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Treating Crohn's Disease

People with Crohn's Disease may want to look into the RedHill Bio Study of antibiotics for Crohn's Disease. Read More

The Crohn's MAP Vaccine

Hi Judith,

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:
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0001229

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:
https://www.facebook.com/crohnsmapvaccine?ref=hl

Your support would be very much appreciated.

Best wishes, Amy Hermon-Taylor

Vaccine against MAP to PREVENT Crohn's

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!

crohns free

Hi judith,
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.

clofazimine

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.

Crohn's MAP Vaccine

Hi Judith,

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 info@crohnsmapvaccine.com

Thanks again. I look forward to hearing from you.
Amy

Clofazimine in the UK

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

Triple Antibiotic Success

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.

Success in Treating Crohn's Disease

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.

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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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