Crohn's Disease Forum » Your Story » Long Crohn's journey; recent improvement with AMAT therapy

05-23-2017, 09:10 AM   #1
Join Date: Aug 2015
Long Crohn's journey; recent improvement with AMAT therapy


My loved one has been diagnosed for Crohn's for 20 years. Past 3 years have been the worst, but we've seen significant improvement in the past 6 months under AMAT therapy. One more anecdote among many such cases that have shown great improvement using AMAT, which treats a [the] likely cause of Crohn's, not just symptoms.

More details:
9 ER visits in the 2.5 years prior to October 2016; 7 of those ER visits resulted in multi-day hospitalizations to stabilize her condition. The 2.5-year period was a series of acute flare-ups; prednisone, anti-nausea meds, and pain killers. It led to Remicade infusions, which were followed shortly by severe upper respiratory system infections. Acute muscle and joint pain. Opioid withdrawal symptoms. 20-years of Crohn's likely caused Crohn's-induced spondylarthritus (similar to ankylosing spondylitis, but they named it differently because it relates to Crohn's). The side effects from chronic usage of prednisone, remicade, opioids, and the disease itself were debilitating physically and emotionally.

Finally, we acted outside of the mainstream medical advice we've been following for years--advice that is predicated on treating symptoms, not causes.

We had read scores of papers on MAP as a causal agent in Crohn's, and antimicrobial therapies that had been developed to target MAP, which is a tough bug to kill. AMAT in particular. To keep this from getting too long, I'll avoid defining terms herein. See here and here for primers.

Having met ignorance, dismissiveness, and disdain from a series of primary gastroenterologists on the subject, we took it upon ourselves to get tested for MAP, fed-exing blood sample to John Aikin's lab in New Zealand. After a positive detection, we made an appointment with one of the few U.S. GI docs we knew of that was a proponent of the MAP-Crohn's theory, and who reported some success. Dr. William Chamberlin in Las Cruces, NM. Chamberlin prescribed essentially the triple antibiotic therapy that Dr. Borody of Australia had developed (see Borody's papers referenced here).

Wife tolerated the meds, and slowly started to improve. She's been taking them for 7 months. Energy level has improved; Crohn's symptoms have improved. Comparison of CT's from last fall showed 20-cm of severe inflammation in small intestine; recent CT showed that the inflamed region has shrunk to 3 cm, near the very end of small intestine.

Is AMAT an instant miracle? No. The chronic inflammation has resulted in tissue damage, and wife needs to carefully watch what she eats. Not too much fiber or texture in her diet, or she risks a blockage. But numerous symptoms appear to be getting better.

We are hopeful that AMAT is a bridge therapy that addresses the root cause of Crohn's. "Bridge therapy" because we watch with great interest the development of a vaccine, which is now in phase-1 trials in the U.K.

I share this news with the hopes that others may benefit. Those interested in pursuing this face an uphill battle in any discussions with their gastroenterologist. But read up, persist, and seek out doctors who are more open minded and up-to-date on the literature. These web links are good places to start your journey.

05-23-2017, 01:16 PM   #2
Senior Member
Join Date: May 2017
Location: Denmark

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Hi Mark
Congratulations on you guys jumping in and getting your wife tested, and following the result, starting AMAT. Most of all though, thank you so much for sharing your story. The GI / infection doctors I have consulted about this all demonstrate complete absence of any knowledge of - or interest in - the current research regarding MAP and Crohns.
These kind of testimonials confirm we are not seeing ghosts when reading all the academic papers on the causal relationship which appear these days. Just this week I managed to get blood through to John Aitken in New Zealand, and I am now waiting for the test result. If it is positive I will try to get myself on the AMAT. We don't have pioneers like Borody and Chamberlain in Denmark, but hopefully my regular GI will prescribe it.

Please keep posting!
(here is my story)

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