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Hi,
I have only stumbled across this website today and I am amazed that there is a whole new treatment for RA that I never knew about. Is this treatment frowned apon by the general Rheumatologists? I am on mtx at the moment but would love to know more about the antibiotic treatment. Thanks
Hi lizbeth and welcome to the Roadback forum. Just why AP is a well-kept secret amongst rheumatologists is something we'd all like to know too. :X Most of us have fired our rheumys and sought out doctors that would help with the Antibiotic Protocol.
If you haven't read, The New Arthritis Breakthrough, by Henry Scammell, it is recommended to understand the rationale behind the program. You will also find loads of information in the Home section of the board.
This is an extremely effective protocol and given many, many people their lives back, me included. 😉
Lots of great people on this board that can help, so ask away.
Take care…..kim
p.s. If you'd like a list of AP docs for your area just let us know.
[user=2095]lizbeth[/user] wrote:
Is this treatment frowned apon by the general Rheumatologists?
Lizbeth:
You hit upon the $64,000 question. As Kim said, we have all asked that same question. For RA, minocycline treatment was proven effective in a Clinical Trial called the MIRA Trail (Minocycline in Rheumatoid Arthritis), funded by the National Institutes of Health (NIH) and the Road Back Foundation in the late 90s. You cannot get more credible than NIH! Yet, most rheumatologists today will refuse to prescribe this treatment, even when patients request it. It is vary rare that a Rheumatologist would actually inform a patient of this treatment option.
In my personal case, my daugther was diagnosed with systemic scleroderma. The doctor who diagnosed her, told me that this treatment “is a HOAX!” and “he would have NO PART OF IT!” So, I did my homework, made MY choice and found a doctor who WOULD help us with this treatment option. Four years ago, my daguther was failing fast, she had documented lung involvement along with all of the other traditional scleroderma symptoms. The non-AP doctors wanted her to go on methotrexate and they thought that she might have two years based on the rapid progression of her disease. Now, four years later, she is symptom free, it is nearly double the time that she was expected to live, and in that time she has earned an NCAA Championship title, an ESPN award for her swimming and academic performance, and had a Blast of a time at college, doing the things that college kids do.
So, that is the long and the short of it, this is an effective treatment option that is not promoted by mainstream medicine. There are many guesses as to why most rheumys won't tell their patients about this option, but little of that matters at this point. The information in the book that Kim suggested, as well as the information available on the Road Back Foundation main website can give you the information you need to decide whether this treatment is what you choose.
Welcome,
Cheryl F
Lizbeth,
I was told by the rheumatologist who diagnosed me with Scleroderma that I had 2 years to live as well. When I gave her printouts of the Antibiotic Protocol, she threw them in the garbage, and said she refused to read anything that wasn't a “double-blind, placebo study,” but she could help me when my organs failed. That was the last time I saw her…and I've been on AP since December of 2008, and am 90% better:)
I never took the drugs they wanted me to take, and I've never looked back to try to figure out the reasons why MANY doctors wouldn't listen to me. I cannot comprehend why such a simple treatment isn't the first choice by doctors. But, it doesn't matter because I found it, I'm on it, and I'm better. You need to decide what the best treatment is for you. Empower yourself with as much information as you can, and ask as many questions as you need to (a lot of which can be found in the book, as well as here).
Welcome to RBF–you have found a wonderfully supportive group of survivors, who are always here to help.
Maria
Lizbeth,
I have RA, diag. April last year, Have been on AP since June, last year. Before AP, I limped all the time,the balls of my feet and my toes hurt so bad it was all I could do to wear shoes. If I used my hands for anything, like peeling potatoes, lifting dishes, holding a broom, etc. The next day I could only sit with ice packs on them and cry, because the pain was so bad. I got worse at first after starting AP, but then I slowly got a little better and better. Today I can do all those things with no pain. I can walk with no pain…… It is amazing, when I think of how much pain I was in. Not everyone sees results this fast, I know. I started AP as soon as I found out that I had RA, which is a positive, also I never took any of the (DRUGS) the doctors wanted to put me on. I have never regreted using AP. I think it just makes sense. Please read the book, you will understand it better. Ask any questions that you may have. We are all here to help each other. Best of luck.
Judy
lizbeth….I am new here too. I am taking mtx and Arava. Neither are helping. Also, from time to time I have to take prednisone. What gets me through the day is tramadol right now. I hate all of these toxic medications. I feel like we are treating the symptoms of RA and not the cause. If Lyme is the cause then we need AP to treat the Lyme. I'm first gonna ask my rheumy about starting me on AP and if he refuses, which I'm sure he will cause he certainly hasn't ever even led me to believe that AP can help. then I plan to find a doc who will. I started mtx a year ago and Arava was just added a month ago. They are not helping. I want my life back. I just want you to know that I am going through the same thing you are…..here in the beginning of this journey.
Hi Peach73,
Nice to meet you. I am seriously considering going off mtx and trying the AP, my biggest fear is that if I'm not on mtx the disease will take hold and it will cause irreversible damage. Are you going to stay on your meds with AP or use AP alone?
Hey again 🙂 I really want off of these meds and do AP alone. Most things I have read said that it is best to be off immunosuppressing meds while doing AP. I guess it will be up to the doctor treating me and what they decide but I plan to request to be off of them.
hi i am interested in the ap i live in carroltton texas i have the worse sd with lung fibrosis and i am currently taking cytoxan iv form jus finished my 3rd treatment but dont no if insurance will cover any more treatments..i do have the books on sd but do not know how to find an ap doc here..i was told that some one on this site could send me a list of docs i would really appreciate it.
Dani,
I'm sorry that you had to seek us out, but happy that you found us! I'm sending you a PM(personal message) with the AP doctor list for Texas. (you will see 1 new message next to your login, and just click on it) Your state is definitely represented on this site, and I'm sure others will chime in with their suggestions.
We're here to answer any questions you have, and of course, to offer support and encouragement along the way.
Please keep us posted on how you're doing.
Maria
Hi Dani,
I also wanted to welcome you to the Roadback forum. This protocol has literally saved my life from Scleroderma and Lyme.
Looks like Maria has already sent you the list of doctors for Texas and I just wanted to add that Dr. K. (we don't use doctor's last names) in Lufkin is one of our best AP docs. She also does the IVs which not all AP docs are comfortable with, and might be just the aggressive treatment you need.
Lots of SD people on the board so let us know what we can do to help you.
Take care…..kim
[user=2095]lizbeth[/user] wrote:
I am seriously considering going off mtx and trying the AP, my biggest fear is that if I'm not on mtx the disease will take hold and it will cause irreversible damage. Are you going to stay on your meds with AP or use AP alone?
Hi Lizbeth,
So nice to meet you and so great you stumbled on this site! This really is a life-saving treatment, but it's very important to get informed about how it works and the rationale for its use, as the others above have described.
I just thought to jot you a note, because although immuno-suppressive meds work in opposition to antibiotic therapy or AP (antibiotic protocol), as it's dubbed around here for short, it may be wise to reconsider stopping your mtx cold turkey. The reason for this is what Judy above described. In the early days of AP, it is quite common to feel worse before you feel better. This is called a Jarisch-herxheimer reaction (info on main website at http://www.roadback.org under Education tab). So stopping any DMARDs too fast can result in drug rebound and the double whammy of a herx. Therefore, it's probably best to start low and slow on AP and then, when things have stabilised with herxing, to work with a knowledgable physician to gradually wean off other drugs.
The reason immunosuppressive meds work in opposition to AP is because the antibiotics used for rheumatic diseases are normally in the tetracycline class and these work bacteriostatically. What this means is that they don't kill pathogens outright like a penicillin would, but work intracellulary to block certain enzymatic processes of the pathogens and slow them down. The immune system then does the actual killing. If the immune system isn't functioning, however, due to immune-suppression, then it won't be doing the job of killing the bugs.
Anyway, just thought to mention that, because AP failure can be a very real possibility if a person is suffering from drug rebound and herxing all at once. It is also a very real possibility to be able to get off all other drugs once AP kicks in, but done in a very slow, measured way.
Also, the tetracycline class of antibiotics have some amazing immune-modulating properties that are cartilage protective, including anti-collagenase properties. Collagenase is the enzyme that causes breakdown of the synovial lining in the joint and the tetracyclines work to block this enzyme. Here is a presentation that was given at the last ACR meeting:
https://www.roadback.org/EmailBlasts/ebulletin_fall09.html#ACR
http://acr.confex.com/acr/2009…[/b] [/size]
Hope that helps a bit, but would definitely second that it's very wise to read the material first, both in the book and on the website, so you can make an informed decision about the therapy for yourself and then decide if you want to see an AP doc to help you on your way.
Glad you've joined us here!
Peace, Maz
PS Peach73, I love your avatar pic!!!
Thank you Maz,
The info i have received thus far has been wonderful by all. I feel I have stumbled across a great group and look forward to reading many posts.
Lizbeth
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