Does anyone firmly disagree with AP? | Arthritis Information

 

This is just personal research to be well informed.  Does anyone really disagree with AP and why.  I'm really looking for informed opinions here as I would like to be as educated as possible.  Thanks.The thing I would suggest is to go to medline and do searches.  Get away from message boards and roadback.org.  Get a well rounded view point of AP.  AP can be very helpful to people.  Others have not found it quite as successful.  Anectdotes only show the side of the positive.  Now some will tell you the studies are biased but those are what we have to work with.  Make up your mind based on your own independent research not on stories others have told youOh you don't have to worry about that buckeye.  I have done x amount of research.  I really do want peoples experiences, personal opinions.  I'm as strong willed as they come. 

I tire of the overly scientific sites as well. I agree with Buckeye to look up your own medical studies (there have been MANY showing the efficacy of AP) but I disagree that all anecdotal stories are positive. There are also many negative anecdotal stories. Like with all RA therapies, it works for some and not for others.Okay-never mind.  I really just wanted to know why someone would strongly disagree with AP.  I'll never understand why we can't just let people have their own opinions.  I'm not the least bit offended that someone would choose a different path than me, and so was just interested how someone could flat out, equivocally agree/disagree with the different sides.  Thanks.I haven't tried it but I can't disagree with it.  If people say it's working for them who am I to say it isn't?  I think the dispute lies with why it works and how well it works and who it might work for.  I will say this~it's not off the table for me.  I could imagine a scenario where I would give it a try.I have never understood why people get so up in arms on the AP issue.  It is not something I have personally tried, but it is also not something I would not consider trying.  I mean, we all try different meds all the time (be it MTX, Enbrel, Humeria, Ap, etc).  Why does AP always create such controversy??  It is shown time and time again that not all meds work for everyone....I know from personal experience that I have med changes all the time to try and find something that 'works'.  If AP is working for someone, i think that is great!  Just like if MTX is working for someone, I think that is great too.  It is really all about finding the right meds that work for each case.  Which ones they are shouldn't be an issue.  I think it was Linc in another thread that said something about 'I'd eat dung beetles if I thought they would work' (probably not an exact quote there, but something to that affect).  If it works, that is all that really matters.Tenderjoints-FUNNY! Haha I'm with Link! Oh come on Katie, [QUOTE=anna_uk]Seeing how badly she did on it, and particularly how passionate she was about staying on it even when she was in a flare from hell that lasted months (people on AP call that herxing) I'm afraid that isn't something I'm prepared to try.

[/QUOTE] Anna-that's exactly the kind of info i was interested in.  It's very interesting.  You see that's the first "personal" story that I've gotten to see on that end.  I'm interested in both sides of the debate.  It's important to stay open to ideas and be informed. [QUOTE=TheLa] You see that's the first "personal" story that I've gotten to see on that end.  [/QUOTE] LA,
Also the symptoms of a "herx" are acute pain and inflammation.... There is no difference between it and a flare.   If you are doing AP, you have to assume because you are "flaring" or "herxing" that your body is healing itself, so the APers who are herxing think it is a positive thing.   My friend in particular, hung in there for much too long and should have given up months before she did....
Anna
Actually, while they may share the same outward symptoms, a herx and flare are two distinct phenomenon. A flare is a worsening of disease activity, thereby causing the patient to get WORSE while a Jarusch Herxheimer reaction is a temporary worsening of symptoms caused by bacterial die-off, thereby cause by the patient to get BETTER.

From Dr Brown's original protocol:

The Herxheimer (drug related flare) (toc)

A general aggravation of symptoms is sometimes seen following onset of therapy and is more likely to occur if the disease is severe. This flare may be subjective (invisible) or objective (visible), or both, and may occur several hours or even up to two to four weeks after the medication is started.

Those patients who test low in hematocrit and serum albumin levels and high globulin levels prior to treatment have the most intense flare on a given dosage of antibiotic.

The Herxheimer flare is the first indication that the antibiotic is reaching its target, and therefore considered a good sign.

When the severity of the arthritic condition begins to lessen, either from a spontaneous improvement or as a result of the continued treatment with carefully measured doses of antibiotic, a greater tolerance for the antibiotic is noticed and larger doses are tolerated without a return of the Herxheimer flare reaction. If however, the dose has been increased too rapidly at any time, the initial flare reaction may occur again.

In the evaluation of these exacerbations, the physician must remain aware of the frequent disease flares from other causes, and he should attempt to differentiate from those which may be drug induced.

Differentiating between a Herxheimer, an RA flare and an allergic reaction to the drug -

Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication.

1. WBC will elevate in a Herxheimer and lower in a flare.
2. A Herxheimer will also exhibit a coincidental elevation of SED rate, gamma globulin and total globulin, and a fall in serum albumin and hematocrit. Patients who exhibit this flare reaction accompanied by anemia, depression of serum albumin, elevated total globulin and gamma globulin are probably reflecting a more intense reaction pattern to anti-L substances than in hematologically mild cases.
3. A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.

Unfortunately, unless you are closely monitored it is often difficult to differentiate between a herx and a flare, although many people who use AP are eventually able to detect patterns associated with dosing and are therefore able to guess quite accurately which one they are experiencing.

Gimpy-a-gogo2008-03-08 14:56:55I'm one of those people who have not tried AP but would certainly consider it if the "approved" medications proved too dangerous for my comfort level or were just not doing the job.  Different regimines work for different people.  I'm reminded of how many times a drug that was approved for one illness was later prescribed for something totally different because several people found it was curing or controlling other unrelated symptoms. Plaquenil is but one example.   It was some flexibility in the medical community that allowed that drug to be used for something other than its original intent.  If the researchers/doctors said, "This is not for XXX, it's for YYY, therefore it has no value in the treatment of XXX regardless of what we are seeing in our patients" then we would have missed out on so many valuable therapies.  So it makes me wonder why some doctors (my own included) does not consider AP a valid therapy.  It obviously works for some, so why so much resistance?  Jesse882008-03-08 15:42:59 It's interesting you should ask that Jesse. There's actually a book written which focusses on that very question, called "Why Arthritis"

This topic is also briefly touched upon in The New Arthritis Breakthrough. It all started in the 50's when Dr Brown had a big AP breakthrough the same year the effects of cortisone on arthritis were discovered (cortisone, or as we know it "prednisone" was initially thought to be a "cure" for arthritis the same way insulin is a "cure" for diabetes). Medical politcal mayhem ensued, AP lost, and since then there has been an institutionalised rejection of The Infection Connection. However, this is being slowly overcome. Even my own RD admitted to me she had once strongly opposed AP but after seeing patients do well on it has become a lot more open minded.

A quote from a review of The Infection Connection:
The medical establishment, as Poehlmann points out, has been slow to embrace this theory for a number of reasons, not the least of which is simply an inability to accept new ideas that go against the conventional wisdom. The germ theory of disease was thought some decades ago to have nearly exhausted its potential as medical theorists looked to the environment and a malfunctioning immune system as causing chronic illnesses. But the germ theory of disease is back stronger than ever, and a revolution in the way we think about chronic disease is taking hold. Gimpy-a-gogo2008-03-08 16:02:43I don't firmly disagree with any path that anyone trys. I firmly disagree with those that want us to believe that there is this world wide conspiracy involving the whole medical profession, scientists, biologists, doctors, universities, world health centers and every other thing under the heavens keeping the world and the sufferers of this terrible disease called rheumatoid arthritis from a miracle drug called minocin. I firmly disagree with those that constantly try to make us believe that doctors and medical professionals are all crooks, corrupted by big pharm and that they would sell out our well being for a few dollars and take the chance of ruining their careers in the "bargain". I firmly disagree with a group of non-professionals trying to convince us that they are smarter than our "real" medical professionals. I firmly disagree with those that make statements that even the director of roadback won't make. I firmly disagree with those that tell others to just "give it time" "it's herxing not joint erosion." Arthritic joint pain and inflammation equals joint damage and bone erosion, joint damage and erosion that cannot be rebuilt. I firmly believe that minocin does help with some types of arthritis. As I stated previosly my rheumatoligist from the UofM, Dr. Richardson said that minocin is effective against minor ra and is equal to plaquinil but is not effective against moderate to severe RA. I firmly believe that it is better to trust those that have gone to real medical schools rather than those that teach themselves on internet search schools. Here is a debate from days gone by: Everyone has varying body chemistries.  What works for one, maybe not work at all for another. Amen Happpy Nes - I believe that everyone is different and what works for one may or may not work for another. I tried AP for four months and I had flares, herxes, or whatever you want to call them. RA moved to my hips, my shoulders, my wrist, and I wasn't prepared to mess around to see if this was a herx or a flare. I moved on to humira. I tried all the drugs, was allergic to several, and some didn't work. Plaquenil didn't work, and humira didn't either. I am now on enbrel and feel so much better. I still have flareups in bad weather but my stiffness in the morning is gone, and my energy is back! To each their own, Also, I was dx with mod-severe ra. I hope you all find your right combo and I believe that works great for one may not for another. OOPS repeating self. LOL My 2 cents on AP. It wasn't a quick fix, it took TWO years for me to achieve remission but well worth it in the long run.  Although, it was two years of two steps forward, one step back.  We are all very brave to live with RA!  I know someone who is on Minocycline and her case of RA is in no way mild! She is more comfortable and able to function so much better than when she was on the harsher med's. Her Dr's told her that one of the problem with people who take the Minocycline is that it takes up to 2 or 3 months before you start to really benefit from the drug. Most people want immediate relief and don't give it the time needed to feel relief.

I got off the mtx. and biologic's and even the anti-inflammatories because of the side effects. I was treated for 9 moths for TB, had 2 heart attacks and I still have nodules on my voice box that the MTX caused and my voice is very deep, Chronic Bronchitis and the med's ate the lining of my stomach and I had to have surgery for ruptured blood vessels. When I came down with staph and another surgery for that, I gave up. I decided to get off the med's altogether.

I was lucky, I was in a remission and it lasted for over 2 years. In the last year, the pain has returned and so has all the swelling. I'm back on the anti-inflammatories and have talked to my Dr.(PCP) about the Minocycline. When I'm ready, he will let me try it.

I'm terrified of all these drugs but the Minocycline is the least of my worries. I think I'd rather be in a wheel chair than to ever go back on the harsher drugs and feel that bad again. It was a terrible time for me.

My RD won't see me till I'm ready to go back on the harsh drugs. I think that sucks that after all those years, he won't even try another route.   Regardless of what others say, the drug companies do have a big part of what we take. I worked for Dr's for years and don't for a minute think they don't get kick backs in one way or another. I couldn't count on both hands and feet how many trips, luncheon's and banquet's I attended at the cost of the pharmaceutical companies. The more we prescribed their drugs, the more gifts we were given. It was the same way in all practices that I worked in; 1 was a neurologist, 1 was a neuro surgeon and the other was an OB/GYN. In 2 of those jobs, I was the office manager. Dr's aren't the saint's so many think they are and it's OK to expect results from these drugs. Especially those that are so expensive.

I'll get back with you if and when I decide to go back on med's and will try to get my friend to come over here and post about her experience. It's all positive!!

Love and God Bless,
Vicki

Interesting thread.  My RA story starts with a severe onset of RA.  I was bedridden till Prednisone got me up and moving.  My RD started me on AP therapy and I was on it for 6 months with no change other than a worsening of the RA symptoms.  Because damage was evident on xray and mri I was switched to a dmard and eventually a biologic.  Ten years later I'm in clinical remission from Humira, MXT, Sulfa.  LindyLindy - glad your OK now.  You know I think the 6 months is a long time, most people see some sign it's working before then.  Pip, believe me I gave it my all........I really wanted it to work because I didn't want to move on to dmards and biologics.  Would I start AP again?  I might, who knows what the future holds for any of us.  Are you still on Protonix?  I finally stopped and haven't had any problems with my tummy.  I've taken 2 Tums one time and that's it.  I'm so happy to be off it.  Down one more drug.  Lindy I think if someone wants to disagree with the "conspiracy" regarding AP they would have a lot more credibility if they'd actually read any of the books or even had some information about it. It's not so much everybody getting together and deciding to "shut out" AP from the lexicon of treatments, it was more a series of events that resulted in an institutionalised rejection. I dont personally use AP therapy but have suggested it to my mother for her pustular psoriasis and PA  as she has a badly damaged liver and cannot take the other medication. She has suggested it to her dermatologist but has yet to see a rheumy which she said will mention it to them.Lin - Danm - accidentally hit post.
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