Prof. Borody's Latest Anti-MAP research and how this healed me

Prof. Thomas Borody's latest research from October 2016. He did a small study of AMAT in 8 treatment naive patients. All went into remission between 4-21 weeks. Also, the patients experienced deep mucosal healing. Full ACG poster link and his intro at the link below:

thecrohnsinfection.org/prof-thomas-borody-amat-success-in-treatment-naive-patients/

If the link doesn't work, go to TheCrohnsInfection.org and hit What's New or Presenter Blog (All) to view the post.

For those of you who don't know me (which is probably most!) I have been on Atypical Mycobacteria Antibiotic Therapy (AMAT) for two years now. I was sick for 25 years prior, and had run out of options. I took a flyer on this since it made sense to me, and was in remission in 6 weeks. By about 6-8 months I had full mucosal healing. I haven't had any Crohn's symptoms in 2 years now. It's like I've never had Crohn's. So much better than remission. I'm not saying it will work like this for everyone, and Crohn's is very complex so will react differently in people, but for those of you who are intrigued or have run out of treatments, it's something to look into. I figure the more I know, the better.

My meds currently are:
1000mg clarithromycin per day
60mg rifampin per day
4.5mg naltrexone at night.

This theory is currently being tested in the Stage 3 FDA RedHill trial. My guess is that it will work well and eventually be approved for Crohn's, but we will see. I know it worked for me and gave me my life back. My hope is that all with this terrible disease will find a path to healing.

Post Edited (irishgal1) : 11/14/2016 6:57:24 AM (GMT-7)

Hi Tea - I fixed the link above so hopefully it will work. Forum posts seem to shorten it for some reason, making it inactive. Let me know if you still have trouble.

As for the naltrexone, that was actually my integrative health MDs idea. I initially started on levofloxicin as well, but after 6 months it was destroying my joints and nerves so I had to go off. This was the substitute. Many on this protocol add clofazimine instead of levo. (The Atypical part of AMAT refers to the human MAP species of mycobacteria being an an atypical form since it's a spheroplast.)

The theory on LDN is that it's an immunomodulator. It blocks the opiate receptors in your brain for about two hours that then overproduce once unblocked. The overproduction is thought to fix broken pathways in your immune system. I know that hMAP is an issue in CD patients because their immune system does not always recognize hMAP as a pathogen and if it does, then it doesn't contain and dispose of it well due to SNP mutations in autophagy. So LDN may help that somewhat. No studies have been done directly with LDN and MAP, but there are a bunch of studies in CD. Plus, it's such a low dose that it's pretty safe. This page has the research and is one I've found to be reliable:
http://www.lowdosenaltrexone.org

As for long term antibiotics, yes, it's a risk. I had side effects in the beginning but nothing now. I figure out of control CD is a risk too, and I'd rather try to hit at the problem causing my CD than treat symptoms alone. Also, people go on similar antibiotics long term for leprosy and TB so it's not that they generally haven't been tested. It's that it's new in CD and I don't know about the interaction with the microbiome that's worrisome. Still, I was barely able to get off the couch before this, and now I'm living a normal life with no symptoms. These two years of being able to take care of my family, work and have full health are worth the uncertainty that lies ahead. Each person has to determine their own comfortability level with this, plus it won't work for all.

Lastly, I think this treatment will become standard in CD in the next couple of years anyway due to the RedHill study. Their pill is even better than what I'm on because the research has shown that their combo works in lower doses synergistically. I've also seen some FMT research that gives me hope that maybe I can repopulate my gut once I go off antibiotics, and there's some other new things like Dietzia and SSI that are 5-10 years out. I just need to hang on long enough for it to all go through trials. AMAT is my best choice for now.

Yes - I think the RedHill study is an excellent option is your husband qualifies, especially due to the new open label arm.