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I'm fairly new to this – I haven't even been formally diagnosed yet so I'm doing all my research and trying to find out as much as possible about RA and its treatments.
I'm just so confused about treatment protocol. I've read a lot of good stories about AP. I've also read a lot of information of doctors, etc saying it doesn't work, and if it does, not for long. Eventually you'll end up on the hard-core RA drugs.
Can you truly go into full remission on an AP treatment and live symptom-free? Thanks
A very simple take on the negatives you hear is that there is no phamaceutical backing for A.P. Our system is run by big pharma- A.P. is not held by Merck or the others. Doctors make money on the prescriptions they write if they have a deal with a pharma co. No one's got incentive to encourage A.P…. except the patient!! You can go to a Rheumatologist and get A.P. or you can go to a PCP and get A.P. It can be ordered for a dollar a pill (namebrand) from Canada… See?
No money to be made.
Jenn
Orchid:
In my opinion you cannot adequately understand the AP treatment for RA without reading the book, The New Arthritis Breakthrough, By Henry Scammell. You may need to read it more than once, there is alot of information. Also, read through the information on the Road Back Foundation website. There are several articles that provide a good rationale for why this treatment is controversial. The book does it best. Once you understand the history that western medicine has taken over the past century, it will make more sense, not complete sense, but some!
If you go to the RBF website, under the heading “Education” you will find the tab “Articles”. Here is a link to one of my favorites that attempts to explain why AP is not yet fully excepted by the mainstream rheumatology community. This is just one theory. There are others. https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/141.html
Good luck in gathering the information that you need to make your personal decision.
Cheryl
Orchid,
Good for you on looking at your options before seeing a doctor!
I asked my “second opinion” rheumatologist why there isn't more research happening with minocin and AP and he verified that there is no money to be made by pharmaceuticals with an older medication.
The biggest difference for me was whether I wanted to believe the rheumatology story: The American College of Rheumatologoy doesn't know what causes these diseases and their medicines slow the degenerative process down while shutting down the immune system.”
OR
AP philosophy in a nutshell: There is a bacterial cause to this disease and the root cause must be addressed.
I've seen two AP doctors. The first said AP works for some but not everybody and it takes at least 6 months to see if it will work. The second AP doctor is absolutely convinced it's a bacterial infection and it must be treated as such. He said he had an 80% success rate. (Dr. S in IA)
In addition to reading the terrific book Cheryl mentioned, you can read bacteriality.com which includes information about L-forms and prions. The latest “proof” of the bacterial cause.
It's a tough decision, but you are obviously very proactive in your own health and information is key.
Good luck!
Michele
Thank you for your quick replies! I'm new to all of this and it's a little overwhelming. I already have a thyroid issue and a neck injury (which is getting better slowly) so I think the stress of all that led to this, potential RA diagnosis.
I'm very much into natural medicine and my sister is as well (she lives in CA and has access to lots of great doctors) and she is the one who told me about minocin for treating RA. My dad has it, she has it and now I might.
It's pretty scaring and overwhelming and I just want to be certain I'm treating it properly right from the start. I was treated incorrectly for my thyroid issue years ago and I still don't have a handle on it, completely, so I thank you all for your good advice! You really do need to be your own health advocate!
Question – why do the doctors who back AP believe it's only 80% effective? Is it because people didn't start the treatment early enough after onset or is there a different reason?
Thanks!
well 80% is a fantastic success rate anyway. I think someone said remicade was 8%? However, apart from that, I think one of the issues is that AP is not a one size fits all treatment. It does take time and patience – sometimes- to find the regime that suits the individual. Time and patience with tweaking a protocol on an individual basis is not something most docs are willing do. And there may be a few other issues in play also…..such as gut permeability, after taking years of pain medication etc. There's some good info in the piece on non-responders I posted the other day, extract from the Harold Clark book. Link is below. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I think it is more complicated than just saying “big pharma” keeps AP under the rug because there is no profit. After all, Wyeth, the company that makes Minocin, is the ninth largest pharmacutical company in the world, according to 2004 – 2006 sales data. It doesn't make sense to say Wyeth would not want consumers taking two of their Minocin pills every day for years. That is exactly what pharmacutical companies want to happen.
I think a good analogy is the ulcer story. Even though Barry Marshall proved that ulcers were caused by pathogens and even won the Nobel prize for his work, I would guess that if you polled most doctors in the U.S. the majority would not be aware of his work or would dismiss it. It takes years for cutting edge research like Marshall's to reach the mainstream.
Also, doctors do not directly make any money off prescriptions they write. They may indirectly make money if they own stock in the company that makes the drugs, or accept gifts from the pharmacutical reps, but they do not get a “cut” from every prescription they write.
Rheumatologists are aware of the research. The results of the double blind studies on AP do validate the treatment, but most of the studies were done by allowing the participants to remain on their previous DMARD. And the results showed AP helped most in mild to moderate cases. Not to mention no study has ever shown that AP slows or stops radiographic joint damage.
The nature of RA itself is another reason, in my opinion. Why is it so severe in some, but mild and limited to a single joint in others? Why are females three times more likely to contract it than men? Why does it naturally remit in some patients but not others? As of now, there are too many questions to make ANY treatment the gold standard.
I think the science needs to catch up with the anecdotal evidence before AP will ever be mainstream. Once they can cleary identify and culture the pathogen consistently from every RA patient and the mechanism behind RA (and explain why nearly 50% of the population has these pathogens but does not have RA) then we may see a shift away from the auto-immune theory. Until then, AP will remain an “alternative” treatment that ranks low on the rheumatology totem poll.
Just my opinion, take it for what it's worth!
[user=515]orchid[/user] wrote:
Question – why do the doctors who back AP believe it's only 80% effective? Is it because people didn't start the treatment early enough after onset or is there a different reason?
Thanks!
Well first of all, what doctor would say such a controversial treatment is more than 80% effective? LOL
Then, I believe the real answer is that these disease conditions vary greatly. Then you have the factor of how soon treatment is initiated. Then add in patient compliance (Jess and I are very non compiant patients, she just informed me that she has not taken her Mino in over two weeks, NOT GOOD!) Then there can be other factors, diet, thyroid, and more. It is not clear cut. The doctor that Jess and I see states publically on his website that he see an 80% rate of recovery. I beleive that means full recovery.
Hope this explanation helps.
Cheryl
Hi Orchid,
Much of the resistance to the use of minocycline comes from lack of experience in using mino, seen more in the light of a disease-modifying agent rather than as a longterm, efficacious approach to treating an infectious cause. As an anti-inflammatory, it certainly isn't as immediately effective as prednisone in reducing inflammation or masking disease symptoms as some of the more commonly used DMARDs, but this is largely missing the point. Minocycline is not intended to mask the disease, but to get at the infectious root of it. However, the current rheumatological treatment paradigm still views rheumatoid disease as a metabolic disorder, an immune system gone haywire that needs suppression, rather than an infection….and where possible worsening (due to the herx reaction) may occur before improvement is seen. Bascially, if you're a rheumy and you try minocycline therapy on a patient with RA and, in the first few months, they worsen, it's likely that you will view the therapy as ineffective. Further, if a patient can't wait for improvements to occur and has little understanding of infectious causes for rheumatoid disease, they will insist on a different treatment.
The historical perspective of the snowballing resistance in the field of rheumatology to antibiotic therapy is covered very comprehensively in “The New Arthritis Breakthrough.” In short, infectious causes for rheumatoid disease were all the rage in the early 1900s and most research was centered in this area of study. Then, with the advent of cortisone, heralded as a “miracle cure,” came the new perspective that rheumatoid disease or any “autoimmune” dysfunction had to be a metabolic disorder, a malfunction of normal body functioning, rather than an infection. Afterall, within days of starting cortisone treatment, patients were making remarkable turnarounds and, when the drug was removed, they worsened again. From this point on, even when cortisone had been exposed as not being the miracle cure that had been hoped, its longterm use causing severe and, in some instances, irreversible damage, the stage had already been set that medicine was dealing with a metabolic disorder that needed dampening. At this point, researchers into infectious causes were not getting the previous attention they'd enjoyed, funding for studies were dropped and infectious theory advocates, like Dr Brown, were ridiculed as quacks. The “metabolic disorder” band wagon only seemed to gather more and more momentum as the decades of the latter part of the 1900s passed, with most of the attention to research focused on the research and development of drugs aimed at blocking the immune response.
Today, the research and development of new drugs is a multi-billion dollar business and the average rheumy isn't looking for infectious causes, but ways to suppress an over-reactive, errant immune system. In effect, they've become “drug managers” rather more than disease diagnosticians, because even if one gets a diagnosis of RA or PsA or Scleroderma, it's more about determining prognosis, degree of disease activity and forecasting how a disease will inevitably progress. Therefore the goal is determining how best to suppress disease progression rather than seeking a cure….and many of the drugs used for one rheumatoid disease will be used in others, anyway.
The politics surrounding infectious causes for rheumatoid disease runs deep. If you want to learn more, highly recommend reading “The New Arthritis Breakthrough,” which offers a very broad perspective on this whole subject.
Yes, people do reach remission and become symptom-free on AP, as evidenced by all the testimonials on the main website and the many people here who are improving as time passes, finding their symptoms are slowly, but surely reversing. I'm one of those people, starting out with very severe, swift onset RA 20 months ago and now experiencing greatly improved days where I'm functioning at about 90 or 95%. I still have my herx days in between, but I'll take that over managing the possible consequences of some of the heavy-hitter RA drugs.
Choosing AP can be a difficult decision to make. It's not given much credence by doctors we feel we must trust, we largely must rely on 'word of mouth' from other patients (if we're not fortunate to have a knowledgabe AP physician) knowing full well that everyone will be unique in response to the treatment, and it's a longterm therapy that takes patience and a skilled AP clinician to manage our progress….and these doctors can be thin on the ground. Dr Brown says in the book, though, that there's a bit of the “maverick” in those who choose AP. From this statement, I inferred that he meant that these types of people were the types who wanted to self-advocate in their treatment, to do the research and seek out a treatment that fell within their own comfort zone, rather than relying soley on conventional wisdom.
Hope this helps some, Orchid…
Peace, Maz
I agree with Cheryl, The New Arthritis Breakthrough by Scammell helps to explain the disconnect. Jenn is correct insofar as all of us tend to believe in things that put food on the table and many if not all doctors turn out to be very human indeed when you lift their lids and peer inside. Heck some of my best friends are physicians.;)
As Brown related it, when the steroids were discovered and prednisone was invented it caused a huge paradigm shift for the physicians. With these powerful immune suppressing drugs they finally had a treatment that actually brought immediate relief to their suffering patients. Imagine their relief at finally being able to perform their job. So around that time they concluded that the rheumatic diseases and anything else that prednisone relieved was actually an Autoimmune Disease. Before that time they were strongly suspecting a bacterial etiology, as before that time bacteria and antibiotics were the latest and greatest fashion trends in medicine. The problem as we all know is that the benefits of prednisone don't last and the side-effects become intolerable. So given that the ACR had already concluded that rheumatic diseases were autoimmune reactions then now they had to search for ever better and more specific immune suppression drugs with tolerable side-effects. Joe M would say they have pretty good facsimiles in the new designer biological drugs such as Remicade and Humira. Others of us aren't so convinced given our conviction that the disease is really microbial. But we will leave that for the moment. In terms of human nature, the antibiotics take months to effect remission and we often get worse before we get better, the herxheimer response. The immuno-suppressing drugs tend to bring relief right away, though it often doesn't last. But when a frightened RA patient comes to you for treatment would you prefer to offer a therapy that takes months and makes you feel worse at first or a therapy that works while the patient is still in your office (with their checkbook)? With the attention span of a physician with all of their 10 minute appointments, which therapy would be easier for them to believe in?
The truth is that when all your medical training said that these diseases are a run-away, self-inflicted, self-destructive immune response to own cells, then treatment with antibiotics just doesn't make sense. The double blind MIRA study proved that it works despite some questionable experimental design that deliberately departed from Brown's clinical successful therapy; it still worked. So the ACR reluctantly lists Minocycline as an approved therapy for RA. But as I said, antibiotics don't fit well into their theory about why we are sick so they don't feel comfortable with it. Minocycline does indeed have some immuno-suppressive properties and some of these docs who do recognize that it works believe it is by that mechanism. That is small comfort since they think they have much better immune-suppressing drugs than an accidental property of a few antibiotics. Those other drugs, particularly the biologicals are incidentally much more lucrative for the doc. So if the doc was on the cusp that extra financial incentive probably doesn't hurt. I doubt very much if there is a pharma conspiricy and if there was it probably won't help to challenge it. I think it is more of a human nature thing.
-john
Orchid,
I have the rare good fortune of a rheumatologist who is absolutely convinced that pathogens are behind RA. She tests for them and has found plenty in me.
One of the first things she said to me was “When you are this sick, it is never just one thing.” That fact is why research has such a hard time penning down the cause and establishing the cure. You don't have just one cause to your illness. You have a multitude of causes that converged just right to give you this disease. And we all are unique in our “causes”.
Another thing she said “In my practice I have learned that until we heal the gut, it is no use going after the pathogen”. Leaky gut is very common among people with auto-immune disorders. Most doctors haven't a clue about leaky gut or nutrition. They only know drugs.
There is a reason/s for your RA. Obviously, genetics is part of your picture but it is not the only reason. Genetics make you suseptable, but they are not a guarantee. You can still get well.
Good for you in finding AP.
How do we know genetics makes us susceptable? Because there is a weak family aggregation for any one of these diseases. But that would also suggest weak microbial infection equally well. And if we consider all auto-immune diseases as possibly bacterially sourced then there is strong family aggregation. That would strongly suggest microbial infection as well.
The gut is hugely populated with macrophages, our first line of white cell immune deffense. It makes sense that the body would station many of these soldiers in the gut. But Mycobacteria, CWD Bacteria and Mycoplasmas are well known to parasitize these cells. Just about every one of us with one of these diseases has digestive problems. I had constipation and an ever increasing list of food intolerances. That seems to fit well with the CWD bacterial infection. I'm also happy to say that my gut works well these days, cured along with my RA by antibiotics, AP and MP protocols. And I can eat foods now that I had to give up years before my RA diagnosis and even though I still take antibiotics I don't need probiotics any more; not for about 2 years now. So whether it was leaky or paralized or whatever, my gut has healed right alongside my arthritis.
How do we know genetics makes us susceptable? Because there is a weak family aggregation for any one of these diseases. But that would also suggest weak microbial infection equally well. And if we consider all auto-immune diseases as possibly bacterially sourced then there is strong family aggregation. That would strongly suggest microbial infection as well.
John, shouldn't they be able to tell the difference between genetic issues and infectious ones based on factors using twin studies and families that are apart? For example, my half-sis has MS, but we never lived in the same state, much less the same house. Did we get infected by our common parent, in our case our father? Can't they control for those factors? Don't they, or is it just too difficult to tell?
Joe, you mentioned that mycos are in about 50% of the population. That doesn't mean they are not the cause of disease. About 30% of the population has the genetics for Celiac, but most by far never get that dianosis? And the same is true to some degree for a lot of other diseases. Those type of stats definitely don't tell the whole story! I've said this before; acne looks to be both genetic and bacterial, the two are not mutually exclusive! Why do we keep assuming the theory must be one or the other?
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