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Date: 18.03.2010
From: brummykev

Subject: Seronegative RA V's Mycobacterium Avium-intercellular Complex?

I was just wondering if anyone has ever heard of this condition. I was given a diagnosis of seronegative RA when I was 12 years old (I have bilateral knee pain) I was stared on the 'regular' methotrexate/folic acid combination and it has been working pretty well for me on and off - i still get hellish flare up's and they frighten the crap out of me.

I take alot of notice about what I put in my body (food/suppliments/flue remidies!) and how it affects my RA. I noticed last year after a course of Clarythromycin (for something unrelated) that I had no pain/stiffness and felt damn good - for ages.

I realise it might have been my imagination but I did not think the two things could have been related untill I was passed an article about the Mycobacterium whats-it.

I've a had a quick look online today to get some more information - basically synovial fluid was taken and a culture done on it -this MAC was found and the patient was started on 2year course (!!) of antibiotics and taken off the Methotrexate he was currently on. Results were no pain/swelling/stiffness after month 7 and still nothing 2 years on.

I'm going to speak with my specialist about this next visit but I just wanted to know if anyof you guys have had diagnosis of seronegative RA and have you approched ur specialist - what was the reaction?
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Date: 18.03.2010
From: Gemma

Subject: Re: Seronegative RA V's Mycobacterium Avium-intercellular Complex?

Hiya
I was interested to read your comment and applaud you for researching other methods than the toxic route. I have been on this forum a few times and have posted my views on the Antibiotic protocol. I was diagnosed in 2002 with sero-positive RA and was offered Methotrexate, but refused because of its toxicity. I did a lot of research and came across the Roadback Foundation, www.roadback.org, their main focus being the Antibiotic Protocol and includes information and support about a safe, low-cost treatment for rheumatic conditions such as RA. It is so important to know how and why the antibiotic therapy works, please visit their website and decide for yourself. The focus of their studies is mycoplasmas, unique species of bacteria and unlike viruses, can grow in tissue fluids (blood, joint, heart, chest and spinal fluids) and can grow inside any living tissue cell without killing the cells, as most normal bacteria and viruses will do. Mycoplasmas can cause acute and chronic diseases at multiple sites with wide-ranging complications. In some people the attachment of mycoplasmas causes the immune system to go into overdrive and an allergic reaction results in heated, swollen and painful inflamed tissues like those in RA. Being a bacteria, it can be killed using the right antibiotic. This made so much more sense to me, so I was determined to try it. I confronted my rheumatologist and he dismissed it saying that the antibiotic had not been tested on my condition. I took a look at what was on offer and the best they could offer was slowing the process down - that is the best that modern medicine can give with unacceptable side effects. Now, if you can slow down the progression of rheumatoid arthritis with little or no side effects ... which are you going to choose?

To cut a long story short...the antibiotic worked for me and in a very short time and almost all my pain was gone. I still work full-time, and do everything that had been part of my life before this disease came in. It has given me the unshakeable belief that there ARE answers if we care to seek them - using patience, discrimination and wisdom. And, most of all, if we make a commitment to educate ourselves and to case-manage our own healing, finding and using expertise that makes sense to us, rather than unquestioningly putting our wellbeing and healing in the hands of those who will not step (or even look) outside the square of medical orthodoxy. Furthermore the antibiotic is listed on the NHS best treatment guide and there have been trials conducted by the Kennedy Institute for Rheumatology, at the Charing Cross Hospital in London, with the majority of patients tested making a remarkable improvement on this regime. Also a research team at King's College London have identified and proven that there is a link between bacteria and RA. Hope this helps.
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Date: 18.03.2010
From: sally

Subject: Re: Seronegative RA V's Mycobacterium Avium-intercellular Complex?

I've done a bit of research on roadback foundation too. However, when I was in hospital last year they did a culture on my synovial fluid and it came back negative. So maybe not everyone has this bacteria in their system......?
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Date: 18.03.2010
From: KayJay

Subject: Re: Seronegative RA V's Mycobacterium Avium-intercellular Complex?

Wouldn't that be great if we were just given the anti biotics ? [ or is it not as simple as that ? ] because if it was I'd certainly be asking for them next time I go to the Rhumie clinic.

p.s.Does seronegative mean the RF is normal but the CCP is postive ? I still can't get my head around this as my RF is high but CCP is negative.
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Date: 19.03.2010
From: Jill

Subject: Re: Seronegative RA V's Mycobacterium Avium-intercellular Complex?

Hi KJ, Wish I cls ansa that, know Angela is great at knowing stuff like that....I was told I had seronegative R.A. and then Inflamatory Arthritis, know treatment is same, but im damm confused too!

Gemma and Brummie Kev, well done, in the past wehn ppl have put in posts about the 'Antibiotic', I have asked what the Antibiotiv is called, not being lazy, and I will look into the website u mentioned, however back in 2002, hospitalised with Reiters Disease, endedup with secondary Artha, However for three weeks, 24/7 I was given 3 different types of intavenous Antibiotics all at same time, this eventually cansued all the Good natural Flora in the stomach to disappear, and the bad bacteria(tht we also naturally have) Multiplied by the millions, and I ended up with C.Difficile (superbug) nearly Killed me that did, what worried me now, is my stomach cant take too much Antibiotics, as it causes me nasty reactions.....Pleae can U tell me the Name of the Antibiotic, so taht I can look into this ? thanks

Jill
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Date: 19.03.2010
From: jill

Subject: Re: Seronegative RA V's Mycobacterium Avium-intercellular Complex?

WOW just read about Mac....dont understand any of itm from the website that I read abut MAC, it didnt mention anyhting about Arthritis issues....im not a docd, was a complicated article, mb I misread it...How ever, when I was in hosp as said b4 in post above, they tested me for everything, right down to seeing if I had the VD and the like(hasten to add that came back clear) but me and my husband was tested ofr every rotten STD, as well as what waas going on in my body, So i wld imagine, Ive prob had that test, and didnt show that I needed mb that antibiotic....anyway, I will mention it next time i c my Rhummy....
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