Better this....
Huh?
Lyn xxx
LyndeeNZ2008-09-14 05:49:23I gotta agree with Buck on this one. This thread is just stupid.
And who is Anna? I'm lost.Anna is the troll of AF. She comes here in multiple disguises but she always says the same thing. BeeBee. Birdgirrl. Now Reader. GoGo will have to help me out, but with one disguise she signed her name Robin on the info page and kept signing the posts with another. She is also unable to learn, poor thing. So, everytime Lev starts in with his BS on PRA she comes behind and parrots him. She is a good parrot - mostly it's listen to your doc etc instead of 'feel better'. Anna NEVER wishes people well, hopes they get over a bad time, etc - actually
helping with RA is just a pose. The rest of the time she just is anti healing.
Buckeye, Lovie etc. - I agree this is probably not a good thread - but I have reached the end of my rope with this moron. I am tired of his hate-filled attacks on Joy, GoGo, and anybody else that 'opposes' him. Good God - the man is a bully and a coward. And I'm going to prove it. Notice he didn't agree - of course not - because he doesn't want people to know what a loser he is.
And, if you think about it - how many newbies has he attacked out of the blue and run off? So, I'm taking the chance they will read this entire thread and understand we're being a bit proactive since we don't have a moderator here.
People that are tired of his insanity - please post 'cluck cluck' after one of his rambling attacks against somebody.
Fight the Power!
Pip
is this how you teach your daughter to respond to people she finds difficult? two words IGNORE HIM
you are like pavlov's dog...he rings the bell and sits back and watches you salivate. You can't control his behavoir but you can control your own response. You have chosen to interact with larry you can choose not to
Yeah the insanity needs to stop but until you see your own part and that of your buddies Gimpy and Lorster it will continue because they are just as ugly to people who disagree with them as larry is to people he disagrees with
buckeye2008-09-14 09:04:20Well, Pip must have major brain fog, because Reader(Jamie) replied to this nasty remark, in a nice gracious way..Go check it out
As far as trolls, maybe some people have to be trolls, we were shot down, humiliated, embarassed, name calling, if ANYONE goes against the Queen of AP...
it's not good for our RA
have to ask my doctor about distilled wwater helping RA?
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Quote Pip! Quote Reply Posted: 18�July�2008 at 12:35pm
The board is slow as a glacier. It's impossible to respond to threads as it takes so long to load. They've been promising to upgrade the darn thing since forever but really started promising since May and have continually 'missed' their new deadlines. I've been waiting and checking in occasionally but don't post much because of the delays. Rumor has it Nikkilynn posted a come to AI message and that started the exodus. Either way, it's good because I for one, cannot believe Abbott Labs who sponsors that board, should put up with losing a captive audience because of a system that's beyond archaic.
On another note, I am a smidge concerned about the AF people. Most are wonderful people and great to know one on one but their board was essentially unmonitored. The AF board is, IMHO, totally 'listen to your doctor' and 'traditional medicine only'. That's fine and good for those that believe that but for those that 'question authority' (such as myself) I found the board 'hostile' to outside opinions.
There was a very disturbing trend on that board to 'gang up' on posters who asked about anything other than 'biologic' or 'traditional DMARD's'. Lots of support for those who were using the traditional meds but absolutely NO support for those who chose a different route. There were also a core group of 'Christian's (and I'm using that term loosely) who used God as a battering ram for those who don't follow the pack.
My guess is that when the new board eventually shows up they will go back to AF. Until that time, my worry is about the 'ganging up' mentality. AF never evolved into a board like we have with those interested in diet, AP, distilled water, or whatever getting the info and being helped by everybody no matter what route they chose. The best example lately is Buckeye's help when the APers were AWOL and somebody needed help. NOW THAT's a great board!
My hope is that if the ganging up starts again like what happened around 12/06 til about 9/07 (the oldtimers remember :-) then we'll all just remain calm and ignore that kind of garbage. We have a great board like nowhere else on the net - let's keep it that way.
Hugs,
Pip who is off to ice skate~
I want to once again answer Pip's deranged suggestion that she and I have a physical challenge to see who's right. I don't know why she doesn't pick on someone with her disease, palindromic arthritis. For a person with palindromic arthritis to challenge a person with rheumatoid arthritis is like a person with a boo-boo challenging a person with two broken legs to a foot race. Once again, my challenge to you Pip, is that you be forthright and upfront and honest when you post on this RHEUMATOID ARTHRITIS forum. It is so far past argument for someone without RHEUMATOID ARTHRITIS to post on a RHEUMATOID ARTHRITIS forum on a constant basis that you are being cured by minocin and the AP protocol. New members and guests would certainly believe that you are a sufferer of RHEUMATOID ARTHRITIS because you are posting that you are being cured by the miracle drug minocin. Why in the world of right would anyone reading your posts believe that you aren't suffering with RHEUMATOID ARTHRITIS? After all, this is a RHEUMATOID ARTHRITIS forum. Some people may say that I am wrong for using words like deranged but let's pick it apart. Every member that has been here for some time has read posts from Pip about stupid and moronic Doctors, you know the ones that actually went to school to become doctors, the ones that took an oath to help and heal. Pip claims to be smarter then even the best of the doctors. This is from this thread. This is what Pip said:
"Make an appointment with your doc and I promise to behave (Linncn can witness) and I'll make mincemeat of his AP stance and show you how easy it is to blow these guys out of the water. I'm betting that at the end of the meet - he'll be willing to start prescribing AP to you (because I'm betting the reason you've been on this tear is he told you 'no' and you fell for it.)"
Now which of you, beside Pin Cusion, Gimpy and Joonie are going to tell me that that is not a statement of derangement? It would almost be funny if it weren't for the fact that Pip actually believes that she can "school" my RHEUMATOID ARTHRITIS doctor, a senior fellow with the University of Michigan Hospital RHEUMATOID ARTHRITIS team. One of the top elite of the country. She also has call the doctors at the UoM hospital idiots and morons. She actually believes that her ROADBACK schooling has made her superior in medical knowledge to "real" doctors. That's not funny, that's deranged. That's deranged. What kind of person goes to a RHEUMATOID ARTHRITIS forum when they have palindromic arthritis? For what purpose? Joonie, "pain is pain is pain" is not a true statement. Pains come in all kinds of colors. Try to understand this Joonie, it's not about pain. It's about a person with palindromic arthritis posting at a RHEUMATOID ARTHRITIS forum on a constant basis, making claims that she is being cured by minocin. Pip doesn't post that she is being cured of palindromic arthritis on this RHEUMATOID ARTHRITIS forum, does she? And now Pip is making the claim that not only is she being cured by minocin but that the minocin is actually rebuilding the damaged bent toe. Now that is a miracle that all people with RHEUMATOID ARTHRITIS with deformed joints should be shouting for joy. At last a drug that will repair damaged joints. Think about it, no more joint replacements, just some minocin pills and the joints will start to go back to normal, how great is that? Gimpy still hasn't answered my question about why she gives no credit to plaquinal but still takes it and gives all credit for pain relief to minocin. And Gimpy, since you mentioned thease clinical trials with minocin, would you please be so kind as to post them? Please, do not post from the 1980s and 1990s, okay? And Pin Cusion, take off your Private Messanger club glasses. You have not heard me complain about anybody taking any medicine. I have however, many times stated that I believe that anyone can take anything they want, including horse urine with my blessings. I have however heard many times Pip talk against my biologic and the manufacturers. Have you not read those posts or are you such a biased person that honesty and honour do not live inside you? One more tme, just for you Pin Cusion, it is about Pip posting on this RHEUMATOID ARTHRITIS forum about being cured by minocin and not letting the reader know that she does not have RHEUMATOID ARTHRITIS and so misleading members and guests that would just assume that she is being cured of RHEUMATOID ARTHRITIS because she is posting on a RHEUMATOID ARTHRITIS forum. I mean c'mon, why would a person with a disease different from RHEUMATOID ARTHRITIS go to a RHEUMATOID ARTHRIS forum and even post anything? As far as "who is anna or birdgirl?" They are anyone that disagrees with Pip, Gimpy or Lorster. At least 10 people have been accueed by those three of being one and the same.
LEV
OK, what the h*ll is going on here? Jamie is not Anna, never has been and never will be. Jamie posts on both AF and AI, like a lot of us. Anna hasn't been posting on either because of a death in her family............Sorry Pip, but you are wrong again.Then why hasn't Jamie/Reader educated herself about Palindromic RA instead of mouthing BS she learned from Lev? Sorry - Anna has trolled here enough times that I think she is her. MO. You do realize there are other PRA peeps on this board that are being told their disease is somehow less because Lev and crew want to spread disinformation? We have enough problems getting a real diagnosis and medication without having to listen to this tripe.
Or are we all supposed to be as lucky as you Lynn - perfect disease, perfect reaction to all meds, perfect family with kids that are supposedly microbiologists and somehow up on all the latest research?
Buckeye - I don't give a DAMN what you think. I am tired of this. And I intend to do something about it. This coward only attacks people that disagree with his version of life and RA. I don't think that he's gonna show because he's a coward hiding behind the anonymous Internet. He's probably some cowed old guy run ragged by his wife and 'acting out' so there is no way he's gonna meet a person willing to call him on his BS and make mincemeat out of his doctor. I wonder if we have the same doc - would be funny - don't you think?
Linda - if your meds aren't working, there is serious research into distilled water if you don't want to go the AP route. The point of all this is - different things work for different people and I'm not about to say you don't have RA or are not in serious pain just because you choose a different route. You AF faux Christians do.
Pip
Perhaps it's time to put down the keyboard for a while and live in the 3D world...
This is so amusing!!! More, More,
MORE!
Linda; That's not cool. I hate it when people post PM's. NOt crazy about what Pip's saying in the PM....but Don't do that.
That's about the only thing I hate about a non-moderated board. That would be deleted elsewhere.
There's a lot of folks that will save things and post them months later. WARNING: Be careful what you write in those things. PM~Does not always mean private if someone wants to get other people to dislike someone just because they don't.
Lovie that was not a PM..it was on the thread, when AF went down, some came here to post
i agree, wouldn't post a PM eitherAlthough Anna does come in under different names and trolls and spreads mis-information, I don't think reader is Anna.
And reader is very rude to Pip.
People like Buckeye and others are also just nasty, but since they don't agree with certain people's political views, such as mine, they like to throw stones from their glass houses at me and others.
Lev is just a sorry nut case.
I guess with some people life is just easier if they never challenge the status quo, for instance from the medical establishment.It's easier for them to just beleive whatever the doctor tells them, and swallow whatever pills, than to take some responsibility for their own condition. It's quite subconsciously painful to think perhaps they could feel better or never sustain long term damage, but they would have to think and make decisions for themselves that might go against the grain, something they are not prepared to do. Rather than accept that or do something about it, they vehemently (or passive aggressively) attack others that do. This will never change their personal circumstance, though, so in the end all their nasty attacks are futile.
Pip has been almost personally responsible for helping to restore the quality of life of multiple people with the information and support she provides.
I am personally eternally grateful for that. Even if my health took a downturn tomorrow I would have had this magical summer I just experienced as well as a new healthier perspective on how to research and approach my own health care.
Thanks Pip!
edited for spelling
Gimpy-a-gogo2008-09-14 12:58:56Ah yes. Buckeye and the rest of us are nasty because we're skeptical of some claims. Why is it that the AP camp can be skeptical of "traditional" meds but if anyone is skeptical of AP they're a flaming nutcase? Buckeye seems to be one of the most rational and level-headed folks here. You're unreal.
Oh, sorry, I didn't understand your nastiness was justified. Everything's okay, then.Lovie,
Maybe you need to look for a forum that needs a moderator or start your own forum and then maybe that will fulfil your need to moderate so you won't feel that you need to continue to try to moderate here at AI. I do believe that if you find a position as moderator that maybe you should sharpen your moderating skills. You were so happy to be able to scold Linda that you didn't even take the time to CAREFULLY read her post or you would have realized that it was an open post by Pip. The only part of it you saw was
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Then your ears turned red and you had to scold Linda. I loved the way you told her "Don't do that!" The new AI moderater, Lovie. So what are you doing now. Moderating the apology you are going to post to Linda? Thanks but no thanks to your moderating this forum. Go start your own.
LEV
Lev, I may not totally agree with you on with politics, BUT, I started out with my diagnose many years ago, over 10,at a major teaching hospital.I respect my doctors, and i know it's very hard to get into some medical schools.
Jamie is Jamie
This was on a actual thread, called AF Board Members, not a PM
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Topic: AF board members
Forum: Rheumatoid Arthritis
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Posted: 18�July�2008 at 9:32pm
Hi everybody good to see you all. Thanks for the welcome. Actually I have been a member of this board for a long time I just mostly lurked though, didn't post much. Maybe this will spur me on to post. take care, jamie edited by jamie to add By the way, I am a Christian and if I ever say anything that offends anyone please let me know and I will try my best to apologize and make it right.
Edited by reader 2008-07-18 21:56:43
Topic: AF board members
Forum: Rheumatoid Arthritis
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Posted: 18�July�2008 at 11:25am
Just wanted to take a minute to welcome all my buddies from the AF board, it is so good to have you here. I look forward to chatting and catching up with everybody. Reader, AKA Jamie
Linda; I apoligize. I did think that was a PM and I was wrong. Scanned it too quickly like I'm guilty of in the past.
Lev~I won't be going anywhere my friend. I think you know that by now. Thank you for your suggestion though.
MORE, MORE, MORE
What a pathetic way to spend my Sunday I'm probably going to regret jumping in on this thread, but I have to say that I'm grateful Pip has brought AP to my attention. I admit, I didn't know she does not have RA, but there are thousands of others with RA who will swear they have been helped tremendously by AP. I'm still on the fence about it and hope to make a decision once my PCP gets insurance clearance for me to see the AP doctor. Regardless of what I decide, I'm glad to have known about this so I can research it and decide for myself if it's the right choice for me. What if it can stop the progression of my disease? The RA drugs are only giving me relief but the damage continues. Maybe AP is the answer, maybe it's not, but if I didn't know about it, I wouldn't have the opportunity to research it. There is no therapy that will help you if you don't know about it.
Jesse882008-09-14 13:52:03
[QUOTE=Phatgirl2]
MORE, MORE, MORE
[QUOTE=JasmineRain]Ah yes. Buckeye and the rest of us are nasty because we're skeptical of some claims. Why is it that the AP camp can be skeptical of "traditional" meds but if anyone is skeptical of AP they're a flaming nutcase? Buckeye seems to be one of the most rational and level-headed folks here. You're unreal. [/QUOTE] Since Lynn has passively aggressively remarked on the above post, I will seize the opportunity to add that there is a difference between being skeptical, and actually asserting, vehemently, that AP doesn't work, like her good friend LevLarry does, or puposefully spreading wrong and misleading information, like her very good friend Anna/BeaBea/BrrdGrll does.
Furthermore, both LevLarry/CalGal and Anna/various have come here under different names in order to create the illusion that their viewpoints are supported, which is a lowly and cowardly thing to do.
And Lynn, for someone who claims to be above schoolyard nastiness, I think your self assessment might need a little adjusting! [QUOTE=Gimpy-a-gogo] Since Lynn has passively aggressively remarked on the above post, I will seize the opportunity to add that there is a difference between being skeptical, and actually asserting, vehemently, that AP doesn't work, like her good friend LevLarry does, or puposefully spreading wrong and misleading information, like her very good friend Anna/BeaBea/BrrdGrll does.
Furthermore, both LevLarry/CalGal and Anna/various have come here under different names in order to create the illusion that their viewpoints are supported, which is a lowly and cowardly thing to do.
And Lynn, for someone who claims to be above schoolyard nastiness, I think your self assessment might need a little adjusting![/QUOTE]
There are treatments available if you frequently finding yourself talking amongst yourself.
Anaud,
You are still a spammer/scammer. I have had my nose broken. Nonetheless, you are a spammer/scammer. You said that from the time you were diagnosed with ra you searched constantly for information about ra. I know that if anyone were to look for anwers and information almost every search pops up a page from arthritisinsight forum but strange as it may seem, you didn't find us for a few years untill step number three of your husband's steps to starting a money making blog called anaudslife. In step number three I think it was he told everyone that he would send you to certain free ways and places to advertise and get new signups for your blog and one of the recomendations was to go to forums to advertise for free. He said to be sure to offer them something for free. Make it look nice and be sure to sound caring and sincere. Amazingly, all of a sudden, you found our forum and came here and spammed, offered us a free book and you were so sincere and caring. What a coincidence. I've had my nose broken but I always teach my children right and wrong. I teach them that scamming is a close relative of criminal and much of it is criminal. You sound like a violent person. Most criminals are violent and most violence is criminal. I don't want or need your fake hugs. Keep them for your children, they are going to need them. Oh yeah, I am like this in real life and so are my neighbors. Spammer, scammers and other criminals don't even try to crime here. Our streets are safe. Our children are free. We appreciate our law enforcement but we don't really depend on them. You and your husband wouldn't like it here, believe me and we wouldn't like you.
LEV
Jasmine Rain, Lynn-
Pip,
I don't know why I am even bothering but for one final and last time, I am NOT Anna. It amazes me that you cannot seem to believe that more than one person can come to a very sane and rational opinion on a matter and NOT agree with you. You are NOT the final voice on the topic of AP and as much as it gauls you we do still have the freedom to voice a difference of opinion. According to your narrow minded view of things, anyone here who disagrees with you must be Anna. We have all set back and let you have your way about everything here and for some reason I finally just snapped. If anyone posts about AP we have to be quiet or be accused of attacking you but you have the freedom to call tradition meds toxic among other things and that is perfectly okay and we have to take it. Some one can post about any kind of medical problem and you respond with AP every time. It has just gotten to the point of being nuts. If I offended you in any way then I am sorry for that however, I will not back down or change my opinions just because you don't agree with me. I have a right to believe what I believe even if it disagrees with what you believe and the fact is that I believe you are misleading people here on this board by promoting AP as a cure for RA because it worked for you and you don't even have RA. I have read about PA, I have studied PA, It is NOT the same as RA not matter how you cut it any more that Fibro is the same as RA. I am not denying the fact that you have a chronic disease or that you have pain, I am denying the fact that PA is in the same class as RA. For Pete's sake, why do you find it so impossible to believe that more than one sane person disagrees with you? Does everyone have to agree with you in order for you to be happy?
JAMIE
Okay, the person who posts the most clapping hand emoticons is right.
1
2
3
GO!Anaudlife - I tried love with Lev - it doesn't work. Good luck to you.
Jesse -
I have a slightly different version of RA than most. I'm Palindromic and that's the reason for this thread. The major differences is that our big joints are usually effected first and we are aysemetrical in presentation. We have some different genes that kick on. 25% of PRA people 'resolve' - probably never even know it's PRA - they are usually told bursitus or tendonitis or some such nonsense - and in the beginning of the disease (horrific kill me now pain) usually resolves within 3 days so by the time we get to the docs we are told its all in our heads. As the disease progresses it becomes longer and longer 'flares'. One guy on the IPRS posted he had only 5 - 6 good days last year. Since he was 18. He's in his 40's now, I think. All in a pain level you cannot imagine if you don't experience. I am not saying 'my pain is worse than your pain' - I am saying that there are studies on the pain levels trying to figure out the difference between this and 'regular' RA. All they can come up with is somehow our bodies are using that pain level to isolate the joint.
We are the key to RA.
That pain level means that 50% of the remaining people with PRA do not necessarily get joint damage. Which would you choose - a pain that has you begging to die? Or joint damage?
And 50% go on to regular RA. Which seems to me that since some people are 'mild' in RA and don't get as much damage as others - what is this freakin' morons problem?
I went on to regular RA (in my chart) and reversed back to PRA (asyemetrical herxing) - a gift - in that now I have no pain, just occassional twinges, that if I didn't know what RA/PRA was, I'd just chalk up to 'aging'. I'm not in remission yet (I have about a minute of stiffness in the AM) so am dealing with the last of the RA. I have one toe damaged from the RA which is, apparently, not enough damage for Lev and his crew.
Lev is just doing this because he doesn't want people to try AP. It doesn't matter about all the RA, Lupus, Scleroderma people doing better. He apparently wants to say I 'don't have RA' so somehow this is lessened. Which is cowardly and sneaky and does such a diservice to PRA peeps it's frightening.
Jas -
We are skeptical of traditional meds, but I've said again and again, if AP fails, I'll have no choice. We don't care if you're skeptical - just don't post BS in hopes of talking others out of doing their own research and coming to their own conclusions.
Reader -
It seems I owe you an appology. I was told by somebody I trust that you are indeed not Anna. My only excuse is that I was flaming mad at the time and that I saw one of Anna's patterns and jumped without verifying. And I am gladdened to hear you wouldn't be the type to post PM's. We had that problem before, hence Lovie's response.
OK - lets try this again. If you are a Christian, then please take your (not so fat) backside over to the IPRS and start reading the truth about Palindromic. Because you are doing a LOT of damage to some very sick people if you continue to spread misinformation about the nature of our disease. We don't even have doctors who recognize the syndrome and our mission is to educate them as well as fellow members. We have a lot of problems getting diagnosed and most have docs that prefer to put us on antidepressents (same story in RA but waaay worse for PRA) instead of help us. Which is almost a sure fire way of moving on to regular RA. My rheumy at the UofM kept telling me X,Y, Z was unusual for RA and that the usual meds won't work for us. (Not true but the nature of the pain is that it only cuts it). I would have probably never gone on to regular RA if he'd moved quicker.
Help us get the truth out - please don't help Lev spread misinformation because of his own warped agenda.
Pip
MayoClinic.com reprints
This single copy is for your personal, noncommercial use only. For permission to reprint multiple copies or to order presentation-ready copies for distribution, use the reprints link below.
· Order reprints of this article now.
Original Article:http://www.nlm.nih.gov/medlineplus/rheumatoidarthritis.html
Palindromic rheumatism: Why is treatment so challenging?
Q. |
Why is palindromic rheumatism so difficult to treat? |
A.
Palindromic rheumatism is a rare type of inflammatory arthritis. Treatment can be challenging because the attacks are so difficult to predict.
Palindromic rheumatism is characterized by sudden and recurrent attacks of painful swelling of the joints and surrounding tissues. Attacks may last for several days or just a few hours. Between attacks, pain and swelling completely disappear.
Once an attack starts, treatment may include:
- Nonsteroidal anti-inflammatory drugs
- Intra-articular injections with corticosteroids
- Oral prednisone
To help prevent attacks, your doctor may prescribe:
- Colchicine, an anti-inflammatory medication
- Disease-modifying antirheumatic drugs (DMARDs)
Although palindromic rheumatism can recur over many years, it doesn't usually cause permanent joint damage.
levlarry2008-09-14 15:06:49Reader -
Where have I called traditonal meds toxic? I think I made that mistake once and on reflection, switched to the term 'traditional meds' as a kindness to people on a different road. I have also asked APers to NOT use the term 'toxic', also as a kindness.
I do not have PA. I have PRA, PR, but not PA. If you studied it on the IPRS, you would not be saying what you have said. Are you afraid to read the studies there? Or here the voices of the people afflicted? Or are you reading a one page erroneous web blurb from Mayo? Remember, way to many people think RA is 'just arthritis' and 'we don't look sick'.
AP works for Fibro. It takes longer as it's muscles and the target is harder to reach.
Pip
LMAO - again Lev posts the crappy and WRONG info from Mayo. My goal is to correct Mayo's web presentation. And I will.
Pip
Pip, you are a hoot. I will accept your apology, it is just a shame that you could not just take me at my word. Had you of bothered to ask, I would have gladly helped you see that I was not Anna. As for the "toxic" quote, we could spend months on that arguement. I could go digging back through past posts here and at AF but what is the point? We both know the truth and so does everyone else. Why is everyone that agrees with you always wrong? Even the Mayo clinic for gosh sakes?? I did visit the web site you posted. What I saw was that it does not present like RA and unless it progresses to RA it usually does not cause joint damage and even on that web site they promote the use of dmards. They even say that while AP may reduce symptoms and pain it has not been proven to prevent joint damage in those who progress on to RA. I do feel for you, I know what it is like to have a disease that is misunderstood by the majority of the free world. Great day in the morning, I spent two years looking for help before I found it. And when I did find it I studied every drug that was suggested before taking it. I studied all the options. I have switched drs more than once. Just because some of us do not use AP does not mean that we blindly follow the advice of our drs. it just means that after much study we have decided on the course of treatment we feel is best for us. I am glad that AP has worked for you and I hope it continues to work for you, I don't want anyone to live in pain and have permanent damage. However, I don't want people mislead about treatments. If you want to promote the cause of PRA why don't you tell everyone here about it? I have lurked here for 3 years and thought you had RA until about 2 or 3 months ago and even then I found out from someone else, not you. I don't think it is right to tell others to use AP for their RA because it worked for you. I think that is very, very misleading. I don't tell people to with CFS to use Lyrica because it worked for me because I DON'T have CFS. Also, I want to have the freedom to tell others the about the success I have had with traditional meds without fear of being attacked for it. In an adult world that is a very real possibility, 2 groups of people with differing opinions working together to help others. Neither one of us has the entire answer but together we are closer to a cure. Who knows, maybe, just maybe I know something that would help you but unless I am allowed the freedom to post, you will never know it.
Jamie
P.S. I do not have a fat behind.
[QUOTE=levlarry]Anaud,
Lisa, I am not sure what "seems to be quite a good website for explaining things those who have little knowledge." means. Sentence doesn't make sense.
Lev, I am pretty Internet Savvy. I did some research and didn't come across this site until just recently, so I am not sure why you'd think that running into this site is inevitable if one is using the internet and looking for RA info...
As for Pip, she pretty much told me right away about PRA. Didn't seem to me that she kept it a secret. I mean, I haven't been around a long time on the RA forums and I've known about it almost the entire time.
As for PRA, I am no expert but my Rheumy tells me that the treatment is the same. He also tell me that while he personally doesn't take his patients down the AP path, there is empirical data that implies it works for some.
None of the treatments works 100% of the time or we'd all be on it. That's the reality. Why we waste energy fighting over whose OPINION is better is beyond me.
I do know one thing Lev, you are deliberately offensive & rude a lot of the times. I don't like that. My father taught me to be better than that...
BTW, joint damage isn't proof of who has a more "real" case of RA. It also isn't a badge of honor. It is a horrible thing that none of us should ever have to live with...
I'm sure what Lisa means is that the website explains PRA in a clear way and is a good source of info for people that don't really know much about it.
I understood you, Lisa :)
Jose,
I know that you are a side of Pips mouth and that you feel that you have to come to her rescue whether she is right and wrong. Too bad while your mom and dad was teaching you, they didn't teach you about honor or right and wrong. This is about being honest and upfront. Do you know what that means Jose? Did mom and dad teach that? This is not about disease or pain or anything but honesty. Maybe if you can get someone without bias glasses to reread this thread maybe you will understand it altho I doubt it because I'm sure you wear your bias hearing aids also. I'm sure that you have been taught that you stick up for your friends whether they are right or wrong and I'm sure that you believe that is a good trait. I don't think that way. See, my mom and dad taught me that right is right and wrong is wrong no matter who the person is. You know what the conflict is but yet you still have to make it into something that fits your attack on me. Did mom and dad teach you that also? You absolutely know that it's all about Pip posting at this RHEUMATOID ARTHRITIS forum and constantly talking about how she is being cured with minocin and never letting the members and guests know that she is not curing RHEUMATOID ARTHRITIS with minocin so that many people think that this miracle drug is going to cure them, after all, look at this member of the RHEUMATOID ARTHRITIS forum, she is almost pain free. She swims, runs and hikes and and and and and the only part she conveniently leaves out is that she doesn't have RHEUMATOID ARTHRITIS. GOT IT JOSE?
LEV
Thanks Linncn, I have edited my post as i mis typed it.....my fingers dont work too well sometimesSorry I cant help my self here and i hate to stoop to Lev's level
LEV- I dont ever think your parents taught you human kindness, right from wrong or politeness, I think they have taught you hate and you have an awful big chip on your shoulder. Somebody having their own opinion is in your eyes is wrong, someone who doesnt believe in what you say is wrong, do you know that people who criticise others to the degree that you do are not happy within themselves. You seriously need a hobby, try knitting!
Y'all keep feeding the troll
I dont do the troll thing, i have a troll, it sits on my shelf and i have had it for 39 years, if i was against trolls i would stick pins in it[/QUOTE]
No one is trying to convince you to use it. If you want to strike that off your list of possible treatments, that's really up to you. Seems dumb in a cutting off nose to spite face kind of way, but it's your perogative, and probably no one will even notice.
I don't speak for Pip, but I think the issue with Lev is he posts these long ill-informed posts about how AP doesn't work, when it's obvious to most who use it that it works well. Very well. Anyway, it gets kind of tiresome. I think Lev is mentally unstable and he just likes the attention.
[QUOTE=KatieG]And let me add that I am open to trying AP before biologics if DMARDs don't work. But, uh, this isn't helping. [/QUOTE]
Minocycline is a DMARD.
I agree with pin cushion - why would make a medical decision based on a clash of personalities? You aren't them, they aren't you, your dr. isn't their doctor(s)....
Suzanne2008-09-15 08:44:50 [QUOTE=Suzanne]
Minocycline is a DMARD. [/QUOTE]
Good point, as well.So that would mean if you take Minocycline, MTX and Plaquenil that you are using triple DMARD therapy for RA.....Lynn, that's exactly right, that's what I'm doing right now. I am slowly weaning off mtx (started at 20 mg and am at 7.5 currently---and I feel better than I ever did before minocin). Eventually I will stop taking mtx and then do the same for plaquenil.
I am fairly confident I could just go off mtx and plaq and be okay after the initial herx period, but I didn't want to take any chances of getting damage so I'm doing it this way, and so far it's working great.
I also give credence to the hundreds of testimonies I've read about how AP has worked for them. No it's not scientific, but that many people are probably not lying about it. Especially since none of them have anything to gain by lying.
[QUOTE=Lynn49]So that would mean if you take Minocycline, MTX and Plaquenil that you are using triple DMARD therapy for RA.....[/QUOTE]
Meets the criteria, doesn't it? It's like 'you say po-tay-to, I say po-tah-to', isn't it? I wonder why everybody gets so worked up about it? Whatever works.
I too was able to drop meds after the Rituxan took a foothold...Triple DMARD therapy or Biologic plus DMARD or just one DMARD...Different things work well fo different people. I have no idea why anyone would think that RA is a one size fits all disease.Pinny -
Thanks for posting that link. I hadn't heard that since I found the IPRS and was amazed to find out that we're more RA than the RA peeps - OMG - we're more likely to have a positive CCP - the GOLD STANDARD for RA. So - thanks and HUGS! And a big kiss!
Hi Jose!
The bully got my knickers in a bunch.
Jamie -
I would take you at your word. I just can't take Anna at hers.
As for the 'toxic' - yes, it's very important to me that we answer that question ASAP. Nikkilynn says I use the word 'toxic'. Anna says I use the word toxic. Which is misinformation at best, gossip at worst - because I don't do it. Please do that search and either clear my name - or don't repeat unfounded false information again. From this screen I can't see my 'join' date. I think it was November of '06. I am fairly sure I used that term at least once here - maybe once on AF - definitely once on the IPRS - but received a PM from somebody (Jas???) who suggested as a newbie that I might not want to use that term as it was arguementative and suggested it was offensive. I read that PM a few times and kept coming back to it for a day or so and realized 1) it's true and 2) if AP fails, I'm gonna be on a biologic so... And, most importantly - apparently quite a few of our meds are toxic (rat poison??? botulism??? etc) which I'd been on in the past. Just the rat poison - not the botox. LOL My point, I haven't used that term since that PM - and if I had to guess when that PM came in - I'd say within a month of joining AI. I have also strongly suggested to new APers to not use the term toxic via PM too.
AP does prevent joint damage. Would you like the studies?
I have no problem with those who make educated decisions about their health after study and consideration. What I do have a problem with is 'listen to your doctor, he went to med school' ad nauseam. When an APer suggests getting another doc to help with a decision a person made on which treatment to try - we get that junk thrown at us. Yet, when a traditional med person says 'get a new doc' because of ineptitude, insensitivity or whatnot, those same people don't say a thing and in fact, encourage doctor shopping. What is wrong with that picture? AP and traditional meds should be a choice and encouraged. I have even encouraged people who have decided to maintain with traditionals - I don't like it - but if they're one of our family here I'm going to support their choices. And I'm going to be there for them. Period. Except for Buckeye and Jas - very few others here practice what they preach - even when there are no APers around and somebody is asking about AP.
I do not attack traditional meds people. Find one post ANYWHERE or please, stop repeating Anna and Nikkilynn's misinformation.
Dr. Brown developed AP for RA peeps. Most of the people on the RB are RA peeps. It's only over time that it was discovered that it worked for Lupus, Scleroderma, etc. When I found the Roadback, there were no PRA peeps there and it was like jumping off a cliff. But it worked well because of the nature of my disease - better and faster - than RA. But if the results are the same - what does it matter?
Again, I don't question your diagnosis - you're here, so I assume you have some sort of AI disease, probably RA. Yet we have other peeps here without RA - Micheleb, JSNM (who was leaving because she was MTCD but encouraged to stay - then they figured out she really was RA). They aren't getting this kind of flack. Is it fair to give people flack because of their treatment choice? Thanks to Pinny - I'm more RA than most here. And why is my doctor and my chart being ignored? My doc said PRA, then RA, then back to PRA? I went (a little) CCP positive. Where is the honesty, the fairness, the Chrisitianity in all this?
Yes, I intend to promote PRA as I truly believe we're the key to curing AI diseases. All of them. I'll start with Mayo - LOL - again, thanks to Pinny.
PS - the 'not so' fat behind was an attempt at humor to undo the previous 'fat behind' comment. I'm under the impression Anna has a fat behind. :-)
Lev -
I don't run or hike - icky exercises. I ice skate and boogie board and am going to learn surfing.
Countdown to Christmas - 100 days - cluck cluck!
Pip
Lynn49 - I have no idea why anyone would think that RA is a one size fits all disease
Because of my success rate. Jamie perused the IPRS. What she didn't see is that I have about an 85% Minocin success rate with PRA peeps and about a 70% success rate for RA peeps. I have no Lupus or Scleroderma people - yet.
I can't force people to continue and keep going, but the ones that did - got to a pain free existance and got their life back.
And these rates are waaaaay more than what the studies suggest. I'm almost double the biologic study results for RA and waaaay over double for PRA. And I'm just one (non-medical) person.
So, if my people are getting these kinds of results - it would seem to suggest a common cause - infectious in nature.
My opinion.
Pip
Edited to get some of the text out of the box - what did I do wrong? And again. 3rd edit - Had to dump the box - anybody know what I did?
Pip!2008-09-15 09:30:11[QUOTE=Pip!]Lynn49 - I have no idea why anyone would think that RA is a one size fits all disease
Because of my success rate. Jamie perused the IPRS. What she didn't see is that I have about an 85% Minocin success rate with PRA peeps and about a 70% success rate for RA peeps. I have no Lupus or Scleroderma people - yet.
I can't force people to continue and keep going, but the ones that did - got to a pain free existance and got their life back.
And these rates are waaaaay more than what the studies suggest. I'm almost double the biologic study results for RA and waaaay over double for PRA. And I'm just one (non-medical) person.
So, if my people are getting these kinds of results - it would seem to suggest a common cause - infectious in nature.
My opinion.
Pip
Edited to get some of the text out of the box - what did I do wrong? And again. 3rd edit - Had to dump the box - anybody know what I did?
[/QUOTE]
Except for the fact that I and many other people don't fit into the "infectious in nature" box....I don't understand why your way is the only successful way. I'm having great success with Rituxan and I have no reason to think that it won't continue. According to the research, the results get even better with the second set of infusions...
"Hate is Hate" no matter what side of the fence you sit on,......
Pip,
This whole thread is so counterproductive to SUPPORT forums
[QUOTE=Lynn49]I too was able to drop meds after the Rituxan took a foothold...Triple DMARD therapy or Biologic plus DMARD or just one DMARD...Different things work well fo different people. I have no idea why anyone would think that RA is a one size fits all disease.[/QUOTE]
But isn't Rituxan a long way off for most posters? It's the top of the ladder for now, as I understand it. Discussion of mino as a possible DMARD seems like it would be something that a lot of posters could consider, especially newbies. What is wrong with talking about it? I know your good experience is very helpful for people who have reached the point of considering Rituxan, but I often wonder why you end up on nearly every mino thread, when you have never been on it. As you say, different things work for different people.
Because my name keeps getting brought up......... [QUOTE=Lynn49] Except for the fact that I and many other people don't fit into the "infectious in nature" box....I don't understand why your way is the only successful way. I'm having great success with Rituxan and I have no reason to think that it won't continue. According to the research, the results get even better with the second set of infusions...[/QUOTE]
No one knows what causes RA, so you have no way of knowing wether your (or anyone else's) RA is infectious by nature or not, especially if the theories put forward by Dr. Brown and others are correct (and most subsequent research on the nature of mycoplasmas show they might be).
Even if you have a lot of RA in your family it might be congenital infection, or a common gene which makes you more suseptible to infection.
No one knows. And there has been some research that B-cell inhibitors may be a earlier choice, noy just for people who fail multiple TNF's and DMARDs..............
Lynn492008-09-15 09:52:49[QUOTE=Gimpy-a-gogo] [QUOTE=Lynn49] Except for the fact that I and many other people don't fit into the "infectious in nature" box....I don't understand why your way is the only successful way. I'm having great success with Rituxan and I have no reason to think that it won't continue. According to the research, the results get even better with the second set of infusions...
[/QUOTE]
No one knows what causes RA, so you have no way of knowing wether your (or anyone else's) RA is infectious by nature or not, especially if the theories put forward by Dr. Brown and others are correct (and most subsequent research on the nature of mycoplasmas show they might be).
Even if you have a lot of RA in your family it might be congenital infection, or a common gene which makes you more suseptible to infection.
No one knows. [/QUOTE]
Exactly................
Then how do you know yours and others RA isn't in the "infectious by nature box", as you put it?How do you know it isn't ? It's a conundrum...............I remain, as always, skeptical.
Lynn - who paid for that study? The cool thing about the Mino studies is that Pharma is not funding the research - heck the companies wouldn't even donate the med for study and the schools etc end up paying for it.
Pip[/QUOTE]
No one is trying to convince you to use it. If you want to strike that off your list of possible treatments, that's really up to you. Seems dumb in a cutting off nose to spite face kind of way, but it's your perogative, and probably no one will even notice.
I don't speak for Pip, but I think the issue with Lev is he posts these long ill-informed posts about how AP doesn't work, when it's obvious to most who use it that it works well. Very well. Anyway, it gets kind of tiresome. I think Lev is mentally unstable and he just likes the attention.
[/QUOTE]
AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHH. No, this is just it. I am not dumb, because I have NOT EVEN GOTTEN AROUND TO CONSIDERING AP. But everyone who advocates tends to get a little mean & hostile if you even say "I haven't gotten around to considering it yet." I have not mentioned it to my doctor. He has not mentioned it to me. I have been too overwhelmed to question what he is doing too much, since he is the one that went to medical school. And, guess what, he does not know what causes RA, or a way that is always best to treat it, and he's honest about that. He may even be a big AP supporter, I dunno!
The issue i was trying to raise (and what I should have said) is that Lev is Lev, and it's clear