Rheumatoid Arthritis and the antibiotic protocol – minocycline

by admin on October 3, 2012 · 21 comments

Today I started taking antibiotics for my Rheumatoid Arthritis.  I have previously discussed this with my rheumatologist.  He says he has seen it work in a patient with very mild rheumatoid.  Although he didn’t say it, I got the impression he felt that this patient had self-limiting disease, and the antibiotics had nothing to do with it.

It’s not a well-accepted therapy here in Australia.

He was not averse to me trying, but he felt that it was very unlikely that antibiotics would help someone with moderate to severe Rheumatoid Arthritis.

The American College of Rheumatology lists minocycline as a DMARD  .  Accepted theory is that minocycline has a mild anti-inflammatory effect.  Any improvement in symptoms comes from this anti-inflammatory property, and not from the antibiotic effect of the drug.  Minocycline is considered a DMARD, albeit a mild one.

However, the Roadback Foundation    has a completely different point of view.  The theory there is that Rheumatoid Arthritis is caused by mycoplasma bacteria.  Tetracycline antibiotics, like minocycline, kill the bacteria and thereby put Rheumatoid Arthritis into remission.

There are enough case studies on their website to make me pay attention.

There have been several studies that do conclude that minocycline improves RA symptoms.  Again, though, all the studies I found state that it only helps in mild disease.  When I see other people’s gnarled and damaged hands, I think my disease is mild.  When I experience a full body mega flare, I realise it is not.

My rheumatologist classifies me as moderate to severe. It’s hard to know.

There are also studies in mouse models that show mycoplasma can induce Rheumatiod Arthritis in mice.  Mice is a long way from people though.

Then there are also plenty of studies that show absolutely no relationship between mycoplasma and Rheumatoid Arthritis.

The studies’ results are so inconclusive and poles apart, that I’m not going to post links.  It’s not that relevant to me, anyway.  Anecdotal evidence is enough…at this point, I have no other treatment options and nothing to lose.  Compared to Imuran and methotrexate, an antibiotic sounds pretty benign.

So what the hell.  I will give it shot.

Minocycline is slow acting.  Three months at least before I can decide if it’s helping.  And there are several protocols.

I am going with the Monday-Wednesday-Friday option.  100mg per day, 50 mg morning and night, on Mondays, Wednesdays and Fridays.

I don’t feel there’s much to lose by trying.  I keep reading, researching, hoping.  I’ve tried many, many treatments.  Fingers crossed, once again.

 

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{ 20 comments… read them below or add one }

David October 8, 2012 at 9:44 pm

Hi,

I have been on Antibiotic Protocol (in Aus) for 10 months now for Psoriatic Arthritis. My experience has been totally positive, had lower CRP ESR in a matter of weeks and dropped to normal levels within 4 months.

Read the book, The Road Back by Henry Scamell for more info and the Road Back Forum is excellent.

Best wishes for your improvement!

Dave

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admin October 9, 2012 at 9:57 am

Thankyou so much, David. I have been reading the Road Back Forum. Which protocol are you using? 100mg on Monday, Wednesday and Friday? A matter of weeks sounds wonderful. Thanks for your good wishes, and your success definatley gives me hope :)

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Sarah November 18, 2012 at 12:31 pm

I read somewhere that the percentage of RA patients that respond to antibiotic therapy is equivilant to the number of RA patients misdiagnosed as having RA when in fact the have other disorders like reactive arthritis or psoriatic arthritis. My rheumu said som doctors use the protocol to rule out other disorders when blood and scans may not show RA!!!! and we all know how accurate scans and blood are at measuring our RA. Good luck anyway- I can think of nothing better than finding out that it works. Cheers Sarah

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admin November 18, 2012 at 11:03 pm

I agree Sarah, whatever works!!! Unfortunately it doesn’t seem to work for me. And quite fascinating about the misdiagnosis. That makes sense to me tho…I think RA is still misdiagnosed very often. I’ve had people tell me they were diagnosed with RA, but their rheumy didn’t order x-rays or any other scans…just gave them ibuprofen and told them to come back in 8 months. (REally??? Hmmmmmm) And then there are others that take years and years of testing, and waiting, and maybe its RA, maybe its lupus, maybe its AS…its a tough disease…or set of diseases! In the end though, its finding a treatment that works that matters…as quickly as possible!

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FeelGood January 8, 2013 at 7:45 am

I have had moderate to severe RA for 8 years, with a anti-CCP of over 250. I definitely have RA. I have used antibiotic protocol to treat my RA for over 6 years and most days I don’t even know I have RA. It works much better for me than any of the conventional therapies I tried at first. I started with 200mg Minocin (100mgs twice a day) 3 days a week and currently take 100mg Doxycycline 3 times a week. I felt pretty good but after I stopped eating gluten I now often feel completely disease free.

Doctors have now spent 62 years trying to detract from the track record of this approach to treatment for RA. They can say it’s the placebo effect, the patient didn’t really have RA, minocycline is anti-inflammatory, or whatever this weeks weak explanation is, but nothing will change the fact that there are thousands upon thousands of RA sufferers this treatment has worked for. There is a mountain of anecdotal evidence that this treatment is often effective, as well as significant clinical evidence of the same.

It is not an appropriate treatment for patients who do not like to get informed, negotiate with their healthcare providers, or take their health into their own hands. But for the engaged patient it is a viable option.

I hope you are met with success on this path. I am grateful every day for this treatment, my doctors who monitor it, and the Roadback Foundation who first educated me about this option.

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admin April 20, 2013 at 4:00 pm

Thanks FeelGood – and I am so glad you have had such great success with antibiotic protocol. I agree with you totally…I have now read so many case histories that the fact that this treatment works (and works brilliantly) is indisputable, as far as I’m concerned. Personally, I didn’t find any benefit, but I am glad I tried it. I definatley thinks its a viable option, and agree with you….it can be hard to convince your doc, but being an engaged patient is the only way to be!

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Thia January 29, 2013 at 4:29 pm

Minociclene works , I had a RF of 1200, plaquenil help a little after 3 months, RF got down to more than 650 and keep like this for 3 years, I had to use all the regular protocol arava, enbrel, metro and nothing work finally I found a doctor who trust on me i finally i got the prescription that I wanted – after 3 months 200 mg per day 5 days a week, I finally found some relief and after that , my RA was getting better and better – this is not a fast treatment took me almost 1.5 years to get my RF AND CCP almost to normal, but I don’t have pain or stiffness , only when the weather change i feel a little pain, aleve or meloxican help with that.
This is my first winter with almost no symptoms, i can wear heel s again and walk with out pain.
I’m not sure that is good idea stop minocyclene so I’m trying to take only 3 times per week 200 mg or 100 daily 5 days a week,
Since my doctor is not too familiar I prefer decide my own doses.
This treatment was my miracle I was thinking 5 years ago that at this point I will be using a wheelchair , thanks god I found a doctor who wants to give this prescription , and people who I forums who share theirs experience .

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Anne March 12, 2013 at 6:31 pm

Believe it! I was to the point where my husband had to dress me, dry me, lift me from the car! I read the Road Back, and went on from there to ensure I wasn’t involved with some crank treatment…anyway what did I have to lose?! So, by luck I found a great doctor who uses the low dose anti-biotic protocol, and away I went. Not long before signs were good, I made both a daily diary and a coloured calendar to chart my progress. It is not quick, and very painful at the start, and I went cold turkey off all other medications. But after 18 months I was almost a new woman! It is now almost five years since I was off even minocycline, and only my feet are a minor bother. I am able to everything again, have a proper pain free life and my daughter thinks it a miracle!! I have watched too many friends with the disease die, the last after months on blood transfusions. So to all skeptics…try it, what have you to lose?

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Laura April 5, 2013 at 4:56 am

How can I find a doctor who follows the Antibiotic Protocol? I’m not having any luck.

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admin April 5, 2013 at 8:59 am

Hi Laura, go to http://www.roadback.org. The volunteers there can send you a list of doctors who treat with antibiotic protocol. This is from the Studies page (http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/87.html)

“You can email resource volunteers at apdoctors@roadback.org for physicians in your area who treat with antibiotic therapy. Be sure to indicate your diagnosis, geographical area and if you are able to travel to see the most experienced physicians. We do not post physician contacts on our website so your request will have an email response. RBF recommends that you read the suggested material and become familiar with the therapy before seeing a physician for antibiotic treatment.”

So try that email address. But first, if you haven’t already, read all the material on the site and get very familiar with the various protocols. Good luck and let me know how you go!

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Brandy April 10, 2013 at 5:28 am

How long were you on the minocycline? and did I read correctly that you are not taking it anymore?

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admin April 10, 2013 at 7:38 am

I took it for about six weeks, and yes I stopped it as I wasn’t feeling any benefit and rheumy talked me into trying Arava. Six weeks is probably not long enough though. I may have to try it again in the future, as I’m pretty much out of options! Are you taking mino, Brandy? Or considering it? I’d love to hear how you go with it. Good luck!

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David April 26, 2013 at 9:11 pm

Hi, I was the first commenter on this post and was keen to see how you went with the Antibiotics.

6 weeks is not nearly enough time to assess if the antibiotic protocol is working. I experienced improvement in blood results but not so much pain at first. It has been 16 months for me and I still am gradually improving. Just wondering, did you have any blood work done in this time?

You will find many a skeptic about the Antibiotic treatment from those unwilling to try, but not many from people who have tried it for greater than 6 months.

Have you explored any possible food sensitivities? I have cut out wheat and milk after getting a “moderate sensitivity” result on an IgG blood test. It has only been a month but has definitely made a difference to my pain levels and taken me to the next level. I only take on average 1 naproxen anti inflammatory a week now instead of 5. I know I have PsA and you have RA but the links for food sensitivities and gut health are there for both.

Anyway I see you have qualified for Enbrel and are about to start on it. I hope it gives you the relief you deserve and I am sure you will keep exploring to learn more about your own triggers and healing process!

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Anonymous July 21, 2013 at 7:55 pm

6 weeks is not long enough to see improvements on Antibiotic Protocol :-) More like 6 months maybe.

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Vicki April 20, 2013 at 4:21 pm

Hi Anne;
It sounds like you were pretty bad off there. Did you have joint damage or swollen feet and fingers? If so, did it go away over time? I have bad problems with my feet, one ankle, fingers, wrist. My feet have widened by about 1/2 inch and my rings don’t fit anymore. I was diagnosed almost a year and a half ago, but haven’t taken the meds. I’ve been researching all this time to find a natural remedy, and nothing has worked, so I’m going to approach my family doctor about the AP therapy. I was just curious. I want my feet back!

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Stefka April 20, 2013 at 2:31 am

Hi,please I need this protocol ,send to me I leave in Dubai ,not sure there is Doctor treat with antibiotic ,I been 4 times on Prednisolon and after I finish the treatment in 20 days my pain start again I cannot open water or get out from the car ,almost cannot wearers my clots .please help me .Thank you

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admin April 20, 2013 at 4:02 pm

Stefka I’m sorry you are in so much pain. Please look in the comments above – there are links to the Roadback Foundation and an email address where they can advise you if they know of a AP doctor in your area. The email address is apdoctors@roadback.org . Please email them – I really hope they can help you.

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tracifoust October 3, 2014 at 4:34 pm

After going round and round with a rhemu who was unwilling to try the protocol, I simply ordered a years supply of Minocycline over the internet and have been on the treatment for four months now. I have researched and researched this treatment and I can see the risks are minimal compared to the relief (and possible remission.) I also had a serious case of toxoplasmosis and endocarditis. It’s clear to me, my body cannot fight bacterial, even parasitic, invasions. So I decided to fight back. I was diagnosed when I was 27, and though I have lived a pretty productive life, traveled, married and had children, a career as a published author, there have been more bad days than good. Two years ago I changed the way I eat (I green juice three times daily now) and I decided to take a low-dose steroid (3-5mgs of Prednisone) I care nothing about the risks of the steroids, as I have had no side effects and have to decided to LIVE FOR TODAY. Because of the low dose steroid, the juicing and the Minocycline, I feel as if I have been given a new lease on life. I weigh 60 lbs less than I did two years ago. I can exercise mildly every day, I can think and move and plan and write and take care of my family. If you ask me to attend a party, I just may show up wearing eye liner and lipstick–something I would fret over when my effed-up fingers always had the final say. Hazy, depressing days of pain and “fibro-fog” are VERY few and far between. People, even doctors, say “Well you can’t be on these drugs forever.” Oh really? I think I can. I think I will. I have made a choice to have as many good days as I possibly can without obsessing over what will happen next. Dear Big Pharma: I am sorry that you can no longer keep me ill and take my money. Your infusions never worked for me anyway. I’m smart enough to treat myself while not going broke for what my insurance company will not pay for. RA- You messed with the WRONG CHICK <3 Traci

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admin October 3, 2014 at 4:42 pm

Awesome Traci! I am so glad you’ve found what works for you! I’m quite sure that low dose of prednisone is doing far more good than harm, and I understand exactly when you say you have to live for TODAY! There may be consequences, they may not! But you have to weight it up and Im with you. I have to think about NOW and live the best life possible. I’m glad the minocycline is working – I have heard so many people doing well on it. Love to hear a success story. good for you :)

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Marina October 5, 2014 at 7:37 am

I am on AP protocol for a year, yes I am in a much better shape than I was a year ago, but flairs come often, and I think that smth wrong with generic antibiotic I am taking . Road back foundation suggesting the same. We have to minocin wich is brand name antibiotic. The progress shows up much faster than with genetics. And some brands genetics are not working at all. I’m taking minocycline made by ranbaxy co. Any body could tell me wich brand is the most helpfull, course I don’t have $700 for a month supply of brand name minocin, so I need the best genetic there is out there. Anybody has any recommendations about brans of mino. God bless each and every one of you on this forum and all who suffers from this desease, thank you

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