Antibiotic tx for RA? | Arthritis Information

After I posted this and was doing some research, I realized that AP was the abbreviation of Antibiotic Protocol and there is an subgroup of you guys out there!  DUH!  Anyhoo, if you still don't mind giving me some tips for where to learn more, how to approach my dr, how to get started, side effects/hazards of this approach, etc., I'd greatly appreciate it!

 

Original post:

I did a search and came across many posts related to the antibiotic tx of RA.  I thought I'd update and try to compile experiences here.  Has anyone tried this approach instead of DMARD's/biologics/etc?  What was your protocol? What were your results?  Any thoughts, ideas, input would be appreciated!

 

Thanks!
Rachel

 

Did you see the AP thread on this page?  It's like 26 pages long.  Yes, I'm on AP and I love it.  If you're thinking of starting (or do) post there!  I'm trying to get people to post the ups and downs so people see it's not really magic - we work to get our health back.  I never did DMARD's or the biologics because my research and how this all came down for me said 'infection' and I ran with it. 

 

I use 200mgs Minocin (100 AM and PM) on MWF's.  That's the Brown Protocol.  The daily version is called the Harvard Protocol.  I think the pulsing (MWF) kills more microbes that way. 

 

My results - could open a milk jug by myself 2 1/2 weeks into it.  Could run (ugly but I did it) in 3.  Could climb on the roof in 4.  I boogie boarded in 11.  I'm now swimming 3 - 4 times a week to lose weight so I can go learn how to surf.  They have laws in Cali - no fat people allowed on surf boards.  Mind you - I'm what's known as an early responder.  The more your immune system was suppressed, the more you have to 'undo'.  That takes longer. 

 

www.roadback.org for basic info.  Lurk and learn as they kind of speak Greek there and it takes a long time before it kind of clicks and it all makes sense.

 

The New Arthritis Breakthrough by Henry Scammell is the best book.  It reads like a thriller and has all the science and politics behind this. 

 

Best way to approach your doctor is to ask straight out.  Most will pooh-pooh it but some (rarely) are interested in learning.  If you have one of those - you're in 7th heavan.  If he's against it, if you post on the Roadback they'll send you a few names for your state.  There are not a lot of docs that do this but the ones that do are adored by their patients for the most part. 

 

Number 1 tip - probiotics!  They're the best thing to help this succeed. 

 

Hugs,

 

Pip

 

If you dig deep enough into the gobble-de-goop and the "greek" writings, you will see that there is a reason that not many people use the antibiotics. Even those promoting the AP cannot give any clinical data showing that AP is a valuable method of treatment for RA.

 

Pip has Palindromic Arthritis. After I brought the truth about her having Palindromic Arthritis and not Rheumatoid Arthritis last fall, she all of a sudden, in September, states that her Doctor informed her that she had "graduated" from Palondromic Arthritis to Rheumatoid Arthritis. She hasn't explained how her body, while on the miracle AP therapy, changed from Palindromic Arthritis to Rheumatoid Arthritis. Keep in mind that those that have tried the AP therapy and found themselves in a worse shape than had they not tried the AP therapy, Pip accused them of not following the very strict protocol, it's very hard to understand and to follow according to Pip. According to Pip and the few other mino-heads, most Doctors of Rheumatology are paid off or living in the dark ages. You will see after listening to them that they are much smarter and more knowledgable than even the most educated of doctors and scientists. Talk is so cheap. Your rheumatologist will find the best protocol for your well being. If he or she makes a mistake or takes you down the wrong road you will have the right to legal action. If these "think they are doctors" take you down the wrong road, they won't even help you find the right "road back" to good. Trust your health care professionals. They truly have your best health as a mission, not some silly agenda, without proven clinical data.

 

LEV

 

 

Pip

 

Did I speak something that is not true? Just how did your Palindromic Arthritis graduate to Rheumatoid Arthritis after being on the AP protocol for such a long time? Seems to me that the AP would have at least prevented the RA if it can in fact beat the RA. Just kinda wondering if you could eloquently explain that. Maybe you weren't following protocol? How is your bent toe, your claim to ra fame?

 

Just because I expect and demand the truth does not make me an it or a moron. Just because I proved that the Harrison study that you use as clinical data to be nothing more than a paid marketing study just pisses you off doesn't it? I guess that is where the old saying of the truth hurts comes from.

 

Just at least be honest, what's so hard about it. How's you digestive system Pip? It ain't going to get any better.

 

LEV

 

Read the MIRA study.

 

Jan

 

My rheumatologist put me on celebrex, plaquenil and minocycline in October. By December I was completely off the celebrex and any other pain medicine. She cut back my plaquenil from 400 mg, to 300 mg, to 200 mg/day -- which is less than a therapeutic dosage level. My medicine is minocycline, 100 mg, 3 days/week.

 

It really does work -- given my early treatment I am really in clinical remission (although it's a medicated remission -- not likely I would stay here without the medicine). Except for some minor fatigue and join discomfort (left over in my shoulders and right hand) I look and feel perfectly normal. There is no joint erosion and no clinical sign of swelling or joint effusion. The bakers cysts in both knees have disappeared.

 

The protocol for me has been simple -- a healthy diet, supplements that include probiotics, fish oil, vitamins, etc. Many rheumatologists are open to the possibility. Good luck to you.

 

Bonnie

 

I beg your pardon. You did ask for just one side and not the other. I will start my own thread for the sake of the other points and truths about minocin for rheumatoid arthritis.

 

Reegie,

 

If I am a jackass, I am a jackass with severe rheumatoid arthritis with damage to my joints and erosions of some bones caused by the severe rheumatoid arthritis in a very short time. I know that people first diagnosed with rheumatoid arthritis and introduced to the very serious medications can be scared out of their common sense after reading of the possible side effects. I know that newbies are looking for that miracle cure without the side effects. I also know that if a person doctor shops they will find a doctor to let the patient doctor themselves thru his or her liscense. I know of members here that have doctor shopped and tossed the doctors that didn't give them the diagnoses they wanted, into the garbage. Those members are a medical mess. I know for a fact that in the time an ra paient realizes that they have made a mistake trying the ap therapy, irrepairable damage can be done to joints and bones. I know how vulnerable newbies are. I know what doctors and scientists and studies and universities in all countries say about ap therapy for rhuematoid arthritis. There is no worldwide conspiracy to prevent minocin from being used in the treatment of RA. I take offense at anyone making false or misleading statements about cures or medicines for my/our very serious, dibilitating, deforming, disabling,  deadly disease. I don't mind if "they" want to post clinical data, scientific evidence, arthritis organizations or foundations etc. factual findings without embellishment. Maybe I am a jackass in your mind but I am a jackass with severe rheumatoid arthritis that really does have mine and other ra patients well being and good enjoyable quality of life as a top priority. People like you that have a bias and a loss of fairness because of your dislike  of a person doesn't bother me and it is my wish that you do try the ap therapy but I know for a fact that there are good people that read what I write without bias and it just may save them from a life of digestive problems and and possibly save them from the replacement of a knee or hip, they can't take the road back from that.

 

Jan Lucinda,

 

I have probably already read the MIRA report but when I searched for it there were hundreds of mira orgs, top mira is an astronomy group. If you want to post the link to it, I will certainly take a look at it. What do you think of the Harrison study, Jan Lucinda?

 

LEV 

 

Please, please, please tell me you are also on probiotics.  Trust me on this - from posts on the Roadback, as well as my own stupid mistake - there is a darn good chance this will fail without it.  If not, please run, do not walk, do not pass go, to the closest vitamin store and get some of the big guns.  The most strains and the most 'live cultures'.  You don't want to have to 'undo' this to keep it going.

 

Please?

 

Pip

 

I am sorry for your ra, but other people have it also, and some of us are newer to it than others and have questions.  I kind of thought what this was for, maybe I'm wrong.  When you ripped into Pip I didn't think that was right when all she is doing is trying to help someone.  The way you jumped on her was not right in my opinion and you sounded like a jackass.  Sorry for wrecking your thread!!

 

Pip

 

Pip

 

I feel wonderful and I feel so blessed. Like you, I caught my disease early and minocycline has worked beautifully. Although I am always nervous about what's around the corner -- every twinge or ache you start to jump to conclusions -- but I have been extraordinarily healthy since starting this treatment -- not even a cold in almost a year.

 

Next weekend I am going on my annual women's bike trip in southwest Michigan. Normally I teach yoga there also (Saturday night after the long ride, and Sunday morning) -- last year I could barely function. This year I am psyched.

 

Keep up the good work!

 

Bonnie

I use Solaray Multidophilus 12 available in the refrigerated section at Whole Foods.  It doesn't have to be that.  Just get the most strains and the most 'live cultures' as possible.  Whole Foods pushes their Jarrow with FOS but it did nothing for me.  Others love it.  Go figure.  You'll know if it's working for you if you become 'regular'.  Am I the only person on the Internet talking about BM's?  LOL

 

Joe - great to here she's still going strong.  I remembered something - a long time ago (under a year) I came over to the RB and posted to you looking for some of your studies.  I think it was MTX and something about children???  Guys, Joe here is fab at evaluating research and he had been posting a ton of stuff that wasn't 'tainted' - ie - not Pharma links.  Anyway, I asked for it in such a way that Cheryl or Karin said "tell people you're doing OK' and so I did - LOL.  Anyway, it was for somebody here that I needed the study.

 

Thanks Bonnie - and I didn't remember you were from the MI vortex!  A ton of people here from there.  Thanks for your kindness but, as you've seen, it's only a few people that don't want the info to be available.  The rest here are fantastic.  I don't know if you saw, but my niece was emergency hospitalized for c. diff and the people that were the most help to me trying to get help FAST for my SIL were the non-APers.  I love it here!

 

Congrats on the bike ride!  I'm such a sloth and a bike ride in MI in July is NOT my idea of a good time. 

 

OK, just to be my usual pain - you know it's time to diss the Plaq, don't you?  I know, it's scary, but...people herx all over again when they drop down on the meds and it's normal!   Just being a pain! 

 

Hugs,

 

Pip