ELCAMINO... jsyk...

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3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/22/2006 2:33 PM (GMT -7)   
Your doctor is flat out wrong about ap.  I responded to you in the thread, but it just doesn't sit right with me that he flat out gave you misinformation.  Your post helps perpetuate that misinformation so I wanted to address it directly.  There is no reason to believe one ounce of what he sold you.  Go to the roadback website and post what your doc said there.  You will find that folks there are much more literate than I am.  I know your guy is wrong, but I'm not versed enough to explain it as I am new to the idea of AP.  It is a TRIED AND TRUE therapy.  It will not kill you.  You are placing all of your faith in your doc but he is not telling you the truth.  If you just sit there and believe what he sold you without going to the other website and investigating for yourself, you are allowing your doc to manipulate your health to prove he knows best without even testing his knowledge. 

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/22/2006 3:20 PM (GMT -7)   

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/22/2006 3:22 PM (GMT -7)   
Antibiotic Therapy and RBF: A Brief Chronology

Pre-1940s:
Many diseases, including those involving the connective tissue, are assumed to be caused by some form of infection

1939:
A Rockefeller Institute researcher, Dr. Albert Sabin, induces rheumatoid arthritis in a laboratory mouse by injecting tissues from a diseased animal into a healthy one.

A Sabin colleague, Dr. Thomas McPherson Brown, succeeds after 200 attempts to culture a little-understood infectious agent (later to be named mycoplasma) from the joint fluid of a human patient. Brown's article in Nature suggests it is the cause of rheumatoid arthritis.

1948:
Cortisone is isolated by doctors at the Mayo Clinic. Because cortisone, later sold as prednisone, suppresses the symptoms of inflammatory disease, it is mistaken for a cure. Mainstream medicine abandons the infectious theory in rheumatic disease.

1950:
Dr. Brown begins four decades of treating thousands of grateful patients with antibiotic therapy.

1970:
Retiring as Dean of Medicine at George Washington University School of Medicine, Brown establishes the Arthritis Institute of the National Hospital for Orthopaedics and Rehabilitation in Arlington, VA.

1971:
A small, poorly designed study on the effectiveness of tetracycline on RA patients is reported at Massachusetts General Hospital in Boston. The unimpressive results of that study will be used for the next two decades to discourage further investigation into antibiotic therapy.

1970s-80s:
The NIH remains largely unresponsive to Congressional requests for research on mycoplasmas as a possible infectious cause of RA. Dr. Brown finds private funding for the Arthritis Institute.

1988:
Dr. Brown and writer Henry Scammell publish The Road Back (now out of print) describing Brown's many successes with antibiotic therapy and reviving a broader interest in the infectious theory. Although criticized by the American Rheumatism Association as unproven, both the theory and the book receive national attention in the media.

1989:
After a brilliant - and often frustrating - career of almost 60 years, Dr. Brown dies at the age of 83. Patients fear loss of access to antibiotic therapy, now referred to by the patient community as "AP" (Antibiotic Protocol).

1991:
Under renewed Congressional pressure (starting with many of Brown's patients), the NIH finally launches a major clinical trial of Minocycline in Rheumatoid Arthritis, with 214 patients at six study centers around the US.

1993:
The Road Back Foundation (RBF) is started by patients whose lives have been changed after reading about the treatment in Brown's book. In anticipation of the MIRA results, a new, expanded edition is issued as The Arthritis Breakthrough.

The positive results of the MIRA trial are presented at the annual scientific meeting of the American College of Rheumatology but receive little media notice.

1995:
The MIRA study is published in Annals of Internal Medicine, which reports "highly significant improvement" in laboratory measurements and finds minocycline "safe and effective" in the treatment of rheumatoid arthritis.

1998:
A three year NIH study in Nebraska reports the first remissions with minocycline and shows benefits from AP increase dramatically over time.

Results of the first study of Minocycline in Scleroderma, with two-thirds of the completers in remission, are announced at the International Society for Rheumatic Therapies in Boston. Sponsored by The Road Back Foundation and the NIH, the study is reported by CNN around the world. For the first time, there is hope for the effective management of this potentially fatal illness.

The New Arthritis Breakthrough is published, with results of the several clinical trials of minocycline in rheumatic diseases.

A companion book, Scleroderma, The Proven Therapy That Can Save Your Life, reports on the Harvard scleroderma study.

1999:
Fourth-year results of Nebraska NIH study show benefits from minocycline continue to rise over time, with unprecedented levels of remission.

2000:
RBF provides its literature free online at www.roadback.org.

A patient peer-to-peer online bulletin board helps patients and others interested in the therapy with questions, and a volunteer patient support network (APNCs- Antibiotic Protocol Network Contacts) expands in US, Canada, Australia, Japan and other locations abroad.

AP begins to gain greater attention within mainstream medicine as a safe and proven treatment. However, most rheumatologists continue to offer their patients expensive pharmaceuticals which may have serious side effects instead of antibiotic therapy.

USA Today publishes an article about scleroderma, RBF and AP, citing its promise for effectively managing the disease as well as its controversial status as a treatment option.

Saturday Evening Post cites RBF in article on minocycline therapy for RA and scleroderma.

2003:
ACR reports that "standard" therapies for RA work better with minocycline than alone.

Canadian meta-analysis in Rheumatology suggests minocycline is underprescribed despite its proven effectiveness in RA.

2004:
RBF upgrades its web site and increases its traffic to millions of hits monthly offering information and support to its visitors.

Additional research initiatives are explored and being developed.

2005:
RBF supports Harris Interactive poll to evaluate the experiences of people taking antibiotics to treat rheumatic diseases.

2006:
Harris Poll results of responders indicate more benefits with antibiotic treatment than traditional prescribed medication. Markers include reduced swelling, pain, fatigue and stiffness, slowed progression of condition and improved concentration/memory, function and quality of life.

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/22/2006 3:24 PM (GMT -7)   
Notice that in 1999 the NIH study...."1999:
Fourth-year results of Nebraska NIH study show benefits from minocycline continue to rise over time, with unprecedented levels of remission."

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/22/2006 3:25 PM (GMT -7)   
Elcaminio... I just want you to get better. I don't want you to exclude the possiblity that AP could throw you into a remission.... !!!! We want to trust our doctors, but that's not always the best way to go. Sometimes we have to question them.
 
 
Here is a link that helps you to cope with the naysayers.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/22/2006 4:10 PM (GMT -7)   
I've a comment to make.  First of all...I don't believe by any respect that antibiotic therapy has been "thrown out" or a lost science in treating connective tissue diseases and RA and the likes.
It's many times the 1st line of treatment in many instances.
Mine was...and I do very very well when on cephtin, penicilline, cipro, doxy...
The AI diseases I have now are sequala from a rampant undiagnosed/untreated Lymes bacteria.
The neurologist that was 1st treating me for arthritis problems did so with antibiotic cocktails.
For JRA in particular...IV antibiotics is fantastic.
 
Now, I'm biting my tongue a bit....but as I read these posts, they tend to read a bit harsh and intrusive.
By all means you mean the very best.  But in a time of acute distress and trying to handle what's in front of a patient w/ an AI disease at any given time...being "pushed" is the wrong way to go.  I feel it to be very distressing for such a strongly pushed view on the topic & quite honestly....can cause a person dealing with this a lot of doubt, sadness, self doubt, and insecurity.  All of those qualities are a bit toxic to the well being, emotional, mental, state of mind of the patient.
 
AP causing remission...sure why not.  But in the end is it truly acting as an immune modulater and working at the disease to halt the progression of RA and prevent joint destruction and deformity?
 
What is tried and true is I agree with you the best.  But again, an individual is unique.
I wouldn't be stating my opinion (and this really can go out the other ear that's fine tongue ) if I had not gone through extensive antibiotic therapy myself for RA.
The best to you in all you do.
Sincerely,
erin
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/22/2006 6:07 PM (GMT -7)   
http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/141.html

Erin,
Yes, in the end AP halts the progression of the disease and prevents joint destruction and deformity.
 
Follow this link for a detailed discussion about joints becoming less deformed.
 
 
 

Post Edited (3kidsmom) : 7/22/2006 7:11:50 PM (GMT-6)

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