Requesting New APer’s... | Arthritis Information


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.


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  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!

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 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, 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!



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. 


I’ve 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 ‘bad’18 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.  I’d 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.


I’m glad I did.  Because I’d 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. 


It’s not to say I didn’t 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 Cat’s glove.  My 6th month herx scared me to death – a case of pneumonia like I’d never had before.  My lung capacity dropped so much that I was unable to breathe and couldn’t 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.  Didn’t 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 I’d lost forever.  Again. 


That trip across the country showed me something I’d not been willing to internalize before.  I knew of the ‘hyperpermeable gut lining’ theories but didn’t 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, I’m 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 I’m in some sort of weird mid-life health crisis.  I keep doing things just to prove to myself I can.  I’ve 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!




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

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.



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. 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!



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

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: 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 :)


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:
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!!


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'. 



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. for thought if it develops.

Pip 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.

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.


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.



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. 


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!



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

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!


5 whole days!

You go, girl!




justsaynoemore2009-06-16 16:28:33

I'm a bit strapped for time today (just got 63 student essays to grade

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 billion each year. The disease affects more than one in every 200 Americans. However, research funding for RA averages as little as .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 0.00 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'.


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. 


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!



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.   

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.


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. 




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. 



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?