Mycobacterium - MAP

Justanothercp · Sep 12, 2014

I've been researching mycobacterium and anti-MAP treatment as it relates to Crohns.
My question is: if you have been involved in this treatment, what were your primary Crohns symptoms. (ie diarrhea, strictures, fistulas etc.)??
And did the treatment help?

Thanks in advance

the carpenter · Sep 15, 2014

Hello Justanothercp,
I was diagnosed with Crohn's in Sept. of 2013. I've had bowel resections in two places on my small intestine, gall bladder removed and surgery to clean infection from my liver.

A colonoscopy post surgery showed active Crohn's. I was seen by Dr. William Chamberlin in Billings, MT. Dr. Chamberlin is active in the research finding that Crohn's Disease is a MAP infection. My wife attended a research forum at MSUB sponsored by Dr. Chamberlin and Dr Rodrick Chiodini after which we felt anti MAP therapy was the way to go. I have been on three antibiotics since April of 2014, Rifampin, Clorthromyacin, and Levofloxacin. I have had little to no side effects to date and I am feeling better than I did the last few years.

Due to Dr. Chamberlin moving from the area I am currently under the care of my GP who is more than a little nervous concerning the effects of long term antibiotic use. But he is willing to work with me. As I have stated before so far so good. My main complaint at this time is with the acceleration of arthritis and the pain associated with it.

the carpenter · Sep 15, 2014

Hello Justanothercp,

I was diagnosed with Crohn's in Sept. of 2013. I've had bowel resections in two places on my small intestine, gall bladder removed and surgery to clean infection from my liver.

A colonoscopy post surgery showed active Crohn's. I was seen by Dr. William Chamberlin in Billings, MT. Dr. Chamberlin is active in the research finding that Crohn's Disease is a MAP infection. My wife attended a research forum at MSUB (local collage) sponsored by Dr. Chamberlin and Dr Rodrick Chiodini after which we felt anti MAP therapy was the way to go. We found there seemed to be little long term improvement for those on steroid treatments and since they were able to grow MAP bacteria from Crohn's biopsies it made the most sense. I have been on three antibiotics since April of 2014, Rifampin, Clorthromyacin, and Levofloxacin. I have had little to no side effects to date and I am feeling better than I did the last few years.

Due to Dr. Chamberlin moving from the area I am currently under the care of my GP who is more than a little nervous concerning the effects of long term antibiotic use. But he is willing to work with me. As I have stated before so far so good. My main complaint at this time is with the acceleration of Crohn's related arthritis and the pain associated with it.

Good luck with your care
the carpenter

Justanothercp · Sep 15, 2014

Carpenter,
Thank you so much for your response, I really appreciate it. I have the opportunity to join a research program currently underway at my local Kaiser. Before you started taking the antibiotics, were you feeling quite ill or doing okay? Also, did they make you go off your current medicine regime?
The arthritis that you speak of, is that related to the Crohn's or the long term anabiotic use?

Justanothercp · Sep 15, 2014

By the way, I have also had a resection. I have now been on Remicade, Budesinide and Lialda for years with no end in sight. I'm wondering or weighing the options of trying the anabiotic treatment in hopes of getting off of some of my current medicines.

JMC · Sep 16, 2014

I have Crohn's and have had severe fistulas. In 2012 I had a resection (right hemi-colectomy) and a few weeks ago Prof John Hermon-Taylor tested the tissue samples from my resection for MAP (using a yet as unpublished methodology which is still in development). All of my tissue samples, lymph nodes and blood were positive for MAP - I had a systemic infection. I have sent the results to my gastrenterologist and I am thinking about what I do next.

The Crohn's MAP Vaccine website is building into the definitive resource on information about MAP and its treatment, including specialists who are able to provide the currently available anti-biotic treatments, it's a great place to start if you want to know more about the subject.

the carpenter · Sep 19, 2014

Dear justanothercp,

I am not in a research program. I was just fortunate enough to have Dr. Chamberlin be the doctor I saw at the practice I was sent to for a colonoscopy after I had surgery. So much of this (my care) has been crazy luck. I was very ill and near death when a PA I was seeing in our small town clinic finally listened to my wife and sent me in for a CT scan. I was promptly admitted to the hospital and had my first surgery. I left the hospital without medication for Crohn's and was told that at some point I would be put on steroids to control it. I was without insurance at the time and was fortunate that I received the care I did.

Dr Chamberlin and his research associate Dr.Chiodini had worked together in the past and had received a grant from the state of Montana for research. Both doctors have dedicated their careers to the research of Crohn's Disease and gave a very informative presentations at a forum my wife attended. We then searched out and as many papers as we could find that they have written and the peer review of them. So much of their research makes sense that I couldn't ignore it. After the colonoscopy showed that Crohn's was still active I knew I needed to be proactive and on medication or I would at some point be ill again and maybe not as lucky.

I am handling the antibiotics well so far. I have blood work done every six months to monitor levels and effects. The arthritis I have is related to Crohn's Disease (sorry but I do not remember the name given to it) and since my last surgery in January (for gall bladder and liver infection) it has been exacerbated. The arthritis had become more noticeable before I was on antibiotics and I don't feel that the antibiotics are playing a part in it. I have been advised to stay away from steroids as they will only give me short term relief and do more damage than good in the long run.

My biggest concern since Dr. Chamberlin is longer available to me is having a doctor that is willing to follow his treatment plan and understand that it is a MAP infection.

This may sound odd but I'm still not sure just what are Crohn's symptoms and what are symptoms of the bowel resections. Discomfort in my gut yes, diarrhea yes, some days worse than others but for now I am no longer having night fevers and sweats nor am I radically dropping weight or developing fistulas. I have been told that Crohn's presents differently in each person thus making it hard to pin point symptoms.

Good luck with your care and enjoy the good days.
the carpenter

Poppysocks · Sep 19, 2014

JMC said:
I have Crohn's and have had severe fistulas. In 2012 I had a resection (right hemi-colectomy) and a few weeks ago Prof John Hermon-Taylor tested the tissue samples from my resection for MAP (using a yet as unpublished methodology which is still in development). All of my tissue samples, lymph nodes and blood were positive for MAP - I had a systemic infection. I have sent the results to my gastrenterologist and I am thinking about what I do next.

The Crohn's MAP Vaccine website is building into the definitive resource on information about MAP and its treatment, including specialists who are able to provide the currently available anti-biotic treatments, it's a great place to start if you want to know more about the subject.

I wish there was a way I could get tested for map right now. I contacted dr naser at Ucf but I haven't heard back.

Justanothercp · Sep 19, 2014

Poppysocks, keep us posted....

irishgal · May 21, 2015

Hi All - I'm new here and saw your question about getting tested for MAP. I have also been treated by Dr. Chamberlin in conjunction with a local integrative health MD since Nov 2014 and after a couple months I was better, full remission. After 25 years of being sick! No other meds worked and I never had a true remission. I was on the triple AMAT cocktail until recently but am now down to clarithro and rifampin due to levo side effects. Will soon add low dose naltrexone to moderate my immune system and kick out as much MAP as possible.

Before I started on the cocktail, I was tested for MAP, or more accurately what they think is causitive of Crohn's and related to MAP. Dr. Chamberlin sent me to John Aitken's lab in New Zealand. I donated money to fund his invaluable research. I was positive for the MAP related bacteria, and even now I continue to get feedback from him which is helpful to my treatment. His work is critical but he's mostly unfunded!! So sad. Dr. Chamberlin is in New Mexico now and if you wanted a reliable test by the best in the world, he could get you started.

Also, so exciting to tell you about an AMAT/IBD conference in August in Chicago. Dr. Chamberlin, John Aitken and Amy Hermon Taylor are all confirmed speakers. More may be added. Will post additional info when I get it, but what a unique one time opportunity to get all the latest research from the key players in the field.

Hope this info is helpful to someone. It took me forever to stumble over AMAT. I would have been better years earlier! Usually I'm pretty private, but this info demands an audience since it helps where big pharma has failed. I feel that Crohn's patients should be given all of the options and be masters of their own treatment, and not only be pushed to money making drugs. My GI won't even touch this, even though I'm better. Wondering if anyone else has had success with AMAT, Dr. Chamberlin or John's lab in NZ.