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admin · Site Admin Joined: 06 Jan 2008 Posts: 45

If you are taking the MAP antibiotic treatment could you please post any information about the treatment, example, how you are doing on it, any side affects, and your province or state. This will help others who are looking for information on the MAP antibiotic treatment. Thank you

sh!+_stains · Joined: 07 Feb 2008 Posts: 40

Hi guys. I am 24 and diagnosed when I was 15, and I live in Ottawa Canada. I am currently on a quad antibiotic treatment (clofazimine, clarithromycin, rifabutin and ethambutol). I have taken these four for two years now and had great success at the start and then a small flare around the 18 month mark (October '07) and have since gotten better again. For some the antimicrobial antibiotics can be pretty much a cure, for others like myself they can be the best treatment option used so far but still fall short of a cure, and for others they may not work very well. Still, regardless of mixed results with antimicrobial antibiotics, there is much scientific evidence with regard to the MAP theory and I believe in it and believe that much more research funding needs to be directed towards conclusively settling the hypothesis. I have thankfully not experienced too many side affects. The ones that I have experienced have been: tanned skin and dark urine, and when I first started the ABX I experienced a slight metallic taste which went away after a few days and some transient joint pain which may or may not have been attributable to the ABX, as it could have simply been extra-intestinal inflammation accompanying my crohn's.

-David

Tim@TCCC.UK

As The Prof JHT says , " This does not work for Everyone."

Richard Webster Story in 1994.

Four years ago, Richard Webster became seriously ill with Crohn’s disease. He was rapidly losing weight, bleeding profusely and suffering tremendous pain. Doctors strongly advised him to undergo radical surgery to remove his large intestine in an attempt to control his disease.

But at 24 Richard was reluctant to commit to surgery that would leave him with a stoma – a permanent opening on his stomach with a bag attached. Instead, he turned to an unproven treatment. Today Richard, the father of two young daughters, is enjoying a busy life in Essex where he works as a quantity surveyor. “I haven’t looked back,” he says.
The treatment that Richard believes spared him from surgery was a combination of two antibiotics: clarithromycin and rifabutin. Even with this treatment there is no guaranteed that his illness won’t return, but Richard is convinced the drugs work. So could they really cure Crohn’s disease?

Affecting 40,000 ( in1994 ) people in Britain, the inflammatory disorder mst commonly affects the small intestine and colon. Most sufferers are diagnosed between 15 and 25. It can cause patchy ulceration along the gut and results in pain, severe diarrhoea, bleeding, weight loss and tiredness. The measles vaccine and food intolerance have been suspected as triggers, but there is no conclusive research. Richard requested the antibiotic treatment after hearing about the work of Prof John Hermon-Taylor, professor of surgery at St. George’s Hospital in London, who has a special interest in molecular and cellular science. He believes Crohn’s disease is caused by an organism called Mycobacterium para-tuberculosis (M. paraTB) that is also responsible for John’s disease in cattle and sheep.

“Evidence suggests most people have been exposed to it,” he says. “many can harbour it for years and never become diseased.
“But some people, either those born susceptible or made susceptible – say, by another infection or shock – can develop chronic inflammation as a result.”

During the summer of 1994, Richard was trying an exclusion diet where he added one new food at a time.
When he tried milk, his symptoms worsened. He mentioned this to his father, Jim, who had heard Prof John Hermon-Taylor speaking about M.para-TB at a Crohn’s seminar. Richard made a connection between the professor’s views and his own experiences and asked for his help.

Professor John Hermon-Taylor has treated 100 patients with the antibiotics. His results suggest that about “four out of every five get massively better”.
Because M.paraTB is difficult to eradicate, treatment is long. Richard took the antibiotics for nearly three years.

“One of the tremendous things is the way that Richard has been saved from major surgery,” says the professor.

Dr. Stuart Gould, a gastroenterologist at Epsom General Hospital in Surrey, has a special interest in inflammatory bowel diseases.

“People have suggested that M.paraTB might be the cause, and yet convincing proof has not been produced,” he says. Dr. Gould argues that because Crohn’s is “a disease that relapses and remits” over time, there is no proof that Richard’s recovery would not have happened anyway. However, Prof John Hermon-Taylor points out that his own results have recently been replicated by Dr. Tom Borody in Sydney, Australia.
For Richard, who enjoys a healthy life with his wife Sarah, Daisy, three and seven-week old Lily, it was all worth it.

“If I look back at how I was, there is no doubt in my mind that I am cured,” he says.
_________________
The Chronic Crohns Campaign UK

Raising Awareness & Funds For This Chronic Illness Across The World.