, may trigger rheumatoid arthritis in people who have an inherited predisposition to the disease. Investigators are trying to discover which infectious agents may be responsible. They are also working to understand the basic mechanisms by which these agents might trigger the onset of rheumatoid arthritis.

Some of the related information found on Arthritis Insight:

Featured Discussion-Rheumatoid Arthritis
For support visit our Chat Room and Message Boards.
For medication information see our
Medication Index.
For information about tests and blood work go to
Tests & Labs.
To find tips for getting through the day, stop by our
Better Living section.
To find out about surgeries and joint replacements see
Surgeries.
For more sites about Rheumatoid Arthritis check out our
Web Links.

For more information:

The Arthritis Foundation
Rheumatoid Arthritis: by drdoc online
Pharm InfoNet - Rheumatoid Arthritis Center
University of Washington - Rheumatoid Arthritis
 
The end - this is part of this site, Arthritis Insight, amazing
[QUOTE=Gimpy-a-gogo]Thanks Suzanne. My RD doesn't know anything about AP so I'm flying blind here.[/QUOTE]
Hi Gimpy, I haven't posted for a while but still read this thread every couple of days.
Just like to say congrats on your pain free week, you certainly have come a long way and so patient with the weaning off Mtx, it seems to have been the right way.
 
I have only been on AP 6 weeks and had my 1st phone consultation with a AP doc out of state and he advised me to go cold turkey with Mtx and sulfasalazine. After a couple of sleepless nights and advice from someone at Rheumatics, was advised to wean off Mtx and stay on Sulfazalasine, as it wouldn't interfere with the Abx. She said the Mtx would keep the herxing mild, and must say in my case, if the herxing was any worse I don't know how I could stand it. Confused.
 
Its great to hear how well you are doing, as your posting in the beginning also played a big part in my starting AP.      Thankyou and keep on getting better.......Annie
 
 
watchingwolf was helpful to me in starting AP, sharing her experience.  THinking of her.Hey Annie!
 
So did you dump one?  Which one?  The mxt or the sulphasalizine?  If you hadn't yet, I suggest the mtx because the other is a really really really weak antibiotic (like a poor relation) and because you're on the probiotics nothing is kind of contraindicated.
 
Are you on probiotics?  Watch your BM's - that will indicate if you need to up the dose.
 
And have you tried the Whole Lemon Olive Oil drink?  Yes, it's a pain to make but I swear it cuts herxing.  My left leg would drop in size within 1/2 to 1 hour of using it so my hubby made me continue as I HATE LEMON and had to gag that stuff down.  Looks like I'll be starting up again as he's going to be using it for himself now instead of me or his dad.
 
Also, are you doing MWF?  That gives you days off for good behavior and it's easier to see when it becomes dose related instead of 'herxing all the time'.  And if it gets too bad - skip a dose or two until you can handle it and then start again.  Some people are just very sensitive to the med. 
 
Hugs,

Pip

.

justsaynoemore2009-06-16 17:53:37Cathy -
 
I LOVED your post a page back on AP listed on the AI site!  I'd never seen that before!
 
Pip
 
Pip, pretty amazing, eh?  That this same site, Arthritis Insight, with their impressive Board of Directors and medical advisors would print:
 
Recent studies have shown the antibiotics in the tetracycline family to have a positive impact on the progression of rheumatoid arthritis. (wish they had posted the studies for the minocin recent study thread :)

Some evidence indicates that infectious agents, such as viruses and bacteria, may trigger rheumatoid arthritis in people who have an inherited predisposition to the disease. Investigators are trying to discover which infectious agents may be responsible. They are also working to understand the basic mechanisms by which these agents might trigger the onset of rheumatoid arthritis. (ditto on posting references on "evidence" cites)

Rockin' Annie, thanks for letting me know my story has been useful to you. Sometimes around here us APers can feel pretty ganged up and jumped on, so things like that make it all worthwhile.

Yes, it's taking forever but my herxes have been very, very mild. I still know I have RA most of the time, but it's like it's lurking far in the background, and I do have many weeks that are painfree, including this entire summer when I didn't have even a twinge for 3 months (there was a lot of mtx dose dropping during that time, as well). But if I had a nearby doctor I might have done things differently---it's so hard to tell a herx from a flare. However, I know a lot of people do the weaning thing, so while it's not as pure, and you are using the mtx longer, it still works.

Please keep posting here with your progress and questions!JSNM, great find! Every now and then I find something on AI about AP, including whole stories of people who have reclaimed their lives with it.what is herxes?Justsaynoemore,
 
You have once again posted claiming to be an entire copy and paste but as usual you forgot to post what many would consider to be very important information about what you posted. Was it just an oversight? Anyway here is the very important part that you decided not to post:
 
References:
Well-Connected Report-Rheumatoid Arthritis, Copyright ? Nidus Information Services, Inc. 1999
American College of Rheumatology
Arthritis Foundation
The National Institute of Arthritis and Musculoskeletal diseases, Handout On Health-Rheumatoid Arthritis
 
Do you think that the American College of Rheumatology has updated their recomendations for therapies for rheumatoid arthritis? Do you happen to know their updated (July 2008) recomendation for minocin therapy? If you don't know what it is, I will be very happy to post it for you. They recomend minocin only for the very mildest form of RA, right? Let's see, should we stick to the old views from 1999 or should we consider the recomendations from July 2008? Mmmm, such hard decisions, right? Just let me know if you need me to post the American College of Rheumatolgy's recomendations for ra therapy. I will be glad to post it in it's FULL entirety.
 
LEV
inflamed, a herx is short for Jarusch-Herxheimer reaction, which is a temporary worsening of symptoms caused by bacterial die-off (toxins) being dumped into your system:

http://en.wikipedia.org/wiki/Herxheimer_reaction

.

justsaynoemore2009-06-16 17:54:30Hi Pip.........gee I love all you guys , so very positive, yes I am on 5 mg Mtx and stayed on Sulfazalazine but will start to wean off in the next few weeks. I am dosing MWF and enjoying my days off, like you said.
 
I have read and reread this thread many times before starting AP and took everyones information on board. Thanks to all you guys that posted their progress on this thread, it helped me so much to make my decision to start!.
 
Yes Pip, after reading your posts on Probiotics and BM's I wouldn't dare not to, its so funny the other day I even yelled out to my hubby because my BM's had changed for the better (giggle) LOL  and I thought of you at the time for making me aware of it!.
 
Yes have done the lemon/olive oil drink on the first week, it was a life saver that day, I phoned my hubby while I was babysitting and he had it ready for me when I got home, it was yummy  (I know you hate lemons). I also drink gallons of water with lemon throughout the day.
 
 JSNM..........., I am still on 5mg of Prednisone, but will wait as suggested by my AP doc, till I have IV's and other tests done before weaning off.  I am doing things slow, you guys have made it easier for me with this thread.
 
I will let you all know when I have my first "Ah Ha" moment.
Its really wonderful news about being able to do more with your bad hand, I do hope it keeps on improving for you, or should I say I know it will keep on improving for you.
 
Gimpy......... will keep you posted on everything, thanks again.....................Annie
 
 
Tammi Shlotzhauer in Living with Rheumatoid Arthritis confirms that minocycline IS safe and effective and quotes the MIRA study.  THis book is recommended by AI.
 
Just a reminder.
Another good catch Jan!
 
OK guys, I'm so MAD I can't see straight.  Today the kids had off for Veterans Day and because the baby was around I couldn't do all the things I wanted to do and ended up having to fake organize my medical records because while they were in a binder, they hadn't been 3-hole-punched and the binder fell off the desk shelf and went kersplat and  there was a huge mess. 
 
The part that got the most messy was the stuff from around diagnosis time.  When I pulled the records, I ordered doctors notes and all kinds of things like lab work etc. 
 
So, there it is in black and white - the Neuro I saw, the various rheumies, the problems with my PCP and EACH AND EVERY DOC MISSED SOMETHING IMPORTANT.  I cannot believe the Great U.  What a bunch of morons! 
 
How about my CCP was 7.6 in April and marked High but nobody thought to mention that to me.  I guess that must go up and down too because it was 0 a few months later and jumped up to 3 when I started AP. 
 
Or specifics about the neuropathy that nobody mentioned and more tests they wanted to run ...and didn't.
 
Or other doctors mentioning that tests should be run...and they weren't.
 
And the absolute kicker is the infectious disease doc I saw ruled out MYCOPLASMA infection, not by any blood work, but because I was Palindromic and the episodes were sporadic.  He suggested that if I went on to all the time that it might be some sort of gyno/urinary infection and I should have some sort of antiviral treatment to rule out myco infection. 
 
Do you think that was ever followed up upon? 
 
Mind you, at that time, terrified beyond terrified, I was demanding antiviral therapy that the Great U TOLD ME they didn't do.  Only here was the doc that wanted me too!
 
I might have avoided this whole thing - PRA, RA, PRA again - if these bastards would have read each others damn notes. 
 
MORONS!
 
Pip
Pip, could you tell me what is antiviral therapy?  Thanks a lot.

.

justsaynoemore2009-06-16 17:54:58Sorry about this.  GLAD you now have a good AP doctor and getting good care.DRrrrrrrr........I have never had such an experience, but that doesn't make me less irate for you. Be comforted that you probably wouldn't have time to educate yourself about the ins and out of AP to deal with it in a timely manner, regardless.

I used to feel angry because I went to my doctor when I had the first pre=symptoms of RA, and if AP was in general use in the medical world there's a good chance I would not have RA today, as people treated with aggressive AP at the very early onset often "nip it in the bud", but I let that anger go because there was no way I could fix the past so the anger was useless and only self-detrimental.

We have to remember the human foible is one of the elements in the mix. That's people for you!Thanks guys,
 
Paula - antiviral therapy is used with AIDs patients and in some cases of Herpes, I think.  It goes after a virus and tries to bring it under control and is one of the reasons AIDS patients survive so long now-a-days.  I wanted it because I found a case study in Belgium of a 19 year old that showed with 'severe early onset' RA and was treated with them and 'cured' but my PCP refused.  She's the one that got this report.  My rheumy saw this too and we asked him for Antivirals. 
 
Cathy and GoGo - yes, I should let it go.  I was so angry yesterday I decided to take the day off and not do much because I couldn't face any more of that file.  Sigh. 
 
I just wish I knew then what I knew now - I could have seen those reports and done something about it.  Not seening our own paperwork is what does us in.
 
Pip
I am sorry you have both had such miserable experiences with medical help. I am so lucky that my internist was on the ball and suspected RA early, and I really like my rheumatologist -- she was accommodating with the AP from the beginning, even though she doesn't embrace it as a treatment.
 
I had an appointment with her today and she thought I was doing great. She ordered blood tests again -- I haven't had the Rh factor or ANA tests in almost a year -- so it will be interesting to see how those look now. I know I am not completely normal -- but I feel good and would be grateful to be like this the rest of my life. But like most of us, I have learned to just take it one day at a time.
 
My clinical presentation was pretty clean -- I am actually showing more visible signs of osteoarthritis than rheumatoid -- as some joints/bones are enlarged -- but they aren't swollen or full of fluid -- more aging. I have been pretty religious about exercise these days -- do my weights twice a week and I am finally adding a little weight and feeling stronger. My kids gave me a jumprope -- man, that's hard. I can't believe how easy that was as a kid, and how hard that is as a 55 year old. I have worked up to 2 minutes -- and my goal is to get to 5 minutes, 3 days a week. It's supposed to be good for my bone density and my coordination. I don't look very coordinated, I must say. 
 
Should have the test results tomorrow ....
 
Bonnie
thanks a lot for explaining about antiviral therapy Pip

.

justsaynoemore2009-06-16 17:56:02Where do you live Cathy? Are you still in Florida? One lucky break I have is my husband is an ophthamologist. Because he is so knowledgeable -- he is a great advocate for me. And he is pretty careful and selective of professionals. He is also -- in spite of being mainstream himself -- very open to alternative therapies, and embraces them himself. But he is cautious. Sometimes he's an incredible asset -- sometimes it's challenging to get him to accept my questioning, suspicions and doubts. But all in all, I know I am quite lucky.
 
Living in an urban area like Chicago is also helpful, because there are just so many options -- doctors and hospitals -- traditional and non traditional paths. My husband got me into prolotherapy -- which has healed my shoulders and helped my hands. And I have been doing acupuncture, which has also been very positive. But there are incompetent and greedy and arrogant folks everywhere. It's challenging.
 
Hope you have someone you like now. Sounds like you are much improved ...
 
Bonnie
JSNM...you suck!!! [QUOTE=inflamed0nline] JSNM...you suck!!![/QUOTE]

Is that a joke? because if it isn't I'm going to have to retract my birthday well wishes.No joke, I'm just sick of all the crap in here and you especially, a special "you suck" for you too Gimp...you pot smoking liberal canadian!Oh, I see you are the troll, not the other InflamedOnline. You're the zero.

.

justsaynoemore2009-06-16 17:56:30I was at my GP's yesterday asking her if she knew anything about different RDs because I want to consult with one about AP (but still continue with my current RD), and it turned out my GP now has several patients on AP. One has RA and is consulting with a doctor in Boston and one has Sarcoid and is seeing the famous MP doctor we have here. She said they are both doing well. I was excited because she hadn't heard of this treatment 2 years ago when I brought her the studies and now here she has 3 patients being helped by it.
Go AP!Another source:
 
 

Risk Factors
RA appears to be caused by a combination of genetic vulnerability, environmental triggers, and hormonal influences. People with the genetic marker, a portion of DNA that is used to identify an individual disease or trait, known as HLA-DR4, appear to have an increased risk of developing RA and of having more severe disease. Some of the suspected environmental triggers include Epstein-Barr virus and bacteria including streptococci (which causes strep throat and rheumatic fever), salmonella (which causes food poisoning), Escherichia coli (E. coli, which causes urinary tract infections), Helicobacter pylori (which causes stomach ulcers), and Borrelia burgdorferi (which causes Lyme disease). Cigarette smoking is also linked to RA.

I only got a portion of my test results -- but it's good. A year ago (10/07) my RH factor was 132.  Now, 11/08, it's down to 60.7. That's better than a 50% improvement. Of course I was secretly praying it would be normal -- but I am grateful that it is going in the right direction. Sometimes I want to pretend that I don't really have this disease. Life changed so much, so quickly. I need to remember to appreciate how well I am responding, and how lucky I was to find AP and a cooperative rheumatologist from the beginning.

I'll get the balance of the tests at the end of the week. Take care.

Bonnie

.

justsaynoemore2009-06-16 17:57:25Bonnie - how absolutely fab.  My RF is the only killer I have left after 2 years.  I was at 706 when I started AP and am somewhere in the 300's now (don't know because I was really late for my last appt and didn't get the results).  At one time I was down to 263 but recently found out that was because there was a screwup at the lab and they stopped counting there.  Arrgh! 
 
Please post the rest of your tests.  You think you feel great now?  You wait...it's only going to get better and better.
 
Rockin Annie - you still with us?  Paula?  Somebody I'm forgetting to respond too (slammed with Holiday stuff)
 
Hugs,
 
Pip
Bonnie, great news! and good luck with the rest of your results, and keep jumping, I too jump rope and am up 3 mins, great for the heart and lungs (giggle).
 
Pip, still here and doing great, come here every couple of days, I will give you all an update at the end of the month, like you, I am so busy with the festive season coming up, babysitting and partying!.
 
Hope everyone else is well and still motivated................Annie
Hi all,
 
Update on my tests - have gone from 5 to 160 but am not bothered it is early days for me and expected it to get worse before it drops, plus I was having a bad herx on the day I had the blood taken .........
 
Had a joint consult with my doctor & naturopath last Frid and it is all good,
1     I am not allergic to any of the abx I am taking, and certainly not the amoxicillin, the uticaria must have been caused by something else, so that is good news
2     The abx is working, just needs tweaking and upping the dose, so a new abx regime started Mon which is :
 
M W F
Rulide (roxithromycin) x 75mg
Amoxil x 2-1/2ml = 125mg
Klacid (clarithromycin) x 62.5mg
Doryx (doxycycline) x 50mg
 
Plus Lymes is still there (hence why I am taking the penicillin) in the background.
 
So it's all good..........
 
I had a play with the puppies (5 wks old now) on Sunday - yes all 13 of them, and could have taken them all home.........
 
 

.

justsaynoemore2009-06-16 17:57:48Hi Cathy,
 
Will do ......
 
I count myself very lucky to have found a doctor who also works very closely with a naturopath and doesn't want to leave anything to chance..  Her goal is to identify the bacteria in my system and then target it - hence why there is such a range of abx being used in my case. 
 
Plus I am a 'lets just get this done' kinda girl - so we are hitting it hard and fast.  I know if the herxing gets too much that I can cut back, but so far it is OK.   I have learned to recognise the difference between a herx and for me what used to be the start of a flare so I am not as apprehensive as I used to be with the herx pains/aching, before I didn't know the difference and was waiting for it to escalate to the 'please kill me & put me out of my misery' pain I used to get when I flare ---- in fact it is 6 mths since I got my emergency scripts for tramadol & morphine and when I looked last week they were out of date, saw my GP yesterday (different doctor) for another lot of scripts and he got great pleasure out of shredding the old ones (must admit I could have made a fortune selling the tablets on the street....lol... only kidding!)  The doxy is new for me and I am now taking the abx 3 times a week instead of 2 - so will see what the difference is in a couple of weeks.
 
Maz
 
 
Maz!  You are doing great!  And I had the same thing happen to me - filled the Vicodin and only needed one.  I still have some in the cabinet for when I hurt myself walking across the room like I did this summer when I tripped over my own flip-flops.  Arrgh!
 
Pip
Maz-
 
Good work.  Thanks for posting.
The Nicholson Dietary GUidelines for people with Chronic Infections is posted here on Page 36 if anyone is interested.Thanks Jan - I am reporting in that these past 3 months or so of having great periods of feeling fine, then slipping a little, then coming back stronger are continuing.  But, I haven't wanted to post this as I can jinx anything, but about 2 weeks ago, the stiffness and pain in my fingers/hands/wrists is gone.  Today, I woke up, same thing.  It's like its disappeared.  I don't know what to think about this unexpected loss of RA symptoms.  If this holds, I am going to be a fanatic about recommending AP protocol for RA, no matter what stage you are in.  So far, for me, this works - miracles.  You go Cathy!  WoooHooo!
 
OK, I kept forgetting something else I found in my chart when I started (and stopped, I'm obviously not to the point of quiet acceptance) organizing my paperwork.  I did too test positive to c. pneumonia.  I have consistantly posted that that test was negative.  WRONG!  It was positive at the Great U by the infectious disease doc.  Which means either I tested negative by my AP doc 6 months later or I misunderstood him and I was positive but never realized it.  I have to find his tests to see.   Arrrgh!  They could have done something!
 
Pip
So, my friend's Mom has a friend with RA who I have been saying forever she should phone me because I wanted to tell her about the AP option. I also sent a note with the title and information of The New Arthritis Breakthrough. But the woman never phoned me and instead tried all the different drugs and nothing worked and she got more and more desperate, even going to Poland TWICE for some kind of radiation therapy by sitting in a uranium mine or some such therapy. But nothing worked.

She goes to the same arthritis centre I do and one day a volunteer there took her aside and told her about AP. She tried it, and guess what? Yep. It worked and she feels a lot better now. My friend's Mom says she's walking "like a normal person" and everything. Unfortunately it took her so long to find something that works her hands are kind of f**ked up.

You can lead a horse to water....

I'm glad she finally got help, though, and it was VERY interesting it was the volunteer at the arthritis centre who told her. Go-Go - that's an interesting testimonial.  I just got up and no pain or stiffness in my hands again, and its been going on for weeks.  The right hand is cool since that stupid box hit me in the head, but its improving and I know it's just my bad disc herniation acting up from having my clock rung.  I wake up, take off my hand splints, flex my fingers - and its all gone, no stiffness, no pain. I don't know what to think. 
 
Pip - sorry, morons.  Another reason to always leave the office with your blood work and demand copies of any other tests run.  Then keep your own spreadsheet and look for patterns.  What do we pay these nutbags for if they keep results from us?
bumpI just reread The New Arthritis Breakthrough.  Still a good read.Hi everyone,
 
Am amazed - I have been under a lot of stress this past 5 days and I am not flaring !!! whoo hoo .....obviously the AP is working !!!!  
 
The past couple of days have been strange though, but for the better strange, the herxing seems to have eased off and instead of it concentrating around my right wrist area and really painful, it is now only a dull ache there and just little painful on the back of my hands, base of my thumbs and thigh muscles........I am impressed .........
 
I started AP in 2nd June 2008 and as you know only recently had my meds changed and upped to 3 times a week instead of 2 --- so I am at the 6 mth mark now and I am feeling better every day.  Not only is the herxing easing off, the ache is changing intensity and I am nowhere near as tired as I have been ..........
 
Think I am getting better guys !!!
 
Cheers,
Maz
 
WOO HOO MAZ!!! YOU GO!!!
 
I have lost track now but I think I am going on three weeks, but again this morning, no stiffness or pain in my fingers, which has been constant for the past year.  I was wondering why I was only getting worse on MTX and Plaquinel, as I thought the drugs were suppose to slow down the symptoms, but it was like I suddenly had real RA symptoms once I started MTX.  And now suddenly my stiffness in my fingers has disappeared.  I don't know where it went, but I am thankful its gone.  This is getting just plain weird.  I was happy just not to feel sick, fatigued, and weak after a few months on minocin, but this new development is pure bonus. 
Fantastic !!   
Now all I want is for this to just continue.
 
I remember when I went to the 3 rheumies - 2 of them I just walked out on and the 3rd sat me down and explained everything she knew about the disease and treatment path she wanted me to take - she told me if I started taking mtx & plaq straight away it would delay the onset of the disease --- when I told her I wouldn't not now & not ever take mtx she got very indignant.  I reminded her that it was my choice not hers as to what treatment path I was prepared to go on and she replied in that case I will see you in a year, you will be begging me for the scripts.  That was in Dec 07 and I started searching for alternative treatments in Feb 08 -- I am so glad I didn't take her advice!
 
In the past 3 mths I have spoken to other doctors & specialists (not rheumatologists though) and they just roll their eyes when I tell them I was advised to go onto mtx.  The look on their faces told me everything I needed to know and reassured my decision of going onto AP was the right thing to do.
 
My goal is still firm in my mind - ie 3 yrs and remission!
 
 
 
 
 
 

Maz - I am so thankful on this day of thanks to have finally rounded up a small team of medical doctors around me, who I have their trust and respect, the ones I trust after 7 years of floundering around in the American medical system.  I think I blew through 43 (I have lost track) clueless MDs as I was sent everywhere but rheumatology.  Heck, I didn't even know about RA. 

I read that you shouldn't expect big changes for a year, and once again, this morning, no pain or stiffness in my fingers.  I am going to go cook a Thanksgiving dinner without worrying about rinsing the bird in cold water and paying for it for hours.  Two years ago I laid on the couch and had to direct my poor hubbie and our best friends on what to do.  LOL  Oh what a difference a year can be in RALand. 
 
Happy Thanksgiving to everyone, and special blessings for a good RA day.  Cathy
If this has been posted here before, sorry :)
 
 
Résumé / Abstract
 
Objective To investigate the presence of oral bacterial DNAs in serum and synovial fluid (SF) of patients with active rheumatoid arthritis (RA) and psoriatic arthritis (PsA). Methods Serum and SF samples from 16 RA patients, 14 PsA patients, and 9 osteoarthritis (controls) patients were extracted for oral bacterial DNA. This was used in a checkerboard DNA-DNA-hybridization set up, to identify 40 different bacteria. Results Mean number ± standard deviation (SD) of oral bacterial species in sera were 6.2 (3.2) in the RA group (p = 0.004) and 5.4 (2.7) in the PsA group (p = 0.009) compared to 2.1 (1.7) in the controls. Periodontitis associated species Porphyromonas gingivalis and Prevotella nigrescens were exclusively detected in RA and PsA. Mean number (± SD) of oral bacterial species in SF were 14.0 (6.8) in the RA (p = 0.001) and 19.4 (7.1) in the PsA group (p < 0.001) compared to 4.0 (1.7) in controls. P. gingivalis, Tannerella forsythensis and Prevotella intermedia were exclusively identified in RA and PsA SF. Higher means of DNAs were found in RA SF compared to RA serum (p < 0.001), and in PsA SF compared to PsA serum (p < 0.001). Higher concentrations of bacterial DNAs were found in RA and PsA compared to controls. Conclusion Higher variety and concentrations of oral bacterial DNAs were found in SF compared to serum of RA and PsA patients. These findings indicate that synovial inflammation in RA and PsA may favor trapping of oral bacterial DNAs, suggesting a perpetuating effect of oral pathogens in joint disease.
Argh! I knew I should have never gotten that root canal.

I've seen this before but I'm in total denial about needing to get a tooth pulled and cleaned out.[QUOTE=justsaynoemore]
Maz - I am so thankful on this day of thanks to have finally rounded up a small team of medical doctors around me, who I have their trust and respect,
I read that you shouldn't expect big changes for a year, and once again, this morning, no pain or stiffness in my fingers. 
I am going to go cook a Thanksgiving dinner without worrying about rinsing the bird in cold water and paying for it for hours.  Two years ago I laid on the couch and had to direct my poor hubbie and our best friends on what to do.  LOL  Oh what a difference a year can be in RALand. 
Cathy
[/QUOTE]
 
Hi Cathy,
 
I am so glad you have finally found a small team of MD's you trust.  With that kind of support team behind you I am sure in time that your memories of the past will fade fairly quickly and that the 'present day' will be filled with hope of a new beginning. 
 
I do hope Thanksgiving went well.
 
Cheers & a little sunshine from Oz
 
 
 
Hi Maz, how're you doing?
 
OK - here's yet another reason I've been miffed lately.  So, I decide to finally go in and get my area near where my wisdom teeth originally were cleaned out.  I research and find a biologic dentist who will do the work and apparently he's the dentist to the stars.  He's running a freakin' spa down there - and won't do the surgery I want unless I agree to jump thru all these hoops which include seeing an endodontist about a previous root canal, having all my meds and supps tested for efficacy, having my rheumy verify I'm in good enough shape to have the surgery hormonally etc.  Arrgh!  It's crazy and frankly, I can't afford these hoops. 
 
So, I make the endo appointment and am going to tell him 'pull the tooth' because I'm not getting another root canal.  Except he tells me 1) I don't need a root canal and 2) I have never had a root canal on the teeth that he checked with X-rays. 
 
OMG - do you know how many dentists have told me I had a root canal?  Now I have to go back to the new perio/biologic dentist and have him take a full set of X-rays of my mouth to make sure I really don't have a root canal. 
 
If the new X-rays don't show a root canal, then I'm OK.  If however it does, then I'm going back to the endo that told me I didn't need the work to have him redo it.  He could have ripped me off but he didn't.  And he redoes dental work all the time.  It's his specialty - redoing root canals in a biologic way.
 
So, GoGo, think about a trip to LA.  This guy used to run UCLA's endo department in the Dent school.
 
Pip

Pip-

GOod luck!!!!!!!!!

Hi Pip,
 
Good grief !!!
If what you are saying is right - my god, what a load of s..t -- to tell you you need a procedure done and then don't do it, don't charge for it and don't say anything to the patient (you) -- if that happened here, and you could prove it, even I would suggest suing, you would win $thousands. we are not usually a letigious population, but speaking just for myself I would sue!!  What a lot of grief you have had thinking you had root canal and the repercussions .... I hate to think what problems you have had and more importantly what has passed you by when you assumed it came from the root canal work you had done. 
 
Anyway -  Good luck Pip, I am sure eventually all will be well.....
Cheers,
Maz
 
 
Maz-aust2008-12-01 16:41:00Now on to other things.
 
I had a flare Mon night, and yes it was the palm of my hand, but not as bad as it usually is, I didn't need morphine this time....... it was so unexpected I wanted to work out what caused it and eventually I realised; my daughter called in for a cuppa Mon avo and made lunch, toast with avocado, it was the butter she used !!    It had to be, it was the only thing that was different, she used different brand of butter on the toast, I could believe just one slice of toast would give me that severe a reaction....but it did!  (I usually use a dairy free marg not butter, because first of all I don't really like butter and 2ndly I was advised to give up dairy)
 
It's gone now --- no more pain, no more aches, no nothing --- as usual it's as if it hadn't happened.
 
Message there - steer away from anything dairy !!
 
 
 
 
Maz-aust2008-12-01 16:34:51Dairy is O.K. for me.  I guess it depends.Yeah Maz - keep on keeping on, as GoGo says!
 
And, no, I'm not upset any more - more like, MORONS can be found in dentisty too.
 
Hugs,
 
Pip
Question,
 
My herxes have definitely subsided and changed again is it too early into the treatment to have it ease up this much ?? or has my body adjusted to the doses of abx and needs tweaking again??  I have no idea .... lol  God I feel like I ask stupid questions.....
 
When the herxing started it was like the onset of my flares without developing into the 'please kill me & put me out of my misery pain' of a flare...... then it went to pins & needles & aches, then uticaria, then sharp stabbing pins & needles with aches & stabbing pain every now and again which developed into numbness & pins and needles and now it's just a really dull ache and diminishing over the past few days - this morning I was actually able to have a pain free shower for the first time in month and months.
 
Although I don't have RA and have PA, it is still an AI disease & I believe it can be treated successfully with AP - hence why I am on it ........ I am just a little confused about the timeframes.
 
Any info would be a help right now .....
But having said that - I intend to keep on doing what I am doing....
 
Maz 
Maz, I find no one can really answer the herx (or flare) question to anyone's satisfaction because everyone is so different. It always boils down to eventually you will recognise a pattern. Another thing is keeping track of "good" days and "bad" days, and if you notice the "good" days slowly (or quickly) getting more frequent you are herxing. The same thing goes for timelines. Some people have an almost instant response and some people it takes months or even years.

Personally, if I was only of abx and having no pain I wouldn't change a thing. I go through some pretty long stretches of no or low pain and then I reduce mtx again and then I have some weeks of pain that slowly resolve. I've done this often enough now I know it's a herx. (I have gone from 20gr mtx to a current 5gr, and feel better than I ever did before adding Minocin to my meds).
Maz, all I know is about three months ago I suddenly had a good day after an initial 18 months of traditional MTX, Plaquenil, folic acid with no change in symptoms.  Nadda.  I added in the minocin, and am at about 15 months into my AP therapy after chucking the MTX when my liver enzymes skyrocketed.  I stopped the Plaq about a month later. 
 
That one good day turned into several, then I slipped back, came back stronger, for a longer period, slipped back again, came back stronger, etc. etc.
 
Then about a month ago the stiffness and pain in my fingers suddenly disappeared.  It's been bizarre.  And then last week my strength in my hands and wrists suddenly returned, just in time to cook for Thanksgiving.  And its holding, along with my sudden disappearance of stiffness and pain in my fingers.  I am opening jars, not dropping things, my response to hot and cold is not as bad, so huge, huge changes.
 
I have no idea what is going on, but if this is what the promise of AP therapy can bring, bring it on!
Ok - so it isn't really unusual, great!
I had visions of yet another change needing to be done to my abx and wasn't looking forward to that this close to Xmas.
 
Fortunately or unfortunately depending whether you are looking at it from my point of view or your own ....lol  (my attempt at humour to a debilitating disease) I don't have RA so lucky for me I don't have the constant aches & pains etc that RA patients seem to have, I have PRA and with my flares that means that I have long long periods of no pain whatsoever then get excruciating pain for 3 days then it's gone again.  (that was my pattern and it never moved - it happened about every few months)
 
Since I started AP the pain of a herx isn't nearly as intense but has been lasting for a week or two then I get a day break then it starts again... 
 
I was expecting this to start dissapating around the 12-18 mth mark but it seems to be happening already .... I am amazed and pleased if this is the start to wellness and really pleased that since AP I have got my life back....
 
Thanks for all the info and look forward to more reading and learning.
 
 
 
Maz-aust2008-12-03 20:37:56Hi Maz -
 
It's because you're PRA and haven't headed into straight RA yet - lucky you!  I swear, from the PRA peeps we've seen, we usually respond quicker.  It's the nature of PRA.  I think it's because something in us works harder at 'containing' this.  Of course, when that pain goes to 'all the time' I'd switch to regular RA in a heartbeat.
 
Hugs,
 
Pip
Hi Pip,
 
Thanks for the answer - yet another one of my stupid questions answered by you - it's because of you I keep on going, and so glad I have if this is the start of the end... what a dream it would be to get into remission !!
 
I get that I am PRA and not RA (and don't want to be RA I can tell you) but seems to me that when I ask my PR GP about it she always says of all her patients I am the unknown quantity because I haven't taken any drugs for my condition before starting AP... other than pain relief & anti-inflammatories when I was flaring that is........  She seems to be waiting to see what happens as well.
 
Hugs back
Maz
 
 
 
 
Maz-
 
Thanks for posting.

Hi fellow Apers,

I have been a little slack in coming here and posting, but I do check out this thread every now and again. I thought it might be time for an updateSmile.

I have been on Abx now for 10 weeks, I have weaned off Mtx and Sulfasalazine, still on 5 mg Pred and will wean off early next year after a block of Iv's.
 
How do I feel?...........I have been taking MSM, I am up to 25,000mg and I feel wonderful!. The onset of my RA was 5 years ago and gradually got worse even with all the meds I was taking, in the end I couldn't even have a dance without cringing with pain. The last 4 weeks I have gone from dragging myself around to dancing 3 nights a week Big%20smile .
 
I still have pain, but very minimal at the moment, and I do know that it could change everyday, but I am very thankful just to be able to get back some of my previous life style and hope it continues to get better.
 
I have you guys to thank for putting me on the right road, and thank the good Lord everyday for finding you!.
 
I hope you are all keeping well and have a wonderful Christmas!
Good news!!!  Glad to hear it.   Keep keeping up posted!!!!WOO HOO - you go girl.  I am hanging in there too - this hand/wrist no pain, stiffness, return of strength thing is mind boggling - and I LOVE ITHi Annie,
 
Wooo Hoooo from me too ---- I do hope you have a great Xmas this year. 
You are proof that there is light at the end of the tunnel!
 
Only a couple of weeks 'til Xmas now ---
Are you going away ??
 
Got my new puppy yesterday avo (Clyde) - it took him all of about 2 hrs to settle in before he was trying to boss my other dog around (Gypsy) - and 8 wks old and taking himself outside to do wees, clever boy, hope that lasts but I don't think so somehow...lol 
 
Maz
 
 
I saw my eye doctor yesterday, and he was delighted with the improvement of my eyes.  When I first told him I was on minocin, he said that was great, minocin is great for the eyes.  Yesterday he told me they use it as a last resort in autoimmune eye issues.  I am so thankful my eyes are better - but I faithfully followed the doctor's orders like I have throughout this battle, until they turn stupid on me LOL.  JSNM-
 
Glad the eyes are better.  Very important improvement.

Thanks JSNM and Jan,

JSNM, Glad you are still doing well and your eyes are improving, that is one thing that worried me also Smile.
 
Maz,  I was thinking about you yesterday with your new puppy, and guess what! We actually bought a pup as well, not actually a puppy but a 6 month old German Shepherd!
We have been thinking about buying a dog for a couple of years but kept putting it off, anyway after finding out we would have to wait till next year for a puppy as no litters in summer (too hot) we accidently found a breeder that wanted to sell a six month old, so we grabbed her. We picked her up yesterday and she (Tabu) is a such a placid gorgeous girl, I love her already.
So I miss out on all that training, getting up at night, oh well, you can let me know what I am missing out on, won't you LOL.
 
Anyway I hope you are getting enough sleep and you new puppy Clyde is doing ok.
 
Have the best Christmas everyone in case I don't get back before and keep well !
 
.....................Annie
Annie ,
 
A new puppy --- great, what did you call her ???
 
The thing with breeders is that when they have a litter there might be one or two puppies that they would like to keep for showing or breeding, but they won't know that for around 4-5 mths of age - because the shape, size & temperament of the puppy is still changing, so they keep them in the hopes - but when it becomes apparent that the dog may grow to be too big or too small or their ears don't sit just so - they don't want them because they won't win a championship so the sell them......
 
So really - you have probably got what was the best of that litter !!!
 
Clyde had woken me up twice during the night to do wee's, he wakes me up so I can take him outside, he is too little to trip the sensor lights and is still a little afraid of the dark by himself - but during the day runs outside by himself to do his toilet thing ........ so I haven't had any problems on the slate or carpet ...(yet!)
 
He is very placid and really cheeky --- I believe Gypsy (my other dog) is glad she can run faster than him....lol
 
So far so good
You have a great Xmas and will talk to you again in 2009 if I don't hear from you next week.
 
Maz
 
Edited by me : ps, TABU (just saw it) ---what a lovely name for her.
 
Maz-aust2008-12-11 16:30:19After trying and having to stop Methotrexate and Arava, I started Minocin in April of 2007. (I posted somewhere at the start of this thread). I modified my diet, vitamins, probiotics, etc. There was much improvement, but not enough so I added Sulfadine. I've been on both for four months and this week I've felt better  than I have in 2 and half years. My shoe width shrunk a size as the inflammation in my feet went down).So I guess for me the minocin alone just wasn't quite cutting it. Panda, that's so great that you're feeling better. Minocycline can actually take up to 2 years to become fully effective, so in time you might find it possible to drop the sulfazine, as well.

I was wondering what kind of dietary changes you made?

Thanks a lot for posting. It's always so wonderful to hear of people's progress on AP.





eidted for spellingGimpy-a-gogo2008-12-12 12:18:38Panda - that's great that you are finding the combo that works for you.  I am convinced my changing from synthroid to armour thyroid has turned my downward spiral into a steadily rising curve of improving, dramatically.  We all have to push to work at getting a combo that works for you as RA is a cunning, baffling and powerful foe. 
Hi Maz
 
 My pup is gorgeous and I would agree with everything you have said, the breeder said she didn't have the temperament to be a good show dog, she is not out there enough but that suits us down to the ground, but also you have put my mind at rest  because I thought maybe there could have been another reason for her selling her.
 
Your puppy sounds so cute , ain't they funny when they won't go outside in the dark.
 
Maz you have a great Chrissy too, my kids have just arrived for a barby, so will have to cut this reply short. Talk soon.........Annie
 
Rockin Annie2008-12-13 16:04:37[QUOTE=panda]After trying and having to stop Methotrexate and Arava, I started Minocin in April of 2007. (I posted somewhere at the start of this thread). I modified my diet, vitamins, probiotics, etc. There was much improvement, but not enough so I added Sulfadine. I've been on both for four months and this week I've felt better  than I have in 2 and half years. My shoe width shrunk a size as the inflammation in my feet went down).So I guess for me the minocin alone just wasn't quite cutting it. [/QUOTE]
 
Hi Panda,
 
Thats great you are having less inflammation, have you thought about taking MSM as supplement for inflammation, I was advised to take it and haven't looked back, it also is a detox as well, so it will get rid of built up toxins in your body.
 
......................Annie
Cell suicide?  See last paragraph, in bold. 
 
 
BACKGROUND: Stroke is the number one cause of disability among adults in the United States, according to the National Stroke Association, and the potential effects of these dangerous blood clots don’t end there. Strokes leave some with cognitive problems, difficulty speaking and even the inability to speak. Experts say many strokes are silent and lead to dementia or other problems.

SYMPTOMS: In stroke treatment, time is everything. In fact, it's so important, stroke experts like to use the phase, "time is brain." Because every minute counts, it's important to recognize the symptoms of a stroke. The American Heart Association says to look out for the following: sudden trouble seeing in one or both eyes; sudden confusion, trouble speaking or understanding; sudden numbness or weakness of the face, arm or leg, especially on one side of the body; trouble walking; dizziness; loss of balance or coordination; or a sudden, severe headache with no known cause. Not all warning signs take place during every stroke.

TREATMENT: Ischemic strokes, or strokes caused by a blood clot in the brain, account for about 80 percent of strokes. Treatments for its less common relative, hemorrhagic stroke, are limited. Even for ischemic stroke, the list of options for treatment is far too short. Medications are the first line of attack against stroke damage. At this time, the only FDA-approved clot-busting drug is tissue plasminogen activator (tPA). tPA has enzymes naturally found in the body that convert plasminogen into another enzyme to dissolve blood clots. Research shows the drugs increase a stroke patient's chances of recovery with little or no disability by 33 percent. In order to work, tPA has to be administered within three hours of stroke symptom onset. The most common complication of the drug is brain hemorrhage. Because of this dangerous potential complication and the small window of time tPA can work, only two percent of Americans who suffer acute strokes receive the medication. Other lines of attack against stroke include blood-thinning medications like aspirin. Although they play more of a preventive role, these medications can be administered during or immediately after a stroke to prevent further clot formation. In some cases, stroke patients are operated on after the incident. The MERCI Retriever, FDA approved in 2004, is a device used by interventional radiologists to remove blood clots in the brain. In cerebral angioplasty, physicians place balloons, stents and/or coils in the brain's blood vessels to prevent clots.

NEW OPTIONS: Numerous stroke treatments used in combination with tPA or alone are under investigation for safety and efficacy. Some physicians are looking at an approach that combines tPA with additional treatment through a catheter at the site of the brain clot. Others are studying hypothermia, a neuroprotective technique. This involves cooling down the body to slow down brain damage after a stroke. The more common method of induced hypothermia takes place by using cooling blankets, while a less traditional approach involves inserting cold saline into the body intravenously.

A new method of stroke treatment that is showing promise uses the tetracycline antibiotic called minocycline (Minocin). This more than 30-year-old antibiotic has been shown in previous research to protect nerve cells and prolong the survival of animals with ALS, stroke, trauma, Huntington's disease and Parkinson's disease, according to the ALS Association. Researchers are administering minocycline very shortly after stroke in slightly higher doses and following the progress of patients who receive the treatment. Investigators hope the drug will prove as effective in humans as it has been in rats by blocking the dangerous side effect of tPA, blocking brain inflammation and preventing apoptosis, or cell suicide.

FOR MORE INFORMATION, PLEASE CONTACT:

David Hess, MD

Medical College of Georgia

(706) 721-1691

http://www.mcg.edu
JSNM-
 
Interesting article!!!!  Holds promise.
Twelve weeks now on AP, doxycycline 50mg. M and Th.  Some mild herxing and improvement in my right hand, wrist, elbow.  Glad about that.  Taking it slowly which feelsl most comfortable for me.  More later.Thanks for sharing your good news!  I hope you continue to notice improvement! Hi everyone,
 
I actually have a question - has anyone had a situation where they definitely feel much much worse a few weeks after a particular medication is introduced (other than herxing). 
 
I don't think I am herxing (maybe I am, I just don't know it! because I always know the difference between my flares & a herx and this doesn't feel like either of them) but I ache and am really tired and the backs of my hands & fingers are generally sore every minute of the day.  This has been going on for a week now and prior to that I was doing so much better, the herxes were abating and I felt like a million dollars.  
 
Must admit this is throwing me for 6.... especially as I am a week away from going on holiday!!
Maz-aust2008-12-16 17:12:24So if this is the case, do you think Minocin will reduce the risk of having a stroke?Maz, I can't say it's related but for the last 3 months or so I've felt way worse the first few days after I take MTX. I have also reduced my MTX a further 2.5mg to 5mg. I'll feel pretty good and about an hour after I take the MTX I'll start having pains that will last from 1 to 3 days. This is a new drug response for me, that I have no explaination for. My TCMP thinks it's because I don't need the MTX anymore and when my body recognises it it has a "pain memeory" of why I started tasking it in the first place. That's probably not much help to your case, though.

.

justsaynoemore2009-06-17 15:17:35

Thanks Gimp,

Hadn't thought about that - pain memory, as I recall from an earlier life...lol there is such a thing, just as there is referred pain .......

I was doing really really well and now feel like sh..t --- must admit it has really thrown me I wasn't expecting to take a backward step at this point in time (don't know why not, I just didn't) This is nothing like the flares of old or the herxes of new - this is definitely something different.  As I said I was just wondering if anyone else out there has had the same thing...

Anyway - have now ordered MSM and will take that with me whilst I am away, I will try anything right now to ease the aches -- I don't fancy going away and not having a stop gap with me --- even though I haven't had MSM before that in itself might be a good thing, don't know - but prepared to spend the dollars to find out ....
 
Thanks anyway
Maz
 

[QUOTE=Gimpy-a-gogo]Maz, I can't say it's related but for the last 3 months or so I've felt way worse the first few days after I take MTX. I have also reduced my MTX a further 2.5mg to 5mg. I'll feel pretty good and about an hour after I take the MTX I'll start having pains that will last from 1 to 3 days. This is a new drug response for me, that I have no explaination for. My TCMP thinks it's because I don't need the MTX anymore and when my body recognises it it has a "pain memeory" of why I started tasking it in the first place. That's probably not much help to your case, though.[/QUOTE]

Rockin Annie -  fab that you are doing well.  Just keep putting one foot in front of the other. 
 
Jan - woohoo!  I'm so excited for you.  Slow and steady wins the race.
 
Panda - I'm slammed with Santa stuff but would like to know your dosing schedule, the amount of probiotics you take daily and when you started.  I'd look back but am soooo behind.  Also, are you using the Whole Lemon/Olive Oil drink to help you process the toxins out of your body?
 
Hugs,
 
Pip
PS - Saw my opthamologist this past week.  My vision is apparently perfect with no inflammation in my eyes at all.  It's kind of funny because I kept thinking it was blurry but he says 'nope' and that I'm the same like I've always been - and get this - apparently I have a lazy eye and cosmetically, I look normal, but one eye never hooked up to my brain correctly and the blur is because 'as we age' (and I hate that phrase) far sighted people have a problem when the lens in the eye starts to slow down in making the correction in looking at something up close from something further away.  Apparently, I've never used one eye my entire life.  I really need to get all my records.  I have no idea who my doc was when I was a kid.  He's probably dead now.
Hi Everyone,
 
I hope you all have a very Merry Christmas and a very safe New Year, keep well and have fun.
 
....................Annie
Today makes 2 years, 4 months, on AP.
 
This past 3 weeks have been a blur.  I've run like I haven't run (sometimes literally) in ...em...decades.  I've set up two households for Christmas as well as cleaned them.  I cleaned two others, one of which included setting up their Christmas decoration, getting on the floor and doing their village, getting on ladders and setting up outdoor lights.  That's not including the being on my hands and knees scrubbing their floors either. 
 
Family wise I'm cooking, baking, shopping and traipsing thru woods looking for the perfect Christmas tree.  These ice storms should have caused flares but didn't and even the stress of spinning out in the car and getting caught in a snow drift that required digging out because there was no time to wait for the tow truck was nothing more than an inconvenience. 
 
My New Years Resolution?  Get this weight off.  Yes, it's the same one I make every year but I intend to do something about it this time.  I think that may be the final piece of the puzzle in regards to my RF and if I can do that, then I'm in (permanent) remission.
 
Hugs and Merry Christmas!
 
Pip
Pip-
 
Wow.  I'm impressed with your accomplishments!!!   Cleaning, baking, etc., surviving in Michigan!!!
 
Good luck with the new year's resolution, weight loss. Hope it happens for you.
Thanks Jan -
 
Yeah, it's been a joy this Christmas break.  Truly, I'm so exhausted I just want to get back to LA and only have one family to manage, not 3. 
 
I forgot to mention that on this trip back I have to see various docs or I'll get dropped off their rotation and then I have to wait for them to have space in their schedules when we move back (over my dead body).  So, I saw my PCP on this Holiday to make sure he remembered me.  I ended up being late because we had an ice storm (truly fun to de-ice your car at 7:30 in the AM) and I wasn't sure he was going to see me but he seemed kind of eagar even tho I was almost 1/2 hour late after having to drive 10 miles an hour into town.  Anyway, he gets to the question on 'do you have pain' and I say 'no' and he doesn't believe me.  He keeps coming back to it.  He asks about my morning stiffness and I tell him maybe a minute in the morning and he starts checking out my hands.  My hands look awful.  Seriously, if you have ever scrubbed floors with buckets of hot water in the middle of sub-zero temperatures - then you know why my hands look so bad.  They are pretty red and chapped even tho I've been using Aloe Vera gel on them.  So, he starts rubbing my red knuckles and I'm like, 'sorry, it's the scrubbing' and it's not until I leave and am thinking about this visit that I figure out he's trying to ascertain if I have joint pain.  LOL  I really want to go back in and tell him, go ahead, squeeze my joints.
 
I think I'm going to send him a letter when I get back to LA telling him why I'm not doing the Vitamin D (he's into it and I gave him some info but he must have forgot) and mentioning to him that I didn't have any pain the when I saw him a year earlier so why was he so stunned.  Nicely tho...just hoping to make him think.  He seemed really interested in my AP doc and the adding in of Zith and my strep titres etc. 
 
This guy was the 10th doc I saw here and I got him when we'd already had a truck ready to pick up so we could move.   I almost blew this guy off because I was so mad at the Great U but hubby said 'might as well interview him' and we both went to the first visit and he laughed when I slipped and said I was 'interviewing him'.  Hubby and I decided he was a keeper - a doc who could laugh at himself - who'd have thunk it - especially at the Great U.
 
Hugs,
 
Pip
Reread The New Arthritis Breakthrough by Henry Scammell.  Alot of information.The New Arthritis Breakthrough includes The Road Back by Dr. Thomas Brown.  Well, since its only right to post the good and the bad - I had my first real RA flare on Sunday.  I haven't been doing well since that stupid box fell off the shelf and hit me in the face, and I thought it had culminated in this ongoing mouth inflammation.  Well, I got up Sunday and looked down and the inner pad of my right ring finger near the palm was swollen up like a blister.  I look at my left hand and it was the same way, same place, only smaller and not as swollen.  I started crying so hard, my poor hubby.
 
Anyway, I ended up taking my temp and was running a 99.2 fever, which is so uncommon for me as I usually run subnormal in the 97s.  When I saw that, I realized I had finally hit the big time.  This is the same digit that about four years ago suddenly blew up like a sausage while playing cards and 20 minutes later it was gone.  I have pondered on that alot since then, no pain, but my partner in cards and the other couple were greatly impressed.  This was during my diagnosis of hypo/crazy/drug seeking whacko trying to get some medical help years.
 
But, I had taken Friday off as I was exhausted and knew I needed to rest, so was trying to enjoy the last of four days off from what's turned into the most demanding job I have ever held in my life, and I love it, and its been almost a year since I started, and I was starting to get smug because in June will be 3 years since dx and I supposedly would be crippled up and disabled by that time, so I thought I was going to make it. 
 
So, I forgot to take my minocin on Friday, took it Saturday, did my lemon drink, but all four days missed all my vitamins, but I did finally get through the entire workout on the AF Take Control arthritis exercise video.  Plus I packed on 15 lbs after a sugar orgy over the holidays, starting with a four foot, three level cascading chocolate fountain at my job's Christmas party.
 
I did it to myself - was injured, stress from the job, missed a dosing period, didn't take my vitamins, sugared up - and visibly flared, for the first time since diagnosis 6/06.  The finger is slowly subsiding, along finally with the mouth inflammation, so I guess I have been in a flare since getting hit with the box maybe a good month or so ago. 
 
That's my story, and I am sticking to it :) Cathy
well if you have to pack on a few pounds a chocolate fountain is the way to do it...
 
feel better soon
I am so sorry, Cathy....   I hope this is gone as quickly as it came on.I have a question......  regarding AP.. I've read the books mentioned above by Jan Lucinda... and multitudes of other information on the net ....
 
My question is:  IF there is bacterial infection causing this problem.... why don't they just inject the joints and areas of infection/reaction in addition to the "protocol" and get to it quicker..  but below it says that inflammation must be reduced to use this form of delivery..

http://rheumatic.org/faq.htm  INJECTING THE JOINT Thomas McPherson Brown, M.D. et al in Antimycoplasma Approach to the Mechanism and the Control of Rheumatoid Disease from Inflammatory Diseases and Copper, The Humana Press 1982 states: 'Intraarticular injections of clindamycin have been very effective when the reactive state of the joint is so intense that penetrance (of the antibiotic) is not achieved by the oral or IV route. The inflammation must be reduced in most instances for maximum clindamycin effect. The usual treatment plan for large joints, clindamycin 300 mg, plus dexamethasone 4 mg. A reduced amount of the same combination of these medications is used for smaller joints.'

Babs -
 
I'm not sure but I think Dr. Brown was talking about herxing here.  Some people do not react well to Mino - they are the group that tend to fall to the floor when starting AP.  For them, it's been shown that to drop the standard dose, a lot, like to 50 mgs a day MWF, will stop the joint from being so 'reactive' and in that case you wouldn't need to have the injections.  I kind of think of inflammation as a 'force field'.  Enough Mino hits and its going to collapse like on Star Trek.  So you need to reduce the inflammation as much as possible in the beginning so the Mino reaches its target - the myco - and this is another reason that many APer's push the diet changes angle.  Cut out what is causing you subclinincal inflammation and the Mino can work faster. 
 
Another reason they don't do this a lot is many of the new school docs are doing what they think will work better - like adding Flagyl etc.  I don't think Dr. Brown used Flagyl.  Some are trying to take his work further. 
 
Then there is the fact that its not just our joints - RA is systemic and because of this there are myco's housed in a lot of our internal organs and we need to take out the inflammation everywhere for them to be reached too.  A localized shot would only hit the 'angry' ones - the dormant ones are sitting back waiting for their opportunity. 
 
Cathy -
 
I'm sorry to hear about your flare.  Please don't cry.  I cried once when I thought this wasn't working and tweaked a few things and it was fine again.  On New Years Day I flared for about 36 hours - and I didn't cry - because I knew what I had done.  I'd stopped taking my meds when I was home.  Yes, I'm a stupid APer.  (Nobody tell Lin - shhhh!).  That and the sugar overload combined brought me to my knees.  The good news - as if a flare could ever have good news - is that combined, start to finish, it was only 36 hours and I was able to marathon shop all day yesterday.  And that was after being at Disneyland (where it was frighteningly cold and it snowed on Main Street) and walking miles the day before.  But I can still 'feel' this - its there and waiting to explode.  I felt it in MI and was hoping I could get back to LA and a regular schedule again - thought I'd made it too when we touched down.  Ahhh, but not fast enough.  Sigh.  So don't cry, please.  It's just a minor set back and maybe we should set up a 'diet club'.  LOL
 
Hugs,
 
Pip
If you've read the book and a multitude of other information then you know the probability is the mycoploasma travel by going into the white blood cells and also have the ability to change states so it's not as simple as microbe vs. antimicrobe. Since the infection in intracellular I don't think it makes much difference where the antibiotics go in.


http://www.med.umich.edu/opm/newspage/2007/microbes.htmYou know, every time I see that picture with those little blue baddies, I think to myself....PACMAN!
 
Pip
Getting back to the whole lemon/olive oil drink.  Was busy and didn't do it for awhile.

.

justsaynoemore2009-06-17 15:19:33[QUOTE=justsaynoemore]

In RA one of the most debilitating symptoms is the stiffness and pain in the joints during the morning hours after waking. These symptoms are caused by proinflammatory cytokines, such as IL-6 which peaked during the night and are responsible for the resulting debilitating stiffness and pain.

[/QUOTE]
 
Proinflammatory cytokines peek during the night?  Yet I was always worse in the evening.  Here they mention cirrcadian rythyms - good catch, Cathy.  See, it's all linkied.
 
Pip
Pip & JSNM-
 
Do you want to take ANY prednisone, even low dose?

I don't - but if I have to (or God Forbid, AP fails) then it may be an option.  However, what I found interesting was the cirrcadian rhythms and the anti-inflammartory cytokines.  Cathy knows I've been working on my sleep patterns and trying to repair that first as that's when our bodies do it's healing best.  I've made great headway - even so much as not needing Melatonin 2 nights in a row to sleep over Christmas - so know that part of the puzzle is being fixed.  For me, sometimes whats important in a study isn't what they found as much as what it says about how our bodies work.  There is a ton of research out there lately about sleep patterns, melatonin levels, cirrcadian rhythms and inflammation.  That gets my attention.

Hugs,

Pip

.

justsaynoemore2009-06-17 15:20:11Oh, wanted to add that the five months of Predisone I was on did nothing as far as I could tell, well except give me osteoporosis and a cataract.  The pain I had wasn't touched by it, and the pain finally started waning within a month of starting antibiotical protocol minocin.  I also have polymysititis, so I don't know why the predisone didn't touch the muscle pain, unless its not formulated for muscle pain. 
 
But when I fell down the stairs as I was then on lexapro (the doctor I snuck off to 45 miles away in desparation as I was told he was so good said I need a rheumy ASAP with my symptoms, but rheumies won't see a patient without be on an antidepressant first Confused - if anyone knows this is true, I would love to know), plus he prescribed klonipin which I am still on and it really has helped, plus the newly-added chemo and predisone, and I was in la-la land in a few weeks on this combo. 
 
Went sailing through the air and of course landed on my tailbone/low back four steps down and was then only six months away at that point from my low back surgery for my DDD which caused severe, full blown leg sciatica from a leaking tear in a disc.  I was frightened I had broken my back, but since I have had a recent LB MRI which shows considerable deterioration, it might have had some impact, literally.
 
During this attempt to fly, I broke my first toe on my left foot when I "Ved" my legs (they flew upward) and when I hit the step, my left foot came up under the stair railing and shattered the joint - the podiatrist wants to saw my bones in two places and put in pins.  I deferred and taped it up and its holding up pretty well and its been over 2.5 years now.
 
My point is I felt no pain from the broken, smashed joint in the toe and if I had any smashed DDD low back pain, I felt nothing, so I know the predisone was killing certain types of pain in me because a few months after being taken off of it I managed to break the little and third toe on the same foot by running a chair leg in-between them stumbling around in the dark (an antique chair with the ornamental, but small-sized chair legs). 
 
Now those two fractures hurt like a you know what, so I realized the destroyed joint and low back hit a few months earlier never hurt because the predisone was in my system and it never bothered me.  The two other toes getting broken without the pred was very bad pain, and simple fractures, not complete destruction of a smal joint in three pieces.  (And the fired, ex-rheumy who has left the State for NY were he is not licensed (hmmmm,) never copped a clue to check me for osteoporosis when I snapped three toes in one foot within a few months period of time under his care, after taking and just after weaking off Predisone).
 
My point is, I will take pred if I do need it for the right conditions (broken bones for one) that work for me.  It never touched my RA/polymyositis symptoms.  Pred is just a very bad drug for me so I will be very hesitant to take it ever again. 
justsaynoemore2009-01-11 00:20:32

.

justsaynoemore2009-06-17 15:25:26

.

justsaynoemore2009-06-17 15:25:55

.

justsaynoemore2009-06-17 15:26:20Oddly, this little tidbit was on MSN today. It's a "human interest" story but this paragraph caught my eye:

"According to the National Arthritis Foundation, doctors can easily misconstrue the symptoms of rheumatoid arthritis as signs of an infection because the symptoms - aches and pains, fever, rash, swollen glands - mimic those of an infection."
http://www.msnbc.msn.com/id/28602169/

I wonder if anyone ever considered that maybe the symptoms are "like" an infection, because it is a form of infection, just one they don't understand?

And the beat goes on.....




JSNM-
 
I've read THe Infection Connection by Katherine Poehlmann.  I've mentioned it before and I found it very helpful.
Cathy -
 
That RA Cluster thing was really intersting.  Did you see the cite for number 9?
 
Hugs,
 
Pip

.

justsaynoemore2009-06-17 15:33:48Done with this placeLibby22009-02-10 01:17:14Some folks use antibiotics ("antibiotic protocol" or "AP" for short) to treat RA. Done with this placeLibby22009-02-10 01:15:24[QUOTE=Jan Lucinda]Getting back to the whole lemon/olive oil drink.  Was busy and didn't do it for awhile.[/QUOTE]
 
did that have detrimental affects on you, Jan?
Yes, some edema returned.

.

justsaynoemore2009-06-17 15:36:58I haven't updated for quite a while so here's where I'm at:

Minocin 100mg twice a day on Monday, Wednesday, and Friday
Plaquenil 400mg a day
Fish Oil, 10mg a day
Probiotics, lots daily, in food and supplement form

I also use other supplements sporadically (I must get more regular) mainly, oil of oregano and grapefruit seed extract.

So usually I wait until I feel great for a few weeks before I would decrease my MTX by 2.5mg, but when I was at 7.5 I decided just to decrease to 5mg, anyway, and just see how that went. I did go through the usual adjustment where it felt like my RA was acting up a bit. After about 6 weeks at 5mg my left index finger flared up for 10 days, and after that my right hip acted up and still has bad days, but nothing that stops me from doing anything I could do pre-RA, more a small, nagging discomfort. My feet have always been an RA "hot spot" and they still have off and on issues as well.

I went and saw my RD after being on 5mg MTX for 8 weeks, and she said most people (not all) do not respond to such a small amount and I may as well discontinue it, but if I flared up to go back on it immediately. I asked her what constitutes a flare, since I always have some minor inflammation or some RA activity (except this summer when I had none at all). She said if it gets like my feet did preDX, or my knee preRX, but since I was still on Minocin and Plaquenil that probably won't happen (knock on wood).

I feel pretty good so far, but I could feel a lot better. My sed rate fluctuates between 2 and 4, but I know I do have a bit of inflammation because I can feel it. RD said sed rate isn't that good of an indicator, and probably wouldn't go up unless my inflammation gets really bad, and I should just go by how I feel.

I still feel way better than I did when I was just on 20mg MTX and 400mg Plaquenil. I hope I continue to improve. AP is a very slow uphill battle, especially when you approach it the way I have.

I am going to renew my commitment to the lemon/olive oil drink, and I'm still serioulsy considering a gluten free diet. Because of where I live I don't think that would be too hard to follow.

I also had a weird blood pressure thing which may be related that I posted on a different thead, but for continuity I will quote the post here:

[QUOTE=Gimpy-a-gogo] I was interested to see lack of folic acid can cause high blood pressure, since MTX depletes folic acid.

I was planning on including this in my AP update, but about 3 months ago I went to my Dr and an eager intern took my blood pressure (which had always been 120 over 80) and it had gone way up! Like, 135 over 90! My Dr told me to go every couple of days to the drug store and take my blood pressure with the machine, and stop putting salt on my food. and then report back in 2 weeks. I was bummed out about the salt thing because I eat a lot of food preserved with salt like probiotic sauerkraut and prosciutto and so on.

So I was taking my blood pressure regularly and it seemed kind of sporadic. Like, It would be 140 over 95 and then 3 minutes later it would be 125 over 85. Also, I was so stressed out by the hypertension thing I could just feel my blood pressure rising whenever I got near the machine thing.

Anyway, this summer I had felt so good I stopped talking fish oil, and I noticed my blood was thick and sticky when I would go for my blood tests, so I started talking that again and now my blood is thin again.

I wore a 24 hour blood pressure monitor about 2 weeks ago, and the results came back fine----maybe a little high during the day, and low at night, but overall in a good range.

So, anyway, I have no idea what that was all about, but I'm glad it's under control now. There are many possibilities. Hypertension is a form of herxing, for one thing. Or my blood could be sticky. It could be from Dexedrine but that seems unlikey since I don't take it that often. Or it could be inflammation of the blood vessels caused by RA. Or dystolic disfunction caused by RA. Because of your post, Pip, I know know it could be caused by folic acid depravation caused by taking MTX. I mean, no one really knows what causes high blood pressure to begin with, so these are all guesses.

Thanks for posting this, Pip. In addition to my other steps I think I will now eat more avocados and bananas to increase my potassium intake.

I don't want to have to take statins or give up salt.[/QUOTE]

Are my eyes deceiving me?  GoGo - you dumped the MTX!  WoooHooo!
 
You go girl! 
 
Hugs,
 
Pip
PS - I'm going to make that same committment to the WL/OO drink.  And I'm going to get those delayed onset allergy tests. 
Pip, there didn't seem much point at 5mg.

I'm also making home-made kefir now, and having a kefir berry smoothie every day, so in between that and the WL/OO it's a lot of time at the blender and cleaning seives and what not. I guess I must do what I have to do to get the liquid nutrients I need.

BTW, I think home made kefir is by far the best source of probiotics.

.

justsaynoemore2009-06-17 15:37:29Libby-
 
THe book Living with Rheumatoid Arthritis by Tammi Schlotzhauer. M.D. also gives a good description of Antibiotic Protocol.  It is suggested on the AI site.

.

justsaynoemore2009-06-17 15:38:05
.
justsaynoemore2009-06-17 15:38:41Well, I know two people who had CA-MRSA in the last month and it's not pretty. I am always pretty conscientious of hand washing and other not-getting-sick measures but I do wish they would quarantine themselves. I knew a guy that got MRSA after surgery and almost died from it. He had to stay home for over 6 months and his whole abdomen is horribly scarred.Have done the Whole Lemon/Olive Oil drink and doing better again.

.

justsaynoemore2009-06-17 15:39:05

A special 'hats off' and thanks to Jan.  When you posted about the Edema I looked it up, remembered how my left leg was the one that took forever to have the RA swelling go down, and thought, 'what if my swelling in my stomach was 'flare related' instead of gastro?"  So what if the flare was over if my belly was distended from crappy food?  The scale said I didn't gain as much weight as I thought I'd did.  Even tho it felt like it.  Sooooo, did the WL/OO drink about 3 times and ALL the remnents of the 36 hours in HELL was over.

I LOVE AP!
 
Pip
Hey Pip!
 
Just got back from our first trip to the States in a year.  Had an appointment with my AP doctor.  I've been getting sore in my wrists and arms and thought that maybe my RA numbers were up.
 
Blood test showed all my RA markers normal (2nd year in a row).  Thorough doctor that he is, he also ran a vitamin D test and I was shocked to find out it was dangerously low, a 6. It should be in to 50-70 range.  So he immediately put me on some prescription vitamin D and I stocked up on over the counter before heading back to Korea.
 
Who would have thought?  I had it tested a couple years ago and it was well within the normal range.
 
Minocin is still keeping the RA beast at bay.  I forget I have it most of the time.  Hope all is well with you.
 
We pigged out on American food while back in the States. I can't tell you how many times we ate at Chipotle's.  It's almost impossible to find Mexican food here in Korea.
 
Also was nice to have our credit card numbers stolen the day after Christmas. Thank goodness the credit card company called. We also had a package stolen off of our porch.  It was a nice welcome home.  Oh well!
 
Becky
Hi Becky!
 
Sorry to hear of your problems.  We're pretty bad economy wise in the US now.  While that's not an excuse, it's an explanation.  Sigh.
 
Good to hear you're still doing well!  Hugs and let us know how the D thing turns out.  I'm not into it...but...I'm not a 6 either.
 
Pip

.

justsaynoemore2009-06-17 15:39:31That is not the best homecoming, to be sure.

Let us know how the D works out for you. I am still asking "to D or not to D" and having no clarity on the issue. Do you get a lot of sun. BTW? Why doesw your doc think your D is so low?My doctor said it is not uncommon to find in RA patients so he screens for it.  Also, it mimics RA with the achiness.  It was just one of the many blood tests I have regularly or should I say every time I'm back in the States.
 
There is sun here but it's pretty polluted.  I don't think Asia thinks much about going green except when it comes to recycling. They are very diligent about that.  The air quality is pretty poor so many days are hazy.
 
I don't sit out in the sun since here it is really taboo to do so. Koreans want their skin lighter not tanner. I would feel like an idiot doing it here.
 
My doctor was really shocked at just how low it was but it did answer a lot of questions about how I had been feeling.  They say it's not a bad idea to take a 1000 I.U. vitamin D pill per day.  I'm only a script for I think it is 25,000  I.U. a day.  Soon I'll be going done to 2000 I.U. per day.
 
I'm also ready feeling better. Now if I could just shake the jetlag!!
 
Becky

.

justsaynoemore2009-06-17 15:41:04You know what kills me, we talk about Pharma, but its biotech that is really scary.  They can avoid generics that way.
 
Pip
Well, after maybe six weeks, the gums and roof of my mouth inflammation has finally stopped.  This is the worst one I have ever had - but I woke up today feeling great, and still feel great.
 
I blew through my Ultram RX and had to get a refill order from my wonderful family practitioner.  Last visit (Oct) I asked her because I was healing up from my DDD flare up that her Urgent Care colleague had prescribed Vicodin for, if she would consider prescribing me one Vicodin a week for Friday night (tonight!), as I had noticed I could sleep in and not have to get up because of pain while on them.  She asked if I would use them to go to sleep with, and I said no, that isn't a problem.  So she wrote the script, and when I filled it, it was for twice as many pills as I needed until I saw her again (no refills).  It's been great.  I take one Friday night and one Saturday night, and it gives me enough pain relief to recharge for another 40 hour work week.
 
Well, via faxing, she knows I have made appointments with a rheumatologist and and an endo to take off some of the pressure (she never takes on complicated cases, but she got so mad at the small part she personally witnessed in a short period of time after I started seeing her of my normal bad medicine I receive, so she took over all my care).  When my hubbie brought home the Ultram script from Costco today, there was also a refill bottle of the Vicodin.  I was shocked, as I hadn't asked for one as I have enough for Fri/Sat til the end of this month for my three-month checkup. 
 
She must have realized the mouth pain was so bad, that's why I blew through my Ultram and decided to fill the Vicodin.  I really really really love this woman, a fantastic medical doctor.  My team of trusted medical physicians is slowly growing. 
justsaynoemore2009-01-16 19:17:08glad you found someone compassionate, Cathy...   The swollen mouth roof... what caused that?  sounds horrible...   Good luck w/ the new docs!!
 
Pip!  I hope they don't generic biologics... it's a difficult formula.. and being a "taker" I'd want it to be as carefully prepared as possible....  
Babs, about 6 months ago I saw something somewhere (didn't save, sorry) that some company had come up with a bio-equivalent Enbrel (I think) that they said they could make for a fraction of the cost.  It seemed like a good option because we've seen so many on this board who can't afford their meds. 
 
That being said - I'm with you in that I want my Brand Mino because of absorbtion differences and the timed release nature.  The insurance companies notice after 6 months and boot us, which is why many of us become outlaws to get our meds - if we didn't have absorption problems we wouldn't be sick, would we?  Anyway, when I was a regular on the Roadback, it seemed that everybody knew who made a good generic and who made junk.  Too many posts showed the generic didn't work but when they switched to the Brand, then it did.
 
Hugs,
 
Pip
If generic Enbrel was made, maybe some people in 3rd world countries would have access to it.


Um....why are we talking about this on the AP thread?

Because JSNM posted about it at the top of this page.  I said botech is the scary thing.  People talk trash about Pharma, but nobody realized that biotech is quickly outpacing Pharma is sales.

Pip

.

justsaynoemore2009-06-17 15:41:55[QUOTE=justsaynoemore].

With rheumatoid arthritis, an autoimmune disorder, the body can't distinguish between its own tissue and an infectious agent, and so responds by attacking its own tissue in the same manner it would an infectious agent.  (Does anybody have a study that proves this theory?)

[/QUOTE]
 
It seems like this theory is based on never finding an infection, but it also seems like you have to know what to test for in order to find it.

.

justsaynoemore2009-06-17 15:42:19I think with RA, your immune-system is presumed guilty and has no right to a trial. 

.

justsaynoemore2009-06-17 15:42:51When I was DXed my RD presented to me the idea that the immune system attacking your own tissue is a theory, and I don't think that's changed in the past 3 years.
Hello Pip and Gimpy and all APer's
I have been following this thread for quite some time and decided to give the Antibiotic Protocol a try.  I have read the book and confronted my Rheumy DR last week to give this a try. He agreed and gave me a prescription, for enough Minocycline 200mg a day till I see him again in May. He also mentioned to up my Omega 3 to 3000mg and to take Probiotics and/or eat yogurt, to prevent Yeast infections.
The information that has been posted has been very helpful.  The reason I decided to try this is because I was tired of going on meds that stop working over time and was scared of the side effects that I've experience on the MTX etc.  The next meds that he was going to be put on would have been Enbrel, and I had read enough about it that scared me.
 He would like me to continue on the Arava and to drop the sulfasalazine and to continue on Celebrex for inflamation.  I would like to be solely on the Minocine but will continue with the Arava until I see a change.  Not sure when to drop the Arava?
I have had RA. since 2004 and would have started AP if I had known about it then.
I'm hoping that in time I will reach remission with this med and I do know that I'm in for a battle for my life.  I'm tired of not being able to do the things I use to do.
Thankyou for posting all your info about this and I will continue to view your info since this is my first week on this medication. Smile
HI Dobine, and welcome. And good luck with AP---it can be a bit of a slow process.

I wanted to advise it's a good idea to eat yoghurt AND take OTC probiotics, as you can't overdose on them but you can sure underdose, especially if you are on a daily antibiotic.

Hi Dobine -

It's the old saying - "it's never too late to start" - so glad you have so obviously become proactive in your treatment and very pleased you have the full support of your medical team!!

Probiotics, probiotics, probiotics -- you can't have enough !!
 
Will look forward to hearing your progress.
 
Maz  
Hi everyone - hope you had a great Xmas & New Year,
 
I only returned to work last week from holidays up on the block - lots of sunshine, skiing, fishing & plenty of good stuff to eat --
 
As you know I have been having some painful herxing since we added doxy to my abx mix (mid Nov) -- so I decided to buy some MSM to see if I could ease the pain when it hit - I started the MSM on 25th Dec and within 6 days was relatively pain free - I had no idea if it would help as I don't have RA but PRA and was only concerned about the intensity of the herxes.  Am very pleased to report, that for me, it seems to have worked. 
 
However, have a left of centre question ---
Has anyone heard of AP causing a dramatic boost in hormone levels (obviously female hormones..lol)   ?????  
 
 
 
hey Maz, I have never heard of that but I am curious to know more about MSM. I know a lot of people on AP use it but I haven't really looked into it yet. Please keep us posted!

.

justsaynoemore2009-06-17 15:43:25Sea cucumber --- well, well, strange request - however am pleased to report that you can get sea cucumber any time here from Asian grocers & markets - all you need is a ticket to Oz....lol 
 
Didn't think MSM would help me as I definately don't have RA - but am really pleased that I am still basically pain free as of today using MSM, and no I don't believe that the herxing is over & do think the MSM is what's keeping my herx aches & pains at bay.  I haven't needed any p.forte since 1st Jan, so that has to be a good thing.
 
It is a little difficult for me to sort the wheat out from the chaff when most of the boards I belong to are all about RA - however, my guess is that it is similar and if you believe the powers that be over here, they all refer to AI as AI no matter what disease you actually have -  just different presentations.
 
Anyway - MSM is a small cost to pay if I am pain free whilst the abx is working plus I got it in powder form so it isn't too unpleasant to drink.
 
 

Thanks everyone for your support.  I will definately take more probiotics.

Last night went to bed with a sore throat and stiff and achy shoulders and arms, this morning it is was alot better. Sore throat was gone and stilffness not as bad.  I know my evenings are the worse for me espeacially when I'm over tired. My Rheumy told me to take the minocine  every day but should I take it M/W/F as per the book and I noticed most of you are doing the pulse method.
Looking forward to your response.
Thanks again guys, it sure is nice to have a place where you can get advice.
Dobine-
 
There is alot of information at the Road Back Bulletin Board also www.rbfbb.org
Welcome Dobine. 100 mg twice daily is a pretty heavy dose of minocin to start. But it's wonderful that your doctor is working with you -- I am on pulsed dosing (m,w,f) of just 100 mg -- and have been on that dosage the entire time. I am pretty much in remission now -- no signs of RA on clinical exam -- and my bloodwork is much better -- but not perfect. This is a long, slow, process.
 
After reading all the info on MSM on the road back board, I added it to my supplements just a few weeks ago. I started with just one 900 mg pill/day -- as I did not need it for pain management, just thought it might be good to add for general health. I have been amazed at one significant change that has followed -- I am sleeping better. I am used to getting up many times at night, and for the last 10 days or so I have only awakened once each night -- so I can now go 3 or 4 hours actually sleeping. This is pretty amazing, and I am torn wondering -- is this just coincidence, or has the MSM really helped me here? Whatever the reason, it has really helped my general fatigue. I am going to start taking a second dose at dinner, and leave it at the 1800mg level for awhile and see what happens.
 
I am not aware of any effects of AP on female hormones -- my natural medicine doctor supplements me with bioidentical progesterone/testosterone cream. I have been taking that for almost a year, and that has also helped me. There is just so much to read and explore with these diseases.
 
Bonnie Lou
I take a supplement with MSM that seems to help.

Hi Dobine -glad you found us!

Hmmmm - let me think.  Personally, I went with the MWF pulsing dose because on the Roadback I noticed a distrubing tendency to herx all over again when people dropped down to that dose when they got to maintainence levels.  I figured, why go thru that all over again?  However, GoGo has said that she's read that people who are newly diagnosed can get premanent remission on the Daily dose.  GoGo - did you have links to any research?  If you've had this for a while, I'd ask the doc about pulsing.  Also, did he say why keep the Avara and drop the Sulphsalizine?  From what I've read here on AI, Avara seems to be a much harsher med and at least the sulphasalize is a poor cousin to an antibiotic.  Get my drift?  My final question is about your next visit - May???  That seems like a long time without having labs drawn when starting a new med.  Your numbers will jump and somebody should be watching your LFT's.  Maybe I'm just being silly tho as my next appointment was 3 months so...that's not toooooo long extra to wait.  As everybody has said - probiotics, probiotics, probiotics - and maybe some milk thistle to support your liver while you detox.

Hugs,
 
Pip
 
Edited to spell dose correctly and to comment - you are darn right, this is a fight for our lives!
Pip!2009-01-20 14:07:56I didn't read about daily dosing for the newly afflicted, I heard about it on Dr. Mirkin's radio show. But I have seen it in internet action, with that guy mark1 that used to come here. He started on 200mg a day right after her was DXed and after about 6 months his RD was all "I must have misdiagnosed you".

So I don't have any research, just hearsay.

Here's the link to the broadcast. You have to listen to Dr. Mirkin talk about a cross dressing runner first, then the next guy is newly diagnosed with RA:

http://www.drmirkin.com/mp3s/hour228.mp3


Personally, I decided to pulse dose because from what I've observed it seems more effective, and because there's less stress on the gut that way. I want to take as little drugs as possible.

.

justsaynoemore2009-06-17 15:44:12Thanks GoGo!
 
Pip

.

justsaynoemore2009-06-17 15:44:35

.

justsaynoemore2009-06-17 15:45:00JSNM- celebrex is very much still on the market.  The concern for the COX 2 inhibitors had to due with cardiac issues not with bleeding.  Buckeye -
 
Maybe she meant another drug however - there is a lot on the net about vaginal bleeding and Celebrex. 
 
Cathy - did you report this to the FDA?
 
Pip
Crud - forgot this
 

.

justsaynoemore2009-06-17 15:45:52Didn't you say you had a huge file of health info - find it or as close to it as you can - then report it.
 
Hugs,
 
Pip
Okay, I definitely have some kind of food or gut issue, but what? A few times lately when I haven't eaten at home I get what feels like pains in my intestines, or a big ball of something slowly moving through, and feelings of constipation and other unpleasant things. I had this going on last night, and I still have the dregs of it this morning.

So yesterday I ate my usual breakfast of oatmeal, cooked fruit, nuts, seeds and maple syrup, and dinner was a big salad with seeds, egg, and cheese (along with a lot of raw veggies of course). I eat those things all the time so that's not the problem.

It was lunch. It was lunch. We went to a new pub 'round the corner because we heard the food was really good, but we went at a weird time (4pm), and they only had a little snacking menu available. I had fries with curry sauce and peas on it, a couple spoonfuls of BF's chicken noodle soup, and maybe 1 teaspoon of curry tartar off my friend's plate.

Maybe I should pop by and ask what's in that sauce, 'cause I'm having this "gut feeling" if I could pinpoint and eliminate what food is making me feel like this from my diet I would be way better off, healthwise.

I feel how people with celiac describe how they feel when they eat gluten, but I eat gluten all the time and it hasn't affected me like this.A little info can go a long way.  Ask about the curry tarter!
 
Pip
Go back in a week and eat the exact same thing.  If you get the same results, then perhaps it was something in the food.  If not, it could just be a coincidence. Those are both good advices.
Thanks, peops! [QUOTE=Gimpy-a-gogo]Those are both good advices.
Thanks, peops![/QUOTE]

I know from experience that not every bellyache can be tied to something eaten immediately prior.  Lots of trial and error.  Sometimes a bellyache just happens.Wink
Bonlucas-
 
Good to hear from you.
[QUOTE=JasmineRain]
[QUOTE=Gimpy-a-gogo]Those are both good advices.
Thanks, peops![/QUOTE]I know from experience that not every bellyache can be tied to something eaten immediately prior.  Lots of trial and error.  Sometimes a bellyache just happens.Wink[/QUOTE]

I know, but it's not really a bellyache. It's more in my intestines. And it's not the first time, and it usually happens when I eat out or at someone else's house, so I'm starting to think it's something I ate that's not in my usual diet, you know?

I'm going to try eating those fries again next week, like you suggested. I'd really like to get to the bottom of this.I hear ya... those issues can be notoriously hard to pin down, and hard to avoid even if you do pin it down when you eat food that's out of your control. I see this as an opportunity. For some reason yesterday I didn't do any snacking at all, and both home meals I ate are things I eat frequently---there weren't even any new packages of stuff. So if i can narrow it down to what I ate at that pub I think it's a good clue.

.

justsaynoemore2009-06-17 15:46:38

.

justsaynoemore2009-06-17 15:47:06JSNM, I don't understand---do you mean to say sometimes your gut feels like mine did last night? Do you have any idea what causes it, other than inflammation? Or do you think it's strictly a flare of the intestines?

I have never heard of activated charcoal pills, but I'm going to google.Be careful with the activated charcoal - don't take it around the same time you take medications or it can adsorb them and render them useless.Wink

.

justsaynoemore2009-06-17 15:47:47Pip- my rheumy wanted me to stay on the med that I thought was helping me.  I never thought that the sulfasalazine was working at all since I had been on that one since 2004, and had quite a few major flares.  So he suggested I stay on the Arava.  I know the Arava is the harsher one of the two, but if the minocin works it will be easy to drop.  So far my Rheumy is listening to me now but I am cautious because I want him to let me continue with the minocin. So for now I just coasting and hoping for the best.
About the lab testing, I have a standing order for my blood test at a town hospital every 2 months and need to see my family doctor for a copy of the results before my next apt with the Rheumy. My Rheumy then reviews the blood test results and lets me know of any changes to meds while I'm there.  I guess he does it this way because it saves him time.  He is also depending on my family Dr to review the blood test should anything urgent arises.
 
This is my 4th day and I do have some side effects like JSNM described, like light headed, dizzy, and mild diarhea.  I do want to hit this hard but I will have to cut it back soon because I won't be able to drive with these symptoms. My joint pains are jumping around alot.  I guess this could be an indication that it could be working?
 
Thanks everyone for your input.Big%20smile 
Dizzy is really, really common on starting.  And yes, that jumping around probably means it's working.  Yeah for you! 
 
Probiotics?  The good stuff???
 
Milk thistle will help.  Search here for the Whole Lemon Olive Oil drink.  That really cuts a herx.  Have I mentioned I hate lemons?
 
Hugs and see you at the finish line!
 
Pip
 Pip - I will look into the MIlk thistle and I will start the Whole lemon Olive drink today. Just purchased some lemons yesterday. 
I was just wondering would lemon concentrate work?
 
Thanks for your encouragement.Smile
 

I don't think the concentrate will work for two reasons - 1) the sugar in the concentrate and 2) the rind, pips and all is the key.  I think lemon water helps us - just not enough KWIM?

You go girl!  We're gonna get a soccer team going eventually!

Hugs,

Pip

Well, I know I chew my food well. I will get to the bottom of this.

I am reminded of the WL/OO drink from the thread today, and I'm going to make one.

Last night I had my first epsom salt/hydrogen peroxide bath in a long time and it did me a lot of good. My hands don't fizz up any more like they did in my picture, though:
I think I lost my darn chance to fizz.
 
Pip
MMMM....lemon olive oil drink. If nothing else, it's refreshing!Gimpy - that picture of your hand still amazes me.  I try to get in a fizzle bath each weekend, but miss when super busy.  I never got the bubbling up of infection out of my skin like you did, but I know I feel the peroxide fizzling away at something, but don't see anything.  Plus you feel so durn clean afterwards, its just plain good.  [QUOTE=Dobine]
 Pip - I will look into the MIlk thistle and I will start the Whole lemon Olive drink today. Just purchased some lemons yesterday. 

I was just wondering would lemon concentrate work?

 

Thanks for your encouragement.Smile

 
[/QUOTE]

Hi Dobine,

My reaction to MCN was the same as yours - lightheaded, dizzy, could not drive etc, and jumping around joint pain.

I had to go to 50mg twice a day, on M, W and F. I got good results with no side effects other than lots of yeast, which I combatted with diflucan, nystatin and probiotics.

I found the best probiotic to be Sacchromyces Boulardii. Tougher to find but worked WAY better than a lot of the others.

Interestingly enough, I went to see a chiro/chinese medicine guy lately and had my cortisol levels checked - they are 5x what they should be. If you google sky high cortisol levels, you'll see that it's linked to chronic inflammation and joint pain....

I have been on MCN (100mg a day MWF) for almost a year now and I feel almost 100%. NO more NSAIDS, just probiotics, fish oil and TURMERIC pills (natural anti-inflammatory). Hi Cdndream!
 
We've missed you!  Good to see you're doing well. 
 
Hugs and more hugs,
 
Pip
cdn - good to see you and thanks for the great info.  And I am very glad to see someone else on tumeric (Chinese - tumors - hint, hint).  I buy it as a seasoning, at the health food store so I get organic.  It's like $4.00 for a good-sized seasoning bottle, and it only takes a couple of shakes in my morning, well, wellness shake LOL.
 
The best general probiotic I have found is a powder from NOW called Probiotics.  LOL  It's not in a capsule, and it can be sprinkled on anything as there is no taste, but it does turn everything grey/rock black looking - so appealing and appetizing :)
 
I see my primary this coming week for my 3-month check.  My thyroid levels have been very bad and all over the board for years (no thyroid, I am disappearing one gland, one organ at a time), but my T3 got really crazy, so she cut down my dosage.  This will be my first blood work since switching over to Armour Thyroid, and a waste of a RX as I had filled it 6 months earlier, but finished up my Synthroid as I don't want to waste good medicine, then she immediately dropped it down.  I think I used 7 days of the first AT script, but its good for a few years in my box of unused medications I have been taken off of over the years. 
 
But the switch to AT I feel has made a huge difference.  Being on Synthroid since 1991 was too long.  But I always ask the lab for a printout of what she has ordered, and she did NOT reorder the T3 which has been sky high for six months, and instead ordered a thyroid hormone uptake, which I couldn't find much on, very difficult to understand.  I think it has to do with T3 uptake, but I am going to ask her why she didn't retake the T3.  I had already decided to take on another endo (I have had 18 years of whacked out endos too, on top of the whacked out rheumies), whom I see the day after her, so I will see what he has to say on my first visit.  Perhaps he will order new tests, including a T3.
 
But the weirdest test she did was not the usual ANA, but ANA with reflex, which is to test for lupus - I thought we were way past this when my double-stranded DNA for lupus came back negative after I finally asked for it.   (One of my one-shot primaries ordered single strand which set off a year's debate that I needed a double stranded to prove lupus, and I finally stop the in-fighting and ordered it myself and it was negative). 
 
It will be interesting to see what she is up to as I greatly admire her.  I am lucky I will be able to just flat out ask her what she is doing, she is the best. 
 
And I am back into a feeling good phase, as I now know this smack in the face with the box set off a full blown, lets revisit every symptom flare, plus add some more advance RA symptoms and progress along faster, and is finally settling down.  But my blood work will let me know for sure. 
 
Hope everyone has a good RA day - Cathy
cdn-
 
Good to hear from you.
Anna/BrrdGrrl was asking about my progress on AF, so I thought I'd bump up this thread to make it easier to find.sorryInFlamed0nnline2009-02-03 20:16:05

.

justsaynoemore2009-06-17 15:49:09sorryInFlamed0nnline2009-02-03 20:16:48sorryInFlamed0nnline2009-02-03 20:15:40[QUOTE=cdndream] [QUOTE=Dobine]
 Pip - I will look into the MIlk thistle and I will start the Whole lemon Olive drink today. Just purchased some lemons yesterday. 

I was just wondering would lemon concentrate work?

 

Thanks for your encouragement.Smile

 
[/QUOTE]

Hi Dobine,

My reaction to MCN was the same as yours - lightheaded, dizzy, could not drive etc, and jumping around joint pain.

I had to go to 50mg twice a day, on M, W and F. I got good results with no side effects other than lots of yeast, which I combatted with diflucan, nystatin and probiotics.

I found the best probiotic to be Sacchromyces Boulardii. Tougher to find but worked WAY better than a lot of the others.

Interestingly enough, I went to see a chiro/chinese medicine guy lately and had my cortisol levels checked - they are 5x what they should be. If you google sky high cortisol levels, you'll see that it's linked to chronic inflammation and joint pain....

I have been on MCN (100mg a day MWF) for almost a year now and I feel almost 100%. NO more NSAIDS, just probiotics, fish oil and TURMERIC pills (natural anti-inflammatory). [/QUOTE]
Thanks cdndream for your response, its great to know that the symptoms are the usual ones.
I think I will have to lower the Minocin to 100mg, the dizziness can be a bit much.  I will have to call my Rheumy or wait till my May apt in the mean time I will start to take it (MWF) to see if that helps.
A good Sacchromyces Boulardii is Florastor. It's expensive but it works. Where I live you have to ask the pharmacist for it.

I actually started Minocin at 50mg a week, then slowly worked up to my current does of 2x100mg MWF.One of the pitfalls of starting at a high dose, besides the aforementioned side effects, is you can have the Mother-of-All-Herxes, which can be a little scary. I think it's Becky who said AP isn't for the feint of heart.

Since I've gone off MTX I've been having the jumping around pain but the Lemon Olive Oil drink helps an amazing amount. I mean, really weirdly amazing, considering it's basically salad dressing. That seems to be leveling off, anyway. I thought maybe because of my slow weaning I wouldn't really herx, so I was surprised by how much herx or flare I had but it's improved greatly, and it never got bad enough I couldn't do anything I could do pre-RA, which I certainly can't say about the times I was only on MTX and plaquenil. Last week my shoulder flared up bad but it only lasted for about 4 hours. I remembered I forgot to take any fish oil so I took a handful and that was enough to get the genie back into the bottle. I've never had that experience before. Usually when something flares it stays that way for weeks. Gimpy
 I have tried the lemon/Olive drink and I was surprised that it does help.  So far so good.  No real major flare ups yet, just achy in different places everyday, alot of jumpin around. I'm hoping the dizziness will subside soon.  I will look into that probiotic when I'm done with what I have.  I do feel a difference since I have been on AP. Next thing will be to get off the Arava and to take only the Minocin.

.

justsaynoemore2009-06-17 15:49:37

.

justsaynoemore2009-06-17 15:50:11not on the drugs coating on the implant.  the minocin and rifampin are coating theimplant to prevent implant related infections

.

justsaynoemore2009-06-17 15:50:34Hi everyone,
 
Well it's 43.5degC here and it's only 9.40am --- damned hot !!   So glad I work in a/c, but would rather be at home having a swim.
 
Well my herxing has moved, it is now on the balls of my feet and my right ankle is swelling every now and again over the past week for the first time in my life,,, what a pain in the arse that is !!  I can't even get on my stilleto's right now,,,,,  Glad I have a lemon tree that fruits all year round, I am going to mix up a big batch when I get home and drink it twice a day to get rid of the toxins a bit quicker -- just have to stop on my way home to get some more olive oil.
 
I am looking forward to seeing my PR GP next Mon to see what she says - my test results came back and everything is within normal range as usual so it is still PRA - I guess that is good news even though it hurts !!  
 
Must admit I stopped taking the MSM last Sat (forgot to take it away with me) and boy oh boy am I suffering for that mistake --- started taking it again this morning though.
 
The herxes are not really too bad in themselves it is just where I am sore that is the problem....
 
Can anyone let me know what to do about the swollen right ankle, I have tried everything I can think of - ie ice, buckets of ice cold bore water etc,  and I still can't see my ankle bone and it still hurts --

.

justsaynoemore2009-06-17 15:50:58
Thanks ---
Will try that tonight - seems that it is overnight it gets worse, when I am up within 1 hr the pain dissipates to tolerable and during the day I don't need any pain meds, getting on any shoes is a problem and walking is a struggle because of the ball of my left foot ---
 
But yes, the tests are good ----
So much for that rheumy who told me a year ago that I would be crawling back to see her within 6mths and begging her for some strong meds ----
 
If this is the worst I get right now it is OK - when I remember the 9-1/2 pain I used to get with flares this is nothing by comparison ....
 
Thanks again for the hint about elevation,
Maz
Hi Maz -
 
WL/OO - seriously, that stuff rocks!  Feel better sweetie~
 
Pip
I would also suggest trying an epsom salt, hydrogen peroxide bath. Unfortunately it probably won't do too much for the swelling but it might help the pain. I had a swollen knee once and the thing that finally made it de-swell was fish oil, but it took 3 months before it was effective. Hopefully your foot will go down sooner than that.Okay, my three-month checkup with my fantastic family practitioner:
 
She comes in and says, I bet you will be happy with these, and hands me a copy of my blood work.
 
Every blood test is perfect, absolutely perfect, everything.  My RA is not active, my thyroid back to normal after a dosage reduction 3 months ago, liver enzymes perfect, anemia numbers perfect, the blood work of a healthy person.
 
I am in slight disbelief.  I start a new endo tomorrow, a new rheumy in two months to take this burden off of her, which she is very happy about.  She is referring me to a pain specialist for this rapidly deteriorating DDD back and the pain from osteo and RA damage, but that's it. 
 
I have now been off MTX over a year, and on Minocin for about 16 months, I would have to check to make sure, maybe its closer to 18 months.  I cannot believe it, I found my RA drug in here, on Arthritis Insight on the internet.  Amazing.  Thanks to all the pioneer APers in here who post and let others know about this DMARDS.  Cathy
Also doing WL/OO drink.  Have to stop and pick up some lemons.JSNM, that's really great news! Really, really great. I'm so happy for you. [QUOTE=justsaynoemore]
 
Every blood test is perfect, absolutely perfect, everything.  My RA is not active, my thyroid back to normal after a dosage reduction 3 months ago, liver enzymes perfect, anemia numbers perfect, the blood work of a healthy person.
 
[/QUOTE]

Awesome awesome awesome, Cathy!!!!!!  Congratulations!

TERRIFIC NEWS CATHY !!!!   WHOO HOOO !!!!!

Maz-aust2009-01-29 16:31:36

Ok, just an update on my herxing ---

Went to the chemist on the way home last night for some diclofenac - took 50mg at the counter, got home filled a bucket full of ice cold bore water (underground river water) sat there for about 1/2 hr.  About 7.00pm took 2 teaspoons of MSM and about 8.30 I realised I was absolutely pain free --- I know the diclofenac doesn't work for about 6 hrs so my guess is it was the MSM -- I will never forget to take or choose not to take MSM ever again .... My ankle is normal this morning, so the diclofenac is working and I was able to put my shoes on before I came to work .... it's over !!! Yeh !!
WOW! That is most awesome.

I gotta try me some of that MSM.

.

justsaynoemore2009-06-17 15:51:46Pretty amazing what different things do for different people isn't it !!
 
Am anticipating yet another change in abx happening on Monday when I see my PR GP, so am stocking up on the MSM and probiotics --- just in case.
 
Just as an aside -
My gyneocologist and his colleagues can't for the life of them understand why I am manufacturing oestrogen and why the levels are through the roof - hence the bleeding.  I know there is only 3 ways of hormone levels increasing -
1     Ingest it (ie swallow them)
2     The ovaries manufacture them - (I am way past this happening),
3     The pituitary gland telling the ovaries to produce them (and we checked, it isn't this)
 
They have never heard of anyone my age having any hormone problems much less at these levels... they are really concerned (ME TOO!) and don't really know what to do ... if they do a hyster that won't help because the uterus will be gone but the ovaries will still produce the hormones --- what then ???? !!!!  (I can do without the added pressure of having the big 'C')
Maz-aust2009-01-29 19:34:36Maz - its always something, and I know the big "C" is in the back of all our minds, unfortunately. 
 
I had the oddest experience today.  I tried a new endocronologist.  Since 1990 I have seen five endos.  All they have done is move my Synthroid dosage up and down, no other testing but TSH, T3, T4, antibodies.
 
Today, I saw a real endo.  It was amazing and I am in disbelief, but this doctor is remarkable.  I am so loaded down with blood tests, bone density tests, ultrasounds, etc., its unbelievable.
 
He wants me off the Fosamax for the osteoporosis.  He is saying he wants me to switch to daily injections to build bone as in 20-30 years from now I can go one Fosamax for maintenance, as that is what it does.  I said, I don't think I am going to live that long - it was shocking to be engaged with a physician thinking about the long range.  He has this reputation in town of being this hard ass, but I liked him and we clicked.  He ordered up all the RA tests pretests like hepatic function, etc. that the rheumy never bothered to get baselines for.  I think he moved back home to Mommy and Daddy as he doesn't have a license in NY - buh-bye Dr. Rheumy. 
 
I am going to enjoy this doctor, he is a real physician.  Amazing, finally, another doctor on my small team I am building.  It was a great visit, a great doctor.  He was cracking jokes with me, had all the time in the world for me, no rush.  His attention was on me, not the next patient.  Remarkable. 
justsaynoemore2009-01-30 19:19:06Maz
if the uterus is gone the ovaries will not produce as much estrogen..thye will eventually slow down to menopause levels
Love THe Road BAck by Dr. Thomas Brown.  Great book.

Great news - a doctor who actually listens to you is a rare thing - so glad you have found one.. 

As for me - I am just going with the flow right now, more blood tests this morning so will wait with bated breath to see what these results are ....
 
Had my appt with my PR GP yesterday and she is more than happy with my PRA progress but is really concerned about the gyneo problem -- funny how you can get side tracked onto another thing and forget why you are there ...lol   
 
My thing right now today is the gyneo thing will sort itself out and my specialist will figure out what is best in the long run -- my abx being stable is the main thing......Taking my MSM twice daily is a dream, no pain at all -- this is heaven!!
 
Cheers,
Maz
[QUOTE=buckeye]Maz
if the uterus is gone the ovaries will not produce as much estrogen..thye will eventually slow down to menopause levels
[/QUOTE]
 
Thanks for that, in all my guffuffle that fact hadn't even crossed my mind --- so am not as worried as I was last Friday !!
 
I guess the big 'C' scares the sh.t out of me right now because my brother-in-law is under palliative care and we don't expect him to last more than a few days - it just isn't fair that someone who is a good person has his life taken from him.
 
 

.

justsaynoemore2009-06-17 15:52:31Thanks Just,
And will do !!
 
Maybe the AP therapy is working too well .....lol  and I am reverting to puberty
Reread Rheumatoid Arthritis: THe Infection Connection by Katherine Poehlmann.  Interesting book.  She was a computer specialist at Rand Corp. when diagnosed with RA.  She did investigation and decided on Antibiotic Protocol.  She got a PhD. in Pubic Health at U.C.L.A.  and did her dissertation on Antibiotic Protocol which became this book.Cathy -- what a wonderful report! It is amazing how great it is to feel hope again. I find it so puzzling that some people are so resistant to the use of AP, when we have so many success stories. I am glad you are now one of them.
 
I wish you were in Chicago so I could send you to my prolotherapist for help with your back problems -- his work has been so helpful and successful with cartilage and connective tissue repair. My shoulders are like new, my right hand is 85% better -- I have had my daughter getting treatments for her plantar fascitis and she is definitely healing (although she needs to deal with weight issues if she really wants to be 100% healthy). There are so many good alternative therapies -- unfortunately they are not convenient and/or they are not covered by insurance. It's a challenge.
 
Stay healthy!
 
Bonnie Lou
Hi Bonnie Lou-
 
GOod to hear from Chicago.  Glad your daughter is getting help and healing.

.

justsaynoemore2009-06-17 15:53:04

.

justsaynoemore2009-06-17 15:53:33The pills are that tiny?  OMG - I remember everything I took for acne being HUGE!  I didn't take mino long, though; it didn't work as well as whatever I was on before and the derm switched me back.  the operative word    mild RA   Wink [QUOTE=mabus]the operative word    mild RA   Wink[/QUOTE]

It does say that, and my daughter is on Zith not mino, due to her young age.

But she has been diagnosed as 'severe' by more than one rheum and this is confirmed by xrays and MRIs.  Severe polyarticular (more than five joints) jra.

She takes Zith MWF and that's all.  We never treat for pain, and she has only missed school for dr. appts. and three (separate) days of fever this school year.  Still taking dance and swim team starts again in a couple months. 

I guess that means either: all the rheums are wrong and her case is really mild or it might work for more than just mild cases.

She's not perfect yet (and has one permanently damaged joint from while we were trying to get a dx), but nothing else has helped her like Zith has so far.
not getting in a pissing match other than saying it does not work for all and most of the people proclaiming it's miracle properties are mild... lets not forget
GenaRogers
Brisen
Bob
stem
less
and many more run off that tried it and it didn't work...just being realist hereBig%20smile
[QUOTE=mabus]not getting in a pissing match other than saying it does not work for all and most of the people proclaiming it's miracle properties are mild... lets not forget
GenaRogers
Brisen
Bob
stem
less
and many more run off that tried it and it didn't work...just being realist hereBig%20smile
[/QUOTE]

I didn't think I was entering a pissing match, just pointing out our reality.  I'm not convinced you have to be dx'd as mild for it to help.

My familiarity with older posts from at least two you mentioned are of people being happy with how they did on AP for awhile.  If you have a few good years, even months, that is as good as or better than many counterparts do on traditional meds, isn't it?
well the people i know substained damage when on it, so people need to know the importance of keeping up with x-rays/mri's while on it. I am not discounting some have the obivous infection but again my view is IT DOES NOT WORK FOR ALL AND WORKS MOSTLY FOR MILD.
all the fluff and magical stories need a counter view but then again get attacked from others for posting my views.......smackdowns do not bother me. i am also happy for you and your daughter, so peace and outMabus-
 
If you don't like AP, fine.  Seek your own healing.
jan,
never said a thing about not liking ap..where do i state that? i thought this site was all about various experiences, what's with the one-sided stories and censorship? i thought that was only on the roadback forumLOL
You seem to like negatives.
 
How are you treating your RA?
huh? whats negative, that some fail AP...so people who talk about therapies that didn't work for them are negative...I guess you aren't treating your RA.i guess you can just keep on guessingWacko [QUOTE=mabus]i guess you can just keep on guessingWacko[/QUOTE]

I guess you post that under your other screen name(s)?  It looks like 'mabus' joined in Oct. 2008, but the posters you refer to go back much longer. 


well there is achives and lurking..you guys are very defensive..geezzzzz
 and now the personal attacks begin, drumroll
mabus2009-02-08 17:18:51 [QUOTE=mabus]well there is achives and lurking..you guys are very defensive..geezzzzz
 and now the personal attacks begin, drumroll
[/QUOTE]

No need to put words in my mouth.  You could have simply answered 'yes' or 'no', so I truly apologize if I made you feel the need to practice some type of defense.  I was just curious - some of the names you mention go back to at least 2005, so that is three/four years of archive reading - wow!  Good for you!
i've been reading this forum off and on since 2004. i didn't realize someone's opinion about ap would get you so worked up. Ouch [QUOTE=mabus]i've been reading this forum off and on since 2004. i didn't realize someone's opinion about ap would get you so worked up. Ouch[/QUOTE]


??????????????

Sorry, not worked up.  Many other people here share your same opinion, as you must well know.  Take care. 


Question for the People's Pharmacy about a teen taking mino for acne, they mention probiotics:

http://www.peoplespharmacy.com/archives/pharmacy_qa/are_antibiotics_responsible_for_gi_woes.php


Check out what the second commenter says:

" I took antibiotics for acne for almost 20 years. My doctor switched me to a different antibiotic every 3 months to reduce the chance of resistant bacteria.

Anyway, I suffered from such problems before, after and during the meds. I would most commonly get a violent bout around a half hour after eating, mostly when I was eating out.

My doctor finally figured it out...my intestines don't absorb fats properly. I keep a sharp eye out for fats (still difficult to do at a restaurant) and my problem has been solved. It may not be your daughter's problem, but it's such an easy thing to try (reducing fat intake), it couldn't' hurt to do this to rule out the problem.

By the way, when I went off the antibiotics, I started having autoimmune problems. Since my family is rife with such problems, I figure the antibiotics may have actually helped fight this."


Suzanne-
 
Probiotics are great for AP people and anyone else.
Jan,
 
Just don't bring yourself down to his level .... it is pretty low.
 
Plus he seems to always want to post on the AP topic when he clearly doesn't agree with the treatment path ......... strange that isn't it ??
 
Now for me -
I had my first flare last night - had to happen right, too much stress since Mid Nov 08 - and yes it hit on the palm of my left hand, excruciating stuff ...... but it's gone now yea !!
 
Thank heavens we are all different .....
 
Maz
 
 
Maz/Lynnie,
the conversation did not involve you, why do you feel the need to always jump in when it doesnt concern you. Jan didnt stoop to any level and inferring i'm low for simply stating ap doesn't work for all, my personal perspective is rude on your part. Go back to roadback where no opposing views are allowed or accepted. that way your knickers wont be in a constant knotWink
Just reread Road Back and saw that April 17, l989 was passing of Dr. Thomas McPherson Brown, found of Antibiotic Protocol so April 17, 2009 will be 20 year anniversary of his passing.  Great physician.  My opinion.  Glad for his work."OK - It's Not Lyme Disease, Does It Matter?"

http://lymemd.blogspot.com/2009/02/ok-it-is-not-lyme-disease-does-it.html

From the blog:
"For the sake of argument, let us posit the standard rheumatology opinion. She never had Lyme disease. Antibiotics helped her because of non specific anti-inflammatory properties and modification of cytokine responses.

The patient came to me on a powerful immune suppressing drug, Methotrexate, which is known to have serious complications, including cancer. And besides, the drug wasn't helping her. She improved with antibiotics. Rheumatologists have argued with me, claiming that long term antibiotic therapy is dangerous. Millions of teenagers take chronic antibiotic therapy for acne. I fail to see any merit to these arguments.

OK- LLMDS are wrong. It is not Lyme disease. It is something else. It doesn't matter what you call it. It works and it is much safer than "standard" therapy."




Here is an interesting documentary of the late Dr. Thomas McPherson Brown from the Road Back Foundation. Ron
 
 
Thanks Ron!  I watched 15 minutes and have to move on, but since there is a timer on the video, I can easily pick up where I left off later.

The first 15 were very interesting - I didn't know about the gorilla at the National Zoo and it was neat to actually see a Western Blot, too!
Ron-

THanks alot!!!!!!!Wink
Just found some time to watch the video.Valentine's Day poem for APer's:
 
Roses are red, violets are blue.
Antibiotic Protocol is GOOD FOR YOU!!!!
Need to get some lemons for the whole lemon/olive oil drink.

Jan, sorry to hear you are herxing - (I am assuming you are because you need the lemon drink thingy)

If you haven't had it before, just want to say - IT DOES WORK !!
 
Think everyone on AP should come over and grab some lemons off our tree ... and you would get a nice visit to Oz in the process .. lol
 
Maz
 
 
 
 
Still waiting to hear about my blood tests - hopefully Monday ... the last results were starting to drop so am hoping it is continuing.
 
Considering all the stress I have been under since Dec I am pleased to report I have only had one flare that was gone by 10:30 the next morning; I know if I wasn't on AP I would be in a fair bit of trouble.
 
It was confirmed Mon that I need to have the op and we are scheduling it for May (so I can arrange for a temp to come in to work for 4 wks).  Must admit I am really worried about what may happen with my PRA - can someone let me know if going under anaethetics & having  major op could change/make it worse or progress the disease. 
 
Maz-aust2009-02-17 15:41:50Hi All -
 
Sorry I've been AWOL - I've been running around like mad.  Saw my AP doc the other week and he re-ran bloodwork - I'm hoping it shows something from that 36 hour flare on New Years Day but he thinks it won't as I'm 100% again.  And we were talking about my meds and he figured out I'm not taking the right amount of zith.  I was supposed to be taking 2 250 mgs pills on T & Th.  Which kind of explains how I got a year supply - it was supposed to be a 6 month supply.  Oh, well.  Also, he's checking my selelium (spelling) levels as that's related to thyroid.  Other than that...see me in 8 weeks. 
 
On the home front - my little brownie is in the midst of Girl Scout Cookie selling season.  OMG - she's sold almost 500 boxes herself (I made her ask everybody herself - it's not mom's job to sell them, if she wants the prizes, she has to do the job).  And she's adamant about going out every night to sell them.  I've walked up and down more sets of apartment stairs then I thought possible.  And it's getting easier the more we keep at it.  I wonder if I'll finally lose some of this last weight I've carried around this way?!?!
 
Maz - don't be freaked if your labs rise - it's the nature of the beast.  When they head down for good...look out world!  As for the surgery - I think you'll be OK - they tend to give IV abx when you have surgery.  :-)    Just keep an eye on all the instruments and don't let anybody near you if you don't think whatever they're holding is clean.  I should tell you the disgusting story of my daughters fired pediatritician one day - it will make you throw up.  Ugg!  And this freak was a doc???
 
Jan - LOVED your AP poem!  Absolutely loved it!
 
Cathy - arrgh - can't see a page back and forgot what I was going to say!  Hugs anyway!
 
Mabus - I have no idea what you're saying.  Last I heard Gena Rogers was going to see Dr. M in Chi town and he wasn't going to prescribe antibiotics.  She doesn't come back here often so we don't know - I do know she made serious headway on the diet angle.
 
I'm not aware of what's happening with Brisen and I hope she is doing well - but again - last I heard she was doing AP with biologics - which is not AP if you don't wean off.  The best you get with that is a holding action - the worst is - the biologic will undo the AP.  This is why I kept on GoGo to get OFF the MTX and plaq.
 
Stemcell4me, if I remember her story, is that she only did AP AFTER her transplant - and quit in the middle of it.  (edited to say I ran a search and she did AP for 9 months pre-stem cell). 
 
Who is Bob?
 
Pip
Pip!2009-02-17 21:38:15pip, try re-reading some threads...12/8/08Wink GenaRogers/mayo clinic to startMaz-
 
What kind of surgery if you want to say.  If not, O.K.  Good luck.
 
Pip-
 
Good to hear from you.  Doc visit sounds good.
 
Good luck to the Girl Scout!!!!!
Pip
Welcome back, missed you !!
Not so here, after an op you generally (unless really required) get abx by tablet not IV, however my question was to do with my own abx & pain killers - I am not sure the hospital will let me have them in my possession.  Any suggestions as to how I could tell them so I can have them in my bag would be great - if I flare I don't have time for a nurse to get off her backside and then find the meds, I only have a 10 min window to stop it hitting 9-1/2 on the ole painometer.
Glad you sorted out your abx - will be interested to see how you go.
Brownies - God that takes me back in time ... good for her.
Talk again soon,
 
Jan
It's OK, us female sometimes just have to bite the bullet and get things done.  Seems because of my increased hormone levels I don't have a choice but to have a hyster, and have scheduled it for May.   I am not in the slightest bit worried about the op itself, and unless something drastic has happened that we don't know about I don't have the big 'C' , just worried how it will affect my PRA, but thanks for your support.
 
 
Maz-aust2009-02-18 16:53:04Ok, apparently I have been out of the loop for too long!  What is AP?  This is my first time back to the forums/blogs in about a year or so on this site.  I was hoping it was still around!  I am very glad to see it is!
Also, where or what category do I post a general symtoms question at?  I am experiencing some new odd and bothersome symptoms after being on RA meds for about 10 years. 
I don't want to "bombard" this category with this type question.  Thanks for all of your help!
Star
[QUOTE=hopeful_baby6]Ok, apparently I have been out of the loop for too long!  What is AP?  This is my first time back to the forums/blogs in about a year or so on this site.  I was hoping it was still around!  I am very glad to see it is!
Also, where or what category do I post a general symtoms question at?  I am experiencing some new odd and bothersome symptoms after being on RA meds for about 10 years. 
I don't want to "bombard" this category with this type question.  Thanks for all of your help!
Star
[/QUOTE]
 
ANTIBIOTIC THERAPY -- the alternative route to wellness & possible remission.
 
 
hopeful-
 
Information at www.roadback.org and in THe New Arthritis Breakthrough by Henry Scammell.
OMG, this is a good one!  "Doctor Rotcod" on mycoplasma.....

http://www.youtube.com/watch?v=uJJA9sWT6Qg

.

justsaynoemore2009-06-17 15:55:38Yeah - at first I thought this was some joke - until I figured out she's for real.  I'm going to watch the rest of her stuff.  And there's a lab in Beverly Hills?  The money always has access to the high-end stuff.
 
Hugs,
 
Pip

.

justsaynoemore2009-06-17 16:13:57

I did???

LOL
 
Pip
[QUOTE=justsaynoemore]Wow Suzanne, this video is mind blowing.  I wish the woman wasn't screaching, but she settles down finally.  The part of all the diseases caused by mycoplasmas is unbelievable.  Why is the medical profession suppressing this information?[/QUOTE]

I think the screeching is part of her character, Doctor Rotcod.  The hair, too.  I bet she is completely different (and anonymous?) out of character.
Oh, and when the 'ph' stuff started, I was expecting a pitch for some 'balancing' product, etc., but no, she just says makes sure you eat a healthy diet!  I didn't view the video but there was a mycoplama lab in Beverly Hills that closed if it is the same one.Hi everyone, its been 1 mth on AP, so far so good.  I can't believe the energy that I now have. I've been painting and swimming and no major flare afterwards.  Normally after anything that I would do I would be down for the next few days, not able to lift my arms etc.
I've decided 3 wks ago to just be on Minocin and Celebrex when needed.  I know this is working.  I still get some twinges and slight pain in the arms and hand but nothing compared to before..  I know one step forward two steps back but so far no major flare.
I have used the Lemon/ Olive drink and its not so bad and helps a ton.
Thanks for you help and will keep you posted in a mth.
 

.

justsaynoemore2009-06-17 16:14:40
I was diagnosed with PS (palindromic syndrome) (aka PA, PRS, PRA) in Dec 07 ---
 
I sincerely believe that I was very fortunate to have been able to research, both the the disease and possible treatments available, quite quickly over a 5 mth period because of the people I met along the way, people who pointed me in a few different directions and actually led me to the place where I am now. 
 
I know enough to make an informed decision about my treatment path with the full knowledge and support of my medical team, and have been strong enough to say no to a couple of rheumatologists along the way.

Personally I believe AP is the way to go.  If it gets my PS under control that is terrific and so far so good.   The most important thing for me is that I know I have chosen the right path.

In Feb 08 when I came back from Xmas holidays I earnestly started searching and then researching what I had.  The first thing I discovered was that it was just one of the many AI diseases and it didn't take too long to convince me I had it for life and there was no cure.  Once I accepted that fact I began searching for a way to treat the symptoms.  At this early stage I was just looking for something to ease the pain.  What I found was a therapy that could actually lead to remission. 

I started AP on Jun 2 and although I am not taking the usual mino I am on the program.  I chose to go onto AP therapy before I read 'the book', but I had read a lot on the subject of AP v/s traditional methods of treatment prior to making my decision.  My doctor explained to me about 'herxing', she also said my lab results could rise before they drop.  I really didn't care, all I focussed on was that this was a way to get into remission or at the very least make my own symptoms bearable so I could get my life back.

I started herxing when the 2nd lot of antibiotics were introduced and the herxing definitely got worse when the 3rd lot was introduced.  Since late February 08 when I changed to a gluten free/dairy modified diet I have had 2 minor episodes of what I call actual pain (lasting about 2-3 hrs).  The herxing fluctuates between an ache and mild pain and it a tolerable pain.   

Since I started down this treatment path the pain levels are not nearly as bad as they were, prior to AP my pain levels were at the 'please kill me & put me out of my misery' stage; on a scale of 1-10 my pain was about a 9-1/2 and nothing but nothing helped (not even morphine) and it went on for 3 full days, so right now I am feeling pretty positive about all this and glad I have chosen this plan.

The main reason I started on AP Therapy was that I had absolutely nothing to lose,  the antibiotics wouldn't hurt me, plus I wouldn't be trying to undo the side effects of some other medication and the big plus for me is that my own immune system wouldn't be destroyed in the process whilst I gave it a go.

I believe it is up to us to research, ask questions and finally make our own decision as to what we are and what we are not prepared to do (hopefully with our doctor's or health care professionals' support and monitoring).  For me my treatment plan is 'diet' and 'AP therapy' --- my long term goal is to get into remission within 3-5 years.

Don't forget you are probably going to feel worse before you get better but remember your goal - to get better - or at the very least to be better than you were.
     
 
Maz
ps : I will always be eternally grateful to Pip who not only gives me any and all the information I need, but also the courage and support to continue. 
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   
Maz-aust2009-02-23 16:59:09Hi Hopeful Baby -- Please listen carefully to what you read on these few pages. All of us are just trying to share a therapy that has helped us (and many others) live very comfortably with RA. This therapy is supported by the Arthritis Foundation, but it is not popular with most rheumatologists.
 
It has been 2 years since I was at my worst -- 2 years ago this month I could barely move my arms without horrible pain. I could barely turn over in bed. I work a full time job, have 6 children aged 20 - 29 (3 of my own, 3 stepchildren -- we are the Brady Bunch) - and we were moving to a new house! It was horrible. I was finally diagnosed in October 07 and was put on plaquenil and minocyline at the same time. My rheumatologist was willing to do the antibiotic if I would agree to take the plaquenil also. She has been a great doctor.
 
I am like a different person. You would never know I have RA. I practice yoga again. I go ballroom dancing with my husband every Thursday night. We ride our bikes for hours on the weekend. My kids forget there is anything wrong with me. I have to rest more than I used to -- I need more sleep and I do get a little fatigued. But that's it. I have cut back the plaquenil from 400 mg/day (where I started) to 300, then 200, and now 100. I eat a very healthy diet (did the food allergy testing and cut out the things that caused inflammation in me -- including foods I would have never suspected such as almonds and navy beans). I live on tons of fruits and veggies, chicken and fish. I cook almost everything -- never touch soda or most artificial products. Life is full again and hopeful. In spite of the scary state of our world.
 
Give this a try .... and contact any of us through this thread or a message if you want more info. Good luck to you!
 
Bonnie Lou
Bonnie Lou-
 
Working on getting more veggies into the diet.  They are supposed to be very good for us.
Reread the New Arthritis Breakthrough testimony of the 81 year old gal on AP and doing well.  Inspiring!!!!!OK guys need some support this morning -

Dr D rang me last night and told me my blood tests were way up from last time (although she reminded me they did reflect how I was when I last saw her, herxing all over the place) RF is now 260 and CRP 53.  She wants to see me in a joint consult with Lynn (naturopath) to try to nut out yet again what is going on.  I did tell her the pain went spontaneously about a week ago, and apart from that stiffness when I get up in the morning (that is gone by the time I have walked from the bedroom to the kitchen to put the kettle on) I have no pain whatsoever right now and am actually feeling pretty good.  Her reply was 'but you know you have a very high pain threshold & even though you are not feeling great you just battle through it & get on with it;  we need to find out if there is something else lurking in the background and it will take both of us to to do that, your test results show the real story and they are not good.'  


Must admit I was a bit taken aback by her concern. 

I had put the changes in my system down to stress and wasn't really bothered about any of it - I thought everything would just settle down when things got back to normal, at the very outside it would all be back to normal by May & that's not that far away.

Now, for the first time must admit I am worried ...

Could it be that the abx I am on isn't working, if it isn't working why have I been herxing, perhaps we need to change the abx & doses yet again... there are a thousand questions running through my head right now.  I know there are people who's numbers are much higher than mine but that thought just doesn't help my state of mind right now -- sorry guys!! 

With everything that has happened in the past few months I really didn't need thisHi Maz, I went through the programme that you are with the same Drs, I stayed in hosp for 3 weeks, and I have to say after 3 years on it, I found it didn't work for me, lovely Dr though and the Naturopath Lynn very thorough.  I wish you luck, at least they are keeping an eye on you, hugs Janie.
[QUOTE=janiefx]Hi Maz, I went through the programme that you are with the same Drs, I stayed in hosp for 3 weeks, and I have to say after 3 years on it, I found it didn't work for me, lovely Dr though and the Naturopath Lynn very thorough.  I wish you luck, at least they are keeping an eye on you, hugs Janie. [/QUOTE]
 
Hi Janie,
 
Nice to meet you - (where are you??)
 
I know there are plenty of people who don't get any relief from AP - but I am giving it a shot.  I am one of the lucky ones that knows exactly when I got PRA and what sparked it off, as well as having Lyme in the background.  If it doesn't work I will be very very dissapointed because I will have to resort to the heavy meds that others use, but nevertheless whatever helps, helps & if that is the traditional medications then so be it, I just had to give this a shot.
 
Apart from my numbers going up it has been a long time now since I flared and that extreme pain is a distant memory right now.
 
I also know I started having my other medical problems when the PRA started and am thinking it is all entwined . . . but having said that, I am not a doctor I am a patient, so I really don't know what's going on . . . I only know that I am not prepared to take medication for a condition just in case I might get it in the future . . . that doesn't make sense to me, so I am not even considering that yet.
 
If the symptoms of my PRA are easing (which they have) and the flares are further apart (which they are) my guess is that it is working at the moment . . . what happens in the future is anyones guess.
 
Even though it didn't work for you, thank you for your support.
Maz
 
 
.
justsaynoemore2009-06-17 16:15:26[QUOTE=janiefx]Hi Maz, I went through the programme that you are with the same Drs, I stayed in hosp for 3 weeks, and I have to say after 3 years on it, I found it didn't work for me, lovely Dr though and the Naturopath Lynn very thorough.  I wish you luck, at least they are keeping an eye on you, hugs Janie. [/QUOTE]
 
Hi Janie,
 
Forgot to ask you -
 
1   Did you do only AP or were you on other meds as well???? (before abx, during abx)
 
2   Why were you in hossie ???
 
3   Plus - what to you take now ???
 
Maz
 
Hi Cathy,
 
I am under a lot of stress - I just don't have it at the top of the list -
 
I do understand these tests are for diagnostic purposes, that is precisely why mine is being tested and retested; they (the doctor/s) want to know if it is progressing to RA, so far not, so that's good news for me.  I am aware all this is only inflammatory markers and being that I have inflammation elsewhere I have no doubt that is exacerbating the readings too, plus I was having a huge herx at the time I had the blood tests done.
 
I was really pleased when the herx pain went away & assumed that my body had adjusted to the new abx regime and had settled down - I guess what worries me is her (Dr D's) reaction, she is worried so I worry.
 
She is sending me (by mail) the paperwork to be re-tested so will have that done next week, hopefully all this is just smoke and mirrors.
 
My concern has always been that although I am on the program and am taking different abx to most whether or not I am taking enough ??? Dr D errs to the conservative side.... and from history there is no doubt in my mind that I have lyme as well -- I need to know that is being addressed too.
 
Anyway - will keep you informed as to the outcome.
Thanks,
Maz
 
 
  
 
Hi Maz, I was already on MTX, Prednisone and antiinflammatories.  Then Dr D put me on 3 different antibiotics, penicillin was one of them and some liquids that Lyn prescribed for thrush and liver etc.

I was in hospital because I lived in Queensland and Dr D wanted me there for a significant time frame to sort out what I needed.  She put me on a strict diet too.  No wheat, no sugar, no dairy!  She switched MTX for Arava and it worked really well on me but eventually I became intolerant of it with  peripheral neuropathy in my hands and feet and terrible diarrheoa.

Now I am on Rituxan, MTX, Prednisone, Oxycontin and tramal for pain.

Thanks to prednisone I am also on:  Zoton for tummy problems, lipitor for cholesterol problems, atenolol and avapro for heart problems, and actonel combi for osteoporosis.

If you need any more info I am here.  Hugs Janie.

PS I live in Hervey Bay now in Queensland.

.

justsaynoemore2009-06-17 16:15:53

.

justsaynoemore2009-06-17 16:16:22Maz-
 
Good luck to you.  Glad you have a good doctor.
Hi Dobine -
 
Glad you're doing OK and keep on the anti-inflamms - my doc says you need them until you're in remission as the microbes use inflammation like a force field and the medicine can't reach its target if you have too much inflammation.
 
Maz -
 
Don't freak out about the doc - your labs are bound to bounce as you work this stuff out of your body.  You still sound PRA (RA feels different and goes symetrical (spelling???) and I just think your doc is being proactive.
 
Janie -
 
You did AP for 3 years?  I'm confused?  Not straight AP, correct?  Not trying to be mean, just trying to figure out what you mean.  I can't believe we haven't had this convo before.  Or did we???  Sigh.
 
Jan -
 
I'm really getting into the veggie aspect of this.  Broccoli seems to be almost magical in what it can do.  I'm also watching the stores for Black Raspberries which, according to this one article I read, can turn off over 400 genes.  I'm like, what the heck???  Food can turn OFF genes???
 
Pip
PS - Cathy - great find!
 
Pip
[QUOTE=Pip!]
 
I'm really getting into the veggie aspect of this.  Broccoli seems to be almost magical in what it can do.  I'm also watching the stores for Black Raspberries which, according to this one article I read, can turn off over 400 genes.  I'm like, what the heck???  Food can turn OFF genes???
 
Pip
[/QUOTE]

You know what else is magical?

MODERN SCIENCE
Depends by whom modern science is financed.
Hi Cathy,
 
It's OK - I too only read what I think I have read, not always the whole thing ....
Yes I am trying to prevent RA happening ---
 
RF factor in the past went from zero to 60 to 16 to zero to 20 to zero - CRP is for me always around the 15-25 mark, because this is proven to be the normal range for me, (tested at hospital 2007)   Now it has jumped --- and yes I am worried it is progressing...
though I still am confused as to why I am relatively ache/pain free and feeling great right now - how is that possible when my readings are up ???
 
Received the referral for repeat blood tests to be done on Frid in the mail, so going this avo.  Fingers crossed all will be down !!  if not off I go to the joint consult....
 
Thanks for thinking of me,
Maz
 
 
[QUOTE=justsaynoemore]Maz - sorry, I wasn't paying attention to your full story and that you are trying to stop going from PRA to RA, I thought you had RA, should have read your signature :)
 
Now I see why she is worried, which of course worries you.  What have your RF factors been in the past?  I started having my primary pull my RF the past few visits and I have gone from a high of 150 at diagnosis down to normal, then popped back up into the 50s a couple of times, so it is interesting to watch in my case. 
 
Hang in there, we are pulling for you.  Cathy
[/QUOTE]

.

justsaynoemore2009-06-17 16:18:16Thank God for all the tetracyclines and macrolides (I think that is what they are called).

Amen!

For information on tetracyclines and their development:
en.wikipediaorg/wiki/Tetracycline_antibiotics

I hate to sound stupid, but what is AP?  Maybe I know of it in some other name?

CathyM

AP is antibiotic protocal...its shorthand for people who use minocycline or one of its cousins to treat RA [QUOTE=buckeye] or one of its cousins [/QUOTE]

That sounds cute!  I haven't heard it put that way, but it  makes sense.
There are a few of us working to remission using this ACR approved DMARD.
 
Pip

Cathy Marie-

There is alot of information in The New Arthritis Breakthrough by Henry Scammell and at The Road Back Foundation www.rbf.org

Feel free to ask questions if you would like.

Jan

 

Oh,

I have some questions. What percentage of people are cured or at least reach remission from AP therapy? Please post the up to date scientific studies proving the sucess of AP therapy. Also please show the medical or scientific proof of the sucess of AP for each of the catagories of rheumatoid arthritis, mild, moderate and severe. Thank yous in advance. Yous have mentioned that the ACR (American College of Rheumatology) accepts minocin as a approved DMARD for the treatment of rheumatoid arthritis. Can yous please post the ACR (American College of Rheumatology) recomendation for the use of minocin (AP therapy) that they just updated July of last year? Thank yous in advance. If yous have trouble finding it, just ask, I will be very happy to post it in it's entirety, all recomended therapies from the ACR for all rheumatoid arthritis. Yous are welcome. Pip, when you say that there are a "few of us working to remission using this ACR approved DMard"... you are the only person on this forum with palindromic arthritis that claims to be reaching remission? It seems that it would be hard to tell if a person with your disease, palindromic arthritis is actually reaching remission or whether the disease has just become dormant as is the case with palindromic arthritis. Of course I'm not quite as informed about palindromic arthritis as I am about rheumatoid arthritis, but that's because I have rheumatoid arthritis, not palindromic arthritis. Probably if I had palindromic arthritis, I would post at the palindromic arthritis forum, you know, then I would be informing and learning about my disease from and for people with the same disease. Of course, I'm not going to go to the palindromic arthritis forum and try to tell them about curing their disease when I don't have their disease, that would seem almost stupid. Of course, I could always go there and not tell them that I have rheumatoid arthritis and everyone would just assume that I have palindromic arthritis since I would be at the palindromic forum. Of course that sounds even more ridiculus. Hey, if yous need me to help with gathering information, just ask, I'll be more than happy to post the truth.

LEV

PS I asked on another thread after Jan Lucinda said we should go to roadback for information, I asked if roadback allows stories of AP failures. There have been members here that said that they had posted that the AP didn't work and one actually claimed irreversable joint damage while trying it. I think it was the member that Pip told that member she hadn't followed the exact protocol, and told her it was very hard to follow it. No more hugs either, right? Anyway, those members said that roadback had actually deleted their posts about the AP not working. I cannot find any stories at roadback where the AP didn't work. Does roadback not allow such posts? Certainly yous wouldn't approve of this site not allowing for failure stories about traditional dmards and biologics, right? Seems it would be too one sided to be a site that would be of any worth, right? That would make it seem like it were agenda driven rather than truth driven. And I'm sure even yous will agree, that wouldn't be right, right? Anyway, I look forward to the information asked for. Hope yous are having a good day.

LEV
[QUOTE=levlarry]
PS I asked on another thread after Jan Lucinda said we should go to roadback for information, I asked if roadback allows stories of AP failures.  I cannot find any stories at roadback where the AP didn't work. Does roadback not allow such posts? Anyway, I look forward to the information asked for. Hope yous are having a good day.

LEV
[/QUOTE]
 
Why don't you ask that on Roadback?  How would anyone here be able to know the answer?
[QUOTE=Suzanne][QUOTE=levlarry]
PS I asked on another thread after Jan Lucinda said we should go to roadback for information, I asked if roadback allows stories of AP failures.  I cannot find any stories at roadback where the AP didn't work. Does roadback not allow such posts? Anyway, I look forward to the information asked for. Hope yous are having a good day.

LEV
[/QUOTE]
 
Why don't you ask that on Roadback?  How would anyone here be able to know the answer?
[/QUOTE]
 
I thought of someone who still posts regularly.  Search Joe M's posts - his wife failed AP and is in remission on Humira.
 
Her story is still pretty amazing in my opinion.  Remission and he posts she is able to go weeks without her Humira injections now and that is her only med.
Suzanne,

Seriously.
[QUOTE=levlarry]Suzanne,

Seriously.
[/QUOTE]
 
?????????
 
And look 'up' I think we were posting at the same time, so which post was 'seriously' about?
Suzanne,

All posts and stories are allowed at this forum, whether pro or con any medicine. My question was whether roadback allowed ra sufferers to post their journey at roadback if they failed with AP therapy. I'm not going to get an honest or serious response either or. If yous are going to allow questions but only certain questions, yous should let everyone know which questions we can ask. That would save us all wasted webspace.

LEV
[QUOTE=levlarry]Suzanne,

All posts and stories are allowed at this forum, whether pro or con any medicine. My question was whether roadback allowed ra sufferers to post their journey at roadback if they failed with AP therapy. I'm not going to get an honest or serious response either or. If yous are going to allow questions but only certain questions, yous should let everyone know which questions we can ask. That would save us all wasted webspace.

LEV
[/QUOTE]
 
To me, an obvious difference is that this an arthritis forum and Roadback is a forum for those treating rheumatic disease with antibiotics.
 
But the only place to officially find out the specific policies of what can or can't be posted on Roadback is by asking them or reading the rules on the site.
 
I'm curious if you think it would be accurate for a poster on Roadback to answer questions about the policies of this board? 
 
 
[QUOTE=Suzanne]
 
I'm curious if you think it would be accurate for a poster on Roadback to answer questions about the policies of this board? 
 
 
[/QUOTE]

Why not? Surely there are people who belong to both boards and would be able to contrast and compare them.
Suzanne,

I just figured that those that are members and especially those that constantly try to send members there, would either have that information or get that information. I doubt very much that the organization would actually post the fact that they will delete any and all posts without pro antibiotic content. It seems that if we were to have a study here, and consider all of those that have tried AP, the actual percentage of failure is quite high. Therefore I would have to consider there to be a failure rate at the roadback. Do you read of any failures? I think that if they are not posting failures then somewhere something is not quite right, at least in Denmark? And Suzanne, I'm not trying to be mean or give you grief. I just believe that every medicine has a failure rate. The questions I ask, at least in my mind seem like good questions. If you are not reading about failures at the roadback, doesn't that seem at least somewhat unrealistic to you? Here at AI, there have been posts (many) about the failure of each and every traditional medicine used for RA. Certainly roadback would have the same or something is not quite right at roadback also.

LEV

See, Lev, your problem is not only are you lazy, but when people do your leg work for you, your brain fog doesn't allow you to remember what you've been told.  Tsk tsk - I see Rituxin didn't fix that for you.

I'm going to type this veeeery slowly because if you read it slowly, it might sink in thru your Rituxin fog.  My success rate for helping people with AP is 90% for PRA peeps and about 75-80% for regular RA peeps.  Pretty much twice the rate for the biologics.  Imagine that.  This has been posted here multiple times, but, alas, you can't remember that. 
 
Another thing you can't remember is Dr. Brown did a 'sink or swim' AP - either you lasted thru the herxes or you didn't.  AP is STRICTLY an antibiotic.  It's not even a probiotic and an antibiotic.  It is NOT AP if you use another DMARD with it - and that includes GoGo's wean from mtx.  It's not AP's fault if somebody didn't do AP because they were using the other meds too.  That supposed AP failure is the result of the suppressent.  Sorry if that bothers you - yet another biologic failure.  At best, with using both, you'll get a holding action.  In reality - it will fail.  That's the NATURE of a suppressent. 
 
Why don't you go to the Roadback and look up my 'success' story.  Tell me what you think of it, will ya?
 
LOL
 
Pip
YOUR success rate...really Pip...how many people have you treated [QUOTE=JasmineRain] [QUOTE=Suzanne]
 
I'm curious if you think it would be accurate for a poster on Roadback to answer questions about the policies of this board? 
 
 
[/QUOTE]

Why not? Surely there are people who belong to both boards and would be able to contrast and compare them.
[/QUOTE]

As lev, said, seriously? LOL.  His question was in regard to what was allowed to be posted.  As an observer, it looks like you can post anything to me.

Contrast and compare?  For what purpose?  But I will humor you.

Both boards are alike because they are support forums.
The boards are different because one is a general forum and one is intended for those using or wishing to learn more about a specific treatment protocol.
One has a white background.  One has a green background.  Both have a pm feature.

And JoeM has posted about his wife's AP failure more often on Roadback than on AI, but he has posted on both boards.
[QUOTE=levlarry]Suzanne,

I just figured that those that are members and especially those that constantly try to send members there, would either have that information or get that information.

LEV

[/QUOTE]

If someone asks about AP, it seems like it is best to send them to Roadback to me.  I'm sorry if you disagree. 

I do see where people have failed, struggled, added traditional meds, etc. posted on Roadback, Lev.  Anybody who goes there will see that from time to time.  I posted there while my daughter was on mtx and AP.  Her AP dr. was the one who said we didn't have a choice!

I'm very sorry if that board bothers you, but I'm not sure what I or anybody here is supposed to do about that.  I have found it helpful, just as I find this board helpful.
[QUOTE=Pip!]  My success rate for helping people with AP is 90% for PRA peeps and about 75-80% for regular RA peeps.  Pretty much twice the rate for the biologics.  Imagine that.  This has been posted here multiple times, but, alas, you can't remember that. [/quote]
As a new member of this forum and thus not yet familiar enough with the search function to find other topics and posts can you please tell me where your practice is located? Are you a rheumatologist or a primary care physician? What is your patient base? Over how long a period of time did you monitor your peeps? What criteria are you using to determine your success rate?

Thanks in advance for taking the time to answer these questions, Shug
Buckeye and the new troll -
 
I am not a MD - yet - LOL.  And I posted "helping with".  This is the real problem we (and yes I said we) have with non-APers.  They take a part of the sentence and twist it so they can turn it into something that was NOT said.  Exactly what GoGo said - a straw arguement.
 
I've helped people from all over the world.  Isn't the Internet wonderful?
 
Pip
[QUOTE=Pip!]Buckeye and the new troll -[/QUOTE]
Troll, say eh? I understand the use of the term but am stumped by your immediate reaction to being questioned.

I have been called many things, however this is the first time I have been tagged as a troll. I will add that to my list!

I asked those questions not as a troll, but as someone who spent 18 months on AP therapy and failed to have the success you credit.

"Helping people all over the world" does not answer, in any meaningful way, the questions I asked. However, after having read through some of the other topics I am beginning to get the picture.
"Oh the games people play now,  Every night and every day now. . .
 
Confused
ROFLMAO...IS THIS THREAD FOR REAL?????LOLwhat non Aper's do is question clearly exaggerated claims of AP participants Pip.  People want facts not your self indulgent stats.   The only person you can definitivly speak for is yourself.  Your ego is far too involved in these discussionPip,

I remember when you previously posted the results of the "your"study by "you" about the people that "you" have cured from immune diseases. I also remember my response to you and here it is again. Don't you ever get embarrassed? "Your study, your peeps." Outrageous. I also remember that as my step kids were growing up and I asked them a question, they would quickly give me a straightforward answer if they were being honest. If they were giving me a dishonest answer, they would beat around the bush, get mad at me, do a little nasty two step and a dirty dosie doe and still try to not give me an answer. The truth comes so easy, it just rolls of the tongue Pip, it's just that simple and that's simple stuff.

Pip, I am not interested in "your" story at the "roadback". Talk is cheap, especially from a cheap talker. In my opinion, you have been misleading and deceitful at not just this forum but also at the palindromic forum. I will say that at the "roadback" there are not many members and new APers that stay for long. They come and go faster than casheirs at the local fast food establishment. Only a handful are long and constant posters and most of that small group are not RA sufferers. I also found that roadback does not want posts concerning failures. This is from roadback concerning posting on the bulliten board:

"Keep the discussion focus to antibiotic therapy and supporting measures or information that will enhance the therapy and one's success with it."

If all sides of truth about a medicine and the effectiveness are not allowed, then there is certainly a biased agenda and that in itself is reason for great alarm. Simple stuff. How would you APers like it if the fda only allowed the sucessful side of a traditional RA drug? Preposterous to even consider.

LEV


Thumbs%20UpPip and Suzanne-
 
Great postsThumbs%20Up

Sorry Spelucker - it's just you joined this board and then immediately went to the AP thread and then the Medical Herxing one - and with 2 posts to your credit - and NOT one introducing yourself to the others here - and no stops at any of the other threads - you can see why some might think you a troll.  Such as myself.  We all look forward to finding out more about you. 

Lev - thanks AGAIN for bringing this topic to the top - we APers appreciate all the work you do for us! 

Also - Chicken Lev - I'm leaving on my terms - not yours.  Keep showing what a twit you are and I might think you're going to miss me.  LOL  And I'll stay!  Your choice.

Pip

Pip, I am sorry but your attitude is discrediting you. I am very bothered by the lack of regard and respect for people and their doctors I have read on this thread.

Doctors are highly trained and skilled individuals, there is a extremely small (tiny) percentage of practicing doctors who are not so hot. But you will not find them practicing at large hospitals and teaching universities, really these people are trained. I am put off by the superior attitude.

I am not put off by AP, alternative methods have been around forever, but to be so down on conventional treatments conveys desperation for acceptance of your treatment choice. I would say, the proof is in the pudding. If it works , great.

The other thing I think is dangerous is practicing medicine without a license over the internet. I think it is perfectly fine to discuss treatments and offer support and advice, but any medicine being natural or what ever should be discussed with a personal licensed physician. I am bugged by the lack of respect for doctors.

IHeart my doctor . Bonus is he is handsome....... I also married a doctor....he is a dentist and would never try to treat my RA, even though he went through a rigorous medical schooling.

Well,

I really didn't expect to get the answers to my questions. It seems to me that my questions to this AP group are just normal questions that anyone interested in AP therapy would like answered. The group doesn't want to answer because the honest answers would conflict with what they have been posting.

Pip, did you ever consider that maybe Spelunker actually believed that you are an MD? With the way you post, people could believe that you are an MD. Your studies, the people you've cured. Why wouldn't Spelunker think that you are a doctor. Certainly Spelunker wouldn't think that you are just some mentally challenged person posting as if you are a doctor, right. Spelunker doesn't know you. Any new member has the right to post at any thread he or she wants, with or without introducing themselfs, with or without hugs and kisses. They certainly don't have to bow to you and shouldn't have to be concerned about being attacked by you for asking a question. Pip, if you are leaving,and you walk out the door, don't blame it on me for you leaving the door open for when you come back in. You have no place to go. Palindromic Forum? Done with you. I wouldn't miss you but whether you stay or leave doesn't bother me either. All I ask is the same I've always asked. When you post on this forum, post honestly and without deceit. That's my problem with you is your deceit.

LEV

What is the Difference Between a Pathological, a Compulsive, a Chronic, and a Habitual Liar?

Pathological Liar

A pathological liar is usually defined as someone who lies incessantly to get their way and does so with little concern for others. Pathological lying is often viewed as coping mechanism developed in early childhood and it is often associated with some other type of mental health disorder. A pathological liar is often goal-oriented (i.e., lying is focused - it is done to get one's way). Pathological liars have little regard or respect for the rights and feelings of others. A pathological liar often comes across as being manipulative, cunning and self-centered.

Compulsive Liar

A compulsive liar is defined as someone who lies out of habit. Lying is their normal and reflexive way of responding to questions. Compulsive liars bend the truth about everything, large and small. For a compulsive liar, telling the truth is very awkward and uncomfortable while lying feels right. Compulsive lying is usually thought to develop in early childhood, due to being placed in an environment where lying was necessary. For the most part, compulsive liars are not overly manipulative and cunning (see, Pathological Liar), rather they simply lie out of habit - an automatic response which is hard to break and one that takes its toll on a relationship (see, how to cope with a compulsive liar).

The terms Habitual Liar and Chronic Liar are often used to refer to a Compulsive Liar.
sTink - I cannot change what happened to me and my husband when we tried to get help.  Those docs are real and they are practicing medicine in a well respected Univeristy.  They do not have my respect as they haven't earned it.  If you really want to see some horror stories, hang on the Roadback. 
 
Lev -
 
No, I didn't think that for a moment because of the forum home page when she joined.  Since you are so fogged in, I'll spell it out for you - the APers stayed on ONE thread as a place to post the ups and downs of getting this beast under control.  Thanks to your attacks here on the AP thread there are going to be AP threads all over AI.  Again, thank you for all the work you do for us!
 
Pip
[QUOTE=Pip!]

Sorry Spelucker - it's just you joined this board and then immediately went to the AP thread and then the Medical Herxing one - and with 2 posts to your credit - and NOT one introducing yourself to the others here - and no stops at any of the other threads - you can see why some might think you a troll.  Such as myself.  We all look forward to finding out more about you. [/Quote]

Re: my joining and going "immediately" to one thread or the other, so what? I went to the topics that with the most activity, full stop.

Now, that we have gotten my foibles out of the way, can you please answer the questions, as someone who help others with AP? What is your patient base? Over how long a period of time did you monitor your peeps? What criteria are you using to determine your success rate?


I have tried all coventional methods of treatment , nothing but terrible side affects, more ill health due to allergic reactions and no let up with pain so I am now going to try AP.. but thats just me and I wouldnt try and scare anyone off of these meds...neither should anyone have the right to scare anyone off of AP....whats good for one isnt always good for another....Lev you are so against AP and promote your wonderful conventional meds but if they are so great then why dont they work for everyoneWhat is wrong with you people? Because I or others ask reasonable questions we are attacked rather than given the honest answers to reasonable questions. I am against dishonesty and deceit, Pincusion, do you know what that means? I have many times mentioned that my RA doctor has prescribed Minocin for mild cases of RA. I certainly rely on the American College of Rheumatology's recomendations for RA therapies and here they are from their July 2008 updated recomendations. So here is the answer to one of my questions:

Methotrexate or leflunomide monotherapy should be started for patients with all disease durations and for all degrees of disease activity irrespective of poor prognostic features.

Hydroxychloroquine monotherapy is recommended for patients without poor prognostic features, with low disease activity, and with disease duration not greater than 24 months.

Minocycline monotherapy is recommended for patients without poor prognostic features, with low disease activity, and with short disease duration.

Sulfasalazine monotherapy is recommended for patients with all disease durations and without poor prognostic features and includes those with all degrees of disease activity.

Methotrexate plus hydroxychloroquine is recommended for patients with moderate to high disease activity regardless of disease duration or poor prognostic features.

Methotrexate plus leflunomide is recommended for patients with intermediate or longer disease duration (≥ 6 months), with high disease activity irrespective of prognostic features.

Methotrexate plus sulfasalazine is recommended in patients with all disease durations provided they have high disease activity and poor prognostic features.

Hydroxychloroquine plus sulfasalazine is recommended only for patients with intermediate disease duration (6 - 24 months) and high disease activity but without poor prognostic features.

The triple DMARD combination of sulfasalazine, hydroxychloroquine, and methotrexate is recommended for all patients with poor prognostic features and moderate or high levels of disease activity, regardless of disease duration.

If yous would spend as much time in answering reasonable questions, yous would have some credibility. All I did was ask some questions. There is something wrong with yous.

LEV



[QUOTE=levlarry]What is wrong with you people? Because I or others ask reasonable questions we are attacked rather than given the honest answers to reasonable questions.

If yous would spend as much time in answering reasonable questions, yous would have some credibility. All I did was ask some questions. There is something wrong with yous.

LEV



[/QUOTE]

I tried to answer, but none of my answers satisfy you, so what more can I do?

No known cause, no cure, everybody reacts differently to the meds....what can you do, Lev?  You can only do the best you can.
Suzanne,

I must have somehow missed the answers to my questions. I will ask  them again and you can show me where you answered them, thanks.

What percentage of people are cured or at least reach remission from AP therapy? Please post the up to date scientific studies proving the success of AP therapy. Also please show the medical or scientific proof of the success of AP for each of the categories of rheumatoid arthritis, mild, moderate and severe. Thank yous in advance. Yous have mentioned that the ACR (American College of Rheumatology) accepts minocin as a approved DMARD for the treatment of rheumatoid arthritis. Can yous please post the ACR (American College of Rheumatology) recommendation for the use of minocin (AP therapy) that they just updated July of last year? Thank yous in advance. If yous have trouble finding it, just ask, I will be very happy to post it in it's entirety, all recommended therapies from the ACR for all rheumatoid arthritis.

I posted the ACR's recomendations so don't worry about that one but if you could point me to the answers to the other questions I would appreciate it. Thanks.

LEV
Tink-
 
Why don't you read the section on Minocin in Schlotzhauer's Living with Rheumatoid Arthritis.   She says it is a safe and effective treatment supported by research. In spite of this, many rheumatologists say it is ineffective which makes me question their professionalism.   DOCTORS SOMETIMES DISAGREE.   Denying a patient a safe and effective treatment is unprofessional to me.
[QUOTE=levlarry]Suzanne,

I must have somehow missed the answers to my questions. I will ask  them again and you can show me where you answered them, thanks.

What percentage of people are cured or at least reach remission from AP therapy? Please post the up to date scientific studies proving the success of AP therapy. Also please show the medical or scientific proof of the success of AP for each of the categories of rheumatoid arthritis, mild, moderate and severe. Thank yous in advance. Yous have mentioned that the ACR (American College of Rheumatology) accepts minocin as a approved DMARD for the treatment of rheumatoid arthritis. Can yous please post the ACR (American College of Rheumatology) recommendation for the use of minocin (AP therapy) that they just updated July of last year? Thank yous in advance. If yous have trouble finding it, just ask, I will be very happy to post it in it's entirety, all recommended therapies from the ACR for all rheumatoid arthritis.

I posted the ACR's recomendations so don't worry about that one but if you could point me to the answers to the other questions I would appreciate it. Thanks.

LEV
[/QUOTE]

Why is that my job?  I don't care about those things - if it only works 1% and my daughter is the 1%, that is what I care about.  None of the meds work for everybody, and the ones that work for people don't always work forever.  If one is working, why would someone be looking for reasosn to say it shouldn't be??????  Stay on it as long as you can.  

I thought one of your questions was about failures being posted on RB, remember?  

If humira or enbrel or gold injections or plaq or any of the others worked for me Id be on them as they were the ones i tried first...If i get some relief from AP then I will be over joyed, if it doesnt then i will be still searching.

Lev im not sure where you keep coming with this dishonesty and  deciet thing..its getting old and tired and you accuse everyone of it .

Tink-
 
By the way, my niece's cousin is a pediatric dentist.  There are different treatments by dentists.
Jan Lucinda,

Many people, including doctors make claims of studies or effectiveness of cures. Just read some of the arthritis cures in the google ads to the left. We would all be cripples if we relied on what people say or write in a book rather than rely on results of fda approved clinical trials. It seems like so many times myself and others have asked to see credible research and clinical trials and instead we are attacked for asking for such reasonalbe requests.

Suzanne, why get mad at me, you are the one that said that you had answered the questions I asked:

"I tried to answer, but none of my answers satisfy you, so what more can I do?"

I don't see where you answered them. You don't have to get mad at me if you can't answer my questions. That's not nice.

Pincusion, could you be more specific about what you mean about me being dishonest and deceitful? I doubt it. You seem to be a very qualified subject for AP therapy.

LEV

Lev you talk in circles going round and round and round, careful as you might fall over.
Im no where near qualified on AP, I never said I was, not once have i given any evidence that I know anything about it other than what i have been told by my doctors over the last few months, are you halucinating now....
[QUOTE=levlarry]

Suzanne, why get mad at me, you are the one that said that you had answered the questions I asked:

"I tried to answer, but none of my answers satisfy you, so what more can I do?"

I don't see where you answered them. You don't have to get mad at me if you can't answer my questions. That's not nice.



LEV

[/QUOTE]

Who is mad?  Not me!  I was wondering if you wanted to play tomorrow, too?  I'll need to start later because I have to work, though.

I thought we were talking about the questions you had about Roadback.  I didn't know we were on another set of questions now - the ones you already have your answers to, right?


Pin,

You just like being in a group when it finds someone to attack. It's just that simple. That's just your history, and that's the truth.

LEV
I think Lev has been cold filtering a little too much again. Confused Lev grow up honey...I did im not a school anymore i dont run around in a group, i support one....BIG DIFFERENCE.Suzanne, no offense but you didn't answer my question about roadback, you told me to go ask them. I don't want to play with you, you don't play nice.

Pincusion, your help is here. You and Joonie were the big part of attacking and putting out other members personal information, so here's your "sista".

Hey Joonie, whose personal information are you and Pincusion working on now. Did yous feel real good about posting other members personal information. And Joonie, I don't do pain meds and I don't act like I have a new pain and disease and sickness every weekend to keep from doing the housework or watching the kids so I can lay in bed because I was up all night watching the computer. Or going to Urgent care hoping for more pain meds. It's amazing that you can spend so much time trying to gather other members personal information for the sake of posting it on the www for group vengance, but you are too sick to do the things you should do like housework and being a parent. Hey Joonie, have you broken into any private message boxes lately, oh that's right, you got caught and the forum is no more, awww,duuuuuude, what a shame. You certainly can understand why I don't like you right Joonie? An Admin at a forum with the ability to look into forum members private message boxes like you were, and crosses that line and opens other members PM boxes for the purpose of finding out what the members are saying about them is not someone I want as a friend. Someone that posts other members personal information, real name, address and phone number and have people call them 24/7 like you and Pincusion did, terrorizing those members families, will never be my friends, ever. I strongly suggest Joonie, that you leave me alone.

LEV

Errrrr....Lev have you not noticed something......I live in the UK...if Im phoning half way round the world I must have a HUGE phone allowance. I have only ever called the USA 5 times tops...twice to New York when we were booking our Holiday, twice to Chicago to friends of ours and once I phoned an old member on here Grammaskittles to see how her knee op went. Im not in the habit of harrasing peoples families so get your info straight you arsehole. I did look into a member on here who was acting in a lewd disgusting racial way, as i was in support of a black member who was severly chased away...I had my nephew look into their real identity as she was going from site to site being digusting and rude.....I even chatted to Jonie about it...the person left this site and other sites and the crap stopped until you bought it all up again.....SO GET YOUR STORY RIGHT LEV. [QUOTE=levlarry]Suzanne, no offense but you didn't answer my question about roadback, you told me to go ask them. I don't want to play with you, you don't play nice.


LEV

[/QUOTE]

I answered the question I could answer - AP failures are posted on Roadback, check JoeM's posts regarding his wife as an example. Then I recommended the place I would go if I needed the answers to your other questions, since I couldn't answer them.  What's not nice about that? 
I hate to say... but I never broke into anyones PM boxes. It was actually a copy of all the PMs that were sent via the message board since it was started and were stored in order of date on MySQL file on a MySQL database. You have to download the MySQL files for back-up purposes, when the site crashes. It is automatcally backed-up every so often.
 
The message board in question was not going to be launched again. I also was asked by someone else who started another MB to give them the list of all the old boards members so they can contact them, and let people know where most moved to. Another reason the MySQL file was downloaded. Everything was stored within that database.
When I read those PMs I was looking for my PMs that had people's email addy's and infomation and links I saved in my PM inbox. I wanted those. So... when I did a search for my username... it showed up EVERYTHING with my name in it. I cannot help that a member was bad talking about me and kept the PMs!
 
Whatever Lev!
 
I am now 2 weeks past due on my Remicade infusion. Which means I am swelled in all my joints including my spine. I am not making any of this sh*t up... GOD... I wish I was.
 
Do you even know what it feels like to be 29 and not even feel your age or do the things you want to do and long to do. I do not even have sex anymore. There now... I said it! I am trying to do things that my body hinders me from doing.
 
Last I remember... I was 25 with a newborn and a 6 year old and my house was spotless. Now... It is like I am in a nightmare. I do not remember much of the last 4 years of my life. It is sad. I do not even have rememories of my own sons toddler years. It makes me cry because I cannot remember things. It is not because I have not be paying attention or sleeping my life away, or not being a good parent. It is because I have no memory.
 
I like how you take the jab at saying I am horrible parent, because you know that is my soft spot. Well... I hate to tell you, today... it does not bother me, because I know today and all this week that I have been a good parent. Now... maybe if you had said I was a bad daughter, wife, or sister, you could have upset me, but you didn't.
 
I love my mommy, and she is the only person I have that knows what I go thru. She was there when this all started. So... for me not to "feel" well enough to go 10 mins down the road to go see her and spend as much time as I can with her, proves that I am not doing well RA wise. I did not even talk to my mom until almost a week after she got out of the hospital. It was not that I did not care, it was that I was in horrible pain and taking the pain meds and had a sinus infection.
 
Lev, I never wanted to be your friend. You are not friend material. You have way too many mood swings and hit below the belt, like a bitch ass pansy you are.
 
Oh and I never posted anyones personal information on the board. And it only took me 4 hours to come up with what I got and that was on one of my good days.
[QUOTE=Suzanne] [QUOTE=levlarry]Suzanne, no offense but you didn't answer my question about roadback, you told me to go ask them. I don't want to play with you, you don't play nice.


LEV

[/QUOTE]

I answered the question I could answer - AP failures are posted on Roadback, check JoeM's posts regarding his wife as an example. Then I recommended the place I would go if I needed the answers to your other questions, since I couldn't answer them.  What's not nice about that? 
[/QUOTE]

[quote]Posted: Sat Feb 14th, 2009 11:04 am   
   

[quote]Maz wrote: "I'd therefore just gently remind everyone on this thread that people are arriving to this support forum every day and are very unwell, simply looking for hope."[/quote]

In light of Maz's words, I now realize this board is not the place to disseminate accurate information, rather it is a pollyannaish destination for those wishing to engage in groupthink.  I truly hope you all find peace and relief to what ails you.

Have a great weekend!
Joe

[/quote]

Is that the JoeM?
[QUOTE=JasmineRain] [QUOTE=Suzanne] [QUOTE=levlarry]Suzanne, no offense but you didn't answer my question about roadback, you told me to go ask them. I don't want to play with you, you don't play nice.


LEV

[/QUOTE]

I answered the question I could answer - AP failures are posted on Roadback, check JoeM's posts regarding his wife as an example. Then I recommended the place I would go if I needed the answers to your other questions, since I couldn't answer them.  What's not nice about that? 
[/QUOTE]

[quote]Posted: Sat Feb 14th, 2009 11:04 am   
   

[quote]Maz wrote: "I'd therefore just gently remind everyone on this thread that people are arriving to this support forum every day and are very unwell, simply looking for hope."[/quote]

In light of Maz's words, I now realize this board is not the place to disseminate accurate information, rather it is a pollyannaish destination for those wishing to engage in groupthink.  I truly hope you all find peace and relief to what ails you.

Have a great weekend!
Joe

[/quote]

Is that the JoeM?
[/QUOTE]

Yes, Jas (did you really not know that?).  The uncensored, undeleted post of JoeM.  There are many, many more.  You can check the archives, too.
No, Suzanne, I've not frequented the RoadBack.  I just went over there and searched for "Joe M" and I found a few posts where people don't seem to like what he's saying.

Perhaps not traditional censorship... but if AP has failed someone, and they feel that their news is not welcome, they're not going to continue to post there.

If I belonged to an AP support forum, and AP didn't work for me, I wouldn't continue posting there.
[QUOTE=JasmineRain]No, Suzanne, I've not frequented the RoadBack.  I just went over there and searched for "Joe M" and I found a few posts where people don't seem to like what he's saying.

Perhaps not traditional censorship... but if AP has failed someone, and they feel that their news is not welcome, they're not going to continue to post there.

If I belonged to an AP support forum, and AP didn't work for me, I wouldn't continue posting there.
[/QUOTE]
 
People disagee on that board like they do here.  Search Vitamin D next time you visit Roadback.
 
The accusation made was that they censor and delete.  I don't think they do, and Joe's post came to mind as an example.  Welcome/not welcome - I welcome Joe's comments, maybe others don't.  Joe has been posting there longer than I have, so I'd say he feels welcome!  
 
I agree with your last line, but to each his own. 
[QUOTE=Pip!]
sTink - I cannot change what happened to me and my husband when we tried to get help. 
[/QUOTE]
 
Please call me Tink..or Tina
 I am sorry you had such a bad experiance, but does that translate that all or "most" Doctors are bad?
Hi people,
 
Just thought I would let you in to the good news --- my results came in last night ..
 
CRP is 18 (was 53) RA is 62 (was 260) ---- I do believe that is a dramatic drop !!
 
I am stoked,
Maz
 
ps - any posts purloined from the RB site & posted here signed Maz isn't me. 
 
Maz-aust2009-03-10 16:44:23Just poking my head in to address that poor excuse for a human being Lev......
 
Lev. I am the one who posted personal info on Audrey, ( and I'd do it again ) leave off the others and get stuck into me if you want mate but geez.....give it a bloody rest already! You are like a broken frickin record. Find something else to occupy your one track mind. I have never, in all my 14 years of forum posting, seen/read someone as demented and one eyed as yourself. Confused
 
Still, I guess you are a source of amusement. We all have to be grateful for small mercies huh?
 
Lyn  ( part of the christened by you... 'Filth'  group)
[QUOTE=JasmineRain]No, Suzanne, I've not frequented the RoadBack.  I just went over there and searched for "Joe M" and I found a few posts where people don't seem to like what he's saying.

Perhaps not traditional censorship... but if AP has failed someone, and they feel that their news is not welcome, they're not going to continue to post there.

If I belonged to an AP support forum, and AP didn't work for me, I wouldn't continue posting there.
[/QUOTE]
 
LMAO - you people don't like what we say and you don't see it as censorship...OMG...but if the same thing happens to you THEN it's censorship???
 
Joonie - don't answer that twit...and you were hilarious on the cold filtering...
 
Spelunker - wait for the book.
 
Lev - you twit
 
Maz - thanks for pointing out there are 2 Maz'es on the RB and that wasn't you.  Lev and Anna/Mabus/whoever won't remember that but, what the heck!  Also, fab about the labs.  I told you it was only a herx...what's your doc saying.
 
Tink - 10 out of 11 doctors IS most to me.  I think it's great that a few of you got 'lucky' with somebody good the first time or two out.  Think of that when the next newbie posts some horror story.
 
Pip
[QUOTE=Pip!]Spelunker - wait for the book.[/quote]
If you refuse to answer simple, direct questions on what you post then any "book" will hardly be worth the effort to read.
Your inability to respond in a meaningful way discredits you and your success rate.
What the?  Not again!!!!! [QUOTE=Maz-aust]Hi people,
 
Just thought I would let you in to the good news --- my results came in last night ..
 
CRP is 18 (was 53) RA is 62 (was 260) ---- I do believe that is a dramatic drop !!
 
I am stoked,
Maz
 
ps - any posts purloined from the RB site & posted here signed Maz isn't me. 
 
[/QUOTE]
 
Maz, after wading through all the bs posts by posters who should go find another thread to vent their anger at us APers, I want to say CONGRATULATIONS !!!  This is what this is all about, taking medical physician prescribed drugs to treat Rheumatoid Arthritis and having success!!!  Those labs are so fantastic!!! 
 
I know the other posters in her on AP therapy will continue to share their stories on the journey on the road back to health.  Thanks Maz, this made my day.  Take care ~~ Cathy
[QUOTE=Spelunker] [QUOTE=Pip!]Spelunker - wait for the book.[/quote]
If you refuse to answer simple, direct questions on what you post then any "book" will hardly be worth the effort to read.
Your inability to respond in a meaningful way discredits you and your success rate.
[/QUOTE]
 
in all seriousness....
 
Pip.. by virtue of avoiding real questions, you do discredit what you claim to be "the best choice" and how it works for "your peeps"
being offhanded or rude to someone new because you got off on the wrong foot is just, well...... rude and usually belies the inability to respond truthfully as requested.
You can always take it private to Spug to answer .... but your response to her on board was uncalled for.  MHO.
Maz.. I am beyond happy for you and your successes!!!  I hope it continues!!I would really like to ask for some consideration from the non-AP patients in here to stop posting on this thread, as I just discovered another one for you to use.  If you read Pip's original post, this thread is for APers to post their successes and failures. 
 
My health is on the line here.  I need this thread, you don't.  It would be very much appreciated if you don't do AP that you start a new thread for your anti-AP and other off-thread topics off this thread.
 
Thank you very much for your consideration of your fellow RAers.  Cathy
Cathy..  you know I hope for the best of health to you... and support you 150% .... best to you.

The thing is that no one, including Larry, are anti-AP.   It isn't anti-AP to point out that, despite AP'ers attempt at squashing the information, is that AP does not work for everybody.  That this medication does not have any recent large scale studies on its effectiveness.  That this medication does have side effects.  And my favorite that when someone trots out the Minocin is an approved DMARD on par with MTX...to actually correctly add the rest of the information.  Minocin is an off label use for RA..that it is recommended by the ACR as montherapy in mild early onset RA unlike MTX which is recommended in compound therapy in all degrees of RA.

It is also not anti AP to be offended when APer's act like they are the only ones who take an active interest in their health.  That somehow they are smarter than the rest of us.  Keep things real and honest and no one has any issues.   
 
Also this is an open board as so many of you have pointed out time and time again so anyone who wants can post on any thread.  If you don't want to hear any other ideas on AP go over to Roadback. 
buckeye2009-03-11 05:30:47 [QUOTE=Pip!][QUOTE=JasmineRain]No, Suzanne, I've not frequented the RoadBack.  I just went over there and searched for "Joe M" and I found a few posts where people don't seem to like what he's saying.

Perhaps not traditional censorship... but if AP has failed someone, and they feel that their news is not welcome, they're not going to continue to post there.

If I belonged to an AP support forum, and AP didn't work for me, I wouldn't continue posting there.
[/QUOTE]
 
LMAO - you people don't like what we say and you don't see it as censorship...OMG...but if the same thing happens to you THEN it's censorship???
 
[/QUOTE]

I've never participated in your roadback forum; I can't personally say if they practice censorship or not.  I've never made a claim about censorship over there.  But it does seem that "Joe M" was warned by someone named "Maz" that a "line in the sand" would have to be drawn concerning the anti-AP information he posted, specifically because he was scaring newcomers with the facts.
[QUOTE=levlarry] Suzanne, no offense but you didn't answer my question about roadback, you told me to go ask them. I don't want to play with you, you don't play nice.Pincusion, your help is here. You and Joonie were the big part of attacking and putting out other members personal information, so here's your "sista".Hey Joonie, whose personal information are you and Pincusion working on now. Did yous feel real good about posting other members personal information. And Joonie, I don't do pain meds and I don't act like I have a new pain and disease and sickness every weekend to keep from doing the housework or watching the kids so I can lay in bed because I was up all night watching the computer. Or going to Urgent care hoping for more pain meds. It's amazing that you can spend so much time trying to gather other members personal information for the sake of posting it on the www for group vengance, but you are too sick to do the things you should do like housework and being a parent. Hey Joonie, have you broken into any private message boxes lately, oh that's right, you got caught and the forum is no more, awww,duuuuuude, what a shame. You certainly can understand why I don't like you right Joonie? An Admin at a forum with the ability to look into forum members private message boxes like you were, and crosses that line and opens other members PM boxes for the purpose of finding out what the members are saying about them is not someone I want as a friend. Someone that posts other members personal information, real name, address and phone number and have people call them 24/7 like you and Pincusion did, terrorizing those members families, will never be my friends, ever. I strongly suggest Joonie, that you leave me alone.LEV[/QUOTE]



This is probably the most horrible post by you to date. Even the ones to me do not top this. You know Lev, one way to get better (physically) is to try to unload some of the hatred and anger. You will be surprised at how much better you begin to feel. These two emotions will keep you down and feeling much more than just emotional pain. You have obviously had a hard life and even harder since your RA started. Maybe just moving on and forgetting every single thing, everyone on here has said would help. Think of it as therapy. Also, you may want to quit the cold filtering and move onto the oxys as they work better anyway, not nearly as many stomach problems. How bout it Lev?Well,

One of you APers said that if we had any questions we should just ask. Well, all I did was ask reasonable questions and instead of answers, I get attacked and still have not received the answers to the questions that I asked. What is wrong with you APers? Seriously. Why do you attack anyone that asks reasonable questions? What's wrong with yous? Start posting some scientific evidence. Yous won't even post the American College of Rheumatology's recomendation for Minocin use because yous believe that your recomendation supercedes that of the ACR. Not one of you have a medical or scientific degree even. Pip pretends to be a doctor and is good at pretending to be a doctor but that still doesn't carry any weight in the real world, only to the other AP members. This is an open forum and unlike the roadback, if you post misleading and deceitful information here, you can and probably will be called on it as is happening right now. Yous don't like it. Yous can't defend yourself with truth, and all you can do is make personal attacks against anyone that asks reasonable on topic questions in order to deflect from the having to answer with the truth. If someone here posted a study on enbrel by a marketing firm that was done in the same manner as was the minocin study, you APers would be screaming foul. The difference is that the enbrel users would also be screaming foul. All that has been asked is that yous be honest. If someone asks for scientific proof of your claims and there are none, say so. I really can't understand how roadback gets away with the deceit that they post, it's unreal. There has to be some watchdog group that will bring them to truth. I know that they have a disclaimer somewhat like all non fda approved supplements have, and I guess that protects them.

Lorster, I came here with reasonable questions and was attacked. I do have much anger toward you and Joonie and Pincusion and LyndeeNZ and Joi for yours involvement in posting of AI members personal information on the WWW allowing for the terrorism to not just those members, but to those members families, all for you and your groups sport and fun. If you had done that to my family, you would have seen my anger very close and personal. Yous live dangerous lives, but yous are so stupid, you don't realize it and won't realize it untill it knocks on your door. Too late.

LEV
[QUOTE=justsaynoemore]I would really like to ask for some consideration from the non-AP patients in here to stop posting on this thread, as I just discovered another one for you to use.  If you read Pip's original post, this thread is for APers to post their successes and failures.
 
My health is on the line here.  I need this thread, you don't.  It would be very much appreciated if you don't do AP that you start a new thread for your anti-AP and other off-thread topics off this thread.
 
Thank you very much for your consideration of your fellow RAers.  Cathy
[/QUOTE]

You know, this sounds pretty much like a private club. Perhaps the best place for a private club is NOT on a public discussion forum. If you and others on AP do not wish to address questions pertaining to AP, to bold statements made about AP, and to hubris, the best thing to do is to create a password protected forum and keep the rabble out--especially the rabble that asks questions and are not satisfied with blithe answers.

I have no problem with no longer being welcome in this thread as AP failed to achieve the remarkable success being touted as standard. However, I do have a problem with some APer's lack of consideration for what others post and for their tendency to discredit what others say, think, experience, and feel.

Best wishes for you continued success with your AP. Shug

edited for failure to correctly close a tag.
Spelunker2009-03-11 08:43:45

Thanks Cathy for bringing this back to what it was intended for - info for APers to help other APers.  We know Lev is just baiting.

Pip

PS - Babs, I knew you read this thread.  LOL

[QUOTE=justsaynoemore]I would really like to ask for some consideration from the non-AP patients in here to stop posting on this thread, as I just discovered another one for you to use.  If you read Pip's original post, this thread is for APers to post their successes and failures. 
 
My health is on the line here.  I need this thread, you don't.  It would be very much appreciated if you don't do AP that you start a new thread for your anti-AP and other off-thread topics off this thread.
 
Thank you very much for your consideration of your fellow RAers.  Cathy
[/QUOTE]

JSNM, you don't NEED this thread...sigh...'my health is on the line here'...OMG, stop being so dramatic. The truth is you can post all you want with no one putting your 'health on the line'...it's a place called the Roadback.

Oh, no hang on...that won't work will it? Because if you post at the Roadback, then you can't recruit...and that's what you guys are really here for...recruiting purposes for AP. You go for either newbies who are confused or veterans who are disappointed and discouraged.

What I do know is that you guys aren't here to support others with RA. Pip doesn't even have it and in the two years I have posted here, I have never seen her offer any emotional support to anyone in need where she can't give AP a plug. She is above all that and only posts about AP. Whatever treatment you choose there are still many commonalities about this disease and it's consequences bit I see most of the APer's do nothing to support others here on the many, many issues that we all have concerning this disease.

Which leads my train of thought back to the only reasons I can see that you are all here for, which is to recruit RA 'victims', as JSNM so nicely put it the other day.

Oh, and by the way JSNM, I am not nor will ever be an RA victim, and I find that term offensive. I am a whole complete woman who lives with the challenges of a chronic illness. I CHOSE NOT TO BE A VICTIM. And so can we all.

Oooh, hold on…bear with me…all this Rituxan in my system has hindered my ability to think and focus with the ‘fog’ of it all…

Pip, your fanatical obsession with AP is actually working against you…when you push something too hard, people shut down and are not prepared to listen. Anything that is true and right…will speak for itself…people will naturally be drawn to it without someone whacking them over the head with it like a lump of wood.

I resent your insinuations that anyone taking Rituxan is somehow slow and of lesser intelligence because they have NOT chosen YOUR way of treating their RA.

Instead we are capable of making our own decisions about our own treatment for our own bodies.

And not only are we capable, we have the right to choose, just as you do, to follow whatever course of treatment we think is best for ourselves.

No one with a life shattering and altering illness like RA is going to leave any stone unturned in researching and studying the many options that are available to them, whatever they may be.

When you can’t pick up your small child, or get your bra on and off, or make yourself something to eat or manage a shower by yourself or go to work anymore…most of us do not limit our research to any one thing.

No, we have to find a way to flex, bend, adapt and adjust so we can find our way to a new life we are being challenged to create.

Pip, the saver of RA ‘victims’ (oh, we are VICTIMS now according to JSMN)…watch as she single handily wipes out all your ability to think for yourself while she covertly wheedles herself into guru status.

You have to be kidding me!!!

Now, I am fully aware that after I say what I think here, that people are going to be upset. I simply don't care whether or not I am like or not. Some things just need to be said and someone needs to have the guts to say them. And well, whomever is upset, well..they will just have to deal with it.

Pip, the way you and some of the other Aper’s talk like you are part of some cult. Patriarchy with blind obedience is what seems to be required of a RA victim to gain acceptance.

 

Patriarchy and blind obedience are not healthy emotional or psychological states to live in. And usually people use those to gain control of a situation or person.

Once upon a time…I actually respected you, Pip. Now, I see nothing worth respecting. All I see is a pushy, bossy, judgemental, insecure woman who, for some reason, seems to think she knows how to heal everyone’s RA, if only we would let her.

Any time someone here disagrees with you…you throw a tantrum because you are NOT getting your own way which is that AP is the only way to treat RA victims and that all must agree with you on this. Stamp, stamp, stamp my feet.

And I have a theory on why every one must agree with you that AP is the ONLY way, which I will present right now.

Having watched you over almost two years I have been active on this board, I have notice that you rarely post anything but AP.

Now your reason for this is that, you claim that since you are only doing AP, that you have nothing to contribute to any other thread.

This doesn’t make sense to me at all. Regardless of which treatment any of us are using we still have enormous similarities in many issues around RA and not just which drug we are taking to treat ourselves. We all experience grief and loss that RA brings. We all experience the effect it has on our families and friends. We may even lose spouses and friends because they cannot cope with the enormity of what is happening in our RA world. We experience many similar work issues, again relating back to RA. And this illness can be severe, aggressive, life shattering and life changing.

The rest of us here, post to help others learn, grow, cope or just feel supported that there is someone else in the world that understands what they are feeling.

Pip, I never seen you support a new person by offering suggestions in general or by answering their many, many questions that are NOT medicine type related.

I have never seen you reach out to any off us here in terms of any support you could offer that is non medication related. There is an awful lot of those needs, here on this board.

After again spending time thinking about all this…the only solution I could come up with is that, since you don’t care about anything that isn’t AP, why you don’t support others as you could in an emotional sense is that you honestly don’t care about them.

Try as I might…gosh, I find that selfish.

Then through think all the above through, another question popped into my mind…

“Why is Pip here at all?”

Really, that’s a serious question. Since you’re not here to support people except if they are on AP and you could do that at the Roadback anyway, then why do you spend any time here at all? Not only to do despise our choices of treatment you also make it very clear, from your point of view, that we are not as intelligent and wise as you because we have NOT chosen YOUR treatment approach to RA. If you do feel that way then why be here at all?

And that’s the other point here…Lev is right that you don’t have RA rather you have Palindromic Arthritis which IS very different from RA.

So again, the question again about why are you here at all, since you won’t support anyone unless they fit into your ‘criteria, you don’t have RA anyway and your see us traditional peeps beneath yourself and your amazing curative knowledge…again, why is Pip here?

Hmmm…after much thought on this, the ONLY solution I could come up with again is…

…you’re here to recruit people.

I believe you come on here to pick up as many newbies are you can while they are uncertain, confused and scared…and also easily influenced due to all the emotions that surface when you are faced with a dx.

You also hang around to try and pick up any of us more experienced peeps who are feeling frustrated and discouraged at the time which makes them vulnerable to new ideas pushed into their faces.

Are you paid by the Roadback to recruit possible AP candidates?

  Cordelia2009-03-14 12:19:16well said Cordelia, i have been repeatly insulted by this group in my attempt to show an opposing viewpoint....the more i think about it they are so defensive because deep down inside there beliefs are shaken and they are in need of constant admiration. so all the people that say it didnt work get the big discredit from pip and then maz comes in with you are a lowlife..it's amazing to watch..anywoo cords you said it allWink

What a great thing this Forum is!  A place for everyone of us!  This thread is for those loser APers to spread their lies.  Angry  Come join me fellow Anti-APers and Non-APers!  I have started our thread so we have a place to prove them wrong and expose their lies!  We shouldn't even acknowledge this thread, because might look like we are APers!  Or maybe you could start your own thread about your RA drug like MTX!  Post how its going for you, plus helping newbie MTXers, so reach out to your fellows!  Start a Requesting New MTX User's thread.  The possibilities are endless !!!SmileSmileSmileSmileSmileSmile

Nap!!!
Nap!!!2009-03-11 10:37:36Can I say something without getting my head bit off . Im not into all this bitching about meds, we take what is good for us and works. If  my doctor told me cyanide would cure my RA id try it .Dead
If no one ( and so be it Pip) had informed me about AP therapy I would never have asked my doctor about it and wouldnt be trying it. Im not a Roadback person, I havent even been over there but I have been asked by members on here to keep the board informed about my AP treatment that im going to start next week...If I do this will I too be told Im not welcome on this forum. Will i be told to go to Roadback and report there.
I have no more choices, no meds are working for me and there are no more in the pipeline just yet that I can take, I dont want to end up back in my wheelchair, bedridden and in constant pain so Im willing to try what is helping other members and that is antibiotics.
 
Cordy you were in a rotton place not so long ago and by the grace of finding a med that is now having some affect for you, life has become a bit brighter.
Cathy ( JSNM) posted that her health is on the line...I dont think thats being dramatic, its being brutally honest, we have all posted that we have felt this way at some point or other.
I also dont think that any of the Apers have the right to tell us that the biologics are bad for us and we should chose their way. We should all just be a bit more open minded to others ideas even if we dont want to try them.
[QUOTE=Pip!]

Thanks Cathy for bringing this back to what it was intended for - info for APers to help other APers.  We know Lev is just baiting.

Pip

PS - Babs, I knew you read this thread.  LOL

[/QUOTE]
 
oh DO you, Pip ?   LOL
 
There are other things discussed on this thread that I have interest in.. some theorizations.... 
I think this is a web forum for our information sharing ........ so I take my share!!! LOL
[QUOTE=Cordelia] [QUOTE=justsaynoemore]I would really like to ask for some consideration from the non-AP patients in here to stop posting on this thread, as I just discovered another one for you to use.  If you read Pip's original post, this thread is for APers to post their successes and failures. 
 
My health is on the line here.  I need this thread, you don't.  It would be very much appreciated if you don't do AP that you start a new thread for your anti-AP and other off-thread topics off this thread.
 
Thank you very much for your consideration of your fellow RAers.  Cathy
[/QUOTE]

Hmmm…after much thought on this, the ONLY solution I could come up with again is…

 

…you’re here to recruit people.

 

I believe you come on here to pick up as many newbies are you can while they are uncertain, confused and scared…and also easily influenced due to all the emotions that surface when you are faced with a dx.

 

You also hang around to try and pick up any of us more experienced peeps who are feeling frustrated and discouraged at the time which makes them vulnerable to new ideas pushed into their faces.

 

Are you paid by the Roadback to recruit possible AP candidates?

 

 

  [/QUOTE]
 
 
BINGO! 
Well I dont think its Cathys purpose, she has never once asked me to try AP  therapy. When I was failing with my biologics she was quite supportive and said there are others on the market to try...
WE ALL post things we read on the net that we think is infomative but and think the rest of the board might want to read...why all the hostility...
I'm trying to figure out what the payoff would be to 'recruit' someone.  Do you think it is like Amway or something? some pay it forward program??? isn't roadback asking for donations so they don't have to close???? [QUOTE=mabus]some pay it forward program??? isn't roadback asking for donations so they don't have to close????[/QUOTE]

It's a non-profit (.org) and they ask for donations like other non-profits do.

Not everybody posting on their board is whipping out the checkbook, I wouldn't think.  Same with the Arthritis Foundation board, but they did a get a grant or something from a sponsor.
[QUOTE=Suzanne] [QUOTE=mabus]some pay it forward program??? isn't roadback asking for donations so they don't have to close????[/QUOTE]

It's a non-profit (.org) and they ask for donations like other non-profits do.

Not everybody posting on their board is whipping out the checkbook, I wouldn't think.  Same with the Arthritis Foundation board, but they did a get a grant or something from a sponsor.
[/QUOTE]

Suzanne, I wasn't completely serious here and my comment was slightly 'tongue in cheek' but I also have wondered it stuff like that is happening.

What I was saying is the Pip and some of the others on AP 'act' like a hard selling salesperson when it comes to AP and it tends to turn people off rather than attract them.

Pin, it's me here. You know me. I have no problem with 'any' traditional or alternative meds for RA. In fact, I think probably a holistic approach will get the best results. I think RA patients should chose what they think is the best for them in consultation with medical professionals they trust.

I have and am, Pin, where you are with few options. Whatever works for us and gives us some quality of life is ALL that matters.

I am in no way anti AP. I upset be the attitude of certain forum members who speak to others as if they are 'less than' because of the choice medication they have made.

That is just not right, Pin.

I said JSNM was being dramatic because she inferred that this thread here is the ONLY place she can post about AP but that is not true. She does have other places.

Pin, I so wish the best for you on AP, just like I wished that for you with previous drug trials. I have seen you go through so much. It would be wonderful if AP did 'the trick' for you.
Cordelia2009-03-11 20:52:39We're all looking for that magic bullet. I agree that people shouldn't look down on others for their treatment choices or bash all doctors. My hubby was telling me that he was talking to a co-worker about my RA. His co-worker's mother had RA and at one point someone told her the fillings in her teeth were making her sick. She had all her teeth pulled. All I could think was, wow... she must have been in tremendous pain. The part about AP that concerns me is all the unknowns. There just aren't enough current studies available. I'm not convinced it would be the best route for a patient with severe RA to take. I have heard that aboput the filling in your teeth giving more trouble if you have RA but there are other ioptions out there rather than having teeth pulled, the can redrill and fill with the new material they use now....so I have heard.

Trust me, some people will do anything to rid themselves of the pain and anguish.Count me as one of 'em.Well Cordelia and Lynn, you two have managed to really piss me off.  First of all, you are both liars.  I don't belong to Roadback.  Checked it out when I first heard about in here, and never went back.  So FU and you owe me an apology, please, BINGO. 
 
And Cordelia - accusing Pip of NEVER being supportive of anyone ever in this forum is the most drama queen lie you have told so far, so FU and you owe Pip an apology.
 
Go back in your holes. FU both. 
Someone woke up on the wrong side of the kennel!

Who pissed in your dogfood today?
[QUOTE=justsaynoemore]Well Cordelia and Lynn, you two have managed to really piss me off.  First of all, you are both liars.  I don't belong to Roadback.  Checked it out when I first heard about in here, and never went back.  So FU and you owe me an apology, please, BINGO. 
 
And Cordelia - accusing Pip of NEVER being supportive of anyone ever in this forum is the most drama queen lie you have told so far, so FU and you owe Pip an apology.
 
Go back in your holes. FU both. 
[/QUOTE]
 
Holy crap. Ouch
[QUOTE=Mrs Pincushion]
Cathy ( JSNM) posted that her health is on the line...I dont think thats being dramatic, its being brutally honest, we have all posted that we have felt this way at some point or other.
[/QUOTE]
 
Lisa - BINGO - my health is on the line, every day, just like everybody else in here.  If Cordelia wants to make fun of my disease, well, she is sicker than I thought.  RA can kill you: 
 
Viveca Lindfors, the sultry Swedish screen and stage actress who delighted Hollywood and Broadway with her liberated lifestyle as well as her acting and in her later years became known for her one-woman shows, died Wednesday. She was 74. Miss Lindfors died of complications from rheumatoid arthritis in her native Uppsala, Sweden, her daughter, Lena Tabori of New York City, told The Times on Wednesday. She said Miss Lindfors had regretted being unable to attend the Los Angeles Film Festival for the screening of her most recent film, "Summer in the Hamptons," which is scheduled for release next month.
 
Anne Mealy, 80, a homemaker, volunteer and church member, died Dec. 31 of end-stage rheumatoid arthritis at her daughter's home in Arlington. She also had been an Arlington resident. Survivors include four children, Peter Mealy of Fredericksburg, Jack Mealy of San Francisco, Susan Gunerson of Arlington and Greg Mealy of Wilmington, Del.; three siblings; and three grandchildren. Sari E. Partridge, 90, a retired language analyst at the CIA, died of pneumonia Dec. 23 at Manor Care Rehabilitation and Nursing Center in Arlington. She was a longtime Arlington resident.
 
Garcia, who lived with rheumatoid arthritis since he was 22, died Saturday of complications from rheumatoid arthritis. He was 57. His funeral was Wednesday.
 
You bet I take this seriously, and if you think that is being "dramatic", you are one sick person who needs mental help, and I hope you seek it Cordelia. 

Babs - thanks for your kind words.  You are the best. 
Pip,
Dr D has relaxed and said with my new results that everything is AOK so keep doing whatever I am doing ... next appt in a mth.
 
Cathy & Babs,
Thanks, I hope it continues too
 
Jasmine,
If you have 'never participated in the roadback forum' how do you know Joe was warned about Maz???
Maz herself is a get well story in itself, why don't you join the RB and read it for yourself.
 
CO-Mel,
Problems with fillings have been known and talked about for years, I know quite a lot of people choosing to get their fillings removed and refilled.
 
Cathy,
I agree, it is your health we are talking about, and if something is out there that may be able to give you a better quality of life why not try it..  I know I would.
 
Nap,
Great idea - why don't all of you start a new thread for Mtx ... let's see how many of you are happy with your treatment so we can be supportive.
 
For me - I post on the AP thread because I have chosen to treat the disease I have with AP &   others on AP might just actually want to know if I am having problems or doing well and I am very pleased to report that after about 10 mths I am starting to have success.
 
Whatever method you choose to use it is worth it if you are gaining ground.  Personally I don't really care what medications you use to treat your symptoms, it is your right to make your own choices, but this particular thread is about AP.
 
For all of you who are taking pot shots at AP and us in the process, don't you have anything better to do with your lives.....
 
 
 
 
 
 
 
Maz-aust2009-03-11 17:14:27I think there have been some valid questions posted by members that haven't been answered. It seems like any time someone, especially certain members, questions an AP method they are automatically pegged as "anti-AP," achieve troll status and are outed for their dark intentions to completely discredit the entire treatment (insert evil-plotty-type laugh here). Personally, I would just like to know the A-Z of AP therapy. I want to know the successes and the failures. I want to know about side effects. I want to know how in the world someone tells a difference between a herx and a flare because a herx certainly sounds like a flare to me. I want to know if there is anyone with severe adult RA who is treating their condition with AP and it's working. By working, I mean less than an hour of pain/stiffness in the morning, no red or swollen joints, minimal pain. (I already know Suzanne's young daughter is having great results and that is wonderful.) I want to know that if at some point I decide to venture to AP, I'm well-equipped with any available information. And with Pip, I want to know exactly how many people she has helped. Those percentages sound really high, but if we're talking 10 people... not so much. I want to know about the current studies available that weren't paid for by the people marketing AP. What about rheumatologists? If AP is so wonderful, why aren't so many more docs administering treatment? Questions. I have a lot. And I'd really like to see other's questions addressed as well.CO_Mel, there is a website dedicated to educating the public about antibiotic protocal treatment for RA, its www.roadback.org.  The protocols for your doctor are there to print out for them, or they can read them themselves. 
 
There are several recommended books to read while you are making up your mind.  You can do a google search for "antibiotic therapy for rheumatoid arthritis" and find millions of references to do your research.  Knowledge is power, and good luck. 
I've looked a little at that website, but I'm not a member. I'm a member here and AP is discussed here. I just figured since there was a whole thread dedicated to requesting new APers, I'd be able to have my questions answered.
Hubby and I went to a bookstore and I checked out the RA books and was surprised at how few were on the shelf! There were more books dedicated to healing ailments with warm rocks. LOL I bet they'll order them for you though; it's one of those big-chain stores.
There's 92 pages on this thread of APers telling their stories and explaining what happened and how they did it, so I would suggest you start with page one.  Well, make it 82 if you discount the 10 pages of trash by posters whose only agenda is to ruin one thread for a group of sick people trying to get well, who only want a safe place to share their experience, strength and hope.  Nobody is going to do your research for you, so good luck.  So nobody who participates in AP is going to answer questions about AP?
 
It's the old story, if you want to know about something specific find somewhere that has most of answers and in this case the AP website is http://www.roadback.org/.    As Cathy said they have all the information including information for your doctor if required or needed.
 
If you want a book to read get a copy of 'The New Arthritis Breakthrough' by Henry Scammel, it's not heavy going, easily understood and might just open your eyes to another way of treating your AI disease. 
 
You say you are not a member of the RB site, so why not join.....
 
If you read all you can and research all you can about AP and any other treatments I think you will be pleased with the knowledge.  There is no doubt about it knowledge is a powerful thing.
 
Good luck,
Maz
 
Edited to put this bit in:
I think everyone who participates in AP would be only too pleased to answer any questions you have; but from your post I believe you want to know about things that only someone with more experience in AP than I, for instance, can give you.
 
 
 
Maz-aust2009-03-11 18:14:25If someone is available who already knows the answers, why not answer the questions? You know, share the info they have? I'm not sure my questions would ever be answered at roadback either. Anyhow, I'm more comfortable in this forum since we get a mish-mash of everything. Thanks for the invite though. And I'm glad you actually looked my questions over, Maz. I appreciate that. Mel,

"They" haven't answered any of the "real" and "important" questions in 92 pages, they aren't going to start now. When you look for the truth about AP, they run around the bushes until you are dizzy. When you ask for "clinical trials" they show studies that would embarrass a "normal" person to shame. 16 people in india, 1992, the mira report, 1995, corrupted by the addition of nsaids and corticosteroids. One 2006 study that shows that minocin with mtx works better than methotrexate alone. That's the best, and it's not much. They brag about the "Harris Study" a corrupted email questionaire that you can read at the roadback. Be sure to read the most important parts. What the Harris Group is and just how the Harris Study was conducted. Outrageous. To try to pass that off as a medical study is past criminal. Read it. A real drug manufacturer could never get away with such corruption. And yet the same people that bash the big pharm and the biologics as corrupt make excuses for "their" own corruption and deceit. You aren't going to get the truth from any one of them. That is not going to happen. It hasn't happened in 92 pages and they aren't going  to change starting with page 93.

LEV
[QUOTE=justsaynoemore]Well Cordelia and Lynn, you two have managed to really piss me off.  First of all, you are both liars.  I don't belong to Roadback.  Checked it out when I first heard about in here, and never went back.  So FU and you owe me an apology, please, BINGO. 
 
And Cordelia - accusing Pip of NEVER being supportive of anyone ever in this forum is the most drama queen lie you have told so far, so FU and you owe Pip an apology.
 
Go back in your holes. FU both. 
[/QUOTE]

JSNM, I have no intention of FU. I have been here a long time now and people know who I am. I have nothing to prove to anyone. I have emotionally supported endless people here in there journey with RA regardless of what medication they take.

I owe you and Pip nothing. You are angry that I have had the audacity to say what I think...it seems that here only certain people are allowed to do that but when anyone out of that group does, they are told off.

Pip, inferred that because I and others here take Rituxan then our intelligence levels were put into question. That was rude and uncalled for and if anyone needs to apologize, it's Pip, not me. I have never attacked Pip for her choice of medication, I wouldn't, that's a very personal thing. You guys may not realise it but your attitude towards people who are not choosing the path you have, is that we are 'less than'. Many of us have mentioned that attitude but if we question, we are slammed.

What I am questioning is exactly what Jas said and Buckeye...that certain people here who use AP feel that they can act superior to anyone else who chosen other medication. Their attitude is pompous, self righteous and down right nasty as far as I'm concerned.

Here's what Jas said again...on the Medical Hexing thread but referring to this issue exactly:

Originally posted by JasmineRain

What pisses me off is the attitude that it is the superior choice, for ALL patients... and anyone who chooses not to use it is somehow mentally inferior.

And Buckeye said this on thread the Spelunker introducation thread:

[QUOTE=buckeye]and as Shug discovered a Troll is also anyone that may have an opinion not approved by the self chosen Queen's of the board.  You will continue to discover that a dissenting opinion makes you a Troll.  If you make a point certain people can't refute it becomes a "straw" arguement.  If you correctly interpert a nasty statment of particular posters that they will claim that you twisted their words.  It is sad that there are posters here who can not or will not take responsibility for their words.  Luckily I think most people can figure out who is who and what is what and form their own opinions [/QUOTE]

This exactly what happens all the time here if any of us Non-Apers dare to ask even polite questions about AP they are SLAMMED for it and told off...for asking basic, interesting, sensible questions. Why are us Non-Apers allowed to say what we think but APers are?

Sorry but I have sat here for two years watching people being treated rudely and nastily simply because they don't agree with the APers. I can't sit here any longer and not say anything. It's wrong how you treat people who have made different choices from you.


JSNM, you are very welcome to your Aper's thread. I have never posted her before and I never intend to again, starting when I finish this post.

But if the Roadback is so everything, then why do you not post there...very strange indeed...

JSNM, I wish you a wonderful RA journey whatever you chose to do with it. May your life be blessed and full always.

Smile
[QUOTE=Maz-aust], 
 
Whatever method you choose to use it is worth it if you are gaining ground.  Personally I don't really care what medications you use to treat your symptoms, it is your right to make your own choices, but this particular thread is about AP.
 
For all of you who are taking pot shots at AP and us in the process, don't you have anything better to do with your lives.....
 [/QUOTE]
 
Mazz-  no one has taken any pot shots at AP...since when is asking some of the exact questions that we have discussed about all the other meds taking a pot shot?  Pointing out there is a difference between palindromic rheumatism and rheumatoid arthritis is also valid.  If the diseases are different so could the reactions to medications.  Is it wrong to want facts not a wannabe doctor's made up stats.   is it wrong to want recent studies so that people make up their minds with valid information not anecdotes.  Is it wrong to be offended when the self appointed spokesperson for AP claims only APer's have hope about their treatment and futures. 
 
 If someone wants to only here the rated G version of AP then roadback is the place to go.  And before you ask I have read roadback for many many years...dissenting or questioning views are not appreciated.   
 
The reality of the so called disagreements on this thread have very little to do with medication choice.  It is much easier to believe that people disagree with the message when the disagreements are actually due to the messengers. 
 
 
 
 
 
 
 
 

I really don't want to play with you - but I do have a couple of questions &  little something to say.

Who said PR & RA is the same thing, certainly not me ..... Is it my fault that the rheumies I have seen all say they pretty much treat all AI diseases the same way ...... I have never said or intimated that AP was the only way to travel, in fact I suggest to all newbies that they do their homework and find out as much as they can about their disease and all available treatment paths .... then and only then they can make a good informed decision about what path they would prefer to go down.

Make no mistake, I am not offended either by you or anyone else on this website, however I am highly amused that there are people, and yes you are one of them, who derive some kind of pleasure out of constantly inciting people to anger and defence .. and you go to any lengths to achieve your goal .. it must give you some kind of kick.
 
This is really easy ---
If you want to find out all about AP go to the AP website
If you make the decision to try AP & want support there are a number of people who can support you, including some people on this website
If you want stats - why ask me, I am not a statistician - jump onto the web and look it up from the experts
 
When people have lost faith in a treatment, because it doesn't suit them, or has stopped working, or has too many side effects, or a million other reasons including just not being prepared to take mtx or any of the medications offered by some doctors;  they have every right to look for alternatives.  
 
Who are you to tell them they are wrong .......
 
 
 
 
 
 
Well, well, well, I can't believe this!

Firstly, any poster can respond or write a post on any thread, no-one owns the thread, no-one can make up their own rules about the thread.

It seems to me that many people are asking questions about AP therapy, mainly because they keep reading about it on here and when they ask questions, instead of getting answers, they are told to go to the Roadback website.

Also if this AP therapy was so successful, why don't Drs prescribe it more, you can argue that Drs don't want to promote it as their is no reward for them from pharm companies but not all Drs think like that.  If this treatment was so successful then we would be hearing about it a lot more and the statistics would speak for themselves.

I have tried it and found it was of no help to me, I would never discourage anyone from trying it, it is every persons right to try whatever they want. 

I don't understand why the AP heavies who preach on here all the time don't just go and preach on their very own website (The roadback), surely that would be more satisfying because people who visit there, actually actually want to hear over and over again how "good" it is, I say each to their own, and I would like to know Pip, where is the thread where you insulted people who take Rituxan, can you tell me please?

Regards Jane.

[QUOTE=Maz-aust]

I really don't want to play with you - but I do have a couple of questions &  little something to say.

Who said PR & RA is the same thing, certainly not me ..... Is it my fault that the rheumies I have seen all say they pretty much treat all AI diseases the same way ...... I have never said or intimated that AP was the only way to travel, in fact I suggest to all newbies that they do their homework and find out as much as they can about their disease and all available treatment paths .... then and only then they can make a good informed decision about what path they would prefer to go down.  

 
You were the one who said people were taking pot shots...I was simply trying to clarify what you defined as a pot shot.  The points I brought up were the questions that somehow seem to offend various APer's.  The APer's are among the loudest questioning other people's medications or information posted about medications.  Why is AP exempt from questioning?
 
Make no mistake, I am not offended either by you or anyone else on this website, however I am highly amused that there are people, and yes you are one of them, who derive some kind of pleasure out of constantly inciting people to anger and defence .. and you go to any lengths to achieve your goal .. it must give you some kind of kick.
 
Maz you can feel whatever you like about me.   I don't have an issue with you personally I really don't, but this discussion goes both ways and Pip, JSNM and the rest of the Greek Chorus are not picked on innocents and if you are going to call out one side call out the other.  I've kept my mouth shut a long time but when Pip proclaimed to the world that only people on AP have hope that was the straw that broke the camel's back. 
 
This is really easy ---
If you want to find out all about AP go to the AP website
If you make the decision to try AP & want support there are a number of people who can support you, including some people on this website
If you want stats - why ask me, I am not a statistician - jump onto the web and look it up from the experts
 
If people have to go to the AP website to ask valid questions about AP then why does this thread exist in the first place.  I didn't start it Pip did.  Your friend Pip was also the one throwing out statistics about how many people she has "helped" through AP.  Why can't she be questioned about that?
   
When people have lost faith in a treatment, because it doesn't suit them, or has stopped working, or has too many side effects, or a million other reasons including just not being prepared to take mtx or any of the medications offered by some doctors;  they have every right to look for alternatives.  
 
Who are you to tell them they are wrong .......
 
Please show me where I have told anybody that they were wrong about how they treat their RA.   You won't find it because I really don't give a damm what they take.... that is their own business.  However for your FYI, I am very comfortable with the theory behind AP.  I read roadback, I've read the book...but when someone freely chooses to post information about medications on a public forum  I believe they have an obligation to post correct,  non misleading  or non  exaggerated information.   When they post something incorrect or misleading then I will correct or question that information...whether it is AP or any other meds.
 
I am sincerly happy you're showing improvement on AP and I do hope that it continues.
 
     
  
[/QUOTE]
 
edited because I accidently hit send too soon
buckeye2009-03-11 20:50:44[QUOTE=buckeye][QUOTE=Maz-aust]

I really don't want to play with you - but I do have a couple of questions &  little something to say.

Who said PR & RA is the same thing, certainly not me ..... Is it my fault that the rheumies I have seen all say they pretty much treat all AI diseases the same way ...... I have never said or intimated that AP was the only way to travel, in fact I suggest to all newbies that they do their homework and find out as much as they can about their disease and all available treatment paths .... then and only then they can make a good informed decision about what path they would prefer to go down.  

 You were the one who said people were taking pot shots...I was simply trying to clarify what you defined as a pot shot.  The points I brought up were the questions that somehow seem to offend various APer's.  The APer's are among the loudest questioning other people's medications or information posted about medications.  Why is AP exempt from questioning?
 
Did I say it was you taking the pot shots, I don't think so.
Pot shots are not questions, I am all for someone asking as many questions as they want including questions about AP.
 
Make no mistake, I am not offended either by you or anyone else on this website, however I am highly amused that there are people, and yes you are one of them, who derive some kind of pleasure out of constantly inciting people to anger and defence .. and you go to any lengths to achieve your goal .. it must give you some kind of kick.
 
Maz you can feel whatever you like about me.   I don't have an issue with you personally I really don't, but this discussion goes both ways and Pip, JSNM and the rest of the Greek Chorus are not picked on innocents and if you are going to call out one side call out the other.  I've kept my mouth shut a long time but when Pip proclaimed to the world that only people on AP have hope that was the straw that broke the camel's back. 
 
I don't have any personal issues with you either but I have been included in the ranting and raving.
 
I don't believe I read where Pip proclaimed to the world that only people on AP have hope perhaps you could point it out to me.  But having said that if you have issue with someone why don't you PM them why attack everyone else as well.
 
This is really easy ---
If you want to find out all about AP go to the AP website
If you make the decision to try AP & want support there are a number of people who can support you, including some people on this website
If you want stats - why ask me, I am not a statistician - jump onto the web and look it up from the experts
 
If people have to go to the AP website to ask valid questions about AP then why does this thread exist in the first place.  I didn't start it Pip did.  Your friend Pip was also the one throwing out statistics about how many people she has "helped" through AP.  Why can't she be questioned about that?
 
I have no idea why people don't answer questions about AP you will have to ask them.  I can't answer for Pip either so why make reference of it to me ???
   
When people have lost faith in a treatment, because it doesn't suit them, or has stopped working, or has too many side effects, or a million other reasons including just not being prepared to take mtx or any of the medications offered by some doctors;  they have every right to look for alternatives.  
 
Who are you to tell them they are wrong .......
 
Please show me where I have told anybody that they were wrong about how they treat their RA.   You won't find it because I really don't give a damm what they take.... that is their own business.  However for your FYI, I am very comfortable with the theory behind AP.  I read roadback, I've read the book...but when someone freely chooses to post information about medications on a public forum  I believe they have an obligation to post correct,  non misleading  or non  exaggerated information.   When they post something incorrect or misleading then I will correct or question that information...whether it is AP or any other meds.
 
I am sincerly happy you're showing improvement on AP and I do hope that it continues.
 
Good that you actually know what it is, just as I know what mtx & other medications are as well as proposed treatment plans ---
 
I haven't misled anyone so why now are you attempting to attack me ??? - not that I really care.
 
Lev states quite correctly that PR is not RA which leads me to yet another question, why then do rheumatologists insist on treating me with the same drugs used to treat RA????  Seems to me the medical profession don't agree with that statement.
 
[/QUOTE]
 
edited because I accidently hit send too soon
[/QUOTE]
 
This is fun - lets play again tomorrow !!
Maz-aust2009-03-11 21:28:28[QUOTE=CO_Mel]I think there have been some valid questions posted by members that haven't been answered. It seems like any time someone, especially certain members, questions an AP method they are automatically pegged as "anti-AP," achieve troll status and are outed for their dark intentions to completely discredit the entire treatment (insert evil-plotty-type laugh here). Personally, I would just like to know the A-Z of AP therapy. I want to know the successes and the failures. I want to know about side effects. I want to know how in the world someone tells a difference between a herx and a flare because a herx certainly sounds like a flare to me. I want to know if there is anyone with severe adult RA who is treating their condition with AP and it's working. By working, I mean less than an hour of pain/stiffness in the morning, no red or swollen joints, minimal pain. (I already know Suzanne's young daughter is having great results and that is wonderful.) I want to know that if at some point I decide to venture to AP, I'm well-equipped with any available information. And with Pip, I want to know exactly how many people she has helped. Those percentages sound really high, but if we're talking 10 people... not so much. I want to know about the current studies available that weren't paid for by the people marketing AP. What about rheumatologists? If AP is so wonderful, why aren't so many more docs administering treatment? Questions. I have a lot. And I'd really like to see other's questions addressed as well.[/QUOTE]
 
 
Mel -
 
We keep answering the questions and the Anti-APers then change the questions.  I, for one, am tired of explaining the same thing over and over to somebody ill equiped to understand the nuances.
 
The successes and failures of AP are on the Roadback.  Join and start searching.  There are two that I can think of off the bat.  One woman gave up after 9 years but...get this...she was 'non-compliant'.  Joe's wife is another one.  As Suzanne pointed out all the time, the info is there.  If they're so darn sure it doesn't work, go find the proof. 
 
Side effects have been listed multiple times on AI.  It's a med safe enought to give to teenagers.  We take a lesser dose than they do.  You can't get pregnant on it or the fetus can get discolored teeth.  My nephew has that as his mom was pregnant but didn't know and they put her on tetracyclines.  He'll get cosmetic bonding when he's older.  There is also some possible, rare, problem with shortened bones for a fetus.  There are some exceedingly rare side effects for adults - some get a bluish tint to their skin.  My mom got that but doesn't want to stop AP (for OA) because the reduction in pain in her spine means she can sleep thru the night for the first time in decades.  There is Minocin-Induced-Lupus in which lupus like symptoms show up in the person being treated.  What doctors don't mention is that you can switch to Doxy and the lupus-like symptoms go away.  A similar thing is people on Enbrel getting MS.  Only with Enbrel the MS doesn't go away. 
 
Percentages - are still being worked out.  It's part of the reason I've redone my filing system as there are people I need to catch up with.  9 out of 10 PRA people and about 15 out of 20 RA people.  Most of the RA people were severe and failed a lot of meds. 
 
For current studies - I'll post all I have just before I go.  A good thing to do is set up research so it comes to you.  A friend is setting up RSS feeds for me.  There aren't a lot of studies and the Roadback was instrumental in getting the MIRA trial done at all.  We'd happily have more studies if some researchers were willing to do them.  There is no money in it (but will be when we get a Universal Health Plan) because all they seem to be interested in is a revenue stream.  Here is a copy of an article that was in the Boston Globe.
 
 
Who markets AP?  Nobody gets paid for this.  This is exactly what Babs was 'complaining' about.  Where are all the success stories, they'd be jumping up and down telling people about AP.  We are - and we get slammed for it.  The RB is a non-profit.  The people who post about AP don't get paid.  There is no money for this.  This off patent drug has all the big Pharma companies working to figure out a way to make this 'new' and therefore, patent protected.  Search 'patent mycoplasma' sometime. 
 
Where are the rheumatologists in all this - I think on those continuing education trips paid for by Pharma.  There aren't many willing to look into this and kill the goose that laid the golden egg.  This is part of the reason I'm soooo stoked by all the 'reform' laws being talked about now.  We might get our cure when the smoke clears.
 
Hugs,
 
Pip
The usual corrections in blue - Sheesh Lev!
 
[QUOTE=levlarry]Mel,

"They" haven't answered any of the "real" and "important" questions in 92 pages, they aren't going to start now. When you look for the truth about AP, they run around the bushes until you are dizzy. When you ask for "clinical trials" they show studies that would embarrass a "normal" person to shame. 16 people in india, 1992, the mira report, 1995, corrupted by the addition  subtraction - the MIRA trial counted as 'breach of protocol' the fact that APer's stopped using of nsaids and corticosteroids. One 2006 study that shows that minocin with mtx works better than methotrexate alone. That's the best, and it's not much. They brag about the "Harris Study" a corrupted email questionaire that you can read at the roadback. Nobody except Lev says that Harris poll was anything other than a poll.  Lev can't figure out the difference between a study and a poll.  Sheesh!  Be sure to read the most important parts. What the Harris Group is and just how the Harris Study was conducted. Outrageous. To try to pass that off as a medical study is past criminal. Read it. A real drug manufacturer could never get away with such corruption.  No, real drug manufacturers are protected under 'preemption' when they kill people.  And yet the same people that bash the big pharm and the biologics as corrupt make excuses for "their" own corruption and deceit. You aren't going to get the truth from any one of them. That is not going to happen. It hasn't happened in 92 pages and they aren't going  to change starting with page 93.

LEV
[/QUOTE]
[QUOTE=Cordelia] [QUOTE=justsaynoemore]Well Cordelia and Lynn, you two have managed to really piss me off.  First of all, you are both liars.  I don't belong to Roadback.  Checked it out when I first heard about in here, and never went back.  So FU and you owe me an apology, please, BINGO. 
 
And Cordelia - accusing Pip of NEVER being supportive of anyone ever in this forum is the most drama queen lie you have told so far, so FU and you owe Pip an apology.
 
Go back in your holes. FU both. 
[/QUOTE]

JSNM, I have no intention of FU. I have been here a long time now and people know who I am. I have nothing to prove to anyone. I have emotionally supported endless people here in there journey with RA regardless of what medication they take.

I owe you and Pip nothing. You are angry that I have had the audacity to say what I think...it seems that here only certain people are allowed to do that but when anyone out of that group does, they are told off.

Pip, inferred that because I and others here take Rituxan then our intelligence levels were put into question. That was rude and uncalled for and if anyone needs to apologize, it's Pip, not me. I have never attacked Pip for her choice of medication, I wouldn't, that's a very personal thing. You guys may not realise it but your attitude towards people who are not choosing the path you have, is that we are 'less than'. Many of us have mentioned that attitude but if we question, we are slammed.

What I am questioning is exactly what Jas said and Buckeye...that certain people here who use AP feel that they can act superior to anyone else who chosen other medication. Their attitude is pompous, self righteous and down right nasty as far as I'm concerned.

Here's what Jas said again...on the Medical Hexing thread but referring to this issue exactly:

Originally posted by JasmineRain

What pisses me off is the attitude that it is the superior choice, for ALL patients... and anyone who chooses not to use it is somehow mentally inferior.

And Buckeye said this on thread the Spelunker introducation thread:

[QUOTE=buckeye]and as Shug discovered a Troll is also anyone that may have an opinion not approved by the self chosen Queen's of the board.  You will continue to discover that a dissenting opinion makes you a Troll.  If you make a point certain people can't refute it becomes a "straw" arguement.  If you correctly interpert a nasty statment of particular posters that they will claim that you twisted their words.  It is sad that there are posters here who can not or will not take responsibility for their words.  Luckily I think most people can figure out who is who and what is what and form their own opinions [/QUOTE]

This exactly what happens all the time here if any of us Non-Apers dare to ask even polite questions about AP they are SLAMMED for it and told off...for asking basic, interesting, sensible questions. Why are us Non-Apers allowed to say what we think but APers are?

Sorry but I have sat here for two years watching people being treated rudely and nastily simply because they don't agree with the APers. I can't sit here any longer and not say anything. It's wrong how you treat people who have made different choices from you.


JSNM, you are very welcome to your Aper's thread. I have never posted her before and I never intend to again, starting when I finish this post.

But if the Roadback is so everything, then why do you not post there...very strange indeed...

JSNM, I wish you a wonderful RA journey whatever you chose to do with it. May your life be blessed and full always.

Smile
[/QUOTE]
 
Ok, I'll have the audacity to say what I really think.  There are victims...and there are martyrs.  You sister, are a martyr.  I had thought we were friends and as a friend I would have assumed you would have PMed me before you started joining in with the resident lunatic.  Lev twists everything everybody has ever said, including you, and you have the NERVE to jump on me with this garbage.  Yes, you do owe me an apology.  If, like most here, you are unable to distinguish between what is meant and what is said because of your own insecurities of the path you've chosen, then that is your problem, not mine.  I try to teach my daughter to take responsibilities for her own emotions - I can see you haven't mastered that either.  So, in answer to your 'recruitment' comments - no, I hadn't seen that as a possibiltiy before - but thank you - I will claim it now.  Just think how many people will NOT END UP LIKE YOU ARE. 
 
May the rest of your life be enjoyable. 
 
Pip
  [/QUOTE]
 
 
The reality of the so called disagreements on this thread have very little to do with medication choice.  It is much easier to believe that people disagree with the message when the disagreements are actually due to the messengers. 
 
[/QUOTE]
 
Do you have any idea how much negative research is out there on the biologics?  We don't post it.  We wouldn't have to explain our choices if we did the traditional meds yet we constantly have to say the same darn things because of the insecurities of the people on the biologics.  If they were so darn secure in their decisions, they wouldn't care what a group of others were doing to deal with this disease. 
 
The truth is...you question your own decisions and then 'blame the messanger' for asking you to think.
 
Pip

Janie -

I just insulted Lev because obviously Rituxin hasn't cleared up his fog or he'd be able to remember the responses we keep telling him over and over.  He has BAD brain fog.  Or he's a lunatic.  The people repeating that 'Pip has insulted Rituxin' are apparently all on it themselves and feel maligned so are now defending poor decrepit Lev.  If Rituxin was all that then Lev would be able to remember what he's been told.  LOL
 
They are obviously not secure in their drug of choice.
 
Pip
[QUOTE=buckeye]
 
 I believe they have an obligation to post correct,  non misleading  or non  exaggerated information.   When they post something incorrect or misleading then I will correct or question that information...whether it is AP or any other meds.    
  
[/QUOTE]
 
And I believe one has an OBLIGATION to not intentionally mislead people with partial statements and parts of facts in an attempt to provoke an arguement.  When, exactly, was the last time you corrected, hmmm, Lev, Mabus, Henrietta et al when they've intentionally misrepresented something (mostly a liberal or an APer) said? 
 
You people are freakin' amazing. 
 
Pip
Maz -
 
It's on the Medical Hexing thread.  I didn't say that exactly, but they want to believe it because it makes them feel vindicated for this pack of dogs mentality.  I find it exceedingly amusing that the last time they did this the 2 biggest perpertrators ended up apolgizing after the person was gone.  Gee, a few weeks and they can't remember that far back. 
 
Why don't they PM?  Because it would be basic kindness and this disease robs them of that.  They'd rather be in bed with Lev because it allows them to show their true colors - basically unresolved anger at this disease.
 
Pip
[QUOTE=Pip!]My success rate for helping people with AP is 90% for PRA peeps and about 75-80% for regular RA peeps.  Pretty much twice the rate for the biologics.  Imagine that.  This has been posted here multiple times, but, alas, you can't remember that.[/QUOTE]

Once again...What is your patient base? Over how long a period of time did you monitor your peeps? What criteria are you using to determine your success rate?[QUOTE=Pip!][
Who markets AP?  Nobody gets paid for this.  This is exactly what Babs was 'complaining' about. 
Hugs,
 
Pip
[/QUOTE]
 
EXCUSE ME?  WTF was I complaining about??????  I think YOU need to elaborate....
 
AND.. I am beginning to get pissed.......  so, show me my complaint, PIP...
Lunk - Pip was right to be suspicious about you, honing straight into the fray.  For 30 posts, you seem to have managed to be spot on with your "questions".  Please read the heading of this thread and Pip's first post - its for people who are on AP and new people on AP.  You don't qualify.   
 
Pip - You can officially count me as 1 of your "RA peeps".   That gives you a 100% success rate right now, and I will never, ever be able to thank you enough for being so diligent in your public posts in here about bringing this treatment to light for me. 
 
I had been on MTX, Predisone and Plaquniel for about 8 months under rheumatology doctor's orders and only continued to worsen until I stumbled in here and first heard about something new - antibiotic protocol.  I am now in remission with recent blood work showing NO RA disease activity at all, none.  A miracle, for me.
 
So Lunk, after reading a few of Pip's posts, I went to Roadback to study, studied the studies, did my own research, and decided on my own to start AP therapy.  Not at Pip's suggestion or orders, but because she has been a wealth of information and shares it freely, like a human being should act, instead of hoarding it to herself and laffing herself that she is pulling one over on sick people.  In fact, that's what patients with thinking minds do, they study and make up their own minds or they trust their physician and follow their directions.  And I took 5 months before asking to start AP.  That's how it works, not some secret medical office that Pip has set up and is charging fees.
 
And lastly, because I am very, very privileged to know this fine woman of many professional talents (which 99% of you are not aware of), 99% of you are also unaware of what is going on behind the scenes here, and when you do find out, I hope you have the decency to extend the apologies owed to Pip.
 
So Lunker, go find your own answers, I did.  Lunk, you are obviously a retread, this is all getting very tiresome.   
 
justsaynoemore2009-03-12 04:11:36[QUOTE=Pip!] I find it exceedingly amusing that the last time they did this the 2 biggest perpertrators ended up apolgizing after the person was gone. [/QUOTE]
 
IF you're including me in that "group", Pip...... and in reference to GoGo.. who's name you seem unable to speak........ but refer to her as "the person"
I did apologize to her.. not about anything I ever said in disagreement w/ her.... because I stand behind my words.. but because of how things were presented and handled.. I know I would be devastated if someone treated me that way.. so I said I was sorry that she was treated that way..............
I never apologized for anything I ever said in argument or discussion w/ Gimpy........
Just want to be absolutely certain the record is STRAIGHT>. I do not like having my words twisted or someone alluding to something that actually did not occur......which you may recall was often my issue w/ Gimpy........
I never apologized because I don't think I have anything to apologize for....So at least I know that comment wasn't directed at me Big%20smile [QUOTE=justsaynoemore]Lunk - Pip was right to be suspicious about you, honing straight into the fray.  For 30 posts, you seem to have managed to be spot on with your "questions".  Please read the heading of this thread and Pip's first post - its for people who are on AP and new people on AP.  You don't qualify.  [/quote]
That is absolutely correct; I have been spot on with my questions that are based on a very specific set of percentages posted right here in this thread. I did do the research and I did do AP and no where except right here have I seen those numbers associated with success.

The answer to those questions should be easy. However, you, justsaynomore, cannot have it both ways: you cannot demand that no one who is not currently  on AP can ask questions re: what is posted and post the percentage of success that has been posted right here on a public forum for the whole WWW to see.

You want to get rid of me? Have your fearless leader STOP evading the questions.
Pip,
You claimed that the nsaids and corticosteroids were stopped during the Mira study and you claimed my rituxin brain fog is at it again, aw duuuude.

I am relying on the conclusion from the American College of Rheumatology concerning the Mira trial. They claim that the nsaids and corticosteroids were given along with the antibiotic, corrupting the findings. Why don't you call them up, let them know that you are the almighty, all knowing Pip, and have them retract this statement:

Based on these results, the authors concluded that minocycline was a safe and effective medication for treating patients with mild to moderately active rheumatoid arthritis.

A similar study has been reported by Kloppenburg et al (Arthritis & Rheumatism 37:629-636, 1994). Although this Dutch study was of shorter duration (26 weeks), it included patients with more severe disease than in the MIRA trial. Again, the drug was well-tolerated, but the improvement in clinical parameters was modest.

The precise mechanisms whereby minocycline may be efficacious in RA 2re unclear. Apart from the potential anti-microbial effects of this medication and the interest in Mycoplasma as a causative or contributing agent for the development of RA, minocycline has been demonstrated to be an inhibitor of metalloproteinases, including collagenases and gelatinases. Conceivably, reduction in enzymatic activity induced by minocycline might exert a beneficial effect. Other potential mechanisms of action might include inhibition of phospholipase A2, suppression of neutrophil function, and reduction in T cell proliferation.

Although these results are clearly of interest, enthusiasm for minocycline in the treatment of RA must be tempered. The patients in the MIRA trial appeared to have moderately severe disease, and many had required remittive therapy prior to inclusion in the trial. Modest responses were noted for some, but not all, parameters. Both minocycline- and placebo-treated patients showed improvement in joint swelling and tenderness, although statistically significant changes were observed in the comparison of agents. Many patients received either NSAIDs or low-dose corticosteroids during the study which may have influenced disease activity. Furthermore, the duration of response after discontinuation of treatment is unclear. Finally, longer treatment periods and comparison with disease-modifying drugs will be necessary.

Additional trials are required before minocycline can be favorably compared with, or used instead of, current second-line agents in RA.

January 16, 1995

Prepared by Paul Katz, MD, and Robert Thoburn, MD, editors.

This Hotline is provided by the American College of Rheumatology (ACR) Communications and Marketing Group as an information service for members. This Hotline does not represent a position statement of the College

 
 

 
© 2009 American College of Rheumatology
Contact Us  |  Find a Rheumatologist  |  Site Map  |  Annual Meeting  |  Clinical Meetings  |  Calendar  |  ARHP  |  REF  |  Legal & Privacy Policies
ACR  |  Education  |  Sections  |  Research  |  Publications From the President-->  |  Advocacy  |  Products  |  Tools  |  Resources

Awwwwww Duuuuude! Lev - you hang on the ACR - can I see the link please.  LMAO - there is NO link.  How did you like my 'testimonial' at the RB?  Different, huh?
 
Hugs,
 
Pip
 
Edited to say 'another long day - have to take her to school, have a parents meeting, deliver Girl Scout Cookies (I LOVE I can take all those stairs - losing weight finally now that I can exercise) pick her up, deliver more, take her to softball practice and help out there.  See you in the late evening - looking forward to the link you won't be able to find.  LOL
Pip!2009-03-12 08:03:16Lev, have you ever tried AP? I'm just curious.Hey Pip,

I wasn't even familiar with the American College of Rheumatology until you APers started using them as your claim to AP fame by posting snippets geared to AP favor. I am the type that finds the complete article or study and that's how yous were brought out from the dark into the light. I realized that the snippets were not the conclusions. What is so deceitful is that after the American College of Rheumatology updated their recommendations for RA therapies and they recommend practically no AP therapy, yous would still post snippets from the ACR from 2002 rather than post the 2008 recomendations. Pure deceit. Even you realize that there would not be this debate if you and your associates were just honest. Instead of being honest, yous attack and attack thinking that eventually some miracle is going to happen and you won't have to post the truth. Yous all are so educated on AP therapy. Maz likes to use the phrase "educated decision" when speaking of those that decided on AP. She claims that knowledge is power and that we should all learn about all avenues of therapies so to make a knowledgeable decision and yet she is asked about AP that she is so knowledgable about that she would bet her life on that therapy, she sends people to a website because she doesn't know. A brain is a terrible thing to waste. Pip, you have disgraced yourself. You have no one to blame but yourself. You can attack everyone that asks for truth, but the truth is, you disgraced yourself.

LEV
This is a bit off topic but I am curious. Lev what is YOUS? Is it an American expression . I have never heard the word before.You know what? You win. I give up on asking questions regarding AP. I'm not going to join a different site only to be given the title of troll and basically receive the same responses. I know that is exactly what would happen if I were to join because I've seen how people respond to folks here. I'm also not going out to do research on my own when there are people available who have been through the ringer with AP and have the answers. I'm sorry I'm not interested in a cult-like experience where I blindly follow a treatment plan with no substansial clinical evidence to support it. As far as I'm concerned, AP is not for me and I will no longer suggest it as an alternative method.
Good luck!
Okay Pip,

Let me show you how easy it should be. Someone asks for the link or the study or the evidence and with-in minutes, boom, here it is. The link to the conclusion of the Mira report posted on the American College of Rheumatology By Doctor Katz. Of course he is probably lying about nsaids and corticosteroids being given along with the AP. Let's see, who should I believe, Doctor Katz reporting on the American College of Rheumalogy's Hotline or should I believe Pip who said that nsaids and corticosteroids were stopped during the Mira study. Hmmmmm, it's a tough decision, but I'm going to have to go with Doctor Katz. Here's the link, Pip. See how easy it is? Oh, I think you have to copy and paste:

http://www.rheumatology.org/publications/hotline/archive/0195minocycline.asp


Hey JSNM 100% success is hard to get when you don't even know DX. Isn't it you who said you didn't even have RA??? It's had to follow with all your mis DX and then all the deleted stuff...oh well the drums are beating, the smoke is coming out of the teepee's and my feet are turning blueWink [QUOTE=CO_Mel]You know what? You win. I give up on asking questions regarding AP. I'm not going to join a different site only to be given the title of troll and basically receive the same responses. I know that is exactly what would happen if I were to join because I've seen how people respond to folks here. I'm also not going out to do research on my own when there are people available who have been through the ringer with AP and have the answers. I'm sorry I'm not interested in a cult-like experience where I blindly follow a treatment plan with no substansial clinical evidence to support it. As far as I'm concerned, AP is not for me and I will no longer suggest it as an alternative method.
Good luck!
[/QUOTE]

This is confusing to me, and although I quoted Mel, others have said similar things.

Questions about studies and statistics - I think it makes sense to find those on your own.  Humira would probably be our next step, and I can't fathom asking people to provide any more than their personal experiences with it.

Roadback has a resource section separate from their board.  You don't have to interact with anyone.

This thread has a lot about peoples' personal experiences and so does Roadback and also I'm sure you could pm a specific question to someone about their personal experience.  It happens all the time!


[QUOTE=Suzanne] Questions about studies and statistics - [/quote]

Respectfully, Suzanne, I have done the studies and looked at the statistics and those statistics that have been posted in this thread exceed what I have found elsewhere. WHY is it so difficult for the originator of those stats to tell us, all of us, how they were compiled?

I simply want to be as well informed as possible, and if those stats are correct, MAYBE another look at AP, or AP combined with other therapies, is worth a look: however, until those stats are validated by the originator that simply frustrates me, and apparently others on this forum. And no, being told to wait for the book is NOT a responsible answer.

If a statement is made public, then it is up to the statement maker to either clarify, classify, rectify, or simple answer queries make about the statement.

Calling me a troll, Lunk, a retread only clouds the issue at hand:
[QUOTE=Pip!]My success rate for helping people with AP is 90% for PRA peeps and about 75-80% for regular RA peeps.  Pretty much twice the rate for the biologics.  Imagine that.  This has been posted here multiple times, but, alas, you can't remember that.[/QUOTE]

Once again...What is your patient base? Over how long a period of time did you monitor your peeps? What criteria are you using to determine your success rate?
[QUOTE=Spelunker] [QUOTE=Suzanne] Questions about studies and statistics - [/quote]

Respectfully, Suzanne, I have done the studies and looked at the statistics and those statistics that have been posted in this thread exceed what I have found elsewhere. WHY is it so difficult for the originator of those stats to tell us, all of us, how they were compiled?


[/QUOTE]

My reply was in regard to people who say they want to know more about AP.

You are replying about a specific question you have for a specific poster.

I do my own research and don't go by anything posted on an unmoderated message board.  Sure, sometimes it is a starting point.  You'd be amazed what is out there about all the meds. 
[QUOTE=Suzanne] I do my own research and don't go by anything posted on an unmoderated message board.  Sure, sometimes it is a starting point.  You'd be amazed what is out there about all the meds.  [/QUOTE]

You are assuming that I do not know what is "out there" with regards to medications for RA, why would you do that? And why would you assume that I do not do my own research?? [QUOTE=Spelunker] [QUOTE=Suzanne] I do my own research and don't go by anything posted on an unmoderated message board.  Sure, sometimes it is a starting point.  You'd be amazed what is out there about all the meds.  [/QUOTE]

You are assuming that I do not know what is "out there" with regards to medications for RA, why would you do that? And why would you assume that I do not do my own research??[/QUOTE]

?????????????

I was explaining why my reply did not pertain to your quest. 

The last line was a general observation, not intended directly at 'you'; sorry if you took it personally.  You will get used to my writing style LOL.
i'm not surprised that Spelunker has been put on guard... to be attacked within the first few moments of arriving anywhere.. is enough to do that for certain....
 
 
[QUOTE=babs10]i'm not surprised that Spelunker has been put on guard... to be attacked within the first few moments of arriving anywhere.. is enough to do that for certain....
 
 
[/QUOTE]

I wasn't party to any of that.  I just asked about diet testing on the intro thread.


a book is coming out? when?
whats the title,   AP FOR DUMMIES  ??????Wink
[QUOTE=mabus]a book is coming out? when?
whats the title,   AP FOR DUMMIES  ??????Wink
[/QUOTE]
 
 
LOLLOLLOLLOLLOL 
Well well well, good to see that the majority of you are still behaving like children.
 
CO-Mel
By your reasoning we should take it one step further and all children should simply ask their teachers for every answer and not be asked to do their own research, after all the teachers do know the answers don't they; and now because no-one wants to play you spit the dummy.
 
Lev
As always - a very angry person - your rage comes across in everything you post.
 
Crodelia
A bit of the pot calling the kettle black .... when someone gives you an opinion you don't like you 'slam' them and try to bully them into submission.
 
Lunk
I believe I can say that Pip is not citing a 'clinical trial', but I believe she is referring to the many people she has helped, and they are the ones who say they have been successful. 
 
JasmineRain
You are successful in your duplicity, and just 'wet seaweed'.
 
 
 
 
 
 
 
 
 
 
Maz-aust2009-03-12 20:21:18

For those of you who are asking, no, demanding, stats on AP.  I would like to see some stats on just how successful the traditional ways of treating AI diseases are, what are the remission rates and how long it takes to achieve success using those methods.

For those of you who will ask me to clarify 'traditional' I mean any of the methods/treatments used by rheumatologists or any medical practitioner other than AP therapy.
 
Maz
 
 
Maz-aust2009-03-12 17:05:07oh Maz you are full of insults tonight for other posters..you enjoying yourselfWacko

Oh Mabus --- feel left out ????

[QUOTE=mabus]oh Maz you are full of insults tonight for other posters..you enjoying yourselfWacko[/QUOTE]
 
 
ps - perhaps you could look up where Oz is and realise it is morning here ......
like dorothy in the wizard of oz??????LOLLOLLOLLOLLOL [QUOTE=Maz-aust]Lunk
I believe I can say that Pip is not citing a 'clinical trial', but I believe she is referring to the many people she has helped, and they are the ones who say they have been successful.[/quote]
Lunk...I will relish that role in the same manner I have decided to ejoy being tagged as Troll.  I will simply play along with the intended insult and pretend to be as dumb as you and Justsaynoemore are determined to portray me. Whether Pip is citing a clinical trial or not is hardly the point, she posted success rates for her "peeps". Success rates have a basis: number of people involved and a criteria for meeting or failing a predetermined success are minimal, even when helping people around the world. What is so difficult about answering those questions? Pip's statistics either have a factual basis or they do not, full stop. How can a percentale relate to the "many people she has helped"?
You have chosen to see asking pertinent questions as behaving like children; sobeit. My perception of evasing of direct questions, tagging people with derogative names, and blithely saying, "read the book" is hardly responsible adult behavior. 
Mabus - confusing me with Judy Garland, how nice ....
 
Lunk
I repeat - give me the stats on my question - what is the remission rate for those on non AP therapies, what are the success rates .... Don't want to answer me ---- oh my, perhaps I should be like CO-Mel and spit the dummy !!
 
Oh Lunk by the way, I don't have to portray you as 'dumb' you are quite capable of doing that yourself.
Maz-aust2009-03-12 17:56:56

Smear and fear seem to be the choice of many of the AP people..............What a shame Shocked

[QUOTE=Maz-aust]

For those of you who are asking, no, demanding, stats on AP.  I would like to see some stats on just how successful the traditional ways of treating AI diseases are, what are the remission rates and how long it takes to achieve success using those methods.

For those of you who will ask me to clarify 'traditional' I mean any of the methods/treatments used by rheumatologists or any medical practitioner other than AP therapy.
 
Maz
 
 
[/QUOTE]
 
of course...  answer the question with another question.....
 
that shows how much you know about the therapy you're taking.. I'm glad it's working for you Maz.. but seriously.......  We've been waiting for the APers to answer for quite some time.. but you expect an IMMEDIATE REPLY TO your question.. which is supposed to be a reply to the question posed about AP therapy results....
 
huh?
 
I'm wondering if AP therapy has some poor results on cognitive thought processes that prevent comprehension and realization that a question has been asked... not a request for a question.....
 
Yeah.. I'm being harsh.. and I'm fed up w/ the bullsh*t.
[QUOTE=Maz-aust]Mabus - confusing me with Judy Garland, how nice ....
 
Lunk
I repeat - give me the stats on my question - what is the remission rate for those on non AP therapies, what are the success rates .... Don't want to answer me ---- oh my, perhaps I should be like CO-Mel and spit the dummy !!
 
Oh Lunk by the way, I don't have to portray you as 'dumb' you are quite capable of doing that yourself.
[/QUOTE]
 
You've been quite the snide little remarker today haven't you?  I guess thats the impression Your remission has given you of yourself.... but time will tell won't it... from what I've learned of Palindromatic Rheumatism... It's a peaks and valleys kind of disease that comes and goes w/ its own rhythm.......
 
You dont' have the consideration to speak to someone and use their name yet expect them to quickly reply....  very full of yourself I'd say.
[QUOTE=Maz-aust]Well well well, good to see that the majority of you are still behaving like children.
 
CO-Mel
By your reasoning we should take it one step further and all children should simply ask their teachers for every answer and not be asked to do their own research, after all the teachers do know the answers don't they; and now because no-one wants to play you spit the dummy.
 
[/QUOTE]
 
The shameless audacity you have is appalling. If someone has the answers, why not respond to the questions? Adding insults to the mix does nothing for me. It only shows weakness and insecurities. As I said before, I will not blindly follow a treatment plan. 
Your comment about teachers and students is an empty argument. Why all the secrecy with AP? If it's such a wonderful, life-changing remedy, why not share all the information available with possible new APers? This thread is titled "requesting new APers," is it not?
 
http://www.arthritistoday.org/conditions/rheumatoid-arthritis/ra-treatment/rheumatoid-arthritis-remission.php
 
 
Hope this meets your requirements re: remission rate and success rates.  I also have quite a file of info.  Have to go have dinner with my husband and then off to a farewell party for some of our friends that are leaving.  Catch you all later tonight. Wink Lindy

Thanks Linb,

Will have a look at the links when I get home tonight ---
 
Maz
ps - Shame CO_Mel won't do the same re AP ... !!
 

[QUOTE=LinB]http://www.arthritistoday.org/conditions/rheumatoid-arthritis/ra-treatment/rheumatoid-arthritis-remission.php

 
 
Hope this meets your requirements re: remission rate and success rates.  I also have quite a file of info.  Have to go have dinner with my husband and then off to a farewell party for some of our friends that are leaving.  Catch you all later tonight. Wink Lindy
[/QUOTE]
Quote:
Maz
ps - Shame CO_Mel won't do the same re AP ... !!
 
 
Poor, Maz. Hug
 
I ask again: if someone has the answers, why not respond to the questions?
CO_Mel2009-03-12 18:41:05Maz 
I don't think you are stupid but I will clarify something for you anyway. 
 
 No one has asked for AP stats, we are quite aware that current information does not exist for this med.  What we have been asking Pip for is for data backing up HER so called stats.   She has boldly claimed that she has a 90% success rate but despite repeated inquiries she refuses to provide anyone any more information as a result we must assume she is either lying or exaggerating.  Is the truth so horrible that she can't speak of it.  He usual response is that her files are a mess and she will post the backup for her statements later but after 2 years that statement gets rather old...its hard to provide backup when the facts exist only in her mind.
 
You guys let Pip talk for all of you as I have never seen an AP person question her statements so everyone else must assume you all agree with her exaggerations.    AS long as you keep speaking for her you will continue to take the heat for her as well. 
 
 
[/QUOTE]
 
The shameless audacity you have is appalling. If someone has the answers, why not respond to the questions? Adding insults to the mix does nothing for me. It only shows weakness and insecurities. As I said before, I will not blindly follow a treatment plan. 
Your comment about teachers and students is an empty argument. Why all the secrecy with AP? If it's such a wonderful, life-changing remedy, why not share all the information available with possible new APers? This thread is titled "requesting new APers," is it not?
 
[/QUOTE]
 
Now now CO-Mel --- why is it when I point out the paradox in your statements do you resort to attacking me .... Strange !!
 
Who asked you to 'blindly follow a treatment plan'???
Who said 'it's such a wonderful, life-changing remedy'???
 
Why when you are consistently pointed in the direction of a website that can answer all your questions do you refuse.
 
 
I find it absolutely amazing how someone can come in and hijack a thread like this and the rest of the jackels pounce.  Some that I have looked up to the past 18 months have truely disappointed me.  I fear there is something more behind all this and also find a newbie jumping into the fray most puzzleing.  Sounds like someone else who used to post here.  I think it is time you all take a good long look in the mirror!!!!CryTeedOff - amazing isn't it.  A whole forum to use, and they have to hijack one thread that none of them have anything but disdain and contempt for. 
 
Lunk - the best part about all of this is that I am not your wife or girlfriend or anyone who has to answer any of your questions.  You don't even ask nicely.  Go do your own homework, like the rest of us did.  I ain't your doormat or a woman you can push around with your arrogance. 
[QUOTE=Maz-aust]
 

JasmineRain
You are successful in duplicitity, and just 'wet seaweed'.
 
[/quote]

Not sure if this means I have duplicate tits or ???

And I don't get the "wet seaweed" comment either.


Oh well, carry on... I'm going back to bed

JasmineRain2009-03-12 19:20:58 [QUOTE=justsaynoemore]Lunk - the best part about all of this is that I am not your wife or girlfriend or anyone who has to answer any of your questions.  You don't even ask nicely.  Go do your own homework, like the rest of us did.  I ain't your doormat or a woman you can push around with your arrogance.  [/QUOTE]

Now, this truly is an adult, responsible, on-topic, and compassionate response.

Colour me impressed! Wow.
[/QUOTE]
 
The shameless audacity you have is appalling. If someone has the answers, why not respond to the questions? Adding insults to the mix does nothing for me. It only shows weakness and insecurities. As I said before, I will not blindly follow a treatment plan. 
Your comment about teachers and students is an empty argument. Why all the secrecy with AP? If it's such a wonderful, life-changing remedy, why not share all the information available with possible new APers? This thread is titled "requesting new APers," is it not?
 
[/QUOTE]
 
Now now CO-Mel --- why resort to that level just because someone questions the paradox of what you are saying....
 
Who asked you to 'blindly follow a treatment plan' ???
Who stated 'it's such a wonderful, life-changing remedy' ???
 
I have only ever heard people speak of their own progress, and believe it or not they are entitled to do that, just as I am.
 
Why on earth would anyone post on this website everything to do with AP therapy when AP therapy has it's own website .... yet another paradox.  Plus, don't forget you wanted one of us or all of us to post the A-Z of AP therapy on this website because you can't be bothered looking at the RB website yourself.
 
It constantly amazes me how you twist and turn things around to suit yourself then get somewhat miffed when you are questioned.
 
 
 
 
 
 
Maz-aust2009-03-12 19:29:30Just to be perfectly clear. I have done my homework, I have done AP, I am only asking for Pip to substantiate her stats. I am not quite sure why some of you are having so much trouble understand this.

How difficult can it be to just answer the questions?
[QUOTE=Spelunker] Now, this truly is an adult, responsible, on-topic, and compassionate response.

Colour me impressed! Wow.
[/QUOTE]
 
Meaning that you have acted like an adult, responsible, on-topic and compassionate person?  ROFLMAO  Color me unimpressed.  Take a hike.
[QUOTE=Spelunker]Just to be perfectly clear. I have done my homework, I have done AP, I am only asking for Pip to substantiate her stats. I am not quite sure why some of you are having so much trouble understand this.

How difficult can it be to just answer the questions?
[/QUOTE]
 
You are not an APer so Pip does not have to justify anything to you or the rest of the pack.  What is said and done here on this thread is for the APers so if you want more information go look it up.  We understand you all too well....you are a bully just like the windbag.
TeedOff2009-03-12 19:35:08justsaynoemore, your bait is not floating. I will not bite. You want to quarrel rather than discuss and I foolishly responded to your quarrelsomeness once. It will not happen again, but I am also not going to give you the pleasure of not responding at all to you or to anyone else on this very public forum.

When someone places information for public consumption they should be fully prepared to clarify, elaborate, and/or defend their information. Evasion, shirting the issue and blithe answers do nothing to clarify or elaborate.
I just don't like you.  [QUOTE=TeedOff]You are not an APer so Pip does not have to justify anything to you or the rest of the pack.  What is said and done here on this thread is for the APers so if you want more information go look it up.  We understand you all too well....you are a bully just like the windbag.[/QUOTE]

I am NOT asking Pip to justify anything! I am asking her to answer some very simple questions re: her statistics. HER statistics, ones she posted not once but several times by her own admission.

No, obviously you do not understand me at all, or your response would have been far different. I will however enjoy adding bully to my other AI titles!


[

I am NOT asking Pip to justify anything! I am asking her to answer some very simple questions re: her statistics. HER statistics, ones she posted not once but several times by her own admission.

No, obviously you do not understand me at all, or your response would have been far different. I will however enjoy adding bully to my other AI titles!


[/QUOTE]
 
No, I do not know you nor do I care to.  I have never liked bullys and I am not about to start now.
 
The people on AI are very aware and know exactly what she is talking about so you are absolutely NO ONE. Now if you are not smart enough to figure things out, I will express myself once again.  Who the hell are you to demand answers from anyone.   

Thanks Buckeye for the clarification,

You and your allies have asked and asked for stats and more stats & the result of trials to back up the stats, when there wasn't a 'Pip Clinical Trial' happening.

It is simple math, 

For instance if I refer 10 people to AP therapy and all 10 report back to me that it is working for them then that is 100%.  If I refer 100 people and 80 people report back that they are in remission, then 80% are in remission ... simple math.

I don't believe I have ever let Pip or anyone else talk for me. 
 
Your assumption 'that we agree with her exaggerations' --- I didn't agree she exaggerated at all, so that blows that argument out of the water, and veiled threats don't bother me so you are wasting your time.
 
I really don't understand why you, and your allies, would want to spend so much time reading and replying to comments on a thread about AP when you clearly have nothing but contempt for the treatment path.
 
I would have thought you would have better things to do with your time, or maybe not!
Maz-aust2009-03-12 20:24:29
Babs,
 
I don't believe I have ever said I am in remission !! 
 
Plus - all I have to say to someone like you is 'no mirror's at your place Babs??'.  What's the matter Babs, can't get me angry .... oh boo hoo !!!
 
Funny how you can dish it out but can't take it --- bullies are like that.....
 
 
 
[QUOTE]
 
You've been quite the snide little remarker today haven't you?  I guess thats the impression Your remission has given you of yourself.... but time will tell won't it... from what I've learned of Palindromatic Rheumatism... It's a peaks and valleys kind of disease that comes and goes w/ its own rhythm.......
 
You dont' have the consideration to speak to someone and use their name yet expect them to quickly reply....  very full of yourself I'd say.
[/QUOTE]

[QUOTE=TeedOff]I find it absolutely amazing how someone can come in and hijack a thread like this and the rest of the jackels pounce.  Some that I have looked up to the past 18 months have truely disappointed me.  I fear there is something more behind all this and also find a newbie jumping into the fray most puzzleing.  Sounds like someone else who used to post here.  I think it is time you all take a good long look in the mirror!!!!Cry[/QUOTE]

EXACTLY !!!
 
 
To all the Apers, would-be Apers and people who genuinely discuss AP ---
 
It's Friday night, I am a bit over all this crap (although I must admit it created a bit of levity to a dreary avo) -- you have a great weekend,
 
Maz
Ps ---- Pip, talk soon

 You too Maz!!!!!

Thanks TeedOff, hope to get some rain over the weekend, will help the bushfires..[QUOTE=Maz-aust]
 
Now now CO-Mel --- why resort to that level just because someone questions the paradox of what you are saying....
 
Who asked you to 'blindly follow a treatment plan' ???
Who stated 'it's such a wonderful, life-changing remedy' ???
 
I have only ever heard people speak of their own progress, and believe it or not they are entitled to do that, just as I am.
 
Why on earth would anyone post on this website everything to do with AP therapy when AP therapy has it's own website .... yet another paradox.  Plus, don't forget you wanted one of us or all of us to post the A-Z of AP therapy on this website because you can't be bothered looking at the RB website yourself.
 
It constantly amazes me how you twist and turn things around to suit yourself then get somewhat miffed when you are questioned.
 
 
 
[/QUOTE]
 
Hmm... You went back and edited your reply to remove the portion where you stated that I was attacking you. You are the one that has come out with name-calling, insults, empty arguments and backhanded comments. Exactly what level am I resorting to? I simply asked questions and quickly realized I would not get answers. I have looked at the roadback website and I've stated why I will not join that group. I figured since this was a discussion thread about AP therapy, there would be questions and answers. It's obvious that is not going to happen. I have never been "anti-AP" and I'm not "attacking" anyone. I simply want information out of pure curiousity. At this point in my illness, I know AP is not for me, but I still would like to know what is available. Bash me all you want. You are the one who looks bad.
[QUOTE=CO_Mel]I think there have been some valid questions posted by members that haven't been answered. It seems like any time someone, especially certain members, questions an AP method they are automatically pegged as "anti-AP," achieve troll status and are outed for their dark intentions to completely discredit the entire treatment (insert evil-plotty-type laugh here). Personally, I would just like to know the A-Z of AP therapy. I want to know the successes and the failures. I want to know about side effects. I want to know how in the world someone tells a difference between a herx and a flare because a herx certainly sounds like a flare to me. I want to know if there is anyone with severe adult RA who is treating their condition with AP and it's working. By working, I mean less than an hour of pain/stiffness in the morning, no red or swollen joints, minimal pain. (I already know Suzanne's young daughter is having great results and that is wonderful.) I want to know that if at some point I decide to venture to AP, I'm well-equipped with any available information. And with Pip, I want to know exactly how many people she has helped. Those percentages sound really high, but if we're talking 10 people... not so much. I want to know about the current studies available that weren't paid for by the people marketing AP. What about rheumatologists? If AP is so wonderful, why aren't so many more docs administering treatment? Questions. I have a lot. And I'd really like to see other's questions addressed as well.[/QUOTE]
 
This is your second post, other than HOLY CRAP, you posted regarding this whole mess. (pg 93)  It does sound a bit sarcastic to me and there are several points that are agitating so you were not "simply asking a question" you were joining the pack.  Remember.....it is not what you say but how you say it.
If anyone would bother to look, this all started with the WINDBAG stirring the pot, adding his bs, then serving his crap up and the whole works of you fell for it and pounced on any little thing that was written.  People who were good friends before are now mortal enemies.  WHY????    How many times does this have to happen before people wake up and smell the coffee?  You are all fighting and he is sitting back all smug. 
TeedOff2009-03-13 00:04:06[QUOTE=Maz-aust]
Babs,
 
I don't believe I have ever said I am in remission !! 
 
Plus - all I have to say to someone like you is 'no mirror's at your place Babs??'.  What's the matter Babs, can't get me angry .... oh boo hoo !!!
 
Funny how you can dish it out but can't take it --- bullies are like that.....
 
 
 
[QUOTE]
 
You've been quite the snide little remarker today haven't you?  I guess thats the impression Your remission has given you of yourself.... but time will tell won't it... from what I've learned of Palindromatic Rheumatism... It's a peaks and valleys kind of disease that comes and goes w/ its own rhythm.......
 
You dont' have the consideration to speak to someone and use their name yet expect them to quickly reply....  very full of yourself I'd say.
[/QUOTE] [/QUOTE]
 
you are correct...y ou did not say remission...
I can admit on those rare instances when I am wrong  ......... LOL
I don't care to make you angry Maz....... but to name call.... well, that ususally does mean anger and a childish  behavior and a desire to incite anger.........  so, who's trying to make someone angry?  Not I.
With all the trouble and sadness going on in the world, can't we all just agree to be more humane and support each other, c'mon guys, lifes too short.  What does it matter how we get relief as long as we get it?  Janie. [QUOTE=TeedOff][QUOTE=CO_Mel]I think there have been some valid questions posted by members that haven't been answered. It seems like any time someone, especially certain members, questions an AP method they are automatically pegged as "anti-AP," achieve troll status and are outed for their dark intentions to completely discredit the entire treatment (insert evil-plotty-type laugh here). Personally, I would just like to know the A-Z of AP therapy. I want to know the successes and the failures. I want to know about side effects. I want to know how in the world someone tells a difference between a herx and a flare because a herx certainly sounds like a flare to me. I want to know if there is anyone with severe adult RA who is treating their condition with AP and it's working. By working, I mean less than an hour of pain/stiffness in the morning, no red or swollen joints, minimal pain. (I already know Suzanne's young daughter is having great results and that is wonderful.) I want to know that if at some point I decide to venture to AP, I'm well-equipped with any available information. And with Pip, I want to know exactly how many people she has helped. Those percentages sound really high, but if we're talking 10 people... not so much. I want to know about the current studies available that weren't paid for by the people marketing AP. What about rheumatologists? If AP is so wonderful, why aren't so many more docs administering treatment? Questions. I have a lot. And I'd really like to see other's questions addressed as well.[/QUOTE]
 
This is your second post, other than HOLY CRAP, you posted regarding this whole mess. (pg 93)  It does sound a bit sarcastic to me and there are several points that are agitating so you were not "simply asking a question" you were joining the pack.  Remember.....it is not what you say but how you say it.
If anyone would bother to look, this all started with the WINDBAG stirring the pot, adding his bs, then serving his crap up and the whole works of you fell for it and pounced on any little thing that was written.  People who were good friends before are now mortal enemies.  WHY????    How many times does this have to happen before people wake up and smell the coffee?  You are all fighting and he is sitting back all smug. 
[/QUOTE]
 
If you re-read my post without an "us v/s them" mentality, then they are just questions. I will admit to sarcasm for the sake of humor in the "evil-plotty-laugh" part. Think, 'come to the darkside... we have cookies.' LOL This is not a fight. Lighten up! It's too beautiful of a day to be upset or miserable.  

I would like to know why, if you've been a member long before me, you have not submitted all of your questions to the AP thread before this mess started up?  I also am neither us or them but someone willing to step up to the plate when someone is getting the stuffing kicked out of them.  If it had of been you on the other end of the stick I would have done the exact same thing.  As to this not being a fight.....it's the worst attempt at humor I have ever seen and I am neither upset or miserable just disappointed.

TeedOff2009-03-13 08:27:41[QUOTE=TeedOff]

I would like to know why, if you've been a member long before me, you have not submitted all of your questions to the AP thread before this mess started up?  I also am neither us or them but someone willing to step up to the plate when someone is getting the stuffing kicked out of them.  If it had of been you on the other end of the stick I would have done the exact same thing.  As to this not being a fight.....it's the worst attempt at humor I have ever seen and I am neither upset or miserable just disappointed.

[/QUOTE]
I didn't post on the AP thread before because, honestly, I didn't want to know about it because I already had a lot going on medication wise. Learning about what I was taking and dealing with my disease was enough. I wasn't ready to add learning about AP to the mix. Now, after seeing so many posts about AP, I thought I would take a chance and learn something about it. Like I said, I was never anti-AP. Some of my posts to newbies even mention alternative methods and the RB website. I'm no longer going to suggest it though because I personally don't feel they'll get the answers they might be looking for.
I'm not sure who's defense you are coming to? I haven't called anyone names or yelled at them or purposely insulted them. I'm certainly not kicking the stuffing out of anyone... This is not a fight. It is a discussion. And when I said I was attempting humor, I was referring to the evil-laugh part only not the entire post.
So you chose to demand answers to your questions right in the middle of this so called "discussion"  You know the old saying.....you can fool some of the people some of the time....etc. etc. etc.SmileSmileI'm sorry, but all the tactics you are trying are not working. I've been honest and have no ulterior motives. Have a nice day! Big%20smile[QUOTE=CO_Mel]I'm sorry, but all the tactics you are trying are not working. I've been honest and have no ulterior motives. Have a nice day! Big%20smile[/QUOTE]
 
Hey Where's Chubby Checkers cause there's twisting going on again.....
 
Co_Mel.... you shouldn't have to justify the reason you're asking a question.......... my heavens, it's obvious.. you want to learn and know more.......
 
we now know that there won't be information shared here... til someone deems us worthy Big%20smile
 
I've learned in my eventful 50 plus years, that when someone starts the name calling... such as bully.. etc..   they are usually the name they toss out......  just fodder for thought based on my experiences......  and now we have TeedOff trying to strong Arm Mel into admitting she had ulterior motives  OH MY!!  Confused
How bout you get over it, ok?  YOu can't make a situation be something it is not, no matter how hard you try.
babs102009-03-13 09:43:35Where do these people come from? And an even bigger question is why do they come here? This is a rheumatoid arthritis forum and yet we get a handful of people here without rheumatoid arthritis. Why? Pip doesn't have rheumatoid arthritis and yet she is a member here and makes reckless statements about minocin and AP therapy in the cure and management of rheumatoid arthritis. She even claims that minocin has given her better eyesight and is actually reversing the joint damage in one of her toes caused by rheumatoid arthritis. Maz-Aust doesn't have rheumatoid Arthritis. And yet, she was invited here from another forum by Pip for the reason of attacking me. That's where Maz-Aust came from. And yet, she also makes wild and reckless claims about AP therapy in the management of rheumatoid arthritis. She acts as a sales representative for AP therapy making outrageous claims and then when asked for proof and science she doesn't have the answers and then refers questions to roadback.  Then there is JSNM. She claimed to have been misdiagnosed and then diagnosed with RA and then found out that she was again misdiagnosed and doesn't have RA and said her goodbyes to everyone here because she didn't really have RA and then she just continues on as if she does have RA. Another one making outrageous claims about AP therapy. Posting flawed and outdated poor studies as science. Every member here with rheumatoid arthritis has every right to ask for the science and fda approval and proof of any statement made about the cure or management of rheumatoid arthritis, a very serious disease. This is our forum. This forum is a rheumatoid arthritis forum. If you don't have rheumatoid arthritis, you are not a real member of this rheumatoid arthritis forum. Anyone without bias colored glasses can very well see that the members here just asked for the meat and potatoes. We real members asked for proof and scientific evidence of their wild and outrageous claims. We have that right. So many times we have seen new members being so taken with a drug touted as safer than traditionals and more effective than traditional meds. All we have been asking is prove it. Show it. To tout a study done by Pip is absolutely ridiculus.  A normal person would be embarrassed to associate themselfs with such rubbish. But when asked for evidence of the effectiveness of AP therapy, that's what we get. We get the success rate of a study by a person without credentials or credability. Her own study in her own mind. Nobody is attacking the messengers. We have the right to demand the proof and science when anyone makes outrageous medical claims about our very serious disease. Oh yeah, and then enters TeedOff. Another guest that doesn't have rheumatoid arthritis and hates me and anyone that associates with me or takes the same stand as me or has the same opinion. She feels like she has the right to ccome into our forum and be a very disrespectful guest. She starts right being rude and crude, making false allegations against our real members. The shame is on you TeedOff. How dare you talk to real rheumatoid arthritis members as you did. Had you made statements without bias and with honesty then you would have some credibility and class. For you to attack Spelunker and Mel and the others shows what kind of a person you are. It's without surprise that you didn't say anything against those that are doing the attacking, Pip, JSNM and Maz. They attack because they can't give any credible facts about the statements that they make about AP. TeedOff, if you keep telling yourself that you are being fair over and over, you may start to believe it, but what you have posted shows the truth and the truth you posted is both bias and ugly. You owe the members here an apology. No body was beating up your friends. They weren't attacking your friends. They were asking the questions that need to be answered for those of us with rheumatoid arthritis, and especially for the future members, newly diagnosed that are looking for miracles. They are the ones that are easily led down a path that may lead to the destruction of one or more joints. You can't "feel" us. You can't be us. I can't even understand why you would even be here. This is for people suffering with rheumatoid arthritis.

LEV
[QUOTE=CO_Mel]I'm sorry, but all the tactics you are trying are not working. I've been I honest and have no ulterior motives. Have a nice day! Big%20smile[/QUOTE]
 
I have no idea what tactics you are talking about and as to the rest.....that is debateable.
[QUOTE=babs10][QUOTE=CO_Mel]I'm sorry, but all the tactics you are trying are not working. I've been honest and have no ulterior motives. Have a nice day! Big%20smile[/QUOTE]
 You took the words right out of my mouth Babs.  You were the ones who hijacked the thread and now you have the goons out.  You guys are really really good at the twisting part....you've been doing it for 7 or 8 pages.  Mel does not have to justify anything to me just like everyone else on here does not have to justify anything to you.  Things can be explained to you over and over again but nothing is sinking in.  In my sixty plus years I have learned to spot a bully and man is this site full of them.  I guess you are speaking from experience.  Boy, you sure do paint a pretty picture.....not.  How about you get over it.
 
 
Hey Where's Chubby Checkers cause there's twisting going on again.....
 
Co_Mel.... you shouldn't have to justify the reason you're asking a question.......... my heavens, it's obvious.. you want to learn and know more.......
 
we now know that there won't be information shared here... til someone deems us worthy Big%20smile
 
I've learned in my eventful 50 plus years, that when someone starts the name calling... such as bully.. etc..   they are usually the name they toss out......  just fodder for thought based on my experiences......  and now we have TeedOff trying to strong Arm Mel into admitting she had ulterior motives  OH MY!!  Confused
How bout you get over it, ok?  YOu can't make a situation be something it is not, no matter how hard you try.
[/QUOTE] TeedOff2009-03-13 10:10:25[QUOTE=TeedOff][QUOTE=CO_Mel]
I have no idea what tactics you are talking about and as to the rest.....that is debateable.
[/QUOTE]
 
You're grasping at straws and now you challenge my integrity?
[QUOTE=CO_Mel][QUOTE=TeedOff][QUOTE=CO_Mel]
I have no idea what tactics you are talking about and as to the rest.....that is debateable.
[/QUOTE]
 
You're grasping at straws and now you challenge my integrity?
[/QUOTE]
 
My God you are pathetic.
[QUOTE=TeedOff][QUOTE=CO_Mel][QUOTE=TeedOff][QUOTE=CO_Mel]
I have no idea what tactics you are talking about and as to the rest.....that is debateable.
[/QUOTE]
 
You're grasping at straws and now you challenge my integrity?
[/QUOTE]
 
My God you are pathetic.
[/QUOTE]
 
 
I said I was being honest and have no ulterior motives which you said is debateable. You are challenging my integrity and to that I take great offense. Now you've added that I'm pathetic. I really don't understand where your personal vendetta is coming from.
 
I asked questions about AP, remember?
can you learn how to quote?.... I sure don't want it to appear that your words are mine!!
 
 
[QUOTE=TeedOff][QUOTE=babs10][QUOTE=CO_Mel]I'm sorry, but all the tactics you are trying are not working. I've been honest and have no ulterior motives. Have a nice day! Big%20smile[/QUOTE]
 You took the words right out of my mouth Babs.  You were the ones who hijacked the thread and now you have the goons out.  You guys are really really good at the twisting part....you've been doing it for 7 or 8 pages.  Mel does not have to justify anything to me just like everyone else on here does not have to justify anything to you.  Things can be explained to you over and over again but nothing is sinking in.  In my sixty plus years I have learned to spot a bully and man is this site full of them.  I guess you are speaking from experience.  Boy, you sure do paint a pretty picture.....not.  How about you get over it.
 
 
Hey Where's Chubby Checkers cause there's twisting going on again.....
 
Co_Mel.... you shouldn't have to justify the reason you're asking a question.......... my heavens, it's obvious.. you want to learn and know more.......
 
we now know that there won't be information shared here... til someone deems us worthy Big%20smile
 
I've learned in my eventful 50 plus years, that when someone starts the name calling... such as bully.. etc..   they are usually the name they toss out......  just fodder for thought based on my experiences......  and now we have TeedOff trying to strong Arm Mel into admitting she had ulterior motives  OH MY!!  Confused
How bout you get over it, ok?  YOu can't make a situation be something it is not, no matter how hard you try.
[/QUOTE] [/QUOTE]
 
TeedOff.. I now understand where you name originated........  is that how you spend your time.. just TEED OFF?
 
 
Maz, really you do need to get over yourself. i would never infer your likeness to talent. on your retail therapy trip don't forget to pick up a nice BROOMIn an attempt to answer some of the general questions demanding answers in here, I offer up AI's position on AP therapy, which is located on the home page for this site:
 

Minocycline

What is it?

Once considered as an "alternative" treatment for inflammatory arthritis, the use of antibiotics as DMARDs is now generally accepted in the early stages of the disease.

FDA approved:

October 1972

Brand Names and International Availability:

Borymycin (Taiwan); Cyclimycin (South-Africa); Cynomycin (India); Dynacin (US); Klinomycin (Germany); Lederderm ; Mero (Taiwan); Mestacine (France); Mino-50 (Belgium); Minocin (US); Minocin MR (Hong-Kong); Minoclir 50 (Germany); Minocyclin 50 Stada (Germany); Minogalen (Germany); Minoline (Taiwan); Minomycin (Australia, New-Zealand, Japan, South-Africa); Minotab 50 (New-Zealand); Mino-Wolff (Germany); Mynocine (France)

How does it work?

An antibiotic mainly used to treat infections, minocycline has been found to be beneficial in some people with inflammatory arthritis. Exactly why it works is unknown, however some people believe some rheumatoid diseases are caused by a hypersensitivity reaction due to infection of mycoplasmas. If this is indeed the case, mincocycline works by eliminating the mycoplasmas. Others believe the benefit is merely anti-inflammatory.

Dosage:

Antibiotic protocol may vary between doctors. One common protocol is 100mg taken three times a week.

How should I take it?

This medication should be taken with a glass of water. If stomach upset occurs, take with food.

Contraindications:

Caution should be used when giving this medication to people with known kidney problems.

Pregnant or nursing mothers should not take Minocycline.

Minocycline should not be used in children.

Drugs Interactions:

Certain antiacids and calcium supplements may decrease the effectiveness.

Minocycline may decrease the effect of oral contraceptives.

Minocycline may increase the action of digoxin.

Possible side effects:

These side effects are not considered serious but are certainly annoying for those experiencing them. The most frequently reported side effects include diarrhea, discolored tongue or teeth, drowsiness, dizziness, loss of appetite, nausea, sun sensitivity, and frequent yeast infections.

More serious side effects that you should report right away include dark yellow or brown urine, difficulty breathing, skin rash or itching, and unusual bleeding or bruising.

Signs of a possible allergic reaction are rash, swelling and difficulty breathing. These symptoms should be reported immediately.

Precautions & Special Notes:

You will be required to have frequent blood work while on this medication. It is very important that you keep all lab and doctor's appointments.

Due to the potential for sun sensitivity exposure to direct sunlight should be avoided. If you are in the sun please wear protective clothing and strong sun block.

For more information:

The Roadback Foundation (http://www.roadback.org/)
RxList Minocycline
Pharm Info Net Minocycline



References:
Mosby's GenRx?, 10th ed. Copyright ? 2000 Mosby, Inc.
Complete Guide to Prescription and Nonprescription Drugs, H. Winter Griffith, M.D. , Copyright ? 1997
RxList.com
Roadback Foundation

But, you need to do your own research, just like all APers have done - read the books, talk to your doctor, and make an informed decision for your health, not because someone in here had success. 
What is truly funny about the concerns that people are "hijacking" the post is, Pip and the other AP people hijack posts all the time. Pip nor Maz nor Suzanne have RA so they are hijacking this whole forum. Am I right?

There won't be any facts from the AP people, they only have a couple true, factual studies and the main one doesn't mention the dose of MTX that it is compared to. Since AP is considered a mild DMARD by Mayo, Johns Hopkins etc the MTX dose must have been mild too.

The other part that is really really funny is how anti pharm they are and yet they do the exact same thing with their marketing. Worse, because they can't produce studies that the FDA makes the pharm people do.

One final thought, this has been around for over 50 years and has never caught on. Do you really think if it really worked, the whole world would know about it? Meanwhile, they are piling on antibiotics taking IV's even in an attempt to be well ruining antibiotics for us.~wondering how long til pimp and her ho's shows up~

.

justsaynoemore2009-06-17 16:27:13 Wow, Cathy!  That is some news!  I felt for years that something was not right and this is more proof to that feeling.  I wish this had been around before I was diagnosed!

What is it with me and hitting that reply button???  I am editing to add...  Thank-you! Embarrassed
waddie2009-03-16 21:45:14 [QUOTE=Bird Girrl]What is truly funny about the concerns that people are "hijacking" the post is, Pip and the other AP people hijack posts all the time. Pip nor Maz nor Suzanne have RA so they are hijacking this whole forum. Am I right?

[/QUOTE]

Wow - three days with no posts on this thread and it had dropped far down.  Thanks for bringing it back up! 
I was thinknig that SOMEONE was going to have to address Bird and Henrietta 
 
*roling eyes into the back of my head*
 
if they bother you so much, Suzanne...
here's a clue:
 
Don't Address them!
 
sheeeeeesh.
babs102009-03-17 07:25:11Even on moderated forums I see that some hand out 'medical advice':
"Speaking of many joints, I am concerned you are not getting enough treatment. Plaquenel is one of the milder ones. If you do have it in many joints you need more aggressive treatment. In the old days, they would start mild and add drugs but now they start much more aggressive with the strong meds first. The whole purpose is to prevent damage. So think about it."


http://community.arthritis.org/forums/Topic4189407-1831-1.aspx





[QUOTE=babs10]
if they bother you so much, Suzanne...
here's a clue:
 
Don't Address them!
 
sheeeeeesh.
[/QUOTE]

I was saying thanks!  Didn't you see?????
LOL Suzanne - Isn't she a hoot - and get this - she doesn't even have RA!!!  She has AS.
 
Pip
Suzanne-
 
You are great!!!!
[QUOTE=Jan Lucinda]Suzanne-
 
You are great!!!!
[/QUOTE]

You are so sweet, Jan!  Thank you for making me feel welcome here. 

I do post on parents boards sometimes; it is hard for me to read sometimes, though - look at the situations of the two moms who replied after me:

http://community.arthritis.org/forums/Topic4188035-1816-1.aspx


.

justsaynoemore2009-06-17 16:28:02

Suzanne - you are my hero - when I was worried about the baby have Scleroderma, I was ready to leave the Country, if I had too.  You are blazing a trail for other moms!

Hugs,
 
Pip
PS - Cathy - I adore you, just in case you forgot!
PSS - Jan too!
[QUOTE=babs10][QUOTE=Maz-aust] 
 
You've been quite the snide little remarker today haven't you?  I guess thats the impression Your remission has given you of yourself.... but time will tell won't it... from what I've learned of Palindromatic Rheumatism... It's a peaks and valleys kind of disease that comes and goes w/ its own rhythm.......
 
You dont' have the consideration to speak to someone and use their name yet expect them to quickly reply....  very full of yourself I'd say.
 
[QUOTE]
 
you are correct...y ou did not say remission...
I can admit on those rare instances when I am wrong  ......... LOL
I don't care to make you angry Maz....... but to name call.... well, that ususally does mean anger and a childish  behavior and a desire to incite anger.........  so, who's trying to make someone angry?  Not I.
[QUOTE]
 
My my - Babs surely not, did I read your post properly ??? 

An Apology !!!  The great Babs was wrong ??
 
Plus, now you are an expert in PS are you ??? I don't think so Babs, you know less about PS than I do about RA !!
 
Then of course I couldn't let you get away with this bit, name call, make me angry, incite anger and childish behaviour --- surely you are painting a self portrait Babs !!
 
Do keep it up Babs, I love laughing......
On a serious note now ---
 
Suzanne = you are one lady to be admired,
Cathy = seems you have a wealth of insight that the rest of us could aspire to,
Pip = you know how I feel about you, you are the reason I keep on going on.
 
I have been off the air for a week and am very happy to see the detractors have left you alone for a while.
 
I just couldn't help myself with the post to Babs, I just had to get one in or she wouldn't think I cared ....
 
I have been in hospital for a few days - not nice I can tell you - does anyone here know of any meds or anyone on AP who has had a pancreatic attack?? and before you ask it is idiopathic pancreatitis I am talking about.
 
The gastroenterologist seems to think it could have been caused by the voltaren I take (which is 50mg morn & night every now and again).
 
 
DO tell me Maz.. why you went back ALL those pages to bring this up again?  when EVERYONE else had moved on?
 
 
grow up.
babs102009-03-23 18:46:28

Oh Babs - just letting you know how much I like you !!!

 

.

justsaynoemore2009-06-17 16:30:03

done

babs102009-03-28 19:40:20

Maz-

Good luck with the pancreas.  Hope it gets fixed, whatever it is.

[QUOTE=babs10]

sorry that either of you have suffered w/ pancreatitis...... I was on the phone w/ my boss who was having an attack and coming back from NJ to PA during it.. and hearing a grown man cry on the phone.......... well, it's not pretty.

Sorry about that pain....
 
I know all about pancreatic cancer having watched my Nana pass that way when I was 15.... wouldn't want that for anyone ....ever.
[/QUOTE]
 
Why thank you Babs - you do care after all .... (no I am not having a shot!)
 
The pain is really something to behold, not, so lucky I have such a high pain threshold, wouldn't wish it on my worst enemy.
 
 
 
 

Hi Cathy,

Nothing to tell really ---
The only way to get the inflammation down is to let the pancreas rest -- that means 'nothing by mouth' literally -- no drinks, no sucking on ice, no sips of water to get tablets down, no food, no medication, NOTHING BY MOUTH! virtually stopping the system from working for 3-4 days.  Whilst all this is happening you need fluids and lots of fluid; apparently when your pancreas is inflammed your system is crying out for something to drink, more than any other time - so IV fluids are pumped into you 24/7.  For me it got to the point where I was going to the toilet every 10 minutes day and night, but they still pumped in the fluids.

Plus you need to rest! so they need you to get your pain levels down to what is tolerable or comfortable for you as well, again, this is only administered by IV. 
 
Plus blood tests twice a day to check what is going on.
 
All going well after 2-3 days you can start on a liquid diet -- ie water, apple juice or whatever.  I can tell you from experience that for me just drinking 1/2 glass of water was really painful - apparently your whole system needs time to start working again so even a mouthful of water will give you pain - not pancreatic pain, stomach pain, diaphramatic pain. The gastric juices will start working again and give you pain and bloating -- so slowly but slowly does it.  Remember you are not really hungry or thirsty anyway so you can do it bit by bit.  For me it has been a week 1/2 now and I had my first real food last night -- and yes I was waiting for it to get sore, surprised it didn't - so my system must be getting back to normal now.
 
I have an MRI sheduled for 20th April -- just to check.
 
I jumped on the net yesterday to search what could have caused it -- they are thinking the voltaren (diclofenac) I take, but I take well under the recommended dose (only 50mg morn & night when required) and I checked with my own chemist and he said he didn't have anything that warned about diclofenac irritating the pancreas.  However, I found out about bile sludge and the affect of mycoplasma bacteria on the pancreas and a whole lot of other stuff -- will be interesting to see what my PS doctor has to say about it when I see her on Mon.
 
My own doctor was shocked with my inflammatory markers - apparently they climbed to 1400 CRP (when I broke my ankle they went up to 320) so they were through the roof.  Glad they are, as of yesterday, down to mid 20's again.
 
Anyway, that's it, for me that's all that happened, nothing unusual, nothing to write home about.  It happened and it is over, hopefully for good.
 
 
Thanks Jan
Maz -
 
Glad to see you're back - and survived. 
 
I'm in the 'blame AP camp' and not the 'Voltaren' on this one.  I'm very interested in what your doc says - I ran a Google search on pancreatitis and mycoplasma and hit a ton of info - seems it's linked to mycoplasma pneumonia.  Maybe I get the lung herxes and you get the pancreas ones?  Different bugger, different 'symptom.'  I know this is painful but it's better to get the beasties there instead of just in your joints. 
 
Since I live on Pubmed - I've noticed a lot of research that says 'it it's a nodules, or the body has encapsulated something' it's got a myco inside.  Just my 2 cents.
 
Hugs,
 
Pip

.

justsaynoemore2009-06-17 16:30:47
.
justsaynoemore2009-06-17 16:31:10I'm not amazing; all I do is read about this stuff.  I need a new hobby.  LOL
 
I watch my lungs all the time.  Twice in my life, once during the onset of PRA/RA, I had these HUGE coughing fits while in the shower.  So huge I couldn't stop coughing enough to breathe.  It was awful.  Both times I coughed up some sort of 1/2 inch pellet.  Freaked me out.  Damn things flew across the shower and richocheted when I finally got it out.  They looked like some kind of blood colored 'stone' with lines in it like it was attached to something.  Freaky and gross.  The area where they came from, upper right lobe, would ache for a few days, then be 'normal' again.  I've had a LOT of chest X-rays with my various pneumonias and always asked about that part of the lung and they said 'normal'.  So, for me at least, my lungs didn't want whatever was in there and got rid of it. 
 
On the RB people mention that regular RA nodules will go away, but it takes a lot of time.  I think that it's harder to get rid of because the encapsulation is some sort of barrier that protects the myco's. 
 
So, unless they grow and need to be biopsied, I'd ignore them.  Eventually they'll 'disappear' from what I've read.
 
Maz's problem is the pancreas and I wonder if they did a scan - or are doing a scan.  The pancreas is one of those single organs that needs to be protected (like my liver, gotta love your liver - lol).  I read a lot about the pancreas because of hubbys Diabetes.
 
Pip
[QUOTE=Pip!]
Maz's problem is the pancreas and I wonder if they did a scan - or are doing a scan.  The pancreas is one of those single organs that needs to be protected (like my liver, gotta love your liver - lol).  I read a lot about the pancreas because of hubbys Diabetes.
 Pip
[/QUOTE]
 
Hi Pip,
 
Thanks for the gen on mycoplasma & the pancreas - I read all about it and there is still more to read -- couldn't you send me a synopsis ..... lol  just kiddin' Wink
 
What kind of scan ???   I had an ultrasound (searching for stones) they checked my liver, stomach, both kidneys, spleen, gall bladder & of course pancreas ---- all clear.  I am scheduled to have an MRI on 20th Apr, as a checking mechanism only because they are not expecting to find anything.  So if there is any other scan you can suggest - suggest away....
 
My knowledge as I have said about the pancreas is kindergarten compared to you and most everyone else in the world --- so any information is greatly appreciated.
 
I am getting copies of my blood tests to take with me to Dr D next Monday (my PR GP) and am really looking forward to hearing what she has to say about it all.   My own GP is just stymied as is the gastroenterologist specialists -- they can't find anything at all that would or could cause pancreatitis.
 
I am beginning to think you are right - BLAME AP !!  Angry  it's all AP's fault Ouch  If you are right and it is the mycoplasma I hope it is a done deal and they are all dead 'cause I really don't want to go through that again ... I really do like to eat!
 
Anyway - not worried really, what will be will be and whatever if anything they find I will deal with when I am told about it ....
 
Be good and thanks
Cathy so glad you trusted your own feelings and did it your way ----
 
Last night spaghetti with prawns in a creamy sauce (courtesy of my daughter) - it's great to eat !!
 
Talk soon,
Maz 
[QUOTE=Pip!]I'm not amazing
[/quote]
understatement of the year

[quote]
; all I do is read about this stuff.  I need a new hobby.  LOL
 
[/QUOTE]

you left out your medical practice where you "cure" people. do you have a licence?

.

justsaynoemore2009-06-17 16:32:00Pip-
 
You're great!!!!!
This link is to an article that is w-a-y over my head, but this passage was intriguing:

http://pipeline.corante.com/archives/2009/03/26/the_motions_of_a_protein.php

"Here’s a recent paper that’s done some of that work. They’re looking at a well-known enzyme, dihydrofolate reductase (DHFR). It’s the target of methotrexate, a classic chemotherapy drug, and of the antibiotic trimethoprim. (As a side note, that points out the connections that sometimes exist between oncology and anti-infectives. DHFR produces tetrahydrofolate, which is necessary for a host of key biosynthetic pathways. Inhibiting it is espccially hard on cells that are spending a lot of their metabolic energy on dividing – such as tumor cells and invasive bacteria)."



I was never aware of such a connection!
Suzanne-
 
WAY over my head too.WinkWinkWink
[QUOTE=Henrietta] [QUOTE=Pip!]I'm not amazing
[/quote]

understatement of the year

[quote]
; all I do is read about this stuff.  I need a new hobby.  LOL  
[/QUOTE]

you left out your medical practice where you "cure" people. do you have a licence?

[/QUOTE]
 
 
HENRIETTA ... WAS THIS CATTY REMARK REALLY NECESSARY ????
THOUGHT WE HAD LEFT ALL THAT SH.T BEHIND US - APPARENTLY I WAS WRONG, I'M READY TO PLAY IF YOU ARE !!
 
 
 
Maz-aust2009-03-26 16:24:46

For those who are interested -  Pip sent me this link about mycoplasma bacteria & pancreatitis - seems to me to be beginning to make sense as I am on AP trying to kill that very bacteria !!  Have a read and let me know what you think.

http://www.google.com/search?hl=en&q=pancreatitis+mycoplasma&btnG=Google+Search&aq=f&oq

I had a huge blood pull today, one from my new endo, one from the new rheumy.  I have never had so many vials taken at one time.  Yikes, luckily the tech was unreal - first time I have never had any sort of pain or reaction to the stick.  Sometimes my arm spasms.  This was a thing of beauty.
 
But the most interesting part was that I had handwritten cc faxes to my primary, eye doctor, and the endo and rheumy back to each other, hope that makes sense.  Sometimes I get away with it, but not this time.  Nope, State law, the only person who can order blood work somewhere is the requesting doctor.
 
Then she pointed to the lab form from the great new endo.  They had stamped SEND COPY TO PATIENT on it, which I hadn't noticed.  And she goes, we will mail you the results the same day your doctor gets them, then you can send them to your other doctors.  I said can I do this with any blood test, and she said yes, its the law, the doctor has to write SEND COPY TO PATIENT if you ask.
 
I about passed out.  Years and years and years of going around and around and around trying to get my records sent to primaries or other specialists and its always been this huge procedure of sending me their form via fax, then me faxing it back, then it gets lost, having to do it again, calling and making sure the othe doctor got it, going to the doctor for the results, and having to ask for it in person at that visit.  I just have to ask for a copy to be SENT TO ME.  Good grief. 

.

justsaynoemore2009-06-17 16:36:23

.

justsaynoemore2009-06-17 16:36:50I just think that if the infection connection to cancer is eventually proved (everybody have their eyeballs roll back in their heads at Suzanne's post??? - I need to read that thing at least 3 times - LOL) then I'd definitely not want any cell wall deficient critters lying around in my lungs/pancreas/joints/whatever waiting to be a stepping stone for something worse. 
 
Cathy - I don't know if its home testing but THEY HAVE A TICK BOURNE ILLNESSES page and son-of-a-gun they have the new 'mycos can be transferred by ticks' thing covered.  Fermantes (spelling) is the AS link.  Hmmmm.
 
Pip

done

babs102009-03-28 19:39:07

.

justsaynoemore2009-06-17 16:37:29
done
babs102009-03-28 19:39:31 [QUOTE=babs10]

seriously.....  an infection is cancer? 

[/QUOTE]

Okay, the 'connection' I meant was not that cancer is an infection.  The connection I meant was the protein that a cancer drug targets is also the protein that the antibiotic targets.

So take mtx and its target away from cancer and bring it to RA.

Correct me (or post a link) if this has changed, but haven't they always said they don't know why mtx works for RA?  They just think it has to do with immune suppression? 

What if it works for RA like the antibiotic does?  Targets the protein of the 'invading bacteria', because there are no cancer cells to target, right????


done
 
babs102009-03-28 19:37:35Hey Maz - aren't you glad APer's can drink?
 
 
Babs -
 
There are 786 studies on Pubmed if your search criteria are 'cancer mycoplasma'.  Everything is discussed from that Gardisil vaccine to lymphoma.  The work is being done, slowly, but the info is adding up.  I don't know if this link will take you to the studies; but it will take you to Pubmed.  Put in the above mentioned search criteria and you'll see whats there.
 
 
There are also books out there easily available on Amazon.  I was surprised to see more from Dr. Barry Marshall - I'll have to order that.
 
 
I saw a Youtube interview with this guy - too easy to dismiss as quackery UNLESS you note that baking soda, found in your kitchen, is a great alkalizer.  I've seen a ton of info that says 'cancer (or our diseases) can't grow in an alkaline environment.'  The number I keep seeing is 5.7 but I haven't verified or confirmed that.  This guy is really into the 'fungus' theory - seriously, go check him out on Youtube.  He's the reason I dumped most of my Diet Coke.  Since I have fungus and am on diflucan for it regularly. 
 
 
And, if you run a regular Google search with these criteria - you get over 1.4 Million hits.  Sorry, don't have time to sort thru them today, but the first page was interesting.
 
 
Every time the body 'encapsulates' something - nodules, gall stones, kidney stones, tumors - when they look inside the core what they find is a cell wall deficient bacteria.  When we see plaque - like in heart disease - the thing inside that smeary crud - is mycoplasma.  Dental plaque - same thing.  Yet, they keep telling us these 'conditions' are the result of our diseases progressing.
 
Is it?  Or is it the result of an untreated infection?  Chicken/Egg?
 
Are we more protected from cancer - yes.
 
Pip
PS - I thought you were attacking but I see you're trying to figure this out.  Also, if you read the book "The Cancer Microbe" would you give us a review?  It's on my list but....no time.
done
babs102009-03-28 19:37:56

done

babs102009-03-28 19:38:23Sorry dont get me wrong but I think you people have waaaaay too much time on your hands.  The more you read the more confused you get! 

.

justsaynoemore2009-06-17 16:38:12

.

justsaynoemore2009-06-17 16:38:44Babs -
 
I haven't come to a conclusion on the alkaline thing - just stuff I've found in Pubmed seems to back it up.  Don't know about the alkaline urine test and will research later.  As for the cause/effect - I'm thinking something inside a tumor/stone/fibroid/whatever and being encapsulated probably got there first instead of the other way around.  JMHO. 
 
Pip
But don't you think that if it were mycoplasma that was inside the encapsulation that it would show up in a culture or biopsy.  I know you've said the tests aren't real reliable but a tumor/stone/fibroid/nodule would have a concentrated large (in bacterial terms) amount thus logically would be easier to test for
done
babs102009-03-28 19:36:34From Mayo -
 
Struvite stones. Found more often in women, struvite stones are almost always the result of urinary tract infections. Struvite stones may be large enough to fill most of a kidney's urine-collecting space, forming a characteristic stag's-horn shape.
 
If you run a Google search for 'what is inside ________' you'll see the same stuff I did.
 
Hugs,
 
Pip
PS - have a hot date - see you all tomorrow!
done
babs102009-03-28 19:36:53
done
babs102009-03-28 19:35:44
Saw an ad for lecture by naturopath, Dr. Michael Murray, at health food store, also sponsored by www.naturalfactors.com   He has book coming out in June,  What The Drug Companies Won't Tell You and Your Doctor Doesn't Know.  Sounds interesting.  I have never seen a naturopath but I think some here have.
[QUOTE=justsaynoemore]Dalmatinka - RA is a chronic, debilitating disease with no known cure.  My life is now devoted to my RA and trying to help others who are afflicted.  I study everything I can find to try to help myself and others.  I have no other choice, because doing nothing is inhumane to myself first, and we are charged with helping the sick.  I choose to follow that teaching.  [/QUOTE]
 
Sorry but I am done having my life revolve around my RA.  You all read this and that and over analyze every little symptom you have.  Instead of reading go to the doctor, that is what they are there for and I will take my education from them thank you. 

.

justsaynoemore2009-06-17 16:40:56
.
justsaynoemore2009-06-17 16:41:30Cathy -
 
Check out this link - you just found the study my fave science writer got the info from!  Too cool!
 
 
Dalmatinka -
 
I've very sorry that you didn't decide to continue AP.  I'm just wondering about this change of attitude you've had.  Are you so worried that you made the wrong choice?  It's only been 6 months - you can always try again.
 
I truly hope you can be happy with the road you've chosen. 
 
We are happy with ours.
 
Pip
I didnt decide to continue with AP because I have never felt worse in my life.  I am not worried at all and completely satisfied with the decision I made.  I just wonder why the rest of you put down all of us who choose not to take the road you have chosen.  I am happy that AP works for you. 
 
I for one am trying to eliminate all medicines and go the natural way through homeopathy and bioenergy as well as vitamins and supplements.  If it works good, if not  I will cross that bridge when I come to it.
 
I wasnt trying to offend just trying to say that if I was coughing up blood in the shower that I would be in the emergency room, not on the internet trying to find out what it is. 
 
I have a right to my opinion JSNM just as you have a right to yours.  Doesnt make me a hypocrite, just realistic IMHO.
.
justsaynoemore2009-06-17 16:42:11[QUOTE=Dalmatinka]I didnt decide to continue with AP because I have never felt worse in my life.  I am not worried at all and completely satisfied with the decision I made.  I just wonder why the rest of you put down all of us who choose not to take the road you have chosen.  I am happy that AP works for you. 
 
I for one am trying to eliminate all medicines and go the natural way through homeopathy and bioenergy as well as vitamins and supplements.  If it works good, if not  I will cross that bridge when I come to it.
 
I wasnt trying to offend just trying to say that if I was coughing up blood in the shower that I would be in the emergency room, not on the internet trying to find out what it is. 
 
I have a right to my opinion JSNM just as you have a right to yours.  Doesnt make me a hypocrite, just realistic IMHO.
[/QUOTE]
 
Yes, you do!  Good luck and I hope the road you have chosen works for you.  I know mine has.  Take care ~~ Cathy
Dalmatinka -
 
Nobody is putting down the road you decide to take.  You are the one that is lashing out now and that's uncalled for as you made your decision. 
 
I am very excited you are still into researching because I seriously doubt most mainstream docs will go along with either homeopathy or bioenergy.  Vitamins and herbs require knowledge in their implementation or one could seriously set themselves back. 
 
Knowledge is power.
 
Pip
Hi everyone,
 
Well saw Dr D yesterday, and after filling her in she is wondering if I actually had a herx or similar.  She made an appt with her naturopath on Wed avo to see if she can identify what bacteria/germ I have now. 
 
You are right Pip, main stream doctors don't usually go along with naturopathy, homeopathy or bioenergy and yes vitamins and herb do require knowledge in their implementation ... they can do serious damage if used incorrectly.
 
In the meantime I am glad I am back on my abx and very happy with the results so far.  On a pain scale of 1-10 am sitting on what could only be described as zero pain but aching every now and again.  Having been a week and a bit off I was a bit achey for a couple of days but it is just in the background now.
 
Agree - knowledge is power !! 
 
 
 
 
On what basis did she say the acute pancreatitis was a "herx"?

why on pips law.. didn't you know?

 

 

Jasmine,
Can't read ---- I believe I said she suggested it could have been a herx or similar and is sending me for more tests to try to identify the cause/s.   Sorry to say the tests haven't been done yet so I can't help you with the results....
 
The Gastroenterologist and his team of specialists couldn't find any reason for the attack, my PR GP suggested an alternative cause that you clearly don't agree with .....but perhaps Jasmine you could suggest a possibile cause ....??  Why don't you dazzle us with your knowledge.
 
 
Babs,
Catty as always .... how nice !!
 
Now see, there you go again.  I asked a question, that's all. Was it lab results that she based that opinion on?

NSAIDs can cause pancreatitis, though it is not very common. 50mg of voltaren is not really that low of a dosage.

I am not, and never have been, anti-AP.  What bothers me, though, is the assertion that these mysterious "buggers" are behind every single human malady.  Or that every malady suffered while on AP is a "herx."

Jas - a few pages back was info on pneumonia and pancreatitis.  That's how we got there.  I think you may have got hit because of how we've had to deal with Babs lately.  Unless I've misread what she's posted - all her docs are saying they don't know what it could be except that volteran.  To APers - 'we don't know' translates to 'herx' especially since Maz recently had a medication/abx change up.

Pip

On a different point -
 
What if all these 'we don't know' diseases really are eventually traced back to 'infection'.  Think how many diseases that have the 'potential' of being 'cured'.  Assuming a specific targeted abx were developed.
 
Pip

Thanks Pip,

Jasmine I had acute pancreatitis, the Gastroenterologist and his team of specialists can't find any reason for it --- now surely even the most stupid of people (and no I am not calling you stupid) can reason that something like that doesn't happen out of the blue without cause, something caused it, even if they don't know what it was....

Pip sent me a link citing pheumonia bacteria v/s pancreas.... to read through.

Yesterday I went to see my PR GP and she said it may have been a herx or similar because there are a lot of bad germs/bugs/bacteria going around over here right now and that we need to do more tests to see what else I have in my system and check that the abx I am taking is doing it's job.

Pip is right, I have had a recent abx change/frequency so herxing is entirely possible.  Fortunately for me I can tell the difference between a flare and a herx, they are entirely different.
 
I am not blaming every little thing I get on AP or abx, but if there is no other reason I have to look at that possibility and it would be naive of me not to do that. 
 
BTW 50mg of voltaren morn & night once a week, at the most, is a very low dose.  When I broke my ankle I had 6 tablets a day prescribed for 2 mths, now that was a lot!  Then when I got that infection I was on massive doses of abx, voltaren, tramadol, oxycontin & panadiene forte for another 4 mths.
 
You have a good day !!
Maz
  
(edited to finish the post as the system keeps booting me out)
 
 
 
 
Maz-aust2009-03-30 21:09:50[QUOTE=Pip!]Dalmatinka -
 
Nobody is putting down the road you decide to take.  You are the one that is lashing out now and that's uncalled for as you made your decision. 
 
I am very excited you are still into researching because I seriously doubt most mainstream docs will go along with either homeopathy or bioenergy.  Vitamins and herbs require knowledge in their implementation or one could seriously set themselves back. 
 
Knowledge is power.
 
Pip
[/QUOTE]
 
Actually you are lashing out at me and again putting down the road I choose to take by saying that mainstream doctors will not approve it. Most RDs dont approve of AP if I am not mistaken.  Also I am not stupid I know that combining certain herbal preparations could be dangerous so I am seeing a herbalist.  I also am reading up on vitamins and consulting with my doctor about how to use them.  Not all doctors are crooks some actually want to see you well no matter how you do it.   Also I never lashed out, I actually said I was happy that AP was working for those of you that used it but that I had never felt worse in my life when I was on it.
 
There is always an underlying tone of criticism in your posts for anything that is not AP and I for one am tired of it.  I just chose to speak up, I am sure many others share my opinion.
 
Regards,
 
Maria
Dalmatinka2009-03-31 03:23:17she's lashing out at all of us.. but it's our fault..
 
puh.....leeze..
 
and.. FYI
 
I was willing to respect this thread and had removed all my posts when your fearful leader decided to attack me everywhere I went on this board.....
so now.........
all's fair.

.

justsaynoemore2009-06-17 16:42:57[QUOTE=Dalmatinka][QUOTE=Pip!]Dalmatinka -
 
Nobody is putting down the road you decide to take.  You are the one that is lashing out now and that's uncalled for as you made your decision. 
 
I am very excited you are still into researching because I seriously doubt most mainstream docs will go along with either homeopathy or bioenergy.  Vitamins and herbs require knowledge in their implementation or one could seriously set themselves back. 
 
Knowledge is power.
 
Pip
[/QUOTE]
 
Actually you are lashing out at me and again putting down the road I choose to take by saying that mainstream doctors will not approve it. Most RDs dont approve of AP if I am not mistaken.  Also I am not stupid I know that combining certain herbal preparations could be dangerous so I am seeing a herbalist.  I also am reading up on vitamins and consulting with my doctor about how to use them.  Not all doctors are crooks some actually want to see you well no matter how you do it.   Also I never lashed out, I actually said I was happy that AP was working for those of you that used it but that I had never felt worse in my life when I was on it.
 
There is always an underlying tone of criticism in your posts for anything that is not AP and I for one am tired of it.  I just chose to speak up, I am sure many others share my opinion.
 
Regards,
 
Maria
[/QUOTE]
 
Anybody taking bets on how long Babs will ignore her new pledge?  Last nights lasted, what, 2 minutes?  The weeks before lasts...a day?
 
Dalmatinka -
 
You have a mainstream doc willing to do homeopathy and bioenergy?  This doc is willing to work with an herbalist?  And you're in America?  You're not in America, are you?  You're in a country with socialized medicine, aren't you?  You know as well as we do that mainstream medical doctors in the US are going to pat you on the hand and say 'come back and see me when you want the 'real' meds'. 
 
Nobody is saying anything about your choices.  You left and were not heard from again for months.  Then you come back and post something along the lines of 'listen to your doctors' and another thing that went basically 'you spend too much time researching'.  And you don't consider that lashing out?
 
I think you are the best example of the 'fear of my own decisions' I've ever seen.   You started AP, herxed immediately, quit (knowing it was a herx) and have chosen the 'feel better now' over the 'feel better later' model.  That was your choice.  Period.  Nobody harassed you into keeping going.  You were out and I respected that.  But somehow, you're upset at me for that?  Somehow you're skipping the part about 'it was your decision' and have turned it around to an 'underlying tone of criticism in your posts for anything that is not AP'. 
 
Yet you still don't entirely believe in mainstream American med - you didn't get Remicade because they couldn't find a vein?  You couldn't go back?  Now it's bioenergy and herbs?
 
Good luck in your chosen path.
 
Pip

What medications are associated with pancreatitis? Can you mention which ones?

Pancreatitis due to medications is very unusual. Over 55 drugs have been implicated as triggers of pancreatitis. In order to correlate a drug as having an association with pancreatitis it should:

    (1) Pancreatitis develops during treatment with the drug.
    (2) Other likely causes of pancreatitis are not present.
    (3) Pancreatitis resolves upon discontinuing the drug.
    (4) Pancreatitis usually recurs upon readministration of the drug.

The following drugs have been shown to have a strong correlation with pancreatitis:

(1) Medications to treat AIDS: didanosine and pentamidine.
(2) Antimicrobial (antibiotics): metronidazole, sulfonamides, and tetracycline.
(3) Diuretics (to treat fluid overload): furosemide and thiazides.
(4) Drugs used in Inflammatory bowel disease: Sulphasalazine.
(5) Immunosuppressive agents: Azathioprine.
(6) Others: Estrogen and sulindac.

Thanks, Lev, I see I was right - it's the antibiotics. 

Interesting that immunosuppressive agents can also be a trigger.

Pip

Pip,

I must have missed the post by you showing a possible association between Maz' pancreatic problems with the antibiotics that she is taking in the treatment for her palindromic arthritis.

LEV
Page 106 - 3rd post down.
 
Here is the link - I actually sent her more but this is the one she chose to post.
 
 
Pip
Ah yes, the superior diagnostic skills rivaling those of Dr. House - with a bedside manner to match [QUOTE=JasmineRain]Ah yes, the superior diagnostic skills rivaling those of Dr. House - with a bedside manner to match [/QUOTE] [QUOTE=Pip!][QUOTE=JasmineRain]Ah yes, the superior diagnostic skills rivaling those of Dr. House - with a bedside manner to match [/QUOTE] [/QUOTE]

Oh no! Pip has saved my post so that she can use it against me later! Is she going to stalk me? Write about me? Fantasize about me? Inquiring minds want to know!
[QUOTE=JasmineRain] [QUOTE=Pip!][QUOTE=JasmineRain]Ah yes, the superior diagnostic skills rivaling those of Dr. House - with a bedside manner to match [/QUOTE] [/QUOTE]

Oh no! Pip has saved my post so that she can use it against me later! Is she going to stalk me? Write about me? Fantasize about me? Inquiring minds want to know!
[/QUOTE]
 
No, I was just including you because your post on the other thread was sooo telling.
 
Sounds like typical kid behavior to me.  Glasses, braces, casts, you name it.  It doesn't matter what it is - if the other kid has it, it must be worth having.Wink
Mom since 1999
RA since 2002
Fish oil (my miracle drug!), hydroxychloroquine, metoprolol, Coca-cola (12 oz/day!)
Pip!2009-03-31 10:38:50Just want to clarify something --
 
ALL THE SPECIALISTS AT THE HOSPITAL (ALL 5 OF THEM) AGREED, AS DID THE HOSPITAL PHARMACOLOGISTS, THAT THE ABX I AM TAKING, IN THE QUANTITIES I TAKE, WOULD NEVER CAUSE A PANCREATIC ATTACK !!
 
THE ABX WAS RULED OUT ALMOST IMMEDIATELY!!
 
So why are some of you still honing in on it ??? I have no idea.  Surely 5 specialists in the field would have a fair indication of what may or may not cause the pancreas to react.  Then again, they don't know about all the experts on this site who obviously know better than them.
 
Some of you are 'listen to your doctor, your doctor knows best' people, and wouldn't think of challenging a doctor, which of course is your right to think like that, but why are you challenging my doctors expertise in my case ??  That seems to me to be be a bit of a paradox.  
 
 
 
 
 
Maz-aust2009-03-31 14:53:43 [QUOTE=Maz-aust]Just want to clarify something --
 
ALL THE SPECIALISTS AT THE HOSPITAL (ALL 5 OF THEM) AGREED, AS DID THE HOSPITAL PHARMACOLOGISTS, THAT THE ABX I AM TAKING, IN THE QUANTITIES I TAKE, WOULD NEVER CAUSE A PANCREATIC ATTACK !!
 
THE ABX WAS RULED OUT ALMOST IMMEDIATELY!!
 
So why are some of you still honing in on it ??? I have no idea.  Surely 5 specialists in the field would have a fair indication of what may or may not cause the pancreas to react.  Then again, they don't know about all the experts on this site who obviously know better than them.
 
Some of you are 'listen to your doctor, your doctor knows best' people, and wouldn't think of challenging a doctor, so why are you challenging their expertise now in my case ??  That seems to be a bit of a conundrum... 
 
 
 
 
 
[/QUOTE]

Talk to your buddy pip.  She's the one bragging that she knew it was the antibiotics.
roflmaoClap
[/QUOTE]

Talk to your buddy pip.  She's the one bragging that she knew it was the antibiotics.
[/QUOTE]
 
Oh Jasmine, until now I thought you had a modicum of intelligence and common sense.  Pip isn't bragging she is stating the truth, I asked her the question, she replied with links (which I read) ---
 
You obviously have a problem with her, in fact I would say you have problems with a lot of people . . . . you twist and turn things around to suit your argument but don't realise you are arguing with yourself.
 
I answered your question Lev -- the possibility of abx triggers simply don't apply to my case, the 5 Gastroengerologists said so !! 
 
 
 
 
[QUOTE=Maz-aust]
Oh Jasmine, until now I thought you had a modicum of intelligence and common sense.  Pip isn't bragging she is stating the truth, I asked her the question, she replied with links (which I read) ---
 
You obviously have a problem with her, in fact I would say you have problems with a lot of people . . . . you twist and turn things around to suit your argument but don't realise you are arguing with yourself.
 
I answered your question Lev -- the possibility of abx triggers simply don't apply to my case, the 5 Gastroengerologists said so !! 
 [/QUOTE]

Have you been tested for neurosyphilis?
[QUOTE=Maz-aust]Just want to clarify something --
 
ALL THE SPECIALISTS AT THE HOSPITAL (ALL 5 OF THEM) AGREED, AS DID THE HOSPITAL PHARMACOLOGISTS, THAT THE ABX I AM TAKING, IN THE QUANTITIES I TAKE, WOULD NEVER CAUSE A PANCREATIC ATTACK !!
 
THE ABX WAS RULED OUT ALMOST IMMEDIATELY!!
 
So why are some of you still honing in on it ??? I have no idea.  Surely 5 specialists in the field would have a fair indication of what may or may not cause the pancreas to react.  Then again, they don't know about all the experts on this site who obviously know better than them.
 
Some of you are 'listen to your doctor, your doctor knows best' people, and wouldn't think of challenging a doctor, which of course is your right to think like that, but why are you challenging my doctors expertise in my case ??  That seems to me to be be a bit of a paradox.  
 
 
 
 
 
[/QUOTE]
 
Oh I'm sorry but to quote from the party line...You must be your own advocate, step outside of the box, don't listen to those traditional docs, they are all bought and sold by big pharm....Stop being a victim!
 
I think that pretty much covers everything...LOLLOL
Jasmine my pet, getting personal now.  
 
You really are in touch with your childish side aren't you !! 
 
 
[/QUOTE]  
Oh I'm sorry but to quote from the party line...You must be your own advocate, step outside of the box, don't listen to those traditional docs, they are all bought and sold by big pharm....Stop being a victim!
 
I think that pretty much covers everything...LOLLOL
[/QUOTE]
 
Lynn ---
I am only using the same arguments some of the people here use, listen to your doctors, do what they say unconditionally, don't challenge them etc etc etc
 
Goodness me - I have been called a victim, there's a first !!
 
Traditional docs all bought and sold by big pharm..... in case you haven't noticed I don't live in the States, for the most part it doesn't cost much here for most meds, an added advantage is that you don't have to be insured to get them.
 
Please if you are going to start throwing stones better get your facts straight first !!
 
 
 
 
 
Maz-aust2009-03-31 15:24:37[QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!]Dalmatinka -
 
Nobody is putting down the road you decide to take.  You are the one that is lashing out now and that's uncalled for as you made your decision. 
 
I am very excited you are still into researching because I seriously doubt most mainstream docs will go along with either homeopathy or bioenergy.  Vitamins and herbs require knowledge in their implementation or one could seriously set themselves back. 
 
Knowledge is power.
 
Pip
[/QUOTE]
 
Actually you are lashing out at me and again putting down the road I choose to take by saying that mainstream doctors will not approve it. Most RDs dont approve of AP if I am not mistaken.  Also I am not stupid I know that combining certain herbal preparations could be dangerous so I am seeing a herbalist.  I also am reading up on vitamins and consulting with my doctor about how to use them.  Not all doctors are crooks some actually want to see you well no matter how you do it.   Also I never lashed out, I actually said I was happy that AP was working for those of you that used it but that I had never felt worse in my life when I was on it.
 
There is always an underlying tone of criticism in your posts for anything that is not AP and I for one am tired of it.  I just chose to speak up, I am sure many others share my opinion.
 
Regards,
 
Maria
[/QUOTE]
 
Anybody taking bets on how long Babs will ignore her new pledge?  Last nights lasted, what, 2 minutes?  The weeks before lasts...a day?
 
Dalmatinka -
 
You have a mainstream doc willing to do homeopathy and bioenergy?  This doc is willing to work with an herbalist?  And you're in America?  You're not in America, are you?  You're in a country with socialized medicine, aren't you?  You know as well as we do that mainstream medical doctors in the US are going to pat you on the hand and say 'come back and see me when you want the 'real' meds'. 
 
Nobody is saying anything about your choices.  You left and were not heard from again for months.  Then you come back and post something along the lines of 'listen to your doctors' and another thing that went basically 'you spend too much time researching'.  And you don't consider that lashing out?
 
I think you are the best example of the 'fear of my own decisions' I've ever seen.   You started AP, herxed immediately, quit (knowing it was a herx) and have chosen the 'feel better now' over the 'feel better later' model.  That was your choice.  Period.  Nobody harassed you into keeping going.  You were out and I respected that.  But somehow, you're upset at me for that?  Somehow you're skipping the part about 'it was your decision' and have turned it around to an 'underlying tone of criticism in your posts for anything that is not AP'. 
 
Yet you still don't entirely believe in mainstream American med - you didn't get Remicade because they couldn't find a vein?  You couldn't go back?  Now it's bioenergy and herbs?
 
Good luck in your chosen path.
 
Pip
[/QUOTE]
 
Now you are criticizing me because I live in Croatia????  Honey most doctors here put American doctors to shame!!!  And what I had from your so called AP therapy was not a herx, I have never felt so bad in my life and my GP took me off of the antibiotics saying it was an allergic reaction and I was fine within 1 day!  And another thing I went several times for Remicade and they couldnt get a vein and I didnt get it through insurance I was paying for it out of my own pocket!  And I am willing to pay for it here if I can get it and I am sure they will find a vein here.  That is if I decide to try it.  My body, my choice.  You chose AP.  A few years down the road when you are screaming in pain and cant walk come back and criticize me for my choices.  I will be in remission and enjoying life. 
Dalmatinka2009-03-31 15:33:56another severe case of third stage candida..........LOL
and to think those 5 specialists don't know a thing about pra and you had to rip them a new one and to think yous all are challenging her drs.......getting a good laugh here
 
ps jas has more friends here than broom hilda
And one more thing--I dont use socialized medical care--I see private doctors and pay for everything out of pocket so dont even mention socialized care to me and most of the doctors in socialized care here would put American doctors to shame!mabus Thumbs%20Up
 
Jas!!!  you are a goddess!!  Clap
 
Lynn......  I almost spit my Diet Pepsi across the room...........  LOL
thank you for that.. Laughter IS the best medicine........

See Jasmine & Babs - we can play !!! 

I am not challenging anyone you morons - you are !! 

But guess what people, if I get you to bite back I win.
 
AND I WON !!!  
 
 
 
 
Maz-aust2009-03-31 15:53:01

Goodness me guys --- seems this thread is a reading priority, everyone wants to post on it!

Maz,

Do I really believe that not just one specialist, not just two specialists, not just three specialists, not just four specialists, but five, count them, five specialists told you that your medical problem wasn't caused by the antibiotic. You must be one special person to have not just one specialist but five specialists confirm that it wasn't the antibiotic causing the problem. I wouldn't believe you if your tongue came notarized. Are your pants on fire? You're outrageous. Five specialists indeed. By the way, could any of those FIVE specialists tell you what caused your problems. Aren't you embarrassed? Do you really think we are medical idiots?

LEV
[QUOTE=Maz-aust]

Goodness me guys --- seems this thread is a reading priority, everyone wants to post on it!

[/QUOTE]

Yep - you're pretty damn funny! Better than Tuesday night TV, anyway.Wink
LOL lev, and to think those specialist told her she needs to get on conventional before pra turns into ra, those drs are morons but they are right  on about cause of her attack...........still roflmao[QUOTE=Dalmatinka][QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!]Dalmatinka -
 
Nobody is putting down the road you decide to take.  You are the one that is lashing out now and that's uncalled for as you made your decision. 
 
I am very excited you are still into researching because I seriously doubt most mainstream docs will go along with either homeopathy or bioenergy.  Vitamins and herbs require knowledge in their implementation or one could seriously set themselves back. 
 
Knowledge is power.
 
Pip
[/QUOTE]
 
Actually you are lashing out at me and again putting down the road I choose to take by saying that mainstream doctors will not approve it. Most RDs dont approve of AP if I am not mistaken.  Also I am not stupid I know that combining certain herbal preparations could be dangerous so I am seeing a herbalist.  I also am reading up on vitamins and consulting with my doctor about how to use them.  Not all doctors are crooks some actually want to see you well no matter how you do it.   Also I never lashed out, I actually said I was happy that AP was working for those of you that used it but that I had never felt worse in my life when I was on it.
 
There is always an underlying tone of criticism in your posts for anything that is not AP and I for one am tired of it.  I just chose to speak up, I am sure many others share my opinion.
 
Regards,
 
Maria
[/QUOTE]
 
Anybody taking bets on how long Babs will ignore her new pledge?  Last nights lasted, what, 2 minutes?  The weeks before lasts...a day?
 
Dalmatinka -
 
You have a mainstream doc willing to do homeopathy and bioenergy?  This doc is willing to work with an herbalist?  And you're in America?  You're not in America, are you?  You're in a country with socialized medicine, aren't you?  You know as well as we do that mainstream medical doctors in the US are going to pat you on the hand and say 'come back and see me when you want the 'real' meds'. 
 
Nobody is saying anything about your choices.  You left and were not heard from again for months.  Then you come back and post something along the lines of 'listen to your doctors' and another thing that went basically 'you spend too much time researching'.  And you don't consider that lashing out?
 
I think you are the best example of the 'fear of my own decisions' I've ever seen.   You started AP, herxed immediately, quit (knowing it was a herx) and have chosen the 'feel better now' over the 'feel better later' model.  That was your choice.  Period.  Nobody harassed you into keeping going.  You were out and I respected that.  But somehow, you're upset at me for that?  Somehow you're skipping the part about 'it was your decision' and have turned it around to an 'underlying tone of criticism in your posts for anything that is not AP'. 
 
Yet you still don't entirely believe in mainstream American med - you didn't get Remicade because they couldn't find a vein?  You couldn't go back?  Now it's bioenergy and herbs?
 
Good luck in your chosen path.
 
Pip
[/QUOTE]
 
Now you are criticizing me because I live in Croatia????  Honey most doctors here put American doctors to shame!!!  And what I had from your so called AP therapy was not a herx, I have never felt so bad in my life and my GP took me off of the antibiotics saying it was an allergic reaction and I was fine within 1 day!  And another thing I went several times for Remicade and they couldnt get a vein and I didnt get it through insurance I was paying for it out of my own pocket!  And I am willing to pay for it here if I can get it and I am sure they will find a vein here.  That is if I decide to try it.  My body, my choice.  You chose AP.  A few years down the road when you are screaming in pain and cant walk come back and criticize me for my choices.  I will be in remission and enjoying life. 
[/QUOTE]
 
 

Hi Maz!

Unfortunately Jas is right - I just assumed it was the antibiotics - I didn't realize they'd been ruled out.  I thought abx with a myco basis (per the search) was more logical than the Volteran.  And I believe it was Jas who said the Volteran wasn't such a high dose.
 
You know something, I've been having such fun here the last couple of days, I don't think I'm gonna move on.  I'll stay here AND go back to AF.  Wanna keep having fun with these guys?  I mean, it's soooo easy.  LOL
 
Dalmatinka -
 
You are mistaken and apparently whatever med you are on is causing some sort of weird reaction to your reasoning capabilities.  I was AMAZED you had these kind of options that we don't get here.  The fact that you are avoiding socialized medicine instead of availing yourself of it, well, that's your option. 
 
However - I have one question tho.  How long are you giving yourself to get to remission on the path you chose? 
 
You said -
 
A few years down the road when you are screaming in pain and cant walk come back and criticize me for my choices.  I will be in remission and enjoying life. 
 
I'm willing to put my therapy on the line against your therapy.  I think I'm gonna get at least 7 years on AP before I have to get on the ladder.   Let's agree to meet back here in 8/13.  That will be my 7 year aniversary.  Can you last until then?
 
I understand your anger and what life dealt you.  If you don't make it that far, I'll still be here for you and will help you.
 
Pip
PS - if you are still researching, what you sent me in PM about your herx is NOT an allergic reaction.  Pity your doc didn't know that.  Hope you don't blame him later.
Watch out Dalmatinka,

The next step is for Pip and her 6'4" or 6' 2" husband to hunt you down and attack you. "Her therapy" and "your therapy", she forgets to mention "her disease" and "your disease", two totally different diseases here at this rheumatoid arthritis forum.

LEV

I just have one question for you idiots --- when you get admitted to a hospital in the States do you only have one doctor, or one specialist available to you;  You poor things, why don't you come over here and enjoy our hospital care ....

 
Pip, 
 
Glad to hear you are having such fun !! 
Good isn't it, really fills an afternoon with laughter. 
I just love reving them up - they are sooooo gullible - they bite back every time.
 
Now I have someone with me who can see through the crap they dish out and just have fun with them.
 
The pity is that they actually believe they are experts in everything, such a shame for so called adults to always yield to their child side and behave like 10-14 yr old bullies.   
 
Maz,
ps - asked Babs what she thought of GM being told by your President to stop being a welfare case, no answer yet.  Will be interested in her reply, should she deign to respond any time soon .... 
Maz-aust2009-03-31 16:42:08[QUOTE=Pip!]PS - if you are still researching, what you sent me in PM about your herx is NOT an allergic reaction.  Pity your doc didn't know that.  Hope you don't blame him later.[/QUOTE]
 
 
Babs - you're still here !!!  Oh goody !!![QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!]Dalmatinka -
 
I understand your anger and what life dealt you.  If you don't make it that far, I'll still be here for you and will help you.
 
Pip
 
[/QUOTE]
 
Babs - you missed this part.  Now which of you have ever offered the same?

Ok - apologies people, I got carried away having some scarcastic fun ....

Dalmantinka,
 
I don't know you, but from your outburst you must be having a hard time of it and I am truly sorry you feel like that.  I have no particular thoughts on whatever treatment path you or anyone else chooses to use to battle your disease & symptoms - although I do hope it works or at the very least that it gives you some relief. 
 
There is no doubt that RA is a painful debilitating disease and that people would try anything to stop it. 
 
I am trying to stop my disease progressing/changing into RA and for now I am having good results from AP -- back when I was flaring and in so much pain I would have done anything just as long as it stopped the pain.
 
I have no idea about the treatment path you have chosen but am interested to learn.
 
Maz
[QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!]Dalmatinka -
 
Nobody is putting down the road you decide to take.  You are the one that is lashing out now and that's uncalled for as you made your decision. 
 
I am very excited you are still into researching because I seriously doubt most mainstream docs will go along with either homeopathy or bioenergy.  Vitamins and herbs require knowledge in their implementation or one could seriously set themselves back. 
 
Knowledge is power.
 
Pip
[/QUOTE]
 
Actually you are lashing out at me and again putting down the road I choose to take by saying that mainstream doctors will not approve it. Most RDs dont approve of AP if I am not mistaken.  Also I am not stupid I know that combining certain herbal preparations could be dangerous so I am seeing a herbalist.  I also am reading up on vitamins and consulting with my doctor about how to use them.  Not all doctors are crooks some actually want to see you well no matter how you do it.   Also I never lashed out, I actually said I was happy that AP was working for those of you that used it but that I had never felt worse in my life when I was on it.
 
There is always an underlying tone of criticism in your posts for anything that is not AP and I for one am tired of it.  I just chose to speak up, I am sure many others share my opinion.
 
Regards,
 
Maria
[/QUOTE]
 
Anybody taking bets on how long Babs will ignore her new pledge?  Last nights lasted, what, 2 minutes?  The weeks before lasts...a day?
 
Dalmatinka -
 
You have a mainstream doc willing to do homeopathy and bioenergy?  This doc is willing to work with an herbalist?  And you're in America?  You're not in America, are you?  You're in a country with socialized medicine, aren't you?  You know as well as we do that mainstream medical doctors in the US are going to pat you on the hand and say 'come back and see me when you want the 'real' meds'. 
 
Nobody is saying anything about your choices.  You left and were not heard from again for months.  Then you come back and post something along the lines of 'listen to your doctors' and another thing that went basically 'you spend too much time researching'.  And you don't consider that lashing out?
 
I think you are the best example of the 'fear of my own decisions' I've ever seen.   You started AP, herxed immediately, quit (knowing it was a herx) and have chosen the 'feel better now' over the 'feel better later' model.  That was your choice.  Period.  Nobody harassed you into keeping going.  You were out and I respected that.  But somehow, you're upset at me for that?  Somehow you're skipping the part about 'it was your decision' and have turned it around to an 'underlying tone of criticism in your posts for anything that is not AP'. 
 
Yet you still don't entirely believe in mainstream American med - you didn't get Remicade because they couldn't find a vein?  You couldn't go back?  Now it's bioenergy and herbs?
 
Good luck in your chosen path.
 
Pip
[/QUOTE]
 
Now you are criticizing me because I live in Croatia????  Honey most doctors here put American doctors to shame!!!  And what I had from your so called AP therapy was not a herx, I have never felt so bad in my life and my GP took me off of the antibiotics saying it was an allergic reaction and I was fine within 1 day!  And another thing I went several times for Remicade and they couldnt get a vein and I didnt get it through insurance I was paying for it out of my own pocket!  And I am willing to pay for it here if I can get it and I am sure they will find a vein here.  That is if I decide to try it.  My body, my choice.  You chose AP.  A few years down the road when you are screaming in pain and cant walk come back and criticize me for my choices.  I will be in remission and enjoying life. 
[/QUOTE]
 
 

Hi Maz!

Unfortunately Jas is right - I just assumed it was the antibiotics - I didn't realize they'd been ruled out.  I thought abx with a myco basis (per the search) was more logical than the Volteran.  And I believe it was Jas who said the Volteran wasn't such a high dose.
 
You know something, I've been having such fun here the last couple of days, I don't think I'm gonna move on.  I'll stay here AND go back to AF.  Wanna keep having fun with these guys?  I mean, it's soooo easy.  LOL
 
Dalmatinka -
 
You are mistaken and apparently whatever med you are on is causing some sort of weird reaction to your reasoning capabilities.  I was AMAZED you had these kind of options that we don't get here.  The fact that you are avoiding socialized medicine instead of availing yourself of it, well, that's your option. 
 
However - I have one question tho.  How long are you giving yourself to get to remission on the path you chose? 
 
You said -
 
A few years down the road when you are screaming in pain and cant walk come back and criticize me for my choices.  I will be in remission and enjoying life. 
 
I'm willing to put my therapy on the line against your therapy.  I think I'm gonna get at least 7 years on AP before I have to get on the ladder.   Let's agree to meet back here in 8/13.  That will be my 7 year aniversary.  Can you last until then?
 
I understand your anger and what life dealt you.  If you don't make it that far, I'll still be here for you and will help you.
 
Pip
PS - if you are still researching, what you sent me in PM about your herx is NOT an allergic reaction.  Pity your doc didn't know that.  Hope you don't blame him later.
[/QUOTE]
 
I have no anger towards what life dealt me and I am a very happy person.  I accept that I have RA and am willing to do whatever I can do to help myself.  Oh and what I had WAS an allergic reaction because I broke out in a terrible rash all over my body and had to go for infusions every day for two weeks to was the antibiotics out of my system.  Since you like medicine so much why not get a medical degree and then tell me my doctor who is one of the top doctors in Croatia that she is wrong? 
 
I definately DO NOT WANT NOR NEED YOUR HELP!  And as far as how long I am giving myself, I have had RA for 18 years.  It will take as long as it takes and I am willing to fight and have been fighting this disease for 18 years.  You have PRA which is a totally different disease.  You have not suffered the way I or many of us have.  The fact that antibiotics worked for you is the reason for this as Lev has pointed out so many times YOU HAVE PRA NOT RA!   So dont compare yourself to me or others that have RA.
 
And another thing, before you start saying that we have socialized medicine here and the like, Croatia has been democratic for the past 15 years.  We fought a bitter war to achieve this status so there is no socialized medicine here.  I wrote my post last night after working a 14 hour day so I was tired.  I unlike you do not spend my entire day on the internet researching diseases.  Look up Croatian history since you like to research so much.
 
AP is not the be all end all.  Maybe one day you will understand that.
Dalmatinka2009-04-01 01:52:56[QUOTE=levlarry]Watch out Dalmatinka,

The next step is for Pip and her 6'4" or 6' 2" husband to hunt you down and attack you. "Her therapy" and "your therapy", she forgets to mention "her disease" and "your disease", two totally different diseases here at this rheumatoid arthritis forum.

LEV
[/QUOTE]
 
LOL Lev, I am not worried, she wouldnt be able to find Croatia Wink  All she knows how to do is research diseases and dispense medical advice.
 
I would like her to live with RA for 24 hrs.  Forget it she wouldnt last 1 hour! Smile
[QUOTE=Maz-aust]

Ok - apologies people, I got carried away having some scarcastic fun ....

Dalmantinka,
 
I don't know you, but from your outburst you must be having a hard time of it and I am truly sorry you feel like that.  I have no particular thoughts on whatever treatment path you or anyone else chooses to use to battle your disease & symptoms - although I do hope it works or at the very least that it gives you some relief. 
 
There is no doubt that RA is a painful debilitating disease and that people would try anything to stop it. 
 
I am trying to stop my disease progressing/changing into RA and for now I am having good results from AP -- back when I was flaring and in so much pain I would have done anything just as long as it stopped the pain.
 
I have no idea about the treatment path you have chosen but am interested to learn.
 
Maz
[/QUOTE]
 
Hi Maz,
 
Actually I am quite ok and have nothing against those of you for whom AP is working, I am happy for you!  I resent Pip saying that I am not right, that I did not have an allergic reaction and that my doctors are totally wrong. 
 
I have been fighting RA for 18 years now and am tired of the ups and downs.  I am willing to do anything to go into remission.  That is why I tried AP in the first place.  It did not work for me just as other meds have not worked for me.  That is life.  I just dont like being told that I am the one who is wrong and that the antibiotics and Pip are some kinds of Gods that cant be questioned.
 
I am happy that AP is helping you and sorry for your problems with pancreatitis.  My Dad was in the hospital for one month with an attack and believe me it was scary!
 
I wish you the best of luck!
 
Maria

.

justsaynoemore2009-06-17 16:44:53He's using it to deliver abx and anti-cancer meds?  It's an alklizer?
 
Pip
[QUOTE=Pip!]He's using it to deliver abx and anti-cancer meds?  It's an alklizer?
 
Pip
[/QUOTE]

Are you confusing the alkanes/alkenes/alkynes with acid/alkali chemistry?
Probably.

Hi Maria,

Although I understand what you are saying about the reaction to AP etc, personally I wouldn't care if it was an allergic reaction to the abx or a herx or whatever it was, I don't need to put a name to it, I just want to feel better.  If Pip wants to believe you had a herx and you want to believe it was an allergic reaction to the abx what does it really matter; it's over, past, gone, and you are Ok now. 
 
Apart from when I am 'having fun as I call it' with people who set themselves up to be experts in all things, I am genuinely interested in learning all I can about RA, you never know I might just get it --- and I will do anything I can to stay off the trad meds given out by doctors.  Of course I have my own views about the trad meds, and yes my views are obviously tainted by not only the stories I hear (including some told by my own doctors & friends of mine who are doctors) but first hand because of my husband's reaction to mtx; he takes 6-8 mtx every Frid night for psoriasis, and it works, which is great; but there is a side effect, and that is that he can't even throw off a common cold now, his immune system is so depleted by the mtx. 
 
If I had RA for 18 yrs I would certainly be looking for any treatment out there that will help.
 
I am learning all I can about the traditional medications used for AI diseases & about AP & Natural therapies; so if there is yet another treatment path, such as the one you are planning on going down, I would be only too pleased to hear about it and how it works.
 
I know I don't have RA, I make that perfectly clear to anyone I am talking to, but may I 
remind everyone that the treatment path used by your doctors and health professionals to treat your RA is the same treatment paths used to treat my disease and a lot of AI diseases as well.  Surely that qualifies me to be able to have an opinion.
 
It bothers me that there is that them and us mentality - my disease is more painful than your disease - my disease can destroy my joints your doesn't - surely common sense should prevail, does it really matter who has what.  We learn from each other!!
 
I would hope that we can all put our differences aside and get on with learning and supporting each other, we have diseases that need to be addressed, we have other problems & issues that need to be addressed and yes we sometimes have pain.  We can all learn from each other as long as we listen.......
 
Maz
 
 
  
Maz-aust2009-04-01 17:09:53

Maz

I agree with you totally.  It has been said so many times....what works for one does not mean that it will work for another.  My beliefs are different than the next guys but does that mean I should close my mind to what someone else thinks.  It would be so nice to see this board do some healing and not put up the brick walls to something or someone that is different.

Thanks Maz
open minds are beautiful things....I think that open minded can only be so opened. When we allow someone without a medical degree and without our disease to come to this forum and try to tell us how to manage our disease by using some "miracle cure", we need to be open minded enough to ask for the science and medical data and clinical trials. When those same people start calling us names and making derogatory remarks about us because we asked for the science as Maz and her ilk do, it's time to open the door and close the mind. It's just that simple. I take offense to Maz calling us idiots in one of her posts and then say that she's [QUOTE] 'having fun as I call it' with people who set themselves up to be experts in all things, I am genuinely interested in learning all I can about RA, you never know I might just get it. [END QUOTE]. Hey Maz, we are experts concerning rheumatoid arthritis, we live it, you idiot. And oh yeah, I don't know of many people whose immune systems are shut down by MTX. I don't believe a thing you say. Even the Palindromic forum admonished you for trying to sell your miracle cure and calling those that take traditionals as wrong. You came to this forum at Pip's request to do battle with me, you are an idiot at best and people, that is me being nice.

LEV

To those of you who agree with me thankyou,,,,,,                                                             Now lets get on with the job about learning and support.

My update:
I had my joint consult with Dr D & Lynn (the naturopath she works with) last night and Lynn found a virus in my system that wasn't there before --- Dr D decided there and then to change my abx - so out with the Doxy and in with the Ceclor CD - with a check in a month.
Dr D also said I am not the norm and it is obvious that my abx will need to be changed/tweaked every few mths.  (Yes Maria, I found a doctor who works with a naturopath, a rare animal here in Oz)  
 
I am so glad they found something, it just may be what sparked off my pancreatic attack?
Anyway, only a few weeks til I have the MRI, hopefully it will be negative and then I can stop worrying about having another.  (Interesting to note that I can't find anything written anywhere about Voltaren v/s the pancreas). 
 
It's April and my birthday soon - I have asked for a 'new body' 'cause this one sucks.  Dr D said they don't have that many body parts available so we are stuck with resurrecting the old one ... party pooper!
 
(Edited to correct the spelling mistakes, that's what you get for touch typing)
 
 
Maz-aust2009-04-01 17:30:22Here we go again, another personal attack!! 
 
Well Lev really I don't care what you think of me, but really get some balls and tell the truth....
 
I tell any new person to research, learn, read & listen -- learn all about the various treatment paths available, then make an informed decision as to which way they want to go. 
 
I have NEVER said AP was the only treatment that worked, I have said I know people who use AP and they say it works for them.  I have also said I know a few people who use traditional medications and it is working for them too.
 
Lev if you are having success with your treatment good luck to you, I don't need science & clinical trials to back up your statement; you say it is working, I believe you!
   
If someone says AP is working for them why do you need scientific back up and clinical trials to believe them?  
 
The truth about your posts is that they are always negative, I have never read a post of yours that gives anyone support.     
 
I want to know about RA, what better place could I come to than here.  If I want to learn about RA I should be talking to people who say they have RA.  They are the experts, they live with the disease!! 
 
Edited to put this in:
ps -- Lev if you don't believe anything I say, why read my posts !!  
 
Maz-aust2009-04-01 18:07:44[QUOTE=levlarry]I think that open minded can only be so opened. When we allow someone without a medical degree and without our disease to come to this forum and try to tell us how to manage our disease by using some "miracle cure", we need to be open minded enough to ask for the science and medical data and clinical trials. When those same people start calling us names and making derogatory remarks about us because we asked for the science as Maz and her ilk do, it's time to open the door and close the mind. It's just that simple. I take offense to Maz calling us idiots in one of her posts and then say that she's [QUOTE] 'having fun as I call it' with people who set themselves up to be experts in all things, I am genuinely interested in learning all I can about RA, you never know I might just get it. [END QUOTE]. Hey Maz, we are experts concerning rheumatoid arthritis, we live it, you idiot. And oh yeah, I don't know of many people whose immune systems are shut down by MTX. I don't believe a thing you say. Even the Palindromic forum admonished you for trying to sell your miracle cure and calling those that take traditionals as wrong. You came to this forum at Pip's request to do battle with me, you are an idiot at best and people, that is me being nice.

LEV
[/QUOTE]
 
I call this "the pot calling the kettle black".  You will never ever get this board to quiet down like this.
 
When I first stumbled onto this site in Oct., 2007 Lev, yours was one of the first posts I read and it was one of the most scathing and totally out of control things I have ever seen.  Since then I have chosen not to read your posts until this one and see things have not changed since 2007.  If you have been on this board so long, you should be trying to calm things down not ramp them up.  There are more ways than one to get your point across.  
Hi Pat and thanks,
 
Believe me when I say most times I don't interact with people like Lev, and am sure he is now conjuring up more crap to throw at me - but guess what, he doesn't bother me, I actually feel sorry for him.
 
I only replied because I wanted the others on this forum to know I do think of them as 'the experts' in RA, they do live with it.  Who better to get information from.
 
I have now gone back to just ignoring him he is not worth a second of my time...
 
 
Edited to add:
Lev, you really do think highly of yourself,
Why on earth would I want to do battle with you, with all the hatred you have inside you, you are of no more interest to me than the slime at the bottom of the pond!
 
 
Maz-aust2009-04-01 18:47:38TeedOff,

I have rheumatoid arthritis. This is my forum. I am here because I have rheumatiod arthritis. I belong here. I can feel it. I can see it. I can sympathize with it and others that have it. I live it. You on the other hand don't have rheumatoid arthritis. You just bring your stink to this rheumatoid arthritis forum in support of a few other sickos that also don't have rheumatoid arthritis, but have some sick need to tell those of us with rheumatoid arthritis how we should live our rheumatoid arthritis lives. You really need to get a real life, TeedOff. Why are you here at an arthritis forum, seriously? yous have to be some kind of sick or are yous just that lonely? I say yous are some kind of mentally sick.

LEV
[QUOTE=levlarry]TeedOff,

I have rheumatoid arthritis. This is my forum. I am here because I have rheumatiod arthritis. I belong here. I can feel it. I can see it. I can sympathize with it and others that have it. I live it. You on the other hand don't have rheumatoid arthritis. You just bring your stink to this rheumatoid arthritis forum in support of a few other sickos that also don't have rheumatoid arthritis, but have some sick need to tell those of us with rheumatoid arthritis how we should live our rheumatoid arthritis lives. You really need to get a real life, TeedOff. Why are you here at an arthritis forum, seriously? yous have to be some kind of sick or are yous just that lonely? I say yous are some kind of mentally sick.

LEV
[/QUOTE]
 
How do you know what I have or have not got Larry?  You are here to criticize and belittle anyone and everyone who does not agree with you.  Take a look at 99% of the posters on here Larry.  They have every thing from raynauds to fibro and any other type of AI disease.  Are you telling them to get off of here because Larry says so?  You are not the only one that is sick Mr. and I think it is time that you realize that nor are you the keeper of the board.  It seems to be your lot in life to antagonize whoever you take a dislikd to.  Do you see what I mean by the viscious attacks?  There is no need for any of your BS and yet you insist on throwing it around.  THIS IS NOT YOUR BOARD.....PERIOD.
[QUOTE=TeedOff][QUOTE=levlarry]TeedOff,

I have rheumatoid arthritis. This is my forum. I am here because I have rheumatiod arthritis. I belong here. I can feel it. I can see it. I can sympathize with it and others that have it. I live it. You on the other hand don't have rheumatoid arthritis. You just bring your stink to this rheumatoid arthritis forum in support of a few other sickos that also don't have rheumatoid arthritis, but have some sick need to tell those of us with rheumatoid arthritis how we should live our rheumatoid arthritis lives. You really need to get a real life, TeedOff. Why are you here at an arthritis forum, seriously? yous have to be some kind of sick or are yous just that lonely? I say yous are some kind of mentally sick.

LEV
[/QUOTE]
 
How do you know what I have or have not got Larry?  You are here to criticize and belittle anyone and everyone who does not agree with you.  Take a look at 99% of the posters on here Larry.  They have every thing from raynauds to fibro and any other type of AI disease.  Are you telling them to get off of here because Larry says so?  You are not the only one that is sick Mr. and I think it is time that you realize that nor are you the keeper of the board.  It seems to be your lot in life to antagonize whoever you take a dislikd to.  Do you see what I mean by the viscious attacks?  There is no need for any of your BS and yet you insist on throwing it around.  THIS IS NOT YOUR BOARD.....PERIOD.
[/QUOTE]
 
 
 
Okay, I'll bite...what sort of AI disease do you have?  Not that you have to say...But it is kind of the elephant in the room now.....Wink
Oh and ps...Don't you know Lev is really Ernest....LOLLOLLOL[QUOTE=Maz-aust]
d Lynn found a virus in my system that wasn't there before --- Dr D decided there and then to change my abx - so out with the Doxy and in with the Ceclor CD - with a check in a month.
 
[/QUOTE]
Just curious as to why your Dr is changing your antibiotic in response to a virus.  Viruses do not respond to an antibiotic..The med you were prescribed is not part of the tetracycline family and can lead to antibiotic resistant bacteria.
 
This is honest curiousity its not meant to be a confrontational question
Yeah, I'm curious now myself..........[QUOTE=Lynn49]Oh and ps...Don't you know Lev is really Ernest....LOLLOLLOL[/QUOTE]
 
Oh Crap.....do you mean I stepped in the elephant poo.  EEEWWWW!
 
By the way...I love the articles you post whether they apply to me or not they are very informative.  Thanks.
Pat and Maz -
 
We need to just ignore him (altho I get riled sometimes).  And don't bother correcting his misconceptions, it's the only way he can live with this disease.  Seriously, he's one that has to have it worse than others; more of that victim mentality.  He can't remember what you say anyway.
 
Buckeye and Reader -
 
I'm not thrilled with some of the things this doc says, but hey, she's a doc so I guess she knows more than me.  I wasn't aware of that abx and did a quick google search for it + mycoplasma and it's coming up it's effective against them.  I just wish they'd leave her on doxy/mino.  I mean, if she has co-infections, well, it could help, but 'less is more' IMHO.
 
Pip
Nah, that's just a rumor.  If it were true....
 
Pip

Yes I know - I wrote virus but meant bacteria.  I took my grandson to the doctor's this morning and he has a virus, then I came to work and jumped onto the net I just wasn't thinking ..... sorry !!

The reason she wanted me off the doxy is because she doesn't want me taking more than 4 abx at a time ...
 
Maz
ps - I didn't take it as confrontational ...

Hi Pip,

It's ok --

Maybe I missed something, but if you are referring to my Dr - I agree with you, I don't agree with everything she says either, but it's been a long long time since I had a flare .... so I'm for it.

Cheers
Maz

Edited to put this bit in:
Dr D is a well known doctor on RB and visits the States for any and all AP conventions or whatever you call them, so my guess is that she definitely knows more than me, plus there are only 3 Dr's here in the State I live in, that I know of, who prescribe AP -  
 
Maz-aust2009-04-01 20:00:30[QUOTE=levlarry]I think that open minded can only be so opened. When we allow someone without a medical degree and without our disease to come to this forum and try to tell us how to manage our disease by using some "miracle cure", we need to be open minded enough to ask for the science and medical data and clinical trials. When those same people start calling us names and making derogatory remarks about us because we asked for the science as Maz and her ilk do, it's time to open the door and close the mind. It's just that simple. I take offense to Maz calling us idiots in one of her posts and then say that she's [QUOTE] 'having fun as I call it' with people who set themselves up to be experts in all things, I am genuinely interested in learning all I can about RA, you never know I might just get it. [END QUOTE]. Hey Maz, we are experts concerning rheumatoid arthritis, we live it, you idiot. And oh yeah, I don't know of many people whose immune systems are shut down by MTX. I don't believe a thing you say. Even the Palindromic forum admonished you for trying to sell your miracle cure and calling those that take traditionals as wrong. You came to this forum at Pip's request to do battle with me, you are an idiot at best and people, that is me being nice.

LEV
[/QUOTE]
 
I was directing the open minded question to the peeps who live in this thread.......... 
 
and I have to say that often, I've found myself agreeing w/ lev..... in bits and pieces Wink
 
and Teed didn't answer............Shocked
[/QUOTE]
 
I was directing the open minded question to the peeps who live in this thread.......... 
 
and I have to say that often, I've found myself agreeing w/ lev..... in bits and pieces Wink
 
and Teed didn't answer............Shocked
[/QUOTE]
 
Those 'peeps who live in this thread .....' 
 
I do hope you are including you in that statement Babs ....!!!
 
 
LOL, funny Maz!
 
Pip
uh no.. Maz
 
I don't dwell in the land of AP......... 
 
I come to visit on occasion...........  Like I do the zoo, kwim?  LOL
 
there.... now can you TAKE  a joke?
Pip.. you must be like the singers... you do back up very very well!!  Thumbs%20Up

LMAO

I always wanted to be a Pip - did they not have cool dance moves?

Babs my love I wondered how long it would be before you came into the fray !!! 

Do you have anything positive to say this time???
 
 

Maz - I think she's joking.  All those little smileys...

Pip
[QUOTE=babs10]uh no.. Maz
 
I don't dwell in the land of AP......... 
 
I come to visit on occasion...........  Like I do the zoo, kwim?  LOL
 
there.... now can you TAKE  a joke?
[/QUOTE]
 
Babs, you heard - our Zoo is rated as the one of the best in the world !!  welcome !!
Think you would enjoy the monkey enclosure over the butterfly zone though.
 
 
 
LMAO Again!
 
Lions and Tigers and Bears...oh my!

Tongue  Pip ---

You crack me up .......

Well, I don't like the penguins - uppity things!
Hey Pip & Pat,
Have you noticed, the fools don't like it when they can't upset someone !!! Cry
 
 
Aw - Pip, 
 
Fairy Penguins are cute !!!
and
What about those Emperor Penguins, they are really something else, they get the men to take care of the kids and beat the hell out of the Antarctic back to the land of warm oceans as quickly as their little flippers can manage.
 
Butterflys are so gentle and colourful ---
 
 
 
 
 
 
madz....you call , with abundance, people on this forum idiots; fools, morons...the beat goes on
???? Why do you come to this forum if you hate the people so much?????
Is it you can't stand to keep up pollyanna persona at roadback, so you come here to have your brand of fun which is negative and dark.
for someone that worries all the time and is sooooo stressed how could this be healthy?Wacko
[QUOTE=Maz-aust]Here we go again, another personal attack!! 
 
Well Lev really I don't care what you think of me, but really get some balls and tell the truth....
 
I tell any new person to research, learn, read & listen -- learn all about the various treatment paths available, then make an informed decision as to which way they want to go. 
 
I have NEVER said AP was the only treatment that worked, I have said I know people who use AP and they say it works for them.  I have also said I know a few people who use traditional medications and it is working for them too.
 
Lev if you are having success with your treatment good luck to you, I don't need science & clinical trials to back up your statement; you say it is working, I believe you!
   
If someone says AP is working for them why do you need scientific back up and clinical trials to believe them?  
 
The truth about your posts is that they are always negative, I have never read a post of yours that gives anyone support.     
 
I want to know about RA, what better place could I come to than here.  If I want to learn about RA I should be talking to people who say they have RA.  They are the experts, they live with the disease!! 
 
Edited to put this in:
ps -- Lev if you don't believe anything I say, why read my posts !!  
 
[/QUOTE]

C
 U
  N
   T

of the day
Mabus -
 
Are you on Rituxin?
 
Pip
[QUOTE=Pip!]Mabus -
 
Are you on Rituxin?
 
Pip
[/QUOTE]

I was wondering the same thing.
FYI - two Maz's on Roadback, one in Aust., one in US.  US Maz has never posted here.  And Lyndzee here is not Lynnie there.  In case anyone was having a problem keeping that straight. I finally got the lemon/OO drink again.  Herxing today after the doxy yesterday.Has it helped yet?Yes to the whole lemon, although I need to make it more often but with moving and one thing and another have not been able to.not sure what your point isWacko&WackoThe whole lemon definitely helps.[QUOTE=Suzanne] [QUOTE=Pip!]Mabus -
 
Are you on Rituxin?
 
Pip
[/QUOTE]

I was wondering the same thing.
[/QUOTE]
 
you BETTER not be insinuating anything toward mabus by this comment....
 
 
Babs-
 
Live and let live, hon.   You seem really uptight.

Jan.. do not speak condescendingly to me.. hon...

I'm not uptight.. I'm leaving in three hours to MIAMI baby.

 
and If I wish to be posting in defense of a friend..... it is my right.
babs102009-04-02 10:03:50I will express myself as I desire.then give the same courtesy to others.... that you wish for yourself..
 
live and let live.. remember????????
You are not doing what you say!!!! [QUOTE=babs10]


I'm not uptight.. I'm leaving in three hours to MIAMI baby.

 
and If I wish to be posting in defense of a friend..... it is my right.
[/QUOTE]

Have a great trip, Babs!

I'm not sure what you felt the need to 'defend'?
Babs....have a wonderful trip and dont worry my feelings never get hurt from the assault patrol.
 
Jan.. i think you are a nice person but i wonder why you dont state your opinons concerning your buddies whos behavior is beyond civil and only echo in on others....seems strange but whatever
have a good day Big%20smile

Suzanne-

Good to hear from you.

Babs -

Again, you're a little jumpy.  Take a valium if its the travel that's got you worried.  It will help.
 
Mabus -
 
I wasn't insinuating anything.  I was asking a serious question.  Are you on Rituxin?
 
Pip
and again what is your point??.......not in need of internet diagnosis especially from someone who needs to get all those secondary problems handled from candida.......
and i do have a professional doctor with a license.....
and the answer to your question is NO so whats the point pip Clown
geesh telling people what medications they should be on, dont you spend any time with your family?
IT'S THE INTERNET PSYCHIC DOCTOR HOUR, WHAT A JOKE..still roflmao
Would you mind telling me which meds you've used and how you've gotten to this point? 
 
I am being serious here.
 
Pip
[QUOTE=Suzanne]FYI - two Maz's on Roadback, one in Aust., one in US.  US Maz has never posted here.  And Lyndzee here is not Lynnie there.  In case anyone was having a problem keeping that straight. [/QUOTE]
 
Huh???Confused  What have I done now??  Wink
You didn't do anything.  Mabus has trouble separating out 2 Maz'es and a Lynnie from a different board.
 
I love those Cadbury Eggs.  I want 10 in my Easter Basket!
 
Pip
[QUOTE=Pip!]Would you mind telling me which meds you've used and how you've gotten to this point? 
 
I am being serious here.
 
Pip
[/QUOTE]
Why should she have to tell you anything???? Who are you, Dr. House????? 
 
Mabus--Leave the fools to their research and self diagnosing they have nothing better to do IMHO Smile
hahaha....can you see the visual of Dr Gizmo now, puter tader with twinkes everywhere..cant walk thru the piles of paper..desert hair, army gear fighting the invisble critters...right out of the twilight zone
dalmatinka, she is just trolling and suzanne is on underwater detail
comedy thread is two clowns short of a circusLOL
I try and stay out of this 'drama', but I am just so disappointed with how you are treating people, Pip. I am just watching you and I am stunned.

I had much respect for you in the past and considered you a friend, but now...I just can't believe how nasty you are being to people. You have lowered yourself to LEV and that is sad.

I know you will all start attacking me for this post, but I don't care. Sometimes things need to be said.

What I am very, very sad about also is that from the way your behaving you are actually turning people off AP. The way you are acting is undermining your position not strengthening it. I am very sorry to see that happen as AP can be a very suitable therapy for some people. And it's best that those people have the most objective information to make their treatment decisions on.

JSNM attacked me a week or so ago, when I posted that how you are all treating people is not right, because I said Pip that I rarely see you support anyone on the board if it is not AP related or she can't give AP a 'plug'. Regardless of what treatment you use, if you have RA you have similar experiences and we all support each other in that. I rarely see you, Pip, especially lately bother to support anyone struggling with the impact of RA. Recently, there have been too threads where male members have been feeling suicidal. To give you credit, I do think you posted on one of them but that's unusual. It seems unless it's about you and AP, you are not interested in supporting anyone not in your AP crew.

Now, that's your choice but to me it shows were your priorities are.

Even LEV posted on Bob's thread supporting him.

And am so over your digs at Rituxan. OVER IT.

You have not been on it and know nothing about it.

And, don't have Rituxan fog. My brain and thinking are crystal clear.

Rituxan has given many of us with severe, agressive RA, (which you DO NOT have) a somewhat function life again...so stuff you, Pip.

Rituxan has meant that I have mostly been on my feet and not bedridden for the past year. Considering I am a single parent, that's kind of important!!!

Rituxan is the best biologic out there in my opinion and it has helped many RAer's, again NOT you, who have not had a response from other DMARD's because their RA has been so out of control.


And I simply don't get your Rituxan - brain fog snipe. RA causes brain fog. Fibro causes brain fog. People with those diseases deal with brain fog and it's not easy. So how about you show them some respect and stop making snide remarks about it.

My rheumy works with Roche, the company who make Rituxan in Australia. He is a consultant to them. Do I want rheumatologists working with pharmaceutical companies? You bet I do. They need consultant rheumatologists to help them make the best drug possible to help with this disease.

Dave, my rheumy, has watched me struggle with this disease from being so crippled I couldn't pick my three year old Neve up to now when I am on my feet most of the time and coping with life. Never in a million years would he be selling out my health to pharmaceutical companies. His primary interest is in seeing me function and as well as possible. Nothing else. You seem to have forgotten that mostly doctors become doctors to help people and if you believe that is not true then I am very sad for you that life has reduced you to that level of cynicism.

So now go for it. I'm sure you all can't wait to get stuck into me.


Oh, and Lyndee, where did you get the Bunny smilie? I want one. That is so cute.  Geez Dr. Pip, you are one powerful poster.  The ability to influence people about their health care, what power you have, its AMAZING. 
 
Cordelia - you posted that Pip has NEVER been supportive of anybody in this forum, and that is a lie, and you know it.
 
I would like to know what the non-APers who have invaded this thread are taking for medication.  What's the big secret?  Do they really even have RA?  Are they just fake posters paid for pimping for the pharmaceutical companies?
 
Actually, what I really want to know is why all you non-APers even care to post on this thread.  Please take your toys and get off this thread.  It's for people starting Antibiotic Protocol.  There is a huge forum for you to play in with your RA medications and problems.  Take your hatred, and your nastiness, and your stupidities over to another thread where they belong.  APers don't want your negativity, we are working on getting well.  Thank you. 
justsaynoemore2009-04-02 18:29:05[QUOTE=justsaynoemore]
I would like to know what the non-APers who have invaded this thread are taking for medication.  What's the big secret?  Do they really even have RA?  Are they just fake posters paid for pimping for the pharmaceutical companies?
 
Actually, what I really want to know is why all you non-APers even care to post on this thread.  Please take your toys and get off this thread.  It's for people starting Antibiotic Protocol.  There is a huge forum for you to play in with your RA medications and problems.  Take your hatred, and your nastiness, and your stupidities over to another thread where they belong.  APers don't want your negativity, we are working on getting well.  Thank you. 
[/QUOTE]
 
 
Oh please, get over yourself!  This is a public forum and people can post on any thread that they please...............And for the record, I use Rituxan.  I'm in remission with no brain fog and none of the nastiness that seems to pervade the minds of the "healthy and happy" aper's......
[QUOTE=Lynn49][QUOTE=justsaynoemore]
I would like to know what the non-APers who have invaded this thread are taking for medication.  What's the big secret?  Do they really even have RA?  Are they just fake posters paid for pimping for the pharmaceutical companies?
 
Actually, what I really want to know is why all you non-APers even care to post on this thread.  Please take your toys and get off this thread.  It's for people starting Antibiotic Protocol.  There is a huge forum for you to play in with your RA medications and problems.  Take your hatred, and your nastiness, and your stupidities over to another thread where they belong.  APers don't want your negativity, we are working on getting well.  Thank you. 
[/QUOTE]
 
 
Oh please, get over yourself!  This is a public forum and people can post on any thread that they please...............And for the record, I use Rituxan.  I'm in remission with no brain fog and none of the nastiness that seems to pervade the minds of the "healthy and happy" aper's......
[/QUOTE]
 
Lynn, go away, please, you have the right to post here, we just don't want you and your friends' negative attitudes towards us posted on this thread.  Do it somewhere else, you have a whole forum to beat us up on.  But no, you all think its FUNNY and try to ruin something that is vitally important for OUR HEALTH AND WELL BEING.  If you would all STOP  f&cking with us in here because YOU ARE NOT ON ANTIBIOTIC PROTOCOL, your problems would be over.  GO AWAY.  Thank you. 

Nope, sorry that's not going to happen.  I'll comment on any post and any thread that I want too.........

[QUOTE=Lynn49]

Nope, sorry that's not going to happen.  I'll comment on any post and any thread that I want too.........

[/QUOTE]
 
Preserved for the record.  You really are a piece of work. 
So are you Miss Potty Mouth.... Wink

preserved for the record...watch out Lynn...i would be shakin in my boots..ohhhhhh

and JSNM have you not noticed that 'YOU APERS" have the most vile and personally nasty insults spewing than anyone else on this board, take the blinders off honey
if you guys could tone down your hatred, these post would not be here
how can you blindly follow your leader without seeing this, are you that gullible?????
[QUOTE=justsaynoemore][QUOTE=Lynn49][QUOTE=justsaynoemore]
I would like to know what the non-APers who have invaded this thread are taking for medication.  What's the big secret?  Do they really even have RA?  Are they just fake posters paid for pimping for the pharmaceutical companies?
 
Actually, what I really want to know is why all you non-APers even care to post on this thread.  Please take your toys and get off this thread.  It's for people starting Antibiotic Protocol.  There is a huge forum for you to play in with your RA medications and problems.  Take your hatred, and your nastiness, and your stupidities over to another thread where they belong.  APers don't want your negativity, we are working on getting well.  Thank you. 
[/QUOTE]

First of all, I didn't say 'always'. I said mostly. You just can't stand anyone questioning your Guru, JSNM. Pip has been put up on a guru pedestal and that is not healthy for anyone.

I wasn't nasty, JSNM, I am disappointed and sad which is completely different.

And I find it hard to stand by and say nothing when others are being attacked. Anyone. Not only one group or the other. If it's uncalled for then it's not okay.

And not for a minute, do I believe that anyone NOT on AP is negative. That is a lie, JSNM.

It's also a lie that all us non APer's have been hateful, nasty and stupid.

Many people over the past few weeks have asked sensible, logical questions and have been told they are nasty, negative or morons.

And I could point out a few others lies here but my intention here was simply to say what I thought and then leave you once again to whatever you do.

 
Lynn, go away, please, you have the right to post here, we just don't want you and your friends' negative attitudes towards us posted on this thread.  Do it somewhere else, you have a whole forum to beat us up on.  But no, you all think its FUNNY and try to ruin something that is vitally important for OUR HEALTH AND WELL BEING.  If you would all STOP  f&cking with us in here because YOU ARE NOT ON ANTIBIOTIC PROTOCOL, your problems would be over.  GO AWAY.  Thank you. 
[/QUOTE]

JSNM, don't swear at people. It's childish and uncalled for.

You can swear and tell lies about me, JSNM but everyone on this site knows who I am and that I will be here supporting others through their RA journey long after you've all taken your AP football and gone elsewhere.

And here's another lie. Unfortunately, Pip and Maz this week have been following everyone else around the board to non AP posts mouthing off at everyone from Mabus, Babs, Lynne and Jas. Then you tell us (non APers who are stupid) to stay off your thread. No one here owns a thread.

Then I would like you, Pip, Maz to only post here and not anywhere else then. LOL LOL LOL

Yeah right, like that's going to happen. Please. LOL LOL LOL

Now, that's enough lies for the moment. I am getting off this thread because I have said what I needed to. And I am absolutely not interested in anything else you have to say.


Excellent Cordelia, the best part is neither Pip nor Maz have RA, so what the heck are they doing here besides trying to get people into their cult.[QUOTE=Cordelia] I try and stay out of this 'drama', but I am just so disappointed with how you are treating people, Pip. I am just watching you and I am stunned.

I had much respect for you in the past and considered you a friend, but now...I just can't believe how nasty you are being to people. You have lowered yourself to LEV and that is sad.

I know you will all start attacking me for this post, but I don't care. Sometimes things need to be said.

What I am very, very sad about also is that from the way your behaving you are actually turning people off AP. The way you are acting is undermining your position not strengthening it. I am very sorry to see that happen as AP can be a very suitable therapy for some people. And it's best that those people have the most objective information to make their treatment decisions on.

JSNM attacked me a week or so ago, when I posted that how you are all treating people is not right, because I said Pip that I rarely see you support anyone on the board if it is not AP related or she can't give AP a 'plug'. Regardless of what treatment you use, if you have RA you have similar experiences and we all support each other in that. I rarely see you, Pip, especially lately bother to support anyone struggling with the impact of RA. Recently, there have been too threads where male members have been feeling suicidal. To give you credit, I do think you posted on one of them but that's unusual. It seems unless it's about you and AP, you are not interested in supporting anyone not in your AP crew.

Now, that's your choice but to me it shows were your priorities are.

Even LEV posted on Bob's thread supporting him.

And am so over your digs at Rituxan. OVER IT.

You have not been on it and know nothing about it.

And, don't have Rituxan fog. My brain and thinking are crystal clear.

Rituxan has given many of us with severe, agressive RA, (which you DO NOT have) a somewhat function life again...so stuff you, Pip.

Rituxan has meant that I have mostly been on my feet and not bedridden for the past year. Considering I am a single parent, that's kind of important!!!

Rituxan is the best biologic out there in my opinion and it has helped many RAer's, again NOT you, who have not had a response from other DMARD's because their RA has been so out of control.


And I simply don't get your Rituxan - brain fog snipe. RA causes brain fog. Fibro causes brain fog. People with those diseases deal with brain fog and it's not easy. So how about you show them some respect and stop making snide remarks about it.

My rheumy works with Roche, the company who make Rituxan in Australia. He is a consultant to them. Do I want rheumatologists working with pharmaceutical companies? You bet I do. They need consultant rheumatologists to help them make the best drug possible to help with this disease.

Dave, my rheumy, has watched me struggle with this disease from being so crippled I couldn't pick my three year old Neve up to now when I am on my feet most of the time and coping with life. Never in a million years would he be selling out my health to pharmaceutical companies. His primary interest is in seeing me function and as well as possible. Nothing else. You seem to have forgotten that mostly doctors become doctors to help people and if you believe that is not true then I am very sad for you that life has reduced you to that level of cynicism.

So now go for it. I'm sure you all can't wait to get stuck into me.


[/QUOTE] [QUOTE=Lynn49]So are you Miss Potty Mouth.... Wink[/QUOTE] [QUOTE=mabus]

preserved for the record...watch out Lynn...i would be shakin in my boots..ohhhhhh

and JSNM have you not noticed that 'YOU APERS" have the most vile and personally nasty insults spewing than anyone else on this board, take the blinders off honey
if you guys could tone down your hatred, these post would not be here
how can you blindly follow your leader without seeing this, are you that gullible?????
[/QUOTE] [QUOTE=Cordelia] [QUOTE=justsaynoemore][QUOTE=Lynn49][QUOTE=justsaynoemore]
I would like to know what the non-APers who have invaded this thread are taking for medication.  What's the big secret?  Do they really even have RA?  Are they just fake posters paid for pimping for the pharmaceutical companies?
 
Actually, what I really want to know is why all you non-APers even care to post on this thread.  Please take your toys and get off this thread.  It's for people starting Antibiotic Protocol.  There is a huge forum for you to play in with your RA medications and problems.  Take your hatred, and your nastiness, and your stupidities over to another thread where they belong.  APers don't want your negativity, we are working on getting well.  Thank you. 
[/QUOTE]

First of all, I didn't say 'always'. I said mostly. You just can't stand anyone questioning your Guru, JSNM. Pip has been put up on a guru pedestal and that is not healthy for anyone.

I wasn't nasty, JSNM, I am disappointed and sad which is completely different.

And I find it hard to stand by and say nothing when others are being attacked. Anyone. Not only one group or the other. If it's uncalled for then it's not okay.

And not for a minute, do I believe that anyone NOT on AP is negative. That is a lie, JSNM.

It's also a lie that all us non APer's have been hateful, nasty and stupid.

Many people over the past few weeks have asked sensible, logical questions and have been told they are nasty, negative or morons.

And I could point out a few others lies here but my intention here was simply to say what I thought and then leave you once again to whatever you do.

 
Lynn, go away, please, you have the right to post here, we just don't want you and your friends' negative attitudes towards us posted on this thread.  Do it somewhere else, you have a whole forum to beat us up on.  But no, you all think its FUNNY and try to ruin something that is vitally important for OUR HEALTH AND WELL BEING.  If you would all STOP  f&cking with us in here because YOU ARE NOT ON ANTIBIOTIC PROTOCOL, your problems would be over.  GO AWAY.  Thank you. 
[/QUOTE]

JSNM, don't swear at people. It's childish and uncalled for.

You can swear and tell lies about me, JSNM but everyone on this site knows who I am and that I will be here supporting others through their RA journey long after you've all taken your AP football and gone elsewhere.

And here's another lie. Unfortunately, Pip and Maz this week have been following everyone else around the board to non AP posts mouthing off at everyone from Mabus, Babs, Lynne and Jas. Then you tell us (non APers who are stupid) to stay off your thread. No one here owns a thread.

Then I would like you, Pip, Maz to only post here and not anywhere else then. LOL LOL LOL

Yeah right, like that's going to happen. Please. LOL LOL LOL

Now, that's enough lies for the moment. I am getting off this thread because I have said what I needed to. And I am absolutely not interested in anything else you have to say.


[/QUOTE] I just am so sad at this whole group.  Have any of you noticed when you point your finger who are the other three fingers pointing to.
 
I did not see even one letter condemming the vile crap being thrown at Joonie and Whispered for no reason at all and it was far worse than what has been written here.  Shame.
TeedOff2009-04-02 21:19:31I'm sorry that I'm late to the party - we had softball practice today.
 
First up - Cordelia -
 
First I must apologize for not responding to your hate filled ranting PM.  I should have but it was so out of character that I decided that you must have just gone over the edge.  Then you posted a 'trying to maintain my previous level of support' thread and I was sure that was the case.  I had assumed that our friendship was over but we would manage to peacefully co-exist.
 
I think you need to understand my thought processes.  Babs had taken to following me around the board making belittling comments like she had done to another poster on AI.  Unlike most people, I can only take this kind of garbage for so long and realized Babs would need a 'taste of her own medicine' if she was ever going to stop that annoying behavior.  So, yes, I did follow her for two days.  Would you like to know why I stopped? 
 
Because I realized that Babs was incapable of realizing she 'started it'.  She just can't see it.  And she was way too ill equiped to defend herself from the very behavior she was instigating.  It was too much like 'shooting fish in a barrel' and I didn't like that feeling.  And then it hit me...really hit me...I felt sorry for Babs.  For some person who defines herself by how sick she is.  For some poor schmo who needs a world view that reinforces her life choices and who is incapable of 'seeing outside the box'. 
 
So I backed off and attempted to 'work' with her - meaning, don't antagonize and let her have her world view.  Sadly, she needs it to function.   She was so much fun and so into learning.  The cool, fun loving, inquisitive Babs is gone and in it's place...
 
To me, it's like saying goodbye to somebody I used to treasure. 
 
JSNM was understandably upset because of what she perceives as your 'lie'.  She doesn't understand that for your world view to work, I have to have never supported people on the traditional meds; never posted anything that wasn't an AP plug. 
 
To her, it is a lie.  To me, it is a lie.  To you, it's how you have to view your world in order for that world to work.
 
Because you don't know who I PM.  If I see a person in pain, I either post, or if it's bad enough, PM them.  I am not responsible for posts I don't see.  Some people actually tell me when I miss something important so I can get to the person that needs help.  And sometimes I don't even mention AP.  As you would remember if you looked thru our old emails and PM's like I did when you went nuts in that PM earlier this week. 
 
I am not a cynic, I am the polar opposite; I'm a romantic.  We have a world view that says people will do the right thing, at the right time, for the right reasons.  My diagnosis was a rude awakening that profit is defining our 'cure' and the evidence of 'therapies' to 'create a revenue stream' has grown.  But, unlike most people on AI, I can face what is apparently the true state of our 'cure'.  And once we face that truth, we can do the right thing, and work towards correcting the inequities that keep the sick people dependent, complacent, accepting of the status quo. 
 
So, explain to me how being a paid consultant of a Pharma company gets the patient the best drug possible?  He gets paid to get you into a study.  He gets sent on world travel for his continuing ed?  His perks are contingent on you doing well on his studies.  Very few docs stand up and stop the gravy train even when they notice something is going wrong.  Thankfully, in Australia, there is no-preemption.  We will eventually get the info of what's going on in your studies even tho we will never know in America.  Not until enough people are dead from the drug.
 
As a former friend, I would feel better if you had a doc that was that 'caring' who wasn't getting paid extra for 'studying' you.  But I can now see why your world view needs so much to hang on to that delusion.
 
Yes, I have made digs at Rituxan.  Mostly at Lev and his stupidity.  Yes, I think Lev is a moron.  And a bigoted one at that.  I will not apologize for that. 
 
However, todays post, as I corrected to Mabus, was a serious question.  Your ranting posts and PM's made me realize something, something that I considered huge and I was trying to find out if what I suspected was true, and if it was, then adjust my 'game plan' accordingly.
 
See, I have posted here, on the IPRS and on AF that if AP failed, I would consider Rituxan.  It even sounded like it was something that, combined with AP, might possibly bring about the 'cure' because of which cells it takes out.
 
But after your ranting, rambling PM's and posts, I had to re-evalutate. 
 
Because I've seen studies in Pubmed about Rituxan and brain cancer; brain lesions; brain damage.  I have never posted them because I don't keep a lot of the biologic research; most just say it works well; use with MTX, no matter what the biologic. 
 
So then I started thinking, what if Lev really can't remember?  What if what's going on with Cordy is that her memory is being effected (note my 'look at old emails' comment above).  That made me worried because my Plan B was now off the table.  I can see the trolls repeating the same garbage the 'real' people say, but I can't see CORDY doing that.  Unless her brain has been effected. 
 
So, then I started looking at the Rituxan people and they all seemed to be doing the same thing?  What the heck is it in that med that makes people lose their freakin' memory?
 
Look at how it's the Rituxan people foaming at the mouth, twisting words and meaning, heck, being unable to even fathom what was 'meant' from what was 'posted' - and this from people who were able to prior to starting that med. 
 
Frankly, and with all due respect, your posts and PM's were a wake up call, and for that, I am greatful, but no way in hell am I taking that med.  Because there is fog; and then there is whatever this is going on with you people. 
 
You say you simply can't see it?  I'm saying you are unable to see it.  Either psychologically, or even more scary, physiologically. 
 
There is something else you should know.  I had been joking when I said 'buy the book' but your response was the impetus to actually talk to people about writing one.  I went back and got your threads, some even had my responses on the same page, and most never mentioned AP.  Copies of you saying to Lev on one of his 'rabid dog' rants to not attack people who don't have RA; pain is pain.  Juxtaposed against the 'you don't have RA' you just posted, well, it looks kind of like you're losing your "Virgin Mary Mother of all Martyrs" halo. 
 
I see it; we all see it.  Cordy, you're a fraud. 
 
The idea terrifies you.  You don't have, and never will, the strength to do AP.  You can't leave your Mother-Martyr world view. 
 
So, in closing, I'd like to say that I had valued your friendship and will miss you as a friend. 
 
Pip
PS - I'll get to the other responses in the morning.  It's almost 11 right now and Fridays are my busy day.
 
I am not going to answer any of that angry ranting crap you just posted. The truth remains the truth and people who count see things how they truly are.

I only have one point I want to acknowledge.

Do I want my RD studying me????

ABSOLUTELY!!!

And not only do I want him to, I'll help him do so if I can.

YOU BET.

WHY?

If they don't study me how can they help others in better ways in the future.

If studying me will help others down the line. STUDY ME, I SAY!!!

DAH!

You have some weird doctor problem, Pip. I simply don't buy that every single RD except the ones you approve of is selling us all out to big Pharm.

I recommend you find a Big Pharm and go chain yourself to it. Maybe that will make you feel better.

I'm done.
Cordelia2009-04-02 23:19:33Hey Pip, I am on Rituxan and I am highly offended by what you said, I have tried AP and I was considering it for my son realising that different things work for different people, but now I am wondering about it as their is so much conflict behind the AP posts. You are coming across as so rude, you don't have to do that Pip, you are a good advocate for AP, and you speak a lot of truth, why bring yourself down, go back to the nice Pip, and portray it to the people you are trying to reach, ignore any digs and be the bigger person,  I would like to challenge you to do that.  As for Cordy's mental state, I think it is cruel to attack someones mental health when so many people on this board probably hang on every word written by the long standing members, Cordy has been through hell and has been extremely supportive, it is not fair to suggest this type of side effect as like myself and many others we have all suffered and still are suffering depression, this is a support forum   and this type of attack can damage a persons thinking if they are already vulnerable with depression, I don't for one minute think this would happen to Cordy, but I can't understand the hurtful things said to people who are so ill, I know I can take things too seriously, which in turn makes me stress and then flare, so please Pip, be the bigger person which I know you can be, set an example as you may be pleasantly surprised at how many will follow, Best of luck, Janie.  [QUOTE=Bird Girrl]Excellent Cordelia, the best part is neither Pip nor Maz have RA, so what the heck are they doing here besides trying to get people into their cult.[/QUOTE] [QUOTE=mabus]

preserved for the record...watch out Lynn...i would be shakin in my boots..ohhhhhh

and JSNM have you not noticed that 'YOU APERS" have the most vile and personally nasty insults spewing than anyone else on this board, take the blinders off honey
if you guys could tone down your hatred, these post would not be here
how can you blindly follow your leader without seeing this, are you that gullible?????
[/QUOTE] [QUOTE=Cordelia] I am not going to answer any of that angry ranting crap you just posted. The truth remains the truth and people who count see things how they truly are.

I only have one point I want to acknowledge.

Do I want my RD studying me????

ABSOLUTELY!!!

And not only do I want him to, I'll help him do so if I can.

YOU BET.

WHY?

If they don't study me how can they help others in better ways in the future.

If studying me will help others down the line. STUDY ME, I SAY!!!

DAH!

You have some weird doctor problem, Pip. I simply don't buy that every single RD except the ones you approve of is selling us all out to big Pharm.

I recommend you find a Big Pharm and go chain yourself to it. Maybe that will make you feel better.

I'm done.
[/QUOTE] [QUOTE=janiefx]Hey Pip, I am on Rituxan and I am highly offended by what you said, I have tried AP and I was considering it for my son realising that different things work for different people, but now I am wondering about it as their is so much conflict behind the AP posts. You are coming across as so rude, you don't have to do that Pip, you are a good advocate for AP, and you speak a lot of truth, why bring yourself down, go back to the nice Pip, and portray it to the people you are trying to reach, ignore any digs and be the bigger person,  I would like to challenge you to do that.  As for Cordy's mental state, I think it is cruel to attack someones mental health when so many people on this board probably hang on every word written by the long standing members, Cordy has been through hell and has been extremely supportive, it is not fair to suggest this type of side effect as like myself and many others we have all suffered and still are suffering depression, this is a support forum   and this type of attack can damage a persons thinking if they are already vulnerable with depression, I don't for one minute think this would happen to Cordy, but I can't understand the hurtful things said to people who are so ill, I know I can take things too seriously, which in turn makes me stress and then flare, so please Pip, be the bigger person which I know you can be, set an example as you may be pleasantly surprised at how many will follow, Best of luck, Janie.  [/QUOTE] [QUOTE=Maz-aust]

See Jasmine & Babs - we can play !!! 

I am not challenging anyone you morons - you are !! 

But guess what people, if I get you to bite back I win.
 
AND I WON !!!  
 
 
 
 
[/QUOTE] [QUOTE=Maz-aust]Just want to clarify something --
 
ALL THE SPECIALISTS AT THE HOSPITAL (ALL 5 OF THEM) AGREED, AS DID THE HOSPITAL PHARMACOLOGISTS, THAT THE ABX I AM TAKING, IN THE QUANTITIES I TAKE, WOULD NEVER CAUSE A PANCREATIC ATTACK !!
 
THE ABX WAS RULED OUT ALMOST IMMEDIATELY!!
 
So why are some of you still honing in on it ??? I have no idea.  Surely 5 specialists in the field would have a fair indication of what may or may not cause the pancreas to react.  Then again, they don't know about all the experts on this site who obviously know better than them.
 
Some of you are 'listen to your doctor, your doctor knows best' people, and wouldn't think of challenging a doctor, which of course is your right to think like that, but why are you challenging my doctors expertise in my case ??  That seems to me to be be a bit of a paradox.  
 
 
 
 
 
[/QUOTE] [QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Pip!]Dalmatinka -
 
Nobody is putting down the road you decide to take.  You are the one that is lashing out now and that's uncalled for as you made your decision. 
 
I am very excited you are still into researching because I seriously doubt most mainstream docs will go along with either homeopathy or bioenergy.  Vitamins and herbs require knowledge in their implementation or one could seriously set themselves back. 
 
Knowledge is power.
 
Pip
[/QUOTE]
 
Actually you are lashing out at me and again putting down the road I choose to take by saying that mainstream doctors will not approve it. Most RDs dont approve of AP if I am not mistaken.  Also I am not stupid I know that combining certain herbal preparations could be dangerous so I am seeing a herbalist.  I also am reading up on vitamins and consulting with my doctor about how to use them.  Not all doctors are crooks some actually want to see you well no matter how you do it.   Also I never lashed out, I actually said I was happy that AP was working for those of you that used it but that I had never felt worse in my life when I was on it.
 
There is always an underlying tone of criticism in your posts for anything that is not AP and I for one am tired of it.  I just chose to speak up, I am sure many others share my opinion.
 
Regards,
 
Maria
[/QUOTE]
 
Anybody taking bets on how long Babs will ignore her new pledge?  Last nights lasted, what, 2 minutes?  The weeks before lasts...a day?
 
Dalmatinka -
 
You have a mainstream doc willing to do homeopathy and bioenergy?  This doc is willing to work with an herbalist?  And you're in America?  You're not in America, are you?  You're in a country with socialized medicine, aren't you?  You know as well as we do that mainstream medical doctors in the US are going to pat you on the hand and say 'come back and see me when you want the 'real' meds'. 
 
Nobody is saying anything about your choices.  You left and were not heard from again for months.  Then you come back and post something along the lines of 'listen to your doctors' and another thing that went basically 'you spend too much time researching'.  And you don't consider that lashing out?
 
I think you are the best example of the 'fear of my own decisions' I've ever seen.   You started AP, herxed immediately, quit (knowing it was a herx) and have chosen the 'feel better now' over the 'feel better later' model.  That was your choice.  Period.  Nobody harassed you into keeping going.  You were out and I respected that.  But somehow, you're upset at me for that?  Somehow you're skipping the part about 'it was your decision' and have turned it around to an 'underlying tone of criticism in your posts for anything that is not AP'. 
 
Yet you still don't entirely believe in mainstream American med - you didn't get Remicade because they couldn't find a vein?  You couldn't go back?  Now it's bioenergy and herbs?
 
Good luck in your chosen path.
 
Pip
[/QUOTE]
 
Now you are criticizing me because I live in Croatia????  Honey most doctors here put American doctors to shame!!!  And what I had from your so called AP therapy was not a herx, I have never felt so bad in my life and my GP took me off of the antibiotics saying it was an allergic reaction and I was fine within 1 day!  And another thing I went several times for Remicade and they couldnt get a vein and I didnt get it through insurance I was paying for it out of my own pocket!  And I am willing to pay for it here if I can get it and I am sure they will find a vein here.  That is if I decide to try it.  My body, my choice.  You chose AP.  A few years down the road when you are screaming in pain and cant walk come back and criticize me for my choices.  I will be in remission and enjoying life. 
[/QUOTE]
 
 

Hi Maz!

Unfortunately Jas is right - I just assumed it was the antibiotics - I didn't realize they'd been ruled out.  I thought abx with a myco basis (per the search) was more logical than the Volteran.  And I believe it was Jas who said the Volteran wasn't such a high dose.
 
You know something, I've been having such fun here the last couple of days, I don't think I'm gonna move on.  I'll stay here AND go back to AF.  Wanna keep having fun with these guys?  I mean, it's soooo easy.  LOL
 
Dalmatinka -
 
You are mistaken and apparently whatever med you are on is causing some sort of weird reaction to your reasoning capabilities.  I was AMAZED you had these kind of options that we don't get here.  The fact that you are avoiding socialized medicine instead of availing yourself of it, well, that's your option. 
 
However - I have one question tho.  How long are you giving yourself to get to remission on the path you chose? 
 
You said -
 
A few years down the road when you are screaming in pain and cant walk come back and criticize me for my choices.  I will be in remission and enjoying life. 
 
I'm willing to put my therapy on the line against your therapy.  I think I'm gonna get at least 7 years on AP before I have to get on the ladder.   Let's agree to meet back here in 8/13.  That will be my 7 year aniversary.  Can you last until then?
 
I understand your anger and what life dealt you.  If you don't make it that far, I'll still be here for you and will help you.
 
Pip
PS - if you are still researching, what you sent me in PM about your herx is NOT an allergic reaction.  Pity your doc didn't know that.  Hope you don't blame him later.
[/QUOTE]That sure is going to be a couple of LONG ASS books WinkLOL
 
Even the Bible is portable with one hand and not 2 hands TongueWinkLOL

One more time, please stop posting on this thread if you are not taking, have taken, or contemplating starting Antibiotic Therapy.  Go start your own thread about your medication and post there.  Thank you.

Trying to get back on topic here - my fantastic new endo's blood work keeps arriving in the mail, and since the switch to Armour Thyroid, my thyroid labs have stabilized for the first time in a couple of years.  I have had some physical symptoms clear up suddenly at the same time, so I am starting to think Synthroid for 20-odd years wasn't working for me anymore.  My Vit D panels were perfect again, along with alot of other tests he ran, so only have two more to receive.  He is the first of my 5 endos I have had who hasn't just tested my thyroid, he is testing my whole endocrine system.  And this Evista for osteoporosis and hormonal therapy has been unbelievable in bringing down my muscle pain.  I cannot wait to see him in two weeks to discuss all of this, he is just outstanding as a medical doctor. 
 
And still on my Minocin - every day I feel a little bit better, a little bit stronger.  For me, AP was the right choice and I am glad I have this thread dedicated to my fellow APers for us to have a place to post and discuss Antibiotic Protocol.   
 
PS  Thanks for all the PMs, your support was greatly appreciated.  Wink
[QUOTE=joonie]That sure is going to be a couple of LONG ASS books WinkLOL
 
Even the Bible is portable with one hand and not 2 hands TongueWinkLOL
[/QUOTE]
 
I'm always happy to be quoted...Though I have doubts whether or not it will be in context LOL

.

justsaynoemore2009-06-17 16:48:28justsaynoemore2009-06-17 16:49:00 [QUOTE=justsaynoemore]

One more time, please stop posting on this thread if you are not taking, have taken, or contemplating starting Antibiotic Therapy.  Go start your own thread about your medication and post there.  Thank you.

[/QUOTE]

I will not stop posting.

.

justsaynoemore2009-06-17 16:49:28 [QUOTE=justsaynoemore][QUOTE=JasmineRain] [QUOTE=justsaynoemore]

One more time, please stop posting on this thread if you are not taking, have taken, or contemplating starting Antibiotic Therapy.  Go start your own thread about your medication and post there.  Thank you.

[/QUOTE]

I will not stop posting.
[/QUOTE] [/QUOTE]I finally read this whole thread, its taken some doing . Its rather a shame that you all hate each other so much as you all have so much in common!!!!!! A passion about your medication. I came here for some information for my husband and myself as the wife of a RA sufferer, so far all I have gained is belly ache from laughing at the comedy on here. Its like being in an Irish house full of women with hormone problemsLOLLOL[QUOTE=Sandra]I finally read this whole thread, its taken some doing . Its rather a shame that you all hate each other so much as you all have so much in common!!!!!! A passion about your medication. I came here for some information for my husband and myself as the wife of a RA sufferer, so far all I have gained is belly ache from laughing at the comedy on here. Its like being in an Irish house full of women with hormone problemsLOLLOL[/QUOTE] [QUOTE=Sandra] Its like being in an Irish house full of women with hormone problemsLOLLOL[/QUOTE]
 
 
Now... That ^^^^^^ WAS FUNNY!!LOLLOLLOLLOLLOLLOL
joonie2009-04-03 04:42:46[QUOTE=Sandra]I finally read this whole thread, its taken some doing . Its rather a shame that you all hate each other so much as you all have so much in common!!!!!! A passion about your medication. I came here for some information for my husband and myself as the wife of a RA sufferer, so far all I have gained is belly ache from laughing at the comedy on here. Its like being in an Irish house full of women with hormone problemsLOLLOL[/QUOTE]
 
Sandra, it is hilarious.  Well, except that for us on AP, this thread is important to us and to have non-APers try to ruin it, well, I am coming to the same conclusion of Pip's that the traditional RA drugs these naysayers use are causing brain damage. 
 
Good luck with your research and I wish you the very best.
 
Cathy
PS  Isn't it remarkable that this thread has the most hits on the entire forum?  AP gets all the attention, for good reason, it works!
Actually I come here for the comedy. I do not visit the thread much, uless I see some cross over posts on other threads, and then I come here to see what all the fuss is about. I do not read, but the last couple of pages and then I figure it out and move on.
 
I am not sure why I post on here. I mostly post what I thought after reading a couple of pages... which is usually a bunch of nothing that I thought about. Wink
[QUOTE=JasmineRain]Actually I come here for the comedy. [/QUOTE]
 
I poke my head in for a giggle too!!
 
JSNM if you want to discuss AP without having to deal with any questions then just head on over to the Roadback site..otherwise this is an open board you will just have to deal with people who you don't like posting on your special thread.   In the meantime you will simply have to deal with people asking questions, pointing out your inconsistancies and calling out the exaggerations. 
Do us all a favor, Pip and Mazz also, stop acting like a freakin' victims.  You 3 are so predictable in your responses that it is not even funny anymore.  If anyone asks a question you guys react like Pavlov's bell just rang.    Stop worrying about what anyone else posts and take responsibility for your own actions and words. 
Yes Buckeye,  I agree, this is an RA board and no-one tells anyone else where or where they cannot post, if anyone is out of place here it is the AP people who have their own board, I wonder if we went on their website and started an RA thread for traditional therapies and told them not to post there, would they leave?  Somehow me thinks not!!!!!!! JSNM, I have come to the conclusion that you apers have THIRD STAGE CANDIDA which causes mental confusion, mood swings, CRS, ...alot of mental issues associated with these yeasties..seriously get some help before you wig out in the teepeeLOLWinkMabus -
 
So last night I searched for what drug you do use and was surprised to find absolutely no mention of it on AI.  Another interesting find was that while you say you've been here since 2004, you only started posting just before the election.  And the most interesting part of the entire thing - recently you've gone back and edited your most 'interesting' posts. 
 
There is only one person I know of who has a history of doing THAT.
 
Cathy - glad to hear you are so happy with your endo.  Finding a doc willing to work with us is key.
 
Pip

 pip, you are funny person who is totally transparent in your nasty smackdowns...first you want to think i am on rituxin so you can insult my drug choices...then it backfires and you just manage to piss off everyone using that drug.

i could give a FLYING FLIP WHO YOU THINK I AM

instead of spending many useless hours trying to figure everyone out for your snarky attacks go outside and enjoy life, your family..if you can manage to crane yourself off the computerLOLLOLLOLLOLLOL

The Third Stage of Candida Symptoms may involve MENTAL and BEHAVIORAL RESPONSES: Inability to concentrate, not being able to read or follow a television program or carry on a hobby, serious forgetfulness, memory loss, mental confusion, not being able to think of the words to say something, switching around of words and letters when trying to speak and/or write something, loss of previous skills (such as how-to-type or how-to-play-the-piano, etc.) These frightening problems may often lead to "HOPELESS CRYING" SPELLS, SEVERE DEPRESSION, SLEEP DISORDERS (may include insomnia, confusion dreams, nightmares, apnea, and not feeling rested or restored after sleep), IRRATIONAL THOUGHTS, UNUSUAL FEARS, PHOBIAS, PANIC/ANXIETY ATTACKS, MUSCLE TWITCHING, IRRITABILITY, VIOLENCE, AGGRESSIVE BEHAVIOR, and even EPILEPTIC SEIZURES and THOUGHTS OF DEATH OR SUICIDE. Living with these Candida Symptoms is not a great way to live life. Sometimes people with these symptoms are labeled "Mentally ill", thought to be suffering from manic-depressive Psychosis or Schizophrenia. These desperately sick patients are sometimes turned over to the care of a psychiatrist or hospitalized in a mental institution. They may be given antidepressants, tranquilizers, lithium, etc. to lighten the mental symptoms. . But the CAUSE may be overlooked and the patient is not CURED on a long-term basis.

I reread The New Arthritis Breakthrough.  Interesting testimony by the Honorable Thomas Reed who served as secretary of the Air Force during the Ford Administration.  He had RA, was treated by Dr. Brown with AP and at the time of the book, had been in remission 3 years.  Interesting story.  Love President Ford and wife Betty.I've read the book too, and to be quite honest, I was not all that impressed.  That's not to say that I think minocycline is not a valid treatment for some RA cases.  I just have not seen any convincing evidence that AP (or anything else, including my beloved omega-3's) are the holy grail for RA. I'm sure we all have our opinions.  Whatever works or doesn't work for you.

be sure to copy this.....  ok   or my feelings may be hurt LOL

I popped in here while my little guy is showering up to shop.. to post the information from my canadian friend about the waits for medical treatment....then I saw this thread!!
and cannot believe the pages of copied posts  .....THAT had me hysterically laughing!!
 
My friends.. I applaud you for your attempts to rectify a situation that has gone on way too long.. and is more offensive than I thought any one can be and that is, Pip..  completely oujt of control and irrational in her responses to all of you but that was not surprising.... 
what was surprising is that she can't even own her part in the altercations here on this board...  wow.  just wow.
 
I'm w/ the group that says..... you want something JUST AP? ---- go somewhere else... because none of you have earned any right nor respect to have that here......
[QUOTE=Jan Lucinda] Whatever works or doesn't work for you.[/QUOTE]

Too bad more people don't share that opinion.

Thanks Pip, finding the right doctors is the key and my small team is growing.  The new rheumy seems like he will work out too, so all my searching is finally paying off  A great gatekeeper, rheumy, endo, dermatologist, and eye doctor, plus my chiro and dentist, a great team, all working together for me and my welfare.  And every day I just keep getting better and better due to Antibiotic Protocol and their great support.  [QUOTE=Jan Lucinda]I reread The New Arthritis Breakthrough.  Interesting testimony by the Honorable Thomas Reed who served as secretary of the Air Force during the Ford Administration.  He had RA, was treated by Dr. Brown with AP and at the time of the book, had been in remission 3 years.  Interesting story.  Love President Ford and wife Betty.[/QUOTE]
 
Jan, thanks for all your great posts on this thread about the tremendous successes of RA victims on Antibiotic Protocol.  Reading a post like this only confirms and hardens my resolve that Antibiotic Protocol is the right drug for me.  President Ford and Mrs. Ford are great role models of good citizens who respect others. 
 
And this thread is such a lifeline for me as an APer.  Thank you Pip for starting it so us APers would have a place to discuss our treatment and progress. 
I would consider AP if Humira doesn't work for me but everyone who is on it seems like they have been brainwashed.  Seriously.  It may work but this thread has never helped convince me of that.  I think the fact that it is 125 pages long would make a newbie say "never mind..."  Lord knows I haven't read all of it.And I do feel badly for saying that...because I would like to consider it...but the way it is presented scares me off.Glad it is pretty obvious how it is like a cult. It has to be to get people to try it. All the research indicates it is a MILD DMARD. Since few doctors encourage its use, they have to market it--like they do here. Tactics that they have used? Anti Big Pharm marketing (except they do it themselves and don't have to follow rules). Scare tactics about the medications that Rhuematologists use. They imply cure and when it doesn't work, tend to blame the victim by implying they didn't follow the archane rules.

Also that roadback site, won't post the doctors names. Why, because they don't want people to know how few doctors use AP. Check it out, I bet it isn't more than 10 doctors and many of them are specialists.[QUOTE=Pip!]I'm sorry that I'm late to the party - we had softball practice today.
 
First up - Cordelia -
 
First I must apologize for not responding to your hate filled ranting PM.  I should have but it was so out of character that I decided that you must have just gone over the edge.  Then you posted a 'trying to maintain my previous level of support' thread and I was sure that was the case.  I had assumed that our friendship was over but we would manage to peacefully co-exist.
 
I think you need to understand my thought processes.  Babs had taken to following me around the board making belittling comments like she had done to another poster on AI.  Unlike most people, I can only take this kind of garbage for so long and realized Babs would need a 'taste of her own medicine' if she was ever going to stop that annoying behavior.  So, yes, I did follow her for two days.  Would you like to know why I stopped? 
 
Because I realized that Babs was incapable of realizing she 'started it'.  She just can't see it.  And she was way too ill equiped to defend herself from the very behavior she was instigating.  It was too much like 'shooting fish in a barrel' and I didn't like that feeling.  And then it hit me...really hit me...I felt sorry for Babs.  For some person who defines herself by how sick she is.  For some poor schmo who needs a world view that reinforces her life choices and who is incapable of 'seeing outside the box'. 
 
So I backed off and attempted to 'work' with her - meaning, don't antagonize and let her have her world view.  Sadly, she needs it to function.   She was so much fun and so into learning.  The cool, fun loving, inquisitive Babs is gone and in it's place...
 
To me, it's like saying goodbye to somebody I used to treasure. 
 
JSNM was understandably upset because of what she perceives as your 'lie'.  She doesn't understand that for your world view to work, I have to have never supported people on the traditional meds; never posted anything that wasn't an AP plug. 
 
To her, it is a lie.  To me, it is a lie.  To you, it's how you have to view your world in order for that world to work.
 
Because you don't know who I PM.  If I see a person in pain, I either post, or if it's bad enough, PM them.  I am not responsible for posts I don't see.  Some people actually tell me when I miss something important so I can get to the person that needs help.  And sometimes I don't even mention AP.  As you would remember if you looked thru our old emails and PM's like I did when you went nuts in that PM earlier this week. 
 
I am not a cynic, I am the polar opposite; I'm a romantic.  We have a world view that says people will do the right thing, at the right time, for the right reasons.  My diagnosis was a rude awakening that profit is defining our 'cure' and the evidence of 'therapies' to 'create a revenue stream' has grown.  But, unlike most people on AI, I can face what is apparently the true state of our 'cure'.  And once we face that truth, we can do the right thing, and work towards correcting the inequities that keep the sick people dependent, complacent, accepting of the status quo. 
 
So, explain to me how being a paid consultant of a Pharma company gets the patient the best drug possible?  He gets paid to get you into a study.  He gets sent on world travel for his continuing ed?  His perks are contingent on you doing well on his studies.  Very few docs stand up and stop the gravy train even when they notice something is going wrong.  Thankfully, in Australia, there is no-preemption.  We will eventually get the info of what's going on in your studies even tho we will never know in America.  Not until enough people are dead from the drug.
 
As a former friend, I would feel better if you had a doc that was that 'caring' who wasn't getting paid extra for 'studying' you.  But I can now see why your world view needs so much to hang on to that delusion.
 
Yes, I have made digs at Rituxan.  Mostly at Lev and his stupidity.  Yes, I think Lev is a moron.  And a bigoted one at that.  I will not apologize for that. 
 
However, todays post, as I corrected to Mabus, was a serious question.  Your ranting posts and PM's made me realize something, something that I considered huge and I was trying to find out if what I suspected was true, and if it was, then adjust my 'game plan' accordingly.
 
See, I have posted here, on the IPRS and on AF that if AP failed, I would consider Rituxan.  It even sounded like it was something that, combined with AP, might possibly bring about the 'cure' because of which cells it takes out.
 
But after your ranting, rambling PM's and posts, I had to re-evalutate. 
 
Because I've seen studies in Pubmed about Rituxan and brain cancer; brain lesions; brain damage.  I have never posted them because I don't keep a lot of the biologic research; most just say it works well; use with MTX, no matter what the biologic. 
 
So then I started thinking, what if Lev really can't remember?  What if what's going on with Cordy is that her memory is being effected (note my 'look at old emails' comment above).  That made me worried because my Plan B was now off the table.  I can see the trolls repeating the same garbage the 'real' people say, but I can't see CORDY doing that.  Unless her brain has been effected. 
 
So, then I started looking at the Rituxan people and they all seemed to be doing the same thing?  What the heck is it in that med that makes people lose their freakin' memory?
 
Look at how it's the Rituxan people foaming at the mouth, twisting words and meaning, heck, being unable to even fathom what was 'meant' from what was 'posted' - and this from people who were able to prior to starting that med. 
 
Frankly, and with all due respect, your posts and PM's were a wake up call, and for that, I am greatful, but no way in hell am I taking that med.  Because there is fog; and then there is whatever this is going on with you people. 
 
You say you simply can't see it?  I'm saying you are unable to see it.  Either psychologically, or even more scary, physiologically. 
 
There is something else you should know.  I had been joking when I said 'buy the book' but your response was the impetus to actually talk to people about writing one.  I went back and got your threads, some even had my responses on the same page, and most never mentioned AP.  Copies of you saying to Lev on one of his 'rabid dog' rants to not attack people who don't have RA; pain is pain.  Juxtaposed against the 'you don't have RA' you just posted, well, it looks kind of like you're losing your "Virgin Mary Mother of all Martyrs" halo. 
 
I see it; we all see it.  Cordy, you're a fraud. 
 
The idea terrifies you.  You don't have, and never will, the strength to do AP.  You can't leave your Mother-Martyr world view. 
 
So, in closing, I'd like to say that I had valued your friendship and will miss you as a friend. 
 
Pip
PS - I'll get to the other responses in the morning.  It's almost 11 right now and Fridays are my busy day. 
 
 
 
[/QUOTE]
 
OMG You are unbelievable attacking a woman who has been nothing but sweet to everyone on this board.  You are a terrible person and personally I think AP is affecting your brain.  Everyone who is not on AP is mad according to you.  You are the one that is insane!  Why dont you get off this board you do not have RA!  Create your own bloody forum!  Then you can doctor everyone.  My RD has put me back on methotrexate, are you going to say I am crazy now too, that my meds are affecting my brain???  And personally he says that AP will only work for people who are early on in the disease or people that have PRA which is what you have, right?
 
Cordy thanks for having the eloquence and class to say what needed to be said.  It is a shame that Pip cannot see any side except her own.
[QUOTE=KatieG]And I do feel badly for saying that...because I would like to consider it...but the way it is presented scares me off.[/QUOTE]
 
sincerely..... KatieG
 
I pray you don't.
 
From what I've read you have quite alot of issues with your RA.. and wasting time.. YES. wasting time w/ that would only cause you more pain and suffering and time lost w/ your beautiful children.... 
.
justsaynoemore2009-06-17 16:50:57Very interesting Cathy.
 
And disturbing on so many levels.  It also raises some interesting questions - Unfortunately, my responses involve inappropriate comments about mice left in buckets of water.
 
Pip
I love this new endo with his stamp of SEND COPY TO PATIENT on his lab orders.  Just received another set of test results.  I figured he is doing a baseline evaluation for the Evista for hormonal levels. 
 
So far so good, perfect labs once again.  I have no evidence of RA activity and my endocrine system is looking good.  I am so glad I switched off of Synthroid to the Armour Thyroid. 
"Bad Mix of Bacterial Remnants and Genetics Leads To Arthritis"

http://www.medicalnewstoday.com/articles/144582.php

From the article:
"A research study appearing in the April 2009 issue of the Journal of Leukocyte Biology sheds light on one cause of arthritis: bacteria." Suzanne2009-04-04 08:57:35Jas-
 
You said you had read The New Arthritis Breakthrough.  Did you buy it or get it from the library?  If library, which one.  I'm interested in which ones have it.
[QUOTE=Jan Lucinda]Jas-
 
You said you had read The New Arthritis Breakthrough.  Did you buy it or get it from the library?  If library, which one.  I'm interested in which ones have it.
[/QUOTE]

I purchased a used copy from amazon.com.  Our local library has the book as well.
[QUOTE=justsaynoemore]http://www.medicalnewstoday.com/articles/144626.php
Team Identifies A Molecular Switch Linking Infectious Disease And Depression
Main Category: Immune System / Vaccines
Also Included In: Depression;  Neurology / Neuroscience
Article Date: 03 Apr 2009 - 3:00 PDT

Researchers at the University of Illinois report that IDO, an enzyme found throughout the body and long suspected of playing a role in depression, is in fact essential to the onset of depressive symptoms sparked by chronic inflammation.

Their study, just published online in the Journal of Immunology, is the first to identify IDO (indoleamine 2,3 dioxygenase) as a molecular switch that induces depressive symptoms in some cases of chronic inflammation.

Doctors have known for decades that patients with chronic inflammation, such as that linked to coronary heart disease or rheumatoid arthritis, are more likely than others to become depressed. Some pro-inflammatory drugs, such as interferon-alpha, which is used to treat Hepatitis C and a cancer known as malignant melanoma, also induce symptoms of depression in a significant number of patients.

In the new study, mice were exposed to Bacille Calmette-Guérin (BCG), a vaccine used in many parts of the world to prevent tuberculosis. BCG produces low-grade, chronic inflammation in mice, which can be detected by measuring levels of certain immune system proteins, called inflammatory cytokines, in the blood and brain.

Mice exposed to BCG display the normal symptoms of illness (lack of appetite, reduced activity), but after these symptoms fade the mice continue to exhibit depressive-like behaviors that can be reversed with antidepressants, said animal sciences and pathology professors Keith Kelley and Robert Dantzer, who led the study.

Even after they recover from their sickness, the BCG-infected mice are much more passive than non-infected mice when in an inescapable situation. When placed in a bucket of water for a few minutes, for example, they struggle less to escape and spend more time floating passively, the researchers report.

"The mice that we're calling depressed give up more quickly. While physically able, the mice quit trying to escape," said animal sciences professor Jason O'Connor, first author on the study.

"But if you give them anti-depressants, the depressive-like behavior goes away," Kelley said. "So the next question is, how can this be?" Dantzer said. "What is the biological molecular switch which makes them go from sickness to depression?"

The researchers knew that infection causes immune cells to produce cytokines, signaling proteins that help the body fight infection. These proteins also activate IDO in the body and brain. IDO degrades the amino acid tryptophan, producing metabolites that affect animal and human behavior. Previous studies have found a strong correlation between an increase in these metabolites and the depressive symptoms seen in some patients.

An analysis of gene regulation in the mouse brains showed that exposure to BCG increased expression of IDO and two cytokines known to induce IDO: tumor necrosis factor-alpha and interferon-gamma.

Because IDO degrades tryptophan, which is the precursor of serotonin, a brain chemical known to positively influence mood, scientists have hypothesized that the depression seen in patients with inflammatory disease was due to a decrease in serotonin in the brain. But a check of serotonin in the brains of mice with depressive-like behavior showed otherwise, Dantzer said.

"The brain is able to compensate for the decrease in tryptophan," he said.

To test whether IDO was essential to the depressive-like behaviors seen in mice, the researchers gave mice a drug that inhibits IDO and ran the experiment again. Just as before, the mice exposed to BCG exhibited typical sickness behavior (low appetite, reduced activity), from which they soon recovered. But pretreatment with the IDO inhibitor eliminated the subsequent development of depressive-like behavior. Mice that had the IDO gene deleted were also completely resistant to the depressive-like behavior seen in normal mice exposed to BCG.

"This is the first study to directly implicate IDO in depression related to chronic inflammation," Kelley said.

The researchers suspect that the metabolites produced when IDO degrades tryptophan are in some way promoting depression. More research will establish if that is true, they said.

In the meantime, the study highlights IDO as a potential target for development of new antidepressant drugs.

The study also demonstrates the robust link between the immune system and the nervous system, a connection often ignored by immunologists and neurologists, Kelley said.

To reduce this barrier between the two fields of study, Kelley and Dantzer launched the Integrative Immunology and Behavior program at Illinois. It supports interdisciplinary research on how inflammatory processes in the immune system and brain influence behavior and mental health.

"For years, no one considered that an infection somewhere in the body could affect the brain," Kelley said. "But as (University of Texas immunologist) Ed Blalock said in 1984, the immune system is a sensory organ. The immune system is exquisitely adapted as a sensory system to 'see' infectious agents. And it communicates that information to the brain."

Notes:

The NIH National Institute on Aging and the National Institute of Mental Health provided funding for this research.

Source:
Diana Yates
University of Illinois at Urbana-Champaign
[/QUOTE]
 
So what are you saying with this Cathy?  That those of us not on AP are depressed, infectious and not willing to fight?  Is this going back to Pips statement that I went off AP too easily?  I went off AP because I was covered in a red hive-like rash from head to toe, I looked like I had been burned!  I had an allergic reaction!
 
And as far as being depressed, far from it!  I work from 530 in the morning to 10pm most days, many days I am in pain and fight through it when most would give up and crawl in bed. 
 
I have had enough of you AP people, the antibiotics are obviously affecting your brains and anyone not on AP is not good enough for you so count me out, I wont be commenting on your senseless brainless thread anymore. 
 
Best regards!
 
Dalmatinka
[quote]
Mice exposed to BCG display the normal symptoms of illness (lack of appetite, reduced activity), but after these symptoms fade the mice continue to exhibit depressive-like behaviors that can be reversed with antidepressants, said animal sciences and pathology professors Keith Kelley and Robert Dantzer, who led the study.

Even after they recover from their sickness, the BCG-infected mice are much more passive than non-infected mice when in an inescapable situation. When placed in a bucket of water for a few minutes, for example, they struggle less to escape and spend more time floating passively, the researchers report.
[/quote]

Which seems to indicate the depressive syndrome it is NOT an ongoing chronic infection; rather, a long-term change induced by an acute infection.

I think it is impractical and unwise to attempt to avoid all microscopic "buggers" or whatever technical term is being applied to them these days.  Our immune systems have evolved WITH them in a symbiotic relationship for millions of years.  The vast majority of microbes we encounter either pose no threat, or are actually incorporated into our internal ecosystem as a vital resource.  Killing them off leads to illness.  You can't just replace them (as in digestive 'probiotics') and expect everything to work as before.  The 'replacements' are merely temporary workers.  They don't stick around and colonize (as evidenced by the 'need' to constantly replenish them).

Just my two cents.  Feel free to jump in, call me an uneducated idiot and rip me to shreds.  I'm going shopping.
[QUOTE=JasmineRain][quote]
 Feel free to jump in, call me an uneducated idiot and rip me to shreds.  I'm going shopping.
[/QUOTE]
 
I'm going with you......................
Wow, I just cannot believe how great I feel taking Minocin rather than the MTX/Predisone/Plaquinel cocktail I was on.
 
We are moving, so I have been packing for two weeks - weekends, after work each day.  Then today was our neighborhood's semi-annual garage sale, so I was up late last night getting ready and up at 5am today to get started.  It was a huge success and I ran around like crazy with DH - the usual garage sale mania, and we sold alot of "clutter" LOL.
 
I am so proud that I am back up to normal spead and leading the life I used to have, as this has been brutal and I was worried I would have problems, but nope, doing great, no pain, no flares, nothing.
 
Three years ago I was bedridden.  Minocin and Antibiotic Protocol has rescued and saved my life.  I will never be able to express how impressed I am this treatment for my rheumatoid arthritis.  Take care ~~ Cathy
[QUOTE=justsaynoemore]Wow, I just cannot believe how great I feel taking Minocin rather than the MTX/Predisone/Plaquinel cocktail I was on.
 
We are moving, so I have been packing for two weeks - weekends, after work each day.  Then today was our neighborhood's semi-annual garage sale, so I was up late last night getting ready and up at 5am today to get started.  It was a huge success and I ran around like crazy with DH - the usual garage sale mania, and we sold alot of "clutter" LOL.
 
I am so proud that I am back up to normal spead and leading the life I used to have, as this has been brutal and I was worried I would have problems, but nope, doing great, no pain, no flares, nothing.
 
Three years ago I was bedridden.  Minocin and Antibiotic Protocol has rescued and saved my life.  I will never be able to express how impressed I am this treatment for my rheumatoid arthritis.  Take care ~~ Cathy
[/QUOTE]
 
Good for you! Smile
I am so glad you are doing well Cathy and try to take it easy in the packing dept.  Did you know your mailbox is full?  Has been all week.[QUOTE=justsaynoemore]Wow, I just cannot believe how great I feel taking Minocin rather than the MTX/Predisone/Plaquinel cocktail I was on.
 
We are moving, so I have been packing for two weeks - weekends, after work each day.  Then today was our neighborhood's semi-annual garage sale, so I was up late last night getting ready and up at 5am today to get started.  It was a huge success and I ran around like crazy with DH - the usual garage sale mania, and we sold alot of "clutter" LOL.
 
I am so proud that I am back up to normal spead and leading the life I used to have, as this has been brutal and I was worried I would have problems, but nope, doing great, no pain, no flares, nothing.
 
Three years ago I was bedridden.  Minocin and Antibiotic Protocol has rescued and saved my life.  I will never be able to express how impressed I am this treatment for my rheumatoid arthritis.  Take care ~~ Cathy
 
I am so glad you are doing so well Cathy but try not to overdo things with the move.  Did you know your pm box is full?
Like Snow, I love reading about one's success with their meds.  Cathy, your life has changed dramatically in the last year or so.  Lindygood for you, Cathy.... and my only wish was that it had happened sooner for you.Jas,
 
I think there is a difference between the usual amount of biota in the human body and a body that has incorrect proportions between the good and the bad.  If the bad overrun the system, I think of it like a neighborhood gone to seed.  That fecal study on proportions of 'good vs bad' leading to autoimmune disease was interesting...showing IMHO that the neighborhood had gone to pot well before the symptoms came on. 
 
So, adding in probiotics takes time and precision especially since we're not sure of exactly what our biota was comprised of.  And like the proverbial 'gentrification' - it takes a while for it to become 'upscale' enough to afford cute little bistro's (enhanced immune function) on every corner. 
 
Its a war for territory.  It doesn't help that APers are constantly killing off the good and the bad with antibiotics. 
 
And, since probiotics decrease CRP - they have to be doing something we need.
 
Cathy - I'm so stoked you had a great day!  I know that feeling of running around til you think you should drop but don't because there is more to do.  Keep on going, girl!
 
Pip
Just a quick have a nice day to all.Cathy, I can't express just how happy I am for you!  That is such great news!  Here's me tipping my glass to you and hoping you continue on the path of feeling great! A used copy of The New Arthritis Breakthrough from amazon.com sounds good for curious people.Thanks, it is good to read about the success stories in here - no matter how its achieved - what drug, what lifestyle, whatever :) 
 
I am convinced mine is from the scarlet fever - funny how I probably had a mild JRA and then RA all my life and it wasn't caught until I was over 50, but I toughed out all the pain and problems and never realized what true health was.  That's the DES probably, it had to do SOMETHING LOL, kept the RA very mild. 
 
And its been just over a year since I started Minocin, and it has turned my whole life around.  And I couldn't have done it without the support, pms, emails and thumps on the head when I needed it from all the great posters I have met in here - I truly love each of you dearly. 
 
Teed - thanks - of COURSE our internet transfer on Friday didn't work, so all weekend we were down (still down) and I am sending this during lunch time from work, so I cleaned out my inbox.  Thanks. 
Hi everyone -
 
Cathy what great news - nice to hear that someone remembers how they used to feel and that they are now feeling so much better.   Clap
 
Maz
 
Easter in 3 days !! Yeh a 4 day weekend ....  Anyone want some chocolate .... 
 
Maz-aust2009-04-06 15:33:41Cathy
I'm glad you are seeing improvement after such a rough time getting diagnosed and treated
Cathy  its fab to hear your good news. Thumbs%20Upand a quick good day to you too, Jan!
Cathy.. even with my JRA DX as a child, doctors ignored any complaint I had about joints, swelling etc, and sent me on my merry way w/ an NSAID..... ALL my life.. being seronegative makes it quite a battle..Cripes, I would blame myself for being lazy when I felt tired.. whenb I didn't have the energy to keep up.... when I hurt, I'd ignore it and push on.....  what a fool.
 Not til I had the flare from hell in June 07 did anyone listen... that was an entire body flare....
OK - this question is for the Apers on this thread....
 
Its Apr now and my gyneo wants me to come off all abx 3 wks before the op (thinks all this could be a problem if anything happened and he had to put me on abx), and that's OK, but the problem is that my PR Dr wants me to come off it one week before the op .... Mr D & Dr D should talk to each other but they don't seem to want to make the first move and I am piggy in the middle .... help, what do you think .... has anyone had to have an op and been told to come off their abx, if so how long before ???
 

Maz - I had all my operations pre-ABX :)  I told my husband I was slipping away, one gland, one organ at a time :)  But, I do remember reading somewhere about having to go off the ABX pre-operation, and 2-3 weeks sounds familiar as the amount of lead time.  I could understand why, if you are having an operation, and contracted infection in the hospital, they would want you to be as clear of antibiotics as possible.  You are on an interesting "soup", so it sounds prudent.  What about afterwards?  Have you asked when would you be able to restart the ABX?  Good luck ~~ Cathy

PS  The new endo's office called today to confirm Wed's appt, and I am being punted to a PA, not the doctor, so I will assume the last test was normal also as I haven't received it.  If something was terribly wrong, I would be seeing him.  They made it very clear when I called to make the initial appt., and then you had to sign a paper when you got there that you would be punted off to a PA eventually.  So, it was a good move to try another new endo.  At least he did alot of testing, all normal.  But, he was all bent out of shape because I was on Armour Thyroid, and I could kick myself for not asking to be switched years ago.  Synthroid and I didn't agree.  He won't prescribe AT, but will work with my primary who will continue to do the prescribing.  Four months on it, perfect thyroid numbers, can't complain :) 

You're talking to somebody that refused to come off my Mino during pneumonia.  LOL
 
I don't think it's long enough to cause you to backslide if that's what you're asking, and they tend to do abx IV's while you're in the surgery...so maybe you'll come out 'ahead'. 
 
Hugs and fingers crossed!
 
Pip
Thanks to both of you,
 
Gyneo wants me off the abx 3 wks before and 2 after (all going well that is) ,,, and
yes the abx mix isn't the usual, but apparently combined does just as good a job of killing the buggers off as anything else -- the amoxil itself is only for my headaches -- diagnosis is still PRA with probably Lyme sitting in the background ..... trying to kill all at the same time............LOL
 
OK that being said I will have to come off it on about 22nd Apr - can't forget that date 'cause it's my birthday.
 
 Edited to fix spelling error..
Maz-aust2009-04-06 21:41:36

Hi everyone,

New here, just wanting to say hi.

 

Hi Marissa

Welsome to the board.  Maybe you should start a new thread to say hello as not everyone reads the AP thread.

Hope you have a great day.

Hi Marissa!
 
Welcome to AI and the AP thread.
 
Pip

Marissa-

I see you are on AP.  Welcome to the AP thread here.

Thanks everyone - glad to be here !!

 

something rings un-new [QUOTE=babs10]something rings un-new [/QUOTE]
 
What are you on about Babs ???
 
So I went back to my new endos office and saw the PA.  Perfect lab work again, except I am bumping up against the high for sugars, so that durn sugar binge caught up with me.  Have to cut out sugars, fruits, and carbs.  That's my diet.  Bummer.  My Vit D was 1 point below where they want it, even though it was normal, so have to take 2,000 units a day.  I will have to research what I am taking right now with a vitamin inventory.
 
But, she had the blood work from the new rheumy, that's where the sugar number came from, as he had run a complete metabolic panel, the endo only did a basic.  So she gave me a copy of my rheumy's blood pull and I don't see him for another two weeks.  LOL  That's a FIRST.  Everything was perfect again - my SED was 7 LOL.  It was a partial report as the anti-CCP and the special one he ran for saridois (sp) hadn't come in yet, so I didn't get everything, durn it.  But it was gratifying to see all those white blood numbers be normal, the thyroid, everything.  This just keeps getting better and better.  I don't go back for 6 months, the longest period of time between endo visits in years.  Cathy PS Welcome Marissa. 
WAY TO GO CATHY!!!! That is such great news....keep it up.  Between you and Joonie things are on the upswing and the next thing we'll know the two of you will be running a marathon.
 
Pat
Just thought I would let everyone know that Maz was the one who told me about this website and said that everyone was so supportive. 
 
Now that I am here I just want to say thanks Maz, I haven't looked back since you told me about the doctor you see.  Back then I was so sick and you said it would only cost me a phone call, some petrol and some of my time, you told me to listen and make up my own mind.  Since that consult I agreed to try AP and I am so lucky because I am having a lot of success with it.  Maybe in time I can tell someone else about this treatment and help them.
 
Marissa
great, Cathy!!
sarcoidosis?  is that the test?  why for that? 

.

justsaynoemore2009-06-17 16:53:23that's what I thought, Cath..........  I hope all is well... you know you'll be in my thoughts.Well, I took the copy of the new rheumy's blood work that he doesn't know I have :) and kept going over it, and knew something was missing.  So I compared it to the copy of the bill that I always ask for (to get the diagnostic coding to see what they are up to) and the front desk person missed putting the CRP he ordered on the checkout sheet onto the lab test paperwork.  I cannot wait to see how they try to get around this one.  But the SED is great, so its kinda moot to do both, but he did order it and opps.  The two times I went sero-positive I also had my only two high SEDs at the same time, so I am hopeful my anti-CCP is normal too. 
 
The only wild card is this sarcoidosis test, but I am putting my faith in my ex-hubby the chiro who picked up on the first 2 nodules back in the late 90s and said they were calcified lymph nodes, which makes sense if you follow the infectious theory to RA - mycoplasmas in my lungs being contained by my autoimmune system.  As my system weakened, it took more and more to contain the mycoplasmas, making the nodules bigger and bigger.  And most of my RA has been in my organs, not my joints.  The funny part of this is that I have been dxed with RA for almost 3 years, and the dermatologist for the MTX-induced toe fungus was the one who ordered up the special lung diagnostic test we are suppose to have and all my current doctors (including the ex-rheumy) knew I had nodules in my lungs.  I will never understand this system. 
 
And the new endo's PA/RN knew about DES, and she about fell out of her chair when I said I was an in-utero DES baby (its in the chart).  I was shocked too and said you know about DES?  She said yes of course, and I told her then please understand why I respond opposite to what you expect.  At least one medical professional who is aware of this situation.  It's horrifyng that it's still being used in baby formulas, pet foods, etc. 
 
Hope everyone has a great RA day :)  Cathy
I am all confused now between CCP and CPR and CK. 
 
I went back to my original 6/06 diagnosis and my anti-CCP was off the charts, and have carefully gone through every single testing since then, and it was never repeated by the first rheumy or anyone else.  Is this a test you never have to have repeated if its positive once?  But, the new rheumy just ordered it, but it was pending on the copy I got from the endo, so I don't have those results.  So why wouldn't it be repeated if it was off the charts in 6/06 and now its being repeated three years later? 
 
I think I got CCP mixed up with CRP on detecting sero positive/negative in my last post.  Now the screw-up with the front desk not ordering the CRP.  I don't see the new rheumy for another two weeks, so it will be almost 5 weeks since the blood draw until I see him - that's a lifetime in RA-world.  The CRP is for detecting sero positive/negative, right?  So, no CRP, so an incomplete blood snapshot. 
 
And my CK on 6/06 was off the charts, and it also has never been repeated, but my primary, the new endo, the new rheumy all mentioned it as being very high when they I first saw them and gave them the 6/06 diagnosis blood test results, but no one has repeated it, including this new rheumy.  Isn't CK a test for muscle damage, like heart attacks?  If I have polymyositis, wouldn't I (they) want to know about ongoing or no muscle damage?
 
And I gave a urine sample, and neither the endos or the rheumys' reports have a urinalysis on it, and I check their orders and no one ordered a urinalysis, first time I have not had one done since diagnosis. 
 
I am all confused, but have at least written all this down for the second visit with the rheumy and I guess I will have to double check him and the front desk blood testorders before I leave the office.  I was hoping he would work out, so I think this second appt will make up my mind.  I get very tired of having to doublecheck everybody's work that I am paying them to do properly.  Big sighs. 
A quick hello.  Suzanne and family are on vacation this week.  Should be back next week. [QUOTE=justsaynoemore]Well, I took the copy of the new rheumy's blood work that he doesn't know I have :) and kept going over it, and knew something was missing.  So I compared it to the copy of the bill that I always ask for (to get the diagnostic coding to see what they are up to) and the front desk person missed putting the CRP he ordered on the checkout sheet onto the lab test paperwork.  I cannot wait to see how they try to get around this one.  But the SED is great, so its kinda moot to do both, but he did order it and opps.  The two times I went sero-positive I also had my only two high SEDs at the same time, so I am hopeful my anti-CCP is normal too. 
 
The only wild card is this sarcoidosis test, but I am putting my faith in my ex-hubby the chiro who picked up on the first 2 nodules back in the late 90s and said they were calcified lymph nodes, which makes sense if you follow the infectious theory to RA - mycoplasmas in my lungs being contained by my autoimmune system.  As my system weakened, it took more and more to contain the mycoplasmas, making the nodules bigger and bigger.  And most of my RA has been in my organs, not my joints.  The funny part of this is that I have been dxed with RA for almost 3 years, and the dermatologist for the MTX-induced toe fungus was the one who ordered up the special lung diagnostic test we are suppose to have and all my current doctors (including the ex-rheumy) knew I had nodules in my lungs.  I will never understand this system. 
 
And the new endo's PA/RN knew about DES, and she about fell out of her chair when I said I was an in-utero DES baby (its in the chart).  I was shocked too and said you know about DES?  She said yes of course, and I told her then please understand why I respond opposite to what you expect.  At least one medical professional who is aware of this situation.  It's horrifyng that it's still being used in baby formulas, pet foods, etc. 
 
Hope everyone has a great RA day :)  Cathy
[/QUOTE]

What baby formula contains DES?
[QUOTE=justsaynoemore]I am all confused now between CCP and CPR and CK. 
 
I went back to my original 6/06 diagnosis and my anti-CCP was off the charts, and have carefully gone through every single testing since then, and it was never repeated by the first rheumy or anyone else.  Is this a test you never have to have repeated if its positive once?  But, the new rheumy just ordered it, but it was pending on the copy I got from the endo, so I don't have those results.  So why wouldn't it be repeated if it was off the charts in 6/06 and now its being repeated three years later? 
 
I think I got CCP mixed up with CRP on detecting sero positive/negative in my last post.  Now the screw-up with the front desk not ordering the CRP.  I don't see the new rheumy for another two weeks, so it will be almost 5 weeks since the blood draw until I see him - that's a lifetime in RA-world.  The CRP is for detecting sero positive/negative, right?  So, no CRP, so an incomplete blood snapshot. 
 
And my CK on 6/06 was off the charts, and it also has never been repeated, but my primary, the new endo, the new rheumy all mentioned it as being very high when they I first saw them and gave them the 6/06 diagnosis blood test results, but no one has repeated it, including this new rheumy.  Isn't CK a test for muscle damage, like heart attacks?  If I have polymyositis, wouldn't I (they) want to know about ongoing or no muscle damage?
 
And I gave a urine sample, and neither the endos or the rheumys' reports have a urinalysis on it, and I check their orders and no one ordered a urinalysis, first time I have not had one done since diagnosis. 
 
I am all confused, but have at least written all this down for the second visit with the rheumy and I guess I will have to double check him and the front desk blood testorders before I leave the office.  I was hoping he would work out, so I think this second appt will make up my mind.  I get very tired of having to doublecheck everybody's work that I am paying them to do properly.  Big sighs. 
[/QUOTE]
The anti CCP (anti-cyclic citrullinated peptide antibody) is the most specific test we currently have for RA.  It is positive in about 90% of ppl with RA.  There is no data on the effects on treatment on the anti ccp so as of right now once it is positive there is no reason to repeat the test esp if you have a diagnosis of RA.  Sero Positive/Negative refers to the rheumatoid factor test however most people with a positive rheumatoid factor are also anti ccp positive .  The 10% of ppl who test negative yet stil have a RA diagnosis are most likely to be sero negative.  Most patients with JRA test negative for the rheuamtoid factor.
 
The CRP or c reative protein is a test for inflammation. It is a bit more precise than the sed rate.  Thr crp test is more specific for chronic vs acute inflammtion than the Sed rate.  This test should be run every time your  ( a RA patient) blood is drawn but some rheumatologists still rely ony on the sed rate
 
The CK is a test for muscle damage so absolutley if you tested a high positive once that this test needs to be repeated and checked out.  This test woud not normay be positive in someone with RA unless there is some other conition such as polymyotosis or heart attack.

.

justsaynoemore2009-06-17 16:54:34 [QUOTE=justsaynoemore]Well, I took the copy of the new rheumy's blood work that he doesn't know I have :) and kept going over it, and knew something was missing.  So I compared it to the copy of the bill that I always ask for (to get the diagnostic coding to see what they are up to) and the front desk person missed putting the CRP he ordered on the checkout sheet onto the lab test paperwork.  I cannot wait to see how they try to get around this one.  But the SED is great, so its kinda moot to do both, but he did order it and opps.  The two times I went sero-positive I also had my only two high SEDs at the same time, so I am hopeful my anti-CCP is normal too. 
 
The only wild card is this sarcoidosis test, but I am putting my faith in my ex-hubby the chiro who picked up on the first 2 nodules back in the late 90s and said they were calcified lymph nodes, which makes sense if you follow the infectious theory to RA - mycoplasmas in my lungs being contained by my autoimmune system.  As my system weakened, it took more and more to contain the mycoplasmas, making the nodules bigger and bigger.  And most of my RA has been in my organs, not my joints.  The funny part of this is that I have been dxed with RA for almost 3 years, and the dermatologist for the MTX-induced toe fungus was the one who ordered up the special lung diagnostic test we are suppose to have and all my current doctors (including the ex-rheumy) knew I had nodules in my lungs.  I will never understand this system. 
 
And the new endo's PA/RN knew about DES, and she about fell out of her chair when I said I was an in-utero DES baby (its in the chart).  I was shocked too and said you know about DES?  She said yes of course, and I told her then please understand why I respond opposite to what you expect.  At least one medical professional who is aware of this situation.  It's horrifyng that it's still being used in baby formulas, pet foods, etc. 
 
Hope everyone has a great RA day :)  Cathy
[/QUOTE]

What baby formula contains DES?
Cathy I am so sorry you are having all the lung issues.  I have multiple nodules in both lungs also.  I go to see my pulmonologist on Mon. for a follow up and am very anxious about it all.   He is being very careful in watching these things.  He has never mentioned sarcoidosis, just says its RA.  I will ask specifically about that on Mon. 

Funny, my RA is all about my organs as well, though I do have some joint damage in my hands and feet too.

Let me know what you find out... I will be thinking of you!
Cathy, I was diagnosed in 1966 with pulmonary sarcoidosis by routine preemployment xray.  Went on regimen of drugs and have been in remission since.  RA has damaged my lungs more than sarcoids.  Hope you get your labs straightened out.  Lindy[QUOTE=JasmineRain] What baby formula contains DES?
[/QUOTE]
 
I googled my butt off yesterday trying to find something out about this.   Nada.
 
 
[QUOTE=babs10] [QUOTE=JasmineRain] What baby formula contains DES?[/QUOTE]
 

I googled my butt off yesterday trying to find something out about this.   Nada.

 

 
[/QUOTE]


Sounds painful Babs! I think they have come a long way with butt reatatchment surgery, although you may never be able to shake your backside with the same wild abandon...

[QUOTE=leila] [QUOTE=babs10] [QUOTE=JasmineRain] What baby formula contains DES?[/QUOTE]
 

I googled my butt off yesterday trying to find something out about this.   Nada.

 

 
[/QUOTE]


Sounds painful Babs! I think they have come a long way with butt reatatchment surgery, although you may never be able to shake your backside with the same wild abandon...

[/QUOTE]
 
twas actually a great exercise and I may google my butt off again and again!!! LOL
Whoa! Slow down there Babs.
Guys like a girl with a little junk in the trunk!Maybe ThinkGeek needs to come up with a new shirt - they already have LMAO.  Now they need GMBO!


My research keeps sending me back to the Marshall Protocol, and here is a link in Wikipedia:
 
 
So, I have it down to three competing theories about RA/AI:
 
1)  Traditional AMA/MD theory:  For reasons unknown, your immune system attacks your body, and you start into some some of autoimmune disease, of which there is no known cause or cure;
 
2)  Antibiotic Protocol by Dr. Brown:  Isolation of a mycoplasma which causes RA and is treated with antibiotics, mostly minocin and doxy; and
 
3)  Marshall Protocol by Dr. Marshall:  According to Marshall, chronic diseases are caused by a variety of bacterial forms including L-form bacteria and biofilm bacteria, which persist and grow in number by interfering with the proper functioning of the innate immune response. Marshall has proposed that chronic diseases can be treated by activating the innate immune response by regular doses of an angiotensin II receptor antagonist (being used as a Vitamin D Receptor agonist).  (Direct quote from Wikipedia).
 
Anybody else know of any other theories? 
There's the Hygiene Hypothosis and the Danger Model.  That's my favorite as it seems to be the only one that takes into consideration the possibilites of environmental exposure.  I had a post a while back with Danger Model in the title and don't think anybody except me was as excited about it as I was.
 
Also, Cathy - mainstream med docs don't seem to repull CCP tests but AP docs do.  Apparently you can go CCP negative when you're in remission on AP.  I went negative and am staying there and hubby went negative on his (57 down to 0) with Minocin.  It's why I keep asking on other threads if anybody is having those tests pulled on the traditional meds.
 
Pip

.

justsaynoemore2009-06-17 16:55:33Found this looking for trimethoprim, that shares a target with mtx:

"Cotrimoxale Treatment for Rheumatoid Arthritis"

http://www.ncbi.nlm.nih.gov/pubmed/11590583?ordinalpos=48&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

From the abstract:
"RESULTS: RA treatment is associated with numerous problems such as lack of efficacy, frequent side effects, and high cost. Analysis of the relevant literature revealed that experience with CTX in the treatment of RA is limited. However, the results of several nonrandomized and evidently forgotten clinical trials and laboratory investigations suggested that CTX might serve as an effective and inexpensive therapy for RA. Several lines of evidence suggested that CTX has nonspecific anti-inflammatory and immunomodulatory properties. Although nausea and vomiting were common reasons for CTX withdrawal, they were noted in only some studies, and no major organ toxicity was observed. CONCLUSIONS: Because of its therapeutic qualities, low cost, and relative nontoxicity, CTX seems to warrant a role in the treatment of RA."


This was 2001, wonder what happened?

why would something  that hasn't been considered since 2001 suddenly be a good thing?

this is a sulfa drug....so IF you have reactions to sulfa's you will not like that at all!!  you can get a drug induced headache from the allergy... a BAD rash! ... fever caused by this antibiotic..... and some become very ill w/ blood issues such as a low platelet count.
 
Read below......One of the most profitable drugs ever.    it's some scarey stuff.
 
 
 
 
 
I have a sulfa allergy...scary stuff.  I carry an EPI pen for it. [QUOTE=babs10]

why would something  that hasn't been considered since 2001 suddenly be a good thing?


 
 
 
 
[/QUOTE]

???????????

I  just said I wonder what happened........


[QUOTE=Lynn49]I have a sulfa allergy...scary stuff.  I carry an EPI pen for it. [/QUOTE]

My daughter has a sulfa allergy, but just informing her physicians and pharmacists has kept her out of harm's way so far.  Any caregivers are informed as well, plus of course I'm trying to get her to remember!  Not having a grasp of what it is makes it harder for her! 
Agreed Suzanne...I was alluding to what may have happened???
 
It's risky business from what I read..Lots of people are allergic...My Mom and Gram were... I am not... hard to tell who will be and who won't.
FYI - I've been looking around for info on trimethoprim because it is the med that is added to sulfa to make Septra, etc.

Take the sulfa away, less allergy risk, and you have a med that has the same target as mtx. 

It is known that sulfa helps arthritis - look at sulfasalizine and even the results people get with MSM. 
[QUOTE=babs10]
It's risky business from what I read..Lots of people are allergic...My Mom and Gram were... I am not... hard to tell who will be and who won't.
[/QUOTE]

Sulfa allergies are pretty common as far as drug allergies go, I think.  When they were recommending sulfasalizine for my daughter, they kept asking if any family members had sulfa allergies.

We didn't give it to her - in hindsight, thank goodness!  She was only two, and I'm sure her reaction would have been worse than when we discovered the allergy when she was older.

I understand where you're going..... I've been trying to push RD into  putting sulfasalizine into my cocktail......

[QUOTE=babs10]

I understand where you're going..... I've been trying to push RD into  putting sulfasalizine into my cocktail......

[/QUOTE]

It also has a Steven Johnson Syndrome risk, FYI.  And I thought you would know right away and could discontinue it, but they said no, it can start at any time. 
[QUOTE=Suzanne] [QUOTE=babs10]
It's risky business from what I read..Lots of people are allergic...My Mom and Gram were... I am not... hard to tell who will be and who won't.
[/QUOTE]

Sulfa allergies are pretty common as far as drug allergies go, I think.  When they were recommending sulfasalizine for my daughter, they kept asking if any family members had sulfa allergies.

We didn't give it to her - in hindsight, thank goodness!  She was only two, and I'm sure her reaction would have been worse than when we discovered the allergy when she was older.
[/QUOTE]
good call...... w/ babies... it's so scarey!!
 
Yeah... as far as my meds....Not sure I want to go "there" now anyway... I'm feeling pretty great!!!
I have a pretty bad sulfa allergy that I need to see about getting rid of but I don't carry an epi-pen.  I figure, what's the chances...
 
Hugs,
 
Pip
http://medical-dictionary.thefreedictionary.com/sulfasalazine
I know this is the AP thread but as you have been discussing Sulfasalzine, I was interested to note that it is contraindicated when using MTX. I am assuming anyone on MTX is not using the Sulfa!it is not contraindicated with MTX..there is a incresed chance of suppressed bone marrow whch will show up in the regular blood work anyone with MTX gets.    The combo has been used for decades with few problems as long as you are monitoredthanks for that info Buckeye....... it's what I had thought I'd read....

.

justsaynoemore2009-06-17 16:56:29JSNM-
 
wikipedi!!!!  Wow.

Crud - lost my post -

There are a couple more hypotheses that I can't remember, just thougth they were non-viable - but I have them in my research.  Are you sure you don't want to help me 'clean out my closet" - all the free reseach you'd want!  LOL
 
I'd redo the list like this - JMHO
 
1) Autoimmune
2) Infectious
       a) Marshall -> NO D