People with Crohn's Disease may want to look into the RedHill Bio Study of antibiotics for Crohn's Disease. Read More
I am the daughter of Prof. John Hermon-Taylor, whose research into the link between MAP and Crohn's you have cited many times in your own writings on the subject. I am a doctor myself (GP/family physician) and am as convinced as you are that MAP is the cause of Crohn's.
In your article 'The new paradigm for Crohn's Disease: A call to action' from 2005, one of your recommended actions was that a human vaccine against MAP should be developed. Nine years on, that vaccine has been made by my father and is sitting in the freezer in King's College London, awaiting the funding to take it to manufacture and human trials. It is a modern DNA vaccine; a treatment vaccine designed to stimulate T-cells to search out and destroy MAP-infected cells. So far, a trial in mice showed it to be highly effective against MAP:
A second larger study in cattle demonstrated its efficacy even more convincingly (awaiting publication). There were no adverse effects reported in either study.
I am writing to you because I have started a support group 'Crohn's MAP Vaccine' to raise awareness of the Vaccine research, of MAP as the cause of Crohn's and to help raise the funds for the trial of the vaccine in humans and a new MAP diagnostic test for humans which my father is currently developing. Would you help us raise awareness? Our website is currently under construction but we have a live facebook page if you would like to have a look:
Your support would be very much appreciated.
Best wishes, Amy Hermon-Taylor
Thank you, Amy, for writing and for introducing yourself. I met your father in Salem, Massachusetts, in 2007 at a meeting of the American Society for Microbiology, and enjoyed his company very much. I treasure his work, knowing that he has not only pursued MAP research for decades, and treated hundreds if not thousands of Crohn's sufferers, but he also trained Dr. Borody and other scientists who have followed in his footsteps. Yet again, it appears that he is out in front, leading the way to preventing Crohn's Disease, not merely treating it.
A previous person posted a link to your web site on January 14, 2014, on this blog. I'm happy to endorse your father's work, I "liked" your page on Facebook, and I would happily speak out on the merits of this approach.
It is very difficult to get funding or support for publishing research about MAP and Crohn's. I am grateful to psychologytoday.com for allowing us to have this conversation online and without censorship.
Unless or until official government agencies and international agencies such as the "OneHealth Initiative" of the World Organization for Animal Health recognize MAP as a zoonotic pathogen - a germ that spreads from animals to people, and perhaps even back again! - it will be difficult for our voices to be heard and for scientists such as Dr. John Hermon-Taylor to be generously funded. Meanwhile, you and I each play our little parts, trying to raise awareness. It is like shouting fire, fire - and the authorities say, hush, there is no fire. A coverup. Amy, I admire your website, your energy to run a marathon in support of John's research, and I will collaborate with you or your father in any way I can!
My name is Carl Williams im 40 years old and suffered with crohns disease for the past 15 years, progressively going through a cocktail of drugs which didnt work and surgery which provided temp relief.
After 2 years of demanding this antibiotic regime from my physician, he finally prescribed Prof Herman Taylor double therapy clarithromycin and rifabutin with the addition of metronidazole, I believe he only prescribed this treatment because I have recently been diagnosed with a very rare blood disorder called amyloidosis, which in my case was being cased by my crohns inflamation.
within 2 months of being on this antibiotic regime, I not only feel great but my crp has gone from 27 to 3. my SSA amyloidosis has gone from 139 to 10. both of which are 'normal levels' for everyone.
my question to you: my physician has said that he cannot continue with metronidazole due to sever side effects with usage over 3 months. I am 2 weeks away from this three month deadline. I would like to replace this antibiotic with clofazimine, which is professor Borody triple therapy. However, Clofazimine is not available in the uk!! do you have any idea if I can get this drug directly from a manufacturer? or from Prof Borody?
I would like to follow your footsteps and intend to raise awareness in the uk and in particularly wales where i reside. this treatment should be a standard treatment for crohns sufferers. Carry on the good work.
I am writing to Carl, regarding the question of obtaining clofazimine.
For some reason, this morning, the reply section of my blog is not working, so I am taking this as an opportunity to expound on a complicated subject, the matter of the medicine clofazimine.
First, thanks so much to Carl for writing to me and to psychologytoday.com about your success story! Congratulations!
Carl relates that he had great success with a triple combination of rifabutin, clarithromycin, and metronidazole. For various reasons now his doctor wants to take him off metronidazole and he wonders how to obtain clofazimine since it is not available in the United Kingdom.
I do have several thoughts: metronidazole is in fact rife with side effects, and I can see why your own doc does not want to continue it. For example you could get very sick if you had a little bit of vanilla extract with an alcohol base. Not good. Metronidazole is an unpleasant medicine for many reasons, and now even when I hear of people or animals with giardia, I don’t recommend it. I wouldn’t take it unless there was no alternative. In Costa Rica, secnidazole is available for giardia, and does a really great job quickly. But Crohn’s is not caused by giardia!!! So I don’t see much justification for either drug for Crohn's.
Many people have done ok with just the two antibiotics, rifabutin and clarithromycin. It is possible you don't need 3 medicines. Maybe the clofazimine would be unnecessary, since metronidazole (Flagyl) is not usually effective against MAP.
Clofazimine is an old fashioned medicine initially designed to treat leprosy. It used to be manufactured by Novartis in the US, and was cheap and not controversial in any way. However, in 2004, Novartis decided it was an orphan drug, not worth the effort to produce and maintain, and so they gave their stock to the World Health Organization. One can still obtain clofazimine in the US if you are diagnosed with leprosy.
In India, Pakistan, and other countries where leprosy is a problem, clofazimine is available and costs nearly nothing.
In the laboratory, it is clear – clofazimine is the gold standard medicine for killing MAP. I visited a laboratory where MAP is routinely cultured, and the scientist showed me agar plates, where map was being cultured, and then big spots where clofazimine had been applied. Nothing beats MAP in the lab like clofazimine.
Dr. Borody added clofazimine to his protocol because he had extensive experience working with it when he worked in a leper colony, treating leprosy. I think it was a brilliant decision, and the medication Myoconda, now being tested by RedHillBio, contains clofazimine.
However, it is not essential. There are doctors here in the US who do not include clofazimine because you can’t just write a prescription for it.
You may be able to obtain clofazimine from Dr. Borody, or in my 3rd post on Crohn's I listed the contact information to buy it from a Swiss distributor. It used to be available on pharmacychecker.com, compounded in India. However, I would people discuss this with a personal physician before making a decision. You may be just fine on the 2 medicines, why add another? Clofazimine can contribute to making your skin tan colored (more than the rifabutin) and can add crystals into the liquid part of your eye. I would talk to your doctor, and maybe have your doctor write to Dr. John H-T or Dr. Borody to make an informed decision before you leap into a new medicine that may not be necessary.
I am delighted to hear about success! If you have found a good doctor willing to treat for MAP, the world would like to know that doctor’s name if you can share it. Many people are looking for personal physicians. You may also want to look at Amy Hermon-Taylor's recent letter to me, about research into a new MAP vaccine to prevent Crohn's. Best wishes for a full and complete recovery.
Many thanks for your reply. A cover up is right. It's a shame no-one seems to have learned the lessons from the H. pylori affair (incidentally, do you know of a good article describing what happened to Barry Marshall and Robin Warren -I know in outline but I'd love to read the details).
I really admire your writing skills -I think you argue the case for MAP as the cause of Crohn's very persuasively and your knowledge of the literature is impressive. Having grown up with this as a regular dinner-time topic of conversation, I have had the luxury of not having to do all the detective work that you have obviously had to do to get to the truth! I admire your measured approach too... if I had Crohn's myself I would be boiling mad that something this important was being covered up.
I'd like to tell you more about what we are planning in terms of raising awareness of the MAP Vaccine and of MAP as the cause of Crohn's -but it probably wouldn't be appropriate to post this here. Could you let me have your email address? Either send it to message me on the facebook page (one of the weird things about fb pages is that you cannot message someone who 'likes' your page unless they have sent you a message first) or email@example.com
Thanks again. I look forward to hearing from you.
Hi Judith and Carl,
Prof. Hermon-Taylor retired from clinical practice some time ago and is now purely lab-based -so he might not be up to date on any supply issues with clofazimine in the UK (although in the past he treated many of his patients with anti-MAP antibiotics). I would suggest that you get your doctor to contact Dr Jeremy Sanderson, Consultant Gastroenterologist at St Thomas's Hospital in London, (he is JHT's close colleague and collaborator on the clinical side) to ask his advice. I know he has patients who are currently on clofazimine so he should be able to advise on how to get hold of it and give guidance on prescribing. The British National Formulary states that it is available on a 'named-patient basis' only.
Also Judith is right that many people have done well with just the two antibiotics and you may not need the third.
Best wishes, Dr Amy Hermon-Taylor
We just want to add support for trying Dr. Borody's regimen in Crohn's and to thank Dr. Lipton for helping point us in this direction. Our daughter developed Crohn's at age 16 and tried a variety of other measures including two anti-TNF drugs (Remicade, Humira). She has been seen at two universities, one of which proposed colectomy as an option. Of note is that her disease so far has been limited to her colon, but is biopsy proven to be Crohn's and not ulcerative colitis. She also has had extensive perianal disease. She began Dr. Borody's regimen under the supervision of Dr. Joseph Brasco in Huntsville, AL in Oct, 2012 and began to improve within a couple of weeks. She has tolerated the regimen very well, and actually enjoys the clofazimine induced "tan". Her sedimentation rate has dropped from over 100 to 15, her fistulae have healed, she eats whatever she wants and has resumed her education. She also takes a probiotic. For now, she continues all three drugs, and it is not clear when we can start to reduce or eliminate one or more. Perhaps further research will guide us in the future.
Of note also is that our daughter did try a variety of diets and alternative therapies, including acupuncture, extensive work with a skilled Chinese herbalist (temporary relief, mostly of her fistulae) and low dose naltrexone, which caused severe insomnia and did not help.
We are grateful to the anti-MAP community and particularly Dr. Brasco, a genuinely open-minded and kind man. Our daughter has her life back, and we will continue to follow this work with interest.
Thank you, Lillian and Donald! I really appreciate hearing success stories, and I think that other people value these comments as well.
Since it is very difficult to get comments about MAP and Crohn's into the public eye, I value this blog as a place where people can post success stories, questions, or problems. Negative outcomes are important to post, as well as success stories.
In particular, if you have been successful, and have a physician who learned the Borody protocol and was willing and able to be of help, could you please obtain that physician's consent and then post their name, phone number, web site or other contact information?
I have many requests from all over the world from people who need a sympathetic physician. If you know of somebody, please post that information if that doctor is willing.
I am really happy to hear that Donald and Lillian Lurye's daughter had a good outcome!
Thank you for sharing.
Hi Dr. Lipton,
Your article is beyond interesting. I am intrigued. I was diagnosed with Crohns in 2008 and only achieved temporary remission of 6 months or less. However the logic behind your reasoning is backed by a lot of respectable research online so I have made contact with RedMills Bio to participate in their clinical trials. However, I am hesitant to join because I would have to stop taking Remicade which for me has worked OK. Not to mention there is a 50/50 chance of receiving only a placebo. So I wonder how you convinced your GI to prescribe these anti-MAP drugs? I saw in your first article that your PCP played a big part. I'd just like some guidance on how to discuss this and if anyone knows of any Dr's in the south florida area that have been willing to treat MAP as a cause for Crohns, please let me know. Thanks again for your article and hopefully I will be able to write my own succes story to you soon.
Somebody wrote to me with the following remarks:
"Your article is beyond interesting. I am intrigued. I was diagnosed with
Crohns in 2008 and only achieved temporary remission of 6 months or less.
However the logic behind your reasoning is backed by a lot of respectable
research online so I have made contact with RedMills Bio to participate in
their clinical trials. However, I am hesitant to join because I would have to
stop taking Remicade which for me has worked OK. Not to mention there is a
50/50 chance of receiving only a placebo. So I wonder how you convinced your
GI to prescribe these anti-MAP drugs? I saw in your first article that your
PCP played a big part. I'd just like some guidance on how to discuss this and
if anyone knows of any Dr's in the south florida area that have been willing
to treat MAP as a cause for Crohn's, please let me know. Thanks again for your
article and hopefully I will be able to write my own success story to you
I can't find that comment here, but I will reply here. I have several responses:
1. I have said, over and over, do not expect that you will easily find a GI to treat you for a MAP infection. To this day, in 2014, 10 years after my severe episode of Crohn's, my own GI is not fully on board with MAP treatment. I see him only for screening colonoscopies, and those have been entirely normal. My helper and treating physician was my primary care doctor, an internist. If you want help, you probably have to educate yourself, and then personally educate a primary care doctor (internist or family doctor) so that person can prescribe the medications and monitor you. If you find yourself in that situation - you have Crohn's, you have found a primary care doctor - please have that doctor send me a note and I will link that doctor to Dr. Borody. What I did in 2004 was to use the search links I've provided on this post; print them out; and take them to my primary care doctor. Then I gave her a phone card to call Australia and talk it over with Dr. Borody. The rest is history.
2. I am not telling anybody to go off Remicade or other treatments. And it is true, that if you participate in a clinical trial, you will have to follow the instructions for how the trial works. Fortunately, Red Hill does not allow Remicade or other anti-TNF drugs because thay would mess up the data. Furthermore, you would have a 50-50 chance of being on a placebo. However, at this point in time, if you have Crohn's and you want to be treated for MAP, you have 2 choices: either find your own doctor, or join Red Hill. Unless the studies are done, this treatment will never be available to the general population.
Dear Dr. Lipton
I was diagnosed with Crohn's in 2003. I had several server blockages which resulted in hospitalisation. In 2004 I had surgery which removed my terminal ileum, valve and reconnected to my colon. In the last 10 years I have been on Pentasa only. My last colonoscopy was back in 2009 which showed mild redness.
I have recently not been great and this has encouraged me to do a lot of reading. I find the MAP theory incredibly plausible, this combined with all the recent work into genetic mutations of the immune system of Crohn's sufferers (NOD2 etc). There is so much evidence that points this way and its great reading your blog as proof of principal. I guess that some people are just genetically susceptible to the bacteria.
I do have one question about gut flora. It has been shown that in Crohn's disease the flora is compromised usually showing a reduction in diversity of bacteria, fewer good species and more pathogenic species. Following the use anti-MAP protocol, does the flora recover? What caused the inbalance in flora in the first place?
My son was diagnosed with Crohns when he was 15 years old, but probably had it since he was about 8 years old... as that is when his first symptoms began. He now is 23 years old. He has taken all the usual oral meds for Crohns and then moved on to the Biologics, first Remicade, then Humira and now is on a double dose of Cimzia. He has had about 4 hospitalizations and can't seem to get off of Prednisone. At one time he was on it for an entire year and now has Osteoporosis as well as Osteopenia. We are seeing a new doctor out of Gainesville…but unfortunately the next plan is to add more drugs along with the Cimzia and if that doesn't work Tysabri…which makes me so afraid for him of all the possible side effects. He was in the hospital with a terrible flare in Jan 2014…just came off the Prednisone and now is flaring again. He has lost so much weight and I am so concerned for him. The Borody regimen makes perfect since to me and at this point I feel like it is definitely worth a try for my son. We live in the Tampa Bay Area in Land O Lakes. If you know of a doctor locally that you think would be willing to treat my son with this regimen…it would be so appreciated. Thank you so much for your time.
Our daughter has done very well with the anti-map regimen. She suffered for ten years on and off prednisone and all the biologics that really didn't work that well for her. Remicade helped her for a few years. We tried herbal remedies which did help some but not as well as she is doing on the anti-map.
I am not sure if you will find a doctor in the Tampa Bay Area but there is a doctor in Huntsville, Al that is willing to treat Crohn's patients. He will prescribe the anti-map drugs for your son as long as you have a local GI doctor or family doctor that will order his recommended blood tests, We did not have a problem finding a local doctor to do this for us.
The GI doctor in Huntsville is Dr. Brasco. You can reach him at 256-519-4437. We live in Chicago and were willing to make the trip to see him. At first we took our daughter to see Dr. Brasco every six months for the first year and every year thereafter.
This has been the first time we felt hopeful for our daughter that she could regain her life again. If you like, my husband or I are available for private contact.
I have had Crohn's disease since 2003, and possibly undiagnosed before that. I have been able to keep it in remission for the most part by watching my diet and lifestyle and water intake. I have had flares when I eat something that has cheese...one bite will set me off for days of pain and inflammation. If I take any birth control, I can expect a flare from that as well (the first time I landed in the hospital it was so bad). Now after 3 pregnancies, my hormones are a mess (is there a hormonal link?) and none of my tried and true remedies and lifestyle ways are able to rid my body of this flare.
I came across your research and it makes a lot of sense (especially since cheese ALWAYS set me off). I am hopeful that this will be the answer for me, and I will be calling Dr. Brasco tomorrow!
I have been to the point where death is desirable, but I have so much to live for. Thank you for sharing and researching. I hope this is my answer!
My daughter who is now aged ten was diagnosed with crohns in 2011, she has been prescribed pentasa, azathioprine, prednisolone and the milkshake only diet none of these have worked and usually her symptoms would return as the dosage for prednisolone went down to three, leading to her being hospitalised at least twice a year due to dehydration and anaemia.
I really pushed for an appointment with an infection specialists when one of her blood tests came back borderline TB. The specialist discovered a mycobacterium and prescribed my daughter azithromycin and cyprofloxacin for three months.
Since this she has been well for 7 months the best she has looked and felt since 2010.
I fully support prof Hermon-Taylor and his daughters work and I am helping to raise funds for the human trials of the vaccine. I urge people looking at this page to check crohns map vaccine on Facebook.
I heard of your case through Frazier Cunningham many years ago, who I believe also tried the 3 antibiotics but did not experience remission. I wrote to the study practitioners in Houston, but my concern with the trial is 6 months may not be enough on the antibiotics for efficacy. Do you know how long most people with success are staying on the antibiotics? Also, I may be able to convince a local doctor to prescribe antibiotics, but I am wondering what "cocktail" would be most effective, or if it would be prudent to wait until clofazipine can be located?
I don't know how many months the RedHillBio study is using. In my case, I went into remission within 6 months of commencing treatment, but then I was on the triple antibiotics for 5 full years afterwards! 2005-2010. Most of the people I know who are success stories are staying on the antibiotics for a very long period of time.
I can't comment on the "cocktail" issue, but my suggestion is that your local doctor contact Dr. Borody directly at the Centre for Digestive Diseases, http://www.cdd.com.au/
Dr. Borody can help people get clofazimine, or you can order it from Switzerland, as I indicated in a previous post.
You could even go to Australia and meet with Dr. Borody yourself! If I were starting at the beginning, that is what I would do. Save my money, and use it to go to the most experienced expert in the field.
Dear Dr Amy Hermon-Taylor.
My husband has suffered from Crohns since he was 26 he had 2 resections, and various stays in intensive care he is now 69 and very well.
I met your father in 2000 at St Thomas Hospital when my husband was very ill with Crohns. He is an amazing I was at my wits end with worry as he was so ill. Your father said a chocolate ant would have trouble getting through his intestine. He supervised his third re-section with a Dr Mudan with great success. Your Father suggested he used Soya Milk which we changed to after his operation he uses honey instead of sugar. We have never looked back he is able to eat almost any food we try not too much cheese at your Fathers advice. I cannot thank him enough it has certainly worked for us. He just had to recover from the op and has been so well since we are able to eat out if we wish something he could never do before. He is under the supervision of Dr Sanderson at St Thomas's Hospital but they say he is doing so well we can phone if we feel we need to speak with someone. Thank your father personally for us.
Thank you so much for your kind words which I will certainly pass on to my father. I'm glad to hear that your husband has kept so well and that you have been under the care of Dr Sanderson who I know to be both an excellent gastroenterologist and a very nice man.
Thank you also to Dr Lipton for allowing us to have this conversation on her website. If you would like to contact me directly, you can email me at firstname.lastname@example.org
I believe that MAP will be proven as the cause of Crohn's disease within the next 3 years, perhaps sooner. Together with a group of people with Crohn's disease and their families, I have set up a website outlining the evidence behind the MAP hypothesis in plain English (referencing the scientific literature should people want to read the papers for themselves) and explaining the research that my father is currently working on... namely a therapeutic vaccine against MAP, designed to treat CD, and a new simple accurate test form MAP in humans.
You can visit the website here: www.crohnsmapvaccine.com
Best wishes, Amy
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Judith Eve Lipton, M.D. is a psychiatrist and book author. She and her husband David Barash have written about sex, war, and human nature.
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