I was diagnosed with Ulcerative Colitis as a freshman in college. Within 5 years the illness progressed to Crohn’s Disease which at its height had me running to the bathroom up to 30 times per day to have diarrhea or expel blood. Traditional maintenance medications would not control my disease. Steroids were intolerable and didn’t put me into remission. Immunosuppressants caused a sore throat that lasted 6 months along with a positive mono test. I finally stabilized on a supplement called Ambrotose which kept my symptoms at bay for 5 years until Entocort arrived on the scene. This didn’t cause the systemic problems associated with oral steroids, but whilst I finally enjoyed remission for the first time since my diagnosis, I became steroid-dependant; three attempts to wean off steroids failed.
In the fall of 2008, I suffered a severe flare and was admitted to hospital. My GI specialist had spoken with me about Remicade previously, but now she wanted me leaving the hospital with a commitment to start a biologic that would turn my immune system down and make me susceptible to opportunistic infection. I was afraid, particularly as my husband’s former partner had died of Bacterial Meningitis while on an immunosuppressant for Lupus.
Several years prior, this same GI doctor had referred me to Dr Christopher Foley, an internist who practiced functional medicine and helped us manage my disease with nutrition and supplementation. We had a pivotal conversation where he pointed me toward anti-MAP research and a website (PARA) to promote awareness of MAP’s role in Crohn’s Disease. I asked him whether he believed antibiotics, steroids, or biologics to be the safest option for long term treatment and he endorsed the antibiotic route as potentially the least risky. During my hospital stay I asked to be tested for MAP and was written off. Testing was not available to the general public yet and the GI community was reticent to believe Crohn’s was anything but the result of an overactive immune system. My GI specialist was unwilling to continue working with me because I chose not to pursue starting a biologic which is still the standard of care. Neither was she open to collaborating on treatment approaches with Dr Foley, whom she had referred me to see. So in the middle of my health crisis I lost the doctor I had depended on for 12 years.
Dr Foley prescribed me the 3 antibiotics, following the treatment protocol used in the trials of anti-MAP therapy for Crohn’s. I remember sobbing my eyes out the night I received the call from him telling me he would get me the antibiotics.
I have been on the anti-MAP treatment since fall of 2008. Within a couple months of starting treatment I was symptom free and all of my colonoscopies since have shown little to no active disease. I was finally able to wean off steroids. This fall will mark six years on anti-MAP therapy. While I have not been able to cure my disease, I remain in clinical remission and symptom free on this treatment.
I had the good fortune of attending the International Colloquium on Mycobacterium Avium Paratuberculosis at the University of MN in 2009. There I was able to meet lead researchers in the field as well as doctors who were already prescribing these medications to their patients. I read some of the scientific articles written by John Hermon-Taylor which convinced me of the MAP Crohn’s connection. I wrote to him with some questions related to anti-MAP treatment and he promptly responded to my questions and updated me on the current status of the vaccine research. He is one of a few professionals half way around the world who has offered his knowledge, time, and warm regards, despite never meeting me or receiving money from me. When I corresponded with him I felt the deep level of care and professional commitment he has for Crohn’s sufferers all over the world. I go to bed at night thankful that someone like him is fighting for someone like me. Over the last year the antibiotics have become increasingly difficult to tolerate. I experienced little to no side effects for years but now they are taking a toll on my stomach. The creation of a vaccine would likely solve this problem.
I fully support the work of Professor John Hermon-Taylor. We have worked together for nearly 20 years. I do not work on the vaccine myself but have focused on the exposure of humans to Mycobacterium avium subspecies paratuberculosis from a range of environmental sources. We have shown that due to agricultural and animal husbandry practices that Mycobacterium aviumsubspecies paratuberculosis is widespread in the environment. It cannot be removed so logically developing a vaccine for susceptible people has to be the next step to provide protection against exposure and infection by these multi-host pathogens.
I was diagnosed with Crohn’s Disease in 2004. After the 'shock' wore off, I began researching the disease and came across Borody's and Hermon-Taylor’s research. This prompted me to ask my GI specialist for a blood test to check for MAP. He ignored my requests, dismissed the compelling evidence and continued treating me with steroids and 5-ASA's. It wasn’t long before these treatments were no longer effective... not to mention the side effects. I took matters into my own hands and sought out Dr. Saleh Naser at UCF. After several months of communication, he finally agreed to test me for MAP (I can’t thank him enough!). Needless to say, I tested positive and finally had the proof. I took the results of the MAP positive test to an Infectious Disease specialist and he began treating me with anti-MAP antibiotics under the premise that I have an ‘atypical mycobacterium infection’. The logic being the MAC (Mycobacterium Avium Complex) is recognized as disease-causing in humans, thereby bypassing the Crohn’s/MAP argument. The protocol includes clarithromycin, rifabutin and clofazimine (the same combo found in RHB-104). Since beginning this treatment, I have been in remission. In short, I had to do an ‘end around’ on traditional thinking to get the correct treatment. While it has saved me from adalimumab and surgery, it has not been able to eradicate the infection. My hope is that it will sustain me until the vaccine is available. Thanks again to Amy and her father for their tireless efforts!!!
I spoke to [Professor Hermon-Taylor] when I was at a very low point. I was 6 stone and steadily getting more and more poorly. He is an inspiring man. I took the rifabutin/clarithromycin combo and under the care of the wonderful Jeremy Sanderson and his team I was better within months. That phone call saved my life and I'm eternally grateful for his kind words,time and advice. It was only by pure chance that I spoke to him over the phone at his office. I had phoned the hospital and asked to be put through and was just very, very lucky. Please pass on my thanks from the bottom of my heart. That was over 10 years ago and I've been well since.
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