David – Celebrating 10 Years of AMAT Remission

 

CelebrateI have suffered for most of my life, from boyhood, with the symptoms of Crohn’s disease, which was accompanied by large canker sores in my mouth. However, I was not diagnosed with Crohn’s disease until years later in 1990, when I was 49 years old. Beginning in 1985, I had three major visits to local hospitals which were nearly fatal, and continued to suffer with many flare-ups from time to time. These were treated with many of the standard Crohn’s disease treatments, with only very temporary relief.

In 2005, I became non-responsive to any standard protocol being offered.  I was basically at death’s door without hope. My wife, also feeling desperate, immediately began a process of searching online and printing out any article that seemed credible for us to weigh and study.  In our search, she came across a very well documented article. It was written by a doctor who explained Johne’s disease, a fatal, wasting malady affecting cattle that had similar symptoms to Crohn’s disease in humans.  The article went on to indicate that a particular bacteria, Mycobacterium avium subspecies paratuberculosis (MAP), is responsible for Johne’s disease. That same bacteria can be transmitted to humans, mainly through dairy foods, and  newer macrolide antibiotics are the key to treating the disease. The article also revealed that in the first trial (London 1997), 46 patients with Crohn’s disease were treated with rifabutin and clarithromycin, and 43 went into clinical remission. That’s a remission rate of 94%!

After further research, the antibiotic treatment seemed a more plausible and hopeful approach than anything else! The problem was that we had to find a doctor in the United States that was willing to use the new anti-MAP therapy on Crohn’s patients. There just didn’t seem to be any! However, after finding out about the Paratuberculosis Awareness Research Association, I was referred by them to Dr. William Chamberlin. I contacted him and he was willing to see me the very next day! My wife and I immediately booked a flight. I arrived at his office in a very weakened and frail condition. He ordered an examination, colonoscopy, biopsy, and blood work. The documented photos from my colonoscopy revealed the severity of my condition. My blood tests came back positive for the presence of MAP bacteria as well as the NOD2 genetic mutation associated with Crohn’s disease.  We discussed the anti-MAP antibiotic therapy, and I agreed to begin that day.

I started with three antibiotics twice daily: 500 mg of clarithromycin, 500 mg of levofloxacin, and 500 mg of mycobutin (rifabutin).  Within one week I was feeling better. After six months, I discontinued the levofloxacin because of severe side effects. Dr. Chamberlin switched me to 500 mg of metronidazole (Flagyl) twice a day. Later, I also wanted to discontinue the mycobutin due to cost, so Dr. Chamberlin substituted 300 mg of rifampin twice a day.

After one year, I returned to see Dr. Chamberlin for a follow-up exam and colonoscopy. He found that I was in clinical remission with no evidence of any active Crohn’s disease. Ever since I started the anti-MAP antibiotic therapy (AMAT) I have been doing great. I did have a small outbreak in the second year, but it was not nearly as bad as my past illnesses. Since then, I have been doing excellent with no Crohn’s disease symptoms and living completely normal! Also, since starting on the AMAT, I have not suffered with canker sores that tormented me most of my life.

For the past two years, the antibiotics I have been taking are: 500 mg of clarithromycin twice a day, 500 mg of metronidazole (Flagyl) twice a day, 300 mg of rifampin twice a day, and 100 mg of clofazimine (Hansepran) twice a day. On my own, I changed my medicine protocol to the following:  of four antibiotics, I take two, twice a day at the beginning of the month for two weeks, then discontinue taking any for two weeks. On the first day of the new month, I switch to the other two antibiotics, taking those in the same way for only two weeks. I also combine them differently from month to month. This method became necessary to help me eliminate the nausea and fatigue which comes when I’m on the medicine for more than three weeks at a time. After some experimentation, I found that this spacing and variation of the medicine works well for me.

At the start of the protocol, I had some difficult side effects, but was absolutely determined to follow through. The first year or two can be difficult, and may discourage some from continuing the therapy. It takes a lot of patience and determination.

My wife and I are so indebted to all the doctors and researchers who have spent countless hours and effort in helping Crohn’s disease patients!  We especially want to thank Dr. Will Chamberlin for being the caring kind of doctor that patients usually only dream of having. It makes us angry that most gastroenterologists won’t do serious research on AMAT, and many malign the doctors and researchers who are making forward strides.

To all excellent medical doctors, especially to Dr. William Chamberlin:

You went through medical school so you could help patients like me. You learned what to do and when to do it. You increase your knowledge by treating patients like myself. You study me and see if your diagnoses is correct and if the prescribed treatment is beneficial. If not, your education has taught you to reevaluate my needs and your prescribed protocol. I give you my thanks, because after examining the history of my treatment, which gave relief but fell very short of the desired outcome, you were willing to look at the new science of healing for Crohn’s disease.

You have given me many years of productive living, which others like me are also enjoying. You might have been hesitant (and I applaud you for being cautious), but yet you were willing to look objectively and open-mindedly at new research and the favorable data it revealed.

You, like Dr. Chamberlin, are the ones that will move medicine forward. It may not work for every single patient, just like any treatment will not work for every individual or disease, but in you there is the will and the effort to keep seeking  answers and to share the knowledge you’ve gained with your patients. Failing to do this is like leaving a tool in the toolbox that may have changed the outcome of your patients’ life.

Again, I do thank you for helping me and others like me. Your willingness to continue to learn and help your patients by using new, cutting edge therapy is what the medical profession is founded upon. I know that you must have the patients who are willing, like you, to take the necessary first step in their treatment. I encourage all of the Crohn’s disease sufferers to educate yourselves about the anti-MAP therapy!

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