Thanks Janie, Lori and Nut - I appreciate your kindness. Obviously Lev can't read well enough to post the actual studies that are posted on the Roadback. If we all stick together we can heal and then help others heal.
Hugs to all including Lev,
Pip
Lev. not every lorster that pops up on google is me. I blog on two sites, period. I don't have time to sit here and post thousands of posts. I work 3/4 time. I am not against meds. Not at all. There is a place for them and there are some great meds out there. I'm against prednisone and polypharmacy. I think people are over medicated. I was. I weaned myself off and I feel better. You ARE angry. It shows in your posts. And you seem to have it out for gimpy and pip. I think you have an issue with intelligent women. I observe every day that I work and I happen to know which patients come out on top of their disease and it isn't the ones that are always snarling and angry. It is the ones that are positive and actually are civil to others. That would not be you. You need to work on that. Well Lorster,
When I said do a search for lorster I meant to do a AI search, not google. I'm not mad about my diseases, I'm lucky to be alive with the way I lived my life.I know that you are against prednisone and big pharm and the rich and walmart and doctors and hospitals and republicans and the USA and I know that you think that we are over-medicated but the reason for your ignorance of our drug habits is that you don't have our disease. At best or worst you have palondromic arthritis where you may have pain for hours or even days at a time and then nothing for months at a time and of course no bone erosion or joint damage and generally advil or aleve or plaqunel is the drugs of choice. When you get my disease, then I will allow you to join in a conversation about my drugs but without having my disease, my pain, my joint and bone damage you honestly cannot say this or that about it. You are just talking ignorantly. Ignorance means with-out knowledge, stupidity means with knowledge but without common sense.
LEV
levlarry2008-04-15 19:41:50Lev, you are in the minority on this board with severe RA. You may be one of the ones that may benefit the most from meds. I'm not doubting that. I do think pred should be the drug of last choice because ultimately, it will do as much damage. No one on this board knows how much I suffer on a daily basis. I do not share some parts of my self with anyone. I tough it out. I deal with it in other ways. Please do not tell me what I have. You do not know me. I just choose to deal with my disease a bit different than most on this board.
Lorster,
That's what I mean when I say you are talking in ignorance. You do not "tough out" severe rheumatoid arthritis. It just doesn't happen. Severe rheumatoid arthritis means that you can't chew food because of the pain in the jaw joints. You can't "tough out' severe rheumatoid arthritis. You can't talk smack to me about rheumatoid arthritis, it's not going to happen. You can't "tough it out" while hoping Doctor Death gets out of jail. Severe rheumatoid arthritis gives a brand new outlook on suicide. Rheumatoid arthritis removes all good thoughts and thinkings with-out the drugs. DO NOT tell me you are "toughing it out". You aren't that tough. If I was "toughing it out", I couldn't be on this computor or would I want to be. I would be in a position with the least pain hoping not to sneeze or cough or have to move saying over and over, "this ain't living." You are not toughing it out because you do not know what it is. If you did, prednisone and a needle filled with enbrel would be your two best friends. You tough it out indeed, don't make me laugh.
LEV
Lev:
I live in Minnesota. I had SEVERE RA and when first diagnosed I tried to go to the best, Mayo Clinic in Rochester. They wouldn't see me and were not taking new patients. Maybe if I was a star or a queen, it would have been a different story.
In my case, AP did it. I'm in remission. Who cares what works or where you go just the end results. I don't want anyone to live with this horrible disease. I've had RA for 4 years and if my story can help someone isn't that the point.
I'm not knocking Mayo either. MY MIL went there for a very rare blood disease and got wonderful treatment. She got in because she was critically ill.
I think you should find another sand box to play in.
Becky
Beckey,
Where do you hide? You just never post except on a thread like this and then all of a sudden you mysteriously appear. Do you have like an alarm that rings to let you know to post about the same old smack you always talk? And Beckey or who-ever you really are, you don't have severe rheumatoid arthritis and you never did. This is my sand box if I want it to be just like roadback is your sandbox, it's that simple, isn't it?
LEV
I have to labs to prove otherwise and I really don't care what you think. This board doesn't need your negativity. These are people who are just trying to live a good life with a debilitating disease.
I don't post much because life is good and I'm not checking in here as much as I probably should to HELP those with questions and concerns.
I wonder if you really treat people in person like you do on this board. Hmmmm.
Becky
This is so sad.
Lev, it seems like you are arguing about whose RA is worse. Shouldn't we focus our energy more on what we have in common? Maybe have a little compassion for our comrades? Someone can still have moderate or even mild disease that is painful and disruptive to their lives, even on a daily basis. I am truly sorry that you have such severe disease. I wished you didn't.
kweenb2008-04-16 04:57:31SEVERE RA is a silent killer.Within 2 months of onset I was bed ridden. I was out of work 10 months. Dr to DR. No improvement. I remember thinking about what Lev said and I started thinking If I have to be like this then I don't want to be. Jaws elbows ankles,knees everywhere. Just to gp top the bathroom was nearly impossible. They tried Gold. every pill under the sun etc. Not until MTX did I get some releif. I know what Lev speaks of. Angry sure, You go through the " why me " phase etc. SEVERE RA robs you of most every joy. Going to a party. a game, playing with you children etc. IT can kill your spirit and your soul. Without some releif I'm sure I woul not be here today. Every person need hope. When you get some releif you Hope that there will be more on the way. New Drugs will probably help. Enbrel worked for me until MS type stuff started.It's a crap shoot for sure, but if you REALLY have SEVER RA then you would drink gutter water if you thought it would help. Have any of you guy's with server RH tried an elimination diet?
What have you got to lose.
http://www.frot.co.nz/dietnet/resources/ediet_howto.htm
http://www.frot.co.nz/dietnet/reviews/mcferran01.htm
Lev, maybe you should add a little glass is half full to your mix of drugs. Your anger surely does not help your disease process. Also, go back to cold filtering. You were much nicer back then. I"m sorry you, or anyone else for that matter has severe RA. OMG, 6t5, I'm agreeing with you!
Yes, some people want to believe that they are worse off and that others are 'faking' it. Severe is severe. Like you, my life was over in 4 month. Just done. I found the way back (for me) and I tell people about it. They make the decision or not to pursue that option. I just pray that one day we're all given that option and we can say yes or no from there.
Becky! I've missed you! How is Korea? Have you been seeing the sights or is it all 'ho hum' now? You have to post pictures for us! How did the yoga go? We're you starting?
Hugs, and more hugs!
Pip
Rabbi Harold Kushner calls that "the Suffering Olympics" (and points out what a huge waste of time, emotion, and energy it is---really not an area anything can be gained by focussing on).
[QUOTE=Gimpy-a-gogo]Rabbi Harold Kushner calls that "the Suffering Olympics" (and points out what a huge waste of time, emotion, and energy it is---really not an area anything can be gained by focussing on).
[/QUOTE]
???????????????????????
Puff puff, puff puff. "huh, what? Who's there?
That silly 'My RA is worse than your RA so nanananana!"
Hugs,
Pip
MY RD Doctor went to DUKE...it's number 7 now. Oh, he also went to Northwestern (my Alma Mater) and University of Chicago (also on the list, though I think NU should have been, too).
And you KNOW what they say about Michigan...their girls may be smart but they sure are...... UuuuuuG L Y. Oops, sorry, my hubby is a Michigan State Grad. LOLOLOLOLOLOL :)
Seriously, Lev, Pip rocks. Quit being such a boor and play nice. I feel like crap the last 3 1/2 weeks and want to come here for INSIGHTFUL information and sharing (isn't this Arthritis Insight? or maybe I'm somewhere else...).
I've seen more upbeat, positive posts from her, both publicly and as PM's and really, the last few posts I've seen from you have been malicious, egotistical and attention seeking. I'm sure you are a better person than that.
Lisa j:)
[QUOTE=levlarry]Well Lorster,
When I said do a search for lorster I meant to do a AI search, not google. I'm not mad about my diseases, I'm lucky to be alive with the way I lived my life.I know that you are against prednisone and big pharm and the rich and walmart and doctors and hospitals and republicans and the USA and I know that you think that we are over-medicated but the reason for your ignorance of our drug habits is that you don't have our disease. At best or worst you have palondromic arthritis where you may have pain for hours or even days at a time and then nothing for months at a time and of course no bone erosion or joint damage and generally advil or aleve or plaqunel is the drugs of choice. When you get my disease, then I will allow you to join in a conversation about my drugs but without having my disease, my pain, my joint and bone damage you honestly cannot say this or that about it. You are just talking ignorantly. Ignorance means with-out knowledge, stupidity means with knowledge but without common sense.
LEV
[/QUOTE]
Oh, I missed this one, and now I am ticked off...and I'm not going to be as classy or as graceful as Pip and some ot the others. I have a graduate degree in microbiology. I am a dental hygienist, I am part of a Terrorism Task Force, certified in ADVANCED: life support, disaster life support, hazardous materials, pediatric life support, trauma life support. (of course, can 't work now, with the whole RA thing...) Now, not to toot my own horn, I'm a pretty smart gal. Oh, and I'm a MOM too.! (which imho gives me as much credibility as all the letter soup after my last name)
That said...disease is disease is disease is disease...RA PRA, Diabetes, Degenerative disc disease, you name it, if it's yours you OWN it, and you have the right to discuss anything you damned well feel like discussing. How dare you separate yourself as special? I HAVE SEVERE RA..my flipping AORTA bent and is probably going to SPLIT IN HALF because of this disease. I HAVE 3 YOUNG CHILDREN I DO NOT WANT TO LEAVE. AND PAIN!!!!!!!!!. Oops, it looks like I may be on a bit of a 'roid rage here.
And you know what? I want TO KNOW WHAT PIP AND EVERYONE HAS TO SAY.
Shame on YOU for thinking you are SO SPECIAL. We are all special.l
As Joonie once said, we are all individual RA snowflakes.
My favorite "Joonism"I was thinking the ignore button would work when he gets into one of his snits.
Thanks guys.
And Lisa, what are they doing about the aorta? Did you post about that? You know they can fix that so you're not going anywhere and will live to be an embarrassement to your children.
That's my goal.
Pip
I went to the U and I am uggggly! LOL
You know what we say about State?
Pip
Larry-
You might read Doctors v. Patients chapter in The Road Back by Dr. Brown. Interesting read.
No, what do they say about State? (and just kidding about the U of M girl thing...LOL) Did you go to U of M or U of I?Oh, my bad, I see you said I went to M and I...but I'm sure you were the exception to the rule...Go Big Ten!PIP IS A LIAR.......she is fabulously gorgeous! :)If she's anything on the outside like she is on the inside, I believe that in a heartbeat.Oh, you can believe it.Listen,
It was and is very clear that I was not talking about whose pain or disease is worse. Those of you that mis-interpreted what I said to mean some type of pain or disease comparison does not surprise me. So let me break it down so that even a person that is not only a microbiologis and a dental hygenist that must have taken the .99 internet speed reading course.
Persons A and B have Palondromic Arthritis, a very mild form of an arthritis.
Person C has Mild Rheumatoid Arthritis.
Persons D, E, F, and G have Severe Rheumatoid Arthritis.
Persons A, B, and C make statements that the drugs that D, E, F, and G take is not good and that D, E, F, and G are over medicated by the terrible Doctors that work for the terrible hospitals and both paid off by the bad people at the corrupt pharmacuitical companies.
Are you still with me so far? If I have to draw pictures which is probably needed, it's not going to happen.
Now, What I said is that A, B, and C cannot say anything about the drugs that those with Severe Rheumatoid Arthritis take unless they have the symptoms and pains associated with Severe Rheumatoid Arthritis, not some stupid garbage like pip's "nananana, my ra is worse than yours" and by the way, it is, or they would take my drugs, gladly.
Now, directly to you RDHcRA,
I'm glad you posted so that people can see that diplomas and certificate does not inteligence make. I'm sure that you have to toot your own horn because I'm sure those around you are certainly not impressed. So when you were cleaning someones teeth you would also look for microbiological weapons implanted in peoples mouths, under the cavity filling? You can frame all of your certificates in your office or across from the toilet, just in case. I would rather have an ugly on the outside girl rather than an inside ugly girl like you and I'll even bet you are ugly outside to boot. It doesn't surprise me that you are a physical mess because you are a mess inside, you need to clean your soul, it's filthy. You probably won't, you are too smart for that.
And oh , I am not just special, I'm very special.
If you think these last four posts from Pip are upbeat posts , you have more wrong with you then just physical, your mental isn't quite right either, what a surprise.
These are pips last 4 posts, same old garbage. She spends all of her time looking to find the evil in medicines and medical companies and try to convince everyone that everything and everybody associated with medicine is corrupt except roadback.org and yet she still hasn't explained that phoney baloney study called the HARRIS POLL. She still hasn't posted the amount of money given to roadback.org, who the big contributors are and where the money went and how much was paid to the marketing firm that marketed the HARRIS POLL and yet she continues to demand clarity when it comes to big pharm and other companies.
These are some of my last posts:
Like I said, thank you for posting and letting everyone know that diplomas and certificates does not insure a persons inteligence. Keep tooting your own horn, especially around blind corners.
LEV
Seems like everyone is tooting their own horn...I don't have a horn as I have no musical abilities - tho it certainly doesn't stop me from singing. You know you're bad when your child is 2 and covers your mouth!
Hey Linda - have I always said you're my friend or not! I adore you!
OK, since we're not making U jokes, I'll refrain from the jabs at...Moo U!
Hugs to all - even you Lev.
Pip
Okay, I see. I didn't get that Pip! and Lev were in a
competition.
Pip wins!
Sorry, Lev. You fail.Hey Lev...in my absolute professional opinion....
Bite me.
Only took to sophomore year in high school to learn that one. I'm sure you are familiar with it, seeing that's probably where your intelligence lies, or maybe your education ended. And oh, by the way, they give out PhD's in Dental Hygiene...not that I have one...I was too busy by that point finding something meaningful in my life..starting a family and nurturning the long term friendships I have.. Maybe you are just lonely and need to bash everyone around you.
Don't mess with a Gemini on roids. I always win.
Oh, and one other thing: moon face from the steroids aside. I am a breathtaking example of a beautiful redhead. And, I am a terrific person to boot. I just don't think I like you very much.
Sorry Pip!, my momma would be disappointed in my lack of class here. Glad you are keeping it together.
Lev, gets under everyone's skin. We are not entirely sure what his problem(s) are, but we have to put up with him.
I think I liked Lev better when he was posting his pictures of his cruises around the neighborhood.
At least he is not posting everyday, like he was.
Hi Pip!!
Still in South Korea. It's been kinda tense with the new President in South Korea. He's taking a harder line at North Korea. The other week North Korea threatened to "flatten" Seoul. Yikes! I live in the burbs of Seoul. Also been seeing an abnormal amount of US fighter yets taking off of the base just south of us.
Yoga is more like yogahhhhhhh. My class is mainly people in their 70's and you should see what these Koreans can do. Push ups, sit ups, bend like a pretzel... I'm doing really well and can't imagine if my RA was raging. I did do Tai Chi when I was first diagnosed with RA up until we left for Korea. It really did help. The teacher also did reiki (sp) on me and that also seemed to improve things.
Now, if you could get the old Korean men to stop spitting as I walk by, I'll be a happy camper!
Becky
One more of Lev's victims. Hmmm. Lev, take your ty3, you will feel better and maybe not so mean to everyone on the board. Oh and Lev, Am I A, B, or C? Just wondering since you seem to know so much about me.
Hummm.... I actually understood Lev's alphabet persons story, and did not get confused... I think. *looks confused*
But I did get that dipolmas and certificates did not make alphabet persons intelligent.
Oh and no tooting your own horn. *toot toot* I took that as no flatulating aka as tearing ass. Sorry... new phrase.... thanks to the www!
Did You Know Fact:
Though you might not think it, we each have an average of 14 occurrences of flatulence per day. I agree with Joonie. I understood it quite well as did most. but since they do not like Lev they try and discredit him. I'm at a total loss on some of this. Who are the alphabet people? I can assume that Pip is an A or B. Who are the rest, and how does Lev know how severe someone else's disease is.
I always thought I was mild, but according to my RD, I'm moderate to severe. I found out just how severe when I had to stop the MTX and Enbrel. Couldn't even get out of bed without help from the hubby.
From Lev:
Persons A and B have Palondromic Arthritis, a very mild form of an arthritis.
Person C has Mild Rheumatoid Arthritis.
Persons D, E, F, and G have Severe Rheumatoid Arthritis.
kweenb2008-04-17 07:00:31I understand Lev's alphabet scenario. I think it doesn't really matter who's who. He's just saying that people with milder disease symptoms or even a different disease aren't really in the posistion to make judgements about the choices more severe sufferers have made about their treatment.
I will say though that I have never thought that the AP'ers were trying to bully anyone concerning AP. I think they just are very convinced they are on the right path so they want to tell people. Whether you agree with them or not, I think they're intentions are good. I mean, what if they thought they were on the right path, a path that might help others, but they kept quiet? That wouldn't be very nice.
No Linncn. Me, Pip and Gimpy are A, B, and C and the rest of everyone on the board are the other letters of the alphabet. You know, I really don't care to be any of the ppl on the alphabet. I'm going to find a cure for this crap! If it kills me, lol.hi all intertersting posts here.. i have severe erosive ra which ruined all my
joints in the first 4yrs as the disease has progresed the inflamation has become less
but joint destruction continues.. whithout pred i would be housebound.. it is well
documented that low dose pred 5mg-10mg is well tolerated.. i have used it 13yrs
and am more afraid of biologics than any other meds.. long term side effects still
unkown..as for antibiotic therapy i have read a lot and see it is used for mild
to moderate ra. and have read posts onother boards were people tried ap
as they did not want dmrds or pred. and suffered severe joint damage.
as a result.. i asked my hospital about ap last year but they do not do it.
as for pain thresholds we all are different.. allso in are choices of meds..
Boney
Hey Boney -
The studies are paltry - but I was 'early onset severe' and did fine on AP. To find other severe people on it, lurk on
www.roadback.org. Lev's problem is he doesn't believe I was severe. I'd send him my chart but he'd think it was manufactured. LOL
Yep - agree that pred had it's uses.
I've only seen one post of person who said a they had severe joint damage from AP but she was also on other meds. Technically that's not AP. Also, Anna UK has a friend that had damage on AP. Not dissing them - heck, they gave me the idea to always get X-rays to make sure I'm not progressing until I hit remission.
OK, stupid question but...if you don't want the biologics and you're still getting damage, what's the problem with trying AP. At worse it doesn't work. At best, it does.
Most hospitals don't do AP. "We don't do that here" was what my SIL was told BY MY DOCTOR when she inquired about it. Duh? What am I, chopped liver?
You need an doc willing to work with you as contrary to rumors, you need a doc to get this stuff. I chose to fly out of state for help because these guys are rare. I'm glad I did.
Hugs,
Pip
P.S. Lorster is looking for the cure! Does that mean we're more than an 'organization' now?
[QUOTE=Pip!] Hey Boney -
[/QUOTE]
I thought Lev's problem was that he's an obnoxious, gratuitously confrontational curmudgeon that doesn't know how to behave in civilised society. I'm sooo confused!
Really, until he learns how to be civil I don't even bother reading his posts, let alone spend half a minute guessing who his alphabet is.
hi pip .. i thought the idea was to start ap along whith other meds. then when the ap
gets to grips .. try reducing the other meds.. as the theories i have read on ap
is that the antibiotics used have anti inflamitories in them.. the people i read about
whith the joint destrucion had never used any other meds only ap..
i am not negative about ap and was going to try myself. on top of my meds.
i thought i could get a prescript for penecilian. but it is more complex than that
and the antibiotic given in high doses.. i read it deystroys the good bacteria
and you have to replace it..i am not a very healthy eater.. and thought
i may do myself more harm than good..and i feel this regime takes a dedicated person the other prob is i am only able
to take penecilian ... allergic to the other antibiotics..
are you saying you have never had any other meds and are only
having antibiotic infusions.. or did you turn to ap after years on other meds..
Boney
I've not been on for a couple of weeks and this thread has taken some reading!
I for one enjoy Pip's musings whether I agree or not.
I enjoy the trivial stuff.
I've read with interest some of Lev's musings hand have come to the decision....
Lev you need to get you someSarah! LOL His problem is he's in the middle of the MI AI vortex. All grey and AI-y!
Boney - no, never did the infusions and never did any of the other meds except a couple of pred packs. Just the Minocin. As for the people with the joint destruction, I don't doubt they exist. Heck, people on biologics still suffer joint destrution. My statement is when I've run accross some of these people making these claims, when I question them, I get more of the story. Like the no probiotics. Or they were on plaq at the same time. Or mtx. Or other meds. Or they were on AP for 3 months? What DMARD works in 3 months?
Yes, you HAVE to replace the good bacteria - that's pretty easy with probiotics. Most people who fail AP don't do this. Then, come around a year to 18 months and they're 'what happened???"
Old school AP was stop all the other meds and 'just do it'. I think it was a baptism by fire attitude. Many people quit. Now people are working their way off the other meds but...it's a lot longer time frame then. The point is to recognize a 'herx' and figure out how much you can take, then handle that. Once you know it's working it's easier to do.
Some AP docs don't think it's killing anything (jeez, you'd think they'd read the newest research LOL) and it's just anti-inflammatory in nature or immunmodualtory. I don't. I think it's killing stuff because of studies I've read. It really doesn't matter how it works as long as it works, no?
Are you allergic to the tetracyclines? And is it a 'true' allergic reaction (did your face blow up and you were unable to breathe?) or was it a herxheimer reaction - a temporary worsening of symptoms like a rash and nausea? Many use Zith when they can't do the Minocin. I know there are ways to get over an allergy but I haven't researched it yet.
Finally, if you are considering this at all, lurk on
www.roadback.org. There is so much help there it will make your head spin. And it takes months to start understanding any of it. At least for me.
If you have other medical issues, consider getting an AP doc. Most of them know the ins and outs of this. Others are 'trainee's'. Sigh.
The question is...what are you willing to do to get better?
Hugs and more hugs,
Pip
hi pip i am pretty sure these people do exist whith joint damage.as for dmrds i had good results on mtx whithin 3 mths allthough joint destruction still progressed. yet you are saying that ap as a stand alone med is preventing any joint damage. but ra is a strange illness
and many do not have joint erosions whatever the meds. and have inflamation...
im not sure about tetracyclines.. i only know i get swollen lips and breathing probs
on the antibiotics dont know the groups..allso allergic to codein and buscapan..
i really find it strange that a antibiotic that has been around many years of which you
say prevents joint erosion has not been used by rheumatologists. as a 1st line of defence.
i will have a lurk at the site you have given. and will ask my rheumatologist more about this.. form of treatment..
it is good to see somebody has a good result whith something whatever the med..
Boney
Lev Wrote: "you don't have severe rheumatoid arthritis and you never did"
Would you say that the patient stories in The New Arthritis Breakthrough are examples of severe RA? How about the story in chapters 5 & 6? Would you say that woman had "severe RA"?
ANN
ANNonymous2008-04-18 16:48:21I again want to refresh everyones memory as to why I started this thread. Everytime i mention my U of M doctors Pip attacks them and the U of M hospital and so I wanted to show her just highly rated they really were, one of only 18 to reach the elite status.
Many, many months ago I had posted the eight year safety study for enbrel use and the post was quickly attacked by Pip and Gimpy and a few other minoheads. Let me show you this also and kind of read through it. All Buubagump thought that she was doing was giving some good information to the good members here at AI and who would have thought that she would be attacked like this.