This article is a continuation of Part 1. Please read Part 1 before you read this. The link is http://www.psychologytoday.com/blog/pura-vida/201311/is-there-cure-crohns-disease
Part 1 is about the basic biology of MAP, and why the USDA has not removed it from the food chain.
On to my own history:
I was a generally healthy physician, wife and mother of three until the summer of 1986, when I suffered my first bout of what was termed ulcerative colitis. It remitted with steroids and time. I had several subsequent minor episodes of colitis that remitted quickly with oral or rectal steroids. I lived on a farm and I love knitting, so I acquired angora goats so that I could shear them for natural yarn. In 2003, I underwent a routine colonoscopy, which showed penetrating abscesses in my colon, but no action was taken. Over Christmas of 2003, one of my goats became horribly sick and died in my arms. She had a fever and chills. There was no definitive diagnosis. In February 2004, I became increasingly fatigued and anorexic, with fever and abdominal pain; the presumptive diagnosis was appendicitis. However, colonoscopy revealed Crohn’s Disease with diffuse abscesses of my entire colon. I was treated with IV prednisone, plus oral mesalamine and azathioprine—the standard medical treatment for Crohn’s—with little improvement. In July, 2004, I received an infusion of infliximab, which helped dramatically. After several more infusions, I relapsed and was readmitted to the hospital in October, 2004, whereupon I again received infliximab as well as steroids.
While lying in bed, soon after discharge, I read Dr. Salah Nasser’s article in The Lancet, “Culture of Mycobacterium avium subspecies paratuberculosis from the blood of patients with Crohn’s Disease.”
This article was immediately salient to me, since I knew about Johne’s Disease because I had been keeping goats.
Maybe because I was still a little agitated on prednisone, or maybe it was just good instincts, but I immediately connected the sudden onset of my severe Crohn’s with the death of my goat, and I decided to contact experts in the field of MAP to look for appropriate antibiotic treatment. (Retrospectively, I think I was wrong, I don’t believe that I caught Crohn’s Disease from the sick goat, but at the time, it seemed compelling.) I read most of the references from Dr. Naser’s article and emailed many of the scientists. I was referred to Dr. Thomas Borody in Australia for further information.
I printed a ream of papers for my own gastroenterologist and my primary care physician. The gastroenterologist did not believe a word of it, and wanted to continue with infliximab. My internist, however, was intrigued. She talked to Dr. Borody, and after reviewing the literature and discussing the situation, we decided to give Dr. Borody’s protocol a trial. Before this, blood was drawn and sent to Dr. Naser’s office for culture and PCP. The results were negative.
On December 10, 2004 my doctor started me on the Borody protocol: clarithromycin, rifabutin, clofazimine and ethambutol. I also had one more infusion of infliximab in January, 2005. I continued to take mesalamine, and tapered off prednisone, but developed secondary adrenal insufficiency requiring supplementation with hydrocortisone at physiological replacement doses (5 mg daily as needed.). I quit the ethambutol fairly quickly because of my fear of side effects. Within a month, it became impossible to obtain clofazimine in the US because Novartis, the drug company that made clofazimine, discontinued selling it in the US and donated their stock to agencies that treat leprosy, largely through the World Health Organization. However, I was able to obtain clofazimine via the US government under a “compassionate use” protocol.
I took the three medications—rifabutin, clofazimine, and clarithromycin—from December, 2004 until May of 2010. I don’t recall when I stopped the mesalamine, probably around 2007. I had no side effects. By the summer of 2005, I also had no trace of GI disease. Repeat colonoscopy in 2007 was entirely normal except for one polyp that was removed. I retained a bit of adrenal insufficiency and took small doses of hydrocortisone (5 mg or less). I never took prednisone again. In the fall of 2009 I closed my psychiatric practice and retired to a small, rural village in Costa Rica. Despite eating Third World food, for five years, including local milk, seafood and meats, as well as diverse foods sold in fiestas and tiny pulperias (corner grocery stores) I have not had a single day of abdominal cramps or diarrhea. I also no longer need or take hydrocortisone, unless I have a severe stressor. I had a repeat colonoscopy in July, 2013, and it was entirely normal, with no sign of Crohn’s. I have no systemic signs of inflammation at all: my ESR and CRP are normal and have been normal since 2005.
Dr. Borody and I have discussed the “c word”: Am I cured? I have no evidence of GI or inflammatory process, either by symptoms or regular blood tests looking for inflammatory parameters. Is it possible that receiving the antibiotics just after and even overlapping one infusion of infliximab eliminated MAP from my gut? I suppose we will never know.
Although in itself my story proves nothing, it should at least provoke serious thought among MAP researchers and especially among skeptical gastroenterologists, who overwhelmingly adhere to the traditional view that Crohn’s is primarily if not exclusively an autoimmune disease, or a disease caused by a "dysbiosis" or disruption of the GI microbiome. The microbiome may be disrupted, but a single pathogen to blame: MAP. I thank Drs. Borody, my own physician, and all of the MAP researchers for saving my life. It is highly unlikely that my recovery was unrelated to antibiotic anti-MAP therapy. In fact, I believe that the opposite is true: I strongly suspect that I had a serious MAP infection that responded beautifully to appropriate treatment. I am also aware that the idea of a Crohn’s-MAP connection is controversial, not only at the purely scientific level, but because it goes counter to current “best practices” in gastroenterology. Hospitals, drug companies, gastroenterologists and the beef and dairy industries profit greatly from the status quo, based as it is on the regnant medical “wisdom” that essentially discounts MAP as a human pathogen.
Research into the human biome has come a long way since 2005. In 2007, a study was published in Australia by Dr. Selby and others that discounted the treatment of Crohn’s with antibiotics. That study was roundly criticized for many reasons, including poor study design. Now a more definitive study is being done by RedHillBio, an Israeli pharmaceutical company that purchased the patent to the triple antibiotic combination developed by Dr. Borody.
Red Hill hopes to enroll over 300 patients worldwide, to prove one way or the other if this therapy program works. Contact them if you wish to participate.
Nobody knows for sure at this point if MAP is a zoonotic disease. I think that it is, but many other people disagree. Nobody knows for sure if the triple antibiotic protocol for Crohn’s is better than the usual treatments with immune suppressant medications. However, common sense suggests that eating sick cows is stupid. There is no way that the USA or other countries should continue to allow cows that test positive for Johne’s disease to be used for food or milk. Its just common sense, a “yuk factor.” We should not eat meat or drink milk from sick animals, and we should not allow children to consume milk or meat from sick animals. The precautionary principle states that when a problem is very large, such as nuclear war or global warming, it is expedient and appropriate to take steps to prevent it, even if 100% proof of the phenomenon is lacking. It is only common sense, in keeping with the precautionary principle, to eliminate sick animals from the human food chain.
I strongly believe that if nothing else, my personal experience should encourage researchers as well as clinical physicians to question the traditional paradigm and to explore the possibility that in some cases at least, there may be an intimate connection between MAP and Crohn’s Disease.
For those who seek more information, I suggest using http://scholar.google.com and search “MAP Crohn’s”. In addition, http://www.johnes.org and Dr. Borody’s web site, the Centre for Digestive Diseases, http://www.cdd.com.au/ may be useful.
Now please go on to part 3 of my series on Crohn's: https://my.psychologytoday.com/blog/pura-vida/201402/treating-crohns-disease
After reading all 3 blogs, if you have specific questions, do not hesitate to ask!
For those of my readers with Crohn’s, I wish you all a complete and speedy recovery and full health.