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thanks Maz for your answer,
So far, my personel idea (but I am no scientist or a doctor at all) is that RA:
a) common end-point for many different causes (bacteria, alergic, etc.)
or/and
b) is caused by pathogen not yet found/identified/disoveredI will probably try approach decsribed here – http://arthritistrust.org/wp-content/uploads/2013/03/Wyburn-Mason-Treatment-for-Rheumatoid-Disease.pdf – however, I have once read that web page arthritistrust.org is dangerous, because it fools people and keep them away from normal treatment (NSAID and DMARD). Nevertheless, I am full of hope… now or never…
In meantime, I will try to find “The New Arthritis Breakthrough, by Henry Scammell” somewhere in Europe.
March 2016:
31 y.o. male, Poland, Europe.
Diagnosed with RA (started as palindromic rheumatism) at age 28 (SED negative, RF negative, CRP negative, Lyme negative, Chlamydia negative, ANA highly positive, aCCP/ACPA higly positive.
Treated with sulfasalazine - no success. Chloroquine - no success. NSAID - no success.
Treated with MTX injections (10mg->15mg->20mg->15mg->12,5mg->10mg->5mg) for 2years. Almost total remission. 3 months after MTX quit - got RA again with trippled strength.Hi Maciej,
You should be able to download a digital copy of the book on Amazon.com, if that helps:
There is also the CPN Help antibiotic protocols for the treatment of chlamydia-induced autoimmunity that Includes the nitoimidazoles (anti-amoebic/protozoan) in combo with a tetracycline and macrolide:
http://cpnhelp.org/treatment_protocols
I think it’s really critical to become as educated as one can possibly be in order to make a fully informed decision about following this treatment path. It is a very slow therapy with no overnight miracles. There is no claim of cure, but remission is very possible. I hope this helps, Maciej, in your decision process and we’re all here to offer peer support if you do choose this treatment.
Maciej,
Have you been on any diet? What does it mean that you had “healthy diet”?
MTX worked for me at the beginning, then stopped working and I felt much worse plus my immune system was much weaker.
Linda LRA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousThanks Maz for additional info… however I feel quite overwhelmed by the amount of data/info (sometimes mutually exclusive 🙁 )
Linda L:
Healthy diet I mean pretty normal… balanced… raw salads, vegetables, but also potatoes, pork, beef, fish, fruits. It’s not extremely healthy, but it is not “McDonalds + sugar” all the time either.BTW: what keep me thinking that I have bacteria/infection related RA is that I had throat inflamation every almost every week (like 3-4days inflamed – rest of the week fine) since several months.
What is more: if RA is infection, then MTX (and other immuno suppresive drugs) will make it even wors in long time period… that’s quite obvious (but this is just my personal opinion).
March 2016:
31 y.o. male, Poland, Europe.
Diagnosed with RA (started as palindromic rheumatism) at age 28 (SED negative, RF negative, CRP negative, Lyme negative, Chlamydia negative, ANA highly positive, aCCP/ACPA higly positive.
Treated with sulfasalazine - no success. Chloroquine - no success. NSAID - no success.
Treated with MTX injections (10mg->15mg->20mg->15mg->12,5mg->10mg->5mg) for 2years. Almost total remission. 3 months after MTX quit - got RA again with trippled strength.Thanks Maz for additional info… however I feel quite overwhelmed by the amount of data/info (sometimes mutually exclusive )
No worries, Maciej. It feels overwhelming for us all when we begin, which is why the community forum is here, so we can support one another. It’s a lot of info to read, digest and then to make decisions about. The best resource for AP is The New Arthritis Breakthrough (link above) as it will explain the rationale for the treatment with some guidelines for approaching treatment. Lots of remission stories to read, too. I think I read this book 5 or 6 times in my first year and each time I read it I learned something new. Very lay-person friendly. I added the CPNHelp website for you, because some people like to take a more comprehensive approach to treatment, adding an antibiotic to hit parasites (e.g. flagyl or tinidazole), like you’re leaning towards, as well as a tetracycline (e.g. doxycycline or minocycline) to hit the cell wall deficient microbes, and also a macrolide antibiotic (e.g. azithromycin or clarithromycin) to pack a second punch as a broad spectrum anti-microbial, which also helps to prevent antibiotic resistance when taken in combination with the others.
Each class of antibiotic has a different action on bugs and some are compatible for use with others while others may produce nasty drug interactions. You would need to stay away from all alcohol while on a nitroimidazole, like flagyl or tinidazole, due to a disulfiram-like reaction (meaning it can cause nausea, vomiting, flushing of the skin, tachycardia, and shortness of breath). When I was taking tinidazole, even using skin products with alcohol in them could cause facial flushing. So, you have to become a label reader, avoiding anything, even cold medicines or mouth wash, that might include alcohol.
What is more: if RA is infection, then MTX (and other immuno suppresive drugs) will make it even wors in long time period… that’s quite obvious (but this is just my personal opinion).
You are correct in this rationale, Maciej, and it’s what Dr. Brown also believed. In fact, there is a growing body of researchers who also believe that autoimmunity is the result of disturbances in the human microbiome. Our own cells, afterall, are outnumbered by bugs in a ratio of 1:10 and you could say we’re actually more bug than human! Ugh…awful thought, eh? LOL
You would need to register to read the full article, but here is a link to a some research being conducted at NYU Langone Medical School and, after several years of looking at the gut microbiome of those with rheumatic diseases, the researchers believe that RA and other rheumatic diseases do have an imbalance in microbes. The second article is new research out of the UK and researchers there are also saying the same thing for neuro diseases, like Alzheimer’s, Parkinson’s, etc., pointing to the herpes simplex virus (cold sores) virus, chlamydia and spirochetes (like lyme, oral spirochetes, syphilis, h.pylori, etc.), being the culprits. Direct quote from Professor Douglas Kell, Manchester University in the second article:
http://www.medscape.com/viewarticle/859725?src=WNL_infoc_160306_MSCPEDIT
Medscape: When did the idea develop that our microbiota might play a role in rheumatologic disease?
Jose Scher, MD: This is a very old idea. The notion that gut material has a particular link with rheumatic disease has been around for at least 100 years, if not more. This was based on something called the toxemic factor hypothesis. The whole idea was that there were enough anaerobic bacteria in the gut that produced some sort of toxic factor that, when absorbed, would cause systemic inflammation of the joints.
“There is incontrovertible evidence that Alzheimer’s Disease has a dormant microbial component. We can’t keep ignoring all of the evidence”
Anyway, don’t want to overload you with more to read…just to say that the evidence is accumulating to a point where autoimmunity may one day no longer be labeled “idiopathic” as to cause. If I can offer you one tidbit of insight….choosing to follow an antibiotic protocol approach to treatment is usually a slow road and there may be hills and valleys to navigate. So, the best way to equip one’s self to begin the journey is to become well-informed. It seems like you have already done a lot of research and reading, so now it will just take time to feel comfortable with the approach to treatment you want to take. Some people only do AP, others will do AP and combine it with a DMARD or biologic (with the goal of tapering off those when able), or some ultimately decide AP is not for them. There is no right or wrong path, just what is right for the individual. This forum is here as a courtesy for the AP community, but you will find people who are on variable paths and at different stages of recovery, so it’s important to take things in your own time and to just do what you can manage.
The Medical Medium—and What’s Potentially at the Root of Medical Mysteries
The Epstein-Barr virus (EBV) has created a secret epidemic…
http://goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/
Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pmHi Maciej,
So this all proves that Mino just suppress inflamation (similar to other DMARDs), rather than targeting root cause of our disease(s)… 🙁
Not exactly. The anti-inflammatory properties can help, but minocycline is not a very strong anti-inflammatory, so the effect of minocycline really cannot be adequately explained based solely on its anti-inflammatory properties.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Maciej,
I can also understand how all of this may be overwhelming to start with – I think many of us can relate to that. There will always be a great deal of information to digest – some of it contradictory and, consequently, confusing. I have been on AP for 14 years – and I am still learning. Probably the element that most interests me of late is the role of the gut, which is something I began addressing 8 years ago and have never regretted and which is something which has gained far more prominence research-wise in the last 2/3 years.
My original diagnosis was the same as yours – Palindromic Rheumatism – and it didn’t follow classic RA symptoms at all – pain came on suddenly, was excruciating and was most severe in the tendons. It was also in the large joints, usually on one side only and symptoms arose every 4 weeks or so.
I think the original turning point for me was reading the Scammell book The New Arthritis Breakthrough. It made so much sense to me, when very little else did. I was never comfortable with the “idiopathic” label – for me, there just HAD to be a cause or a trigger.
It was this book that tipped the balance for me and made me want to approach the illness I had developed from a causal point of view not just treating (masking) the symptoms. I knew that this approach contravened conventional wisdom, but that book is what started me on my quest for other answers and the realisation that the rheumatologists I had consulted weren’t looking for any.I had great success with Minomycin (the Australian brand of minocycline) for just under 5 years. It was prescribed for me by my General Practitioner after I could not find a rheumatologist who was interested in anything but the usual approach. My GP considered it a very benign drug and was happy to prescribe it, with me case managing (he was aware I’d done my own research). Symptomatically, I was in remission after 6 months (though my RF never went back into normal range). But I felt great, which was the important thing. Unfortunately, I eventually developed a hyper-sensitivity to all the tetracyclines and can no longer take them. I am now (and have been since 2008) on a combination protocol (which gets changed up every year or so) plus a dietary approach to keeping well. You can read my story up to 2007 (when I was still on a pulsed protocol of Minomycin), if it’s of interest to you. Link to it is below:
https://www.roadback.org/story/palindromic-ra/Overall, what I’d suggest is to take things a little more slowly if possible. Allow space in your quest for answers for what “feels right” for you. There have been many times when this has been the deciding factor for me about which direction to pursue.
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)PhilC: thanks for your opinion! 🙂
lynnie_sydney:
When I read your Palindromic Rheumatism story, it is almost exactly my story! It is most visible in part that: the most painful parts was tendons (not joints itself). WOW! Also for me NSAID took NO EFFECT at all (but steroids helped me). The NSAID didn’t decrease PRA pain even by 1%.It also took about 2 years of PRA until it developes into RA. At the beginning I had like 95% or PR and 5% of RA, and now I am like 5% PR and 95% of RA. To be precise…. I had PRA, then started MTX for 2 years, and after stopped MTX, it went back as classic RA.
So the biggest question is – what does it mean? Following KISS* rule there is THE SAME cause of both PR and RA. The probability of other reason is almost zero.
I am reading rest of your story…. now you mention lady Mary Jean… and… WOW… I also had ear infection as a kid (around 8 and 10 years old), it felt like iron nail hammerd into my ear (but it was succefully cured), but non of the other of her symptomps – so this could be just coincidence.
regards,
Maciej*(KISS = Keep It Simple Stupid! -> means that the simplests solutions are the best)
March 2016:
31 y.o. male, Poland, Europe.
Diagnosed with RA (started as palindromic rheumatism) at age 28 (SED negative, RF negative, CRP negative, Lyme negative, Chlamydia negative, ANA highly positive, aCCP/ACPA higly positive.
Treated with sulfasalazine - no success. Chloroquine - no success. NSAID - no success.
Treated with MTX injections (10mg->15mg->20mg->15mg->12,5mg->10mg->5mg) for 2years. Almost total remission. 3 months after MTX quit - got RA again with trippled strength.
)
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