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Crohn's Disease Forum » Your Story » Success Stories » Tried AMAT; it's working


11-30-2017, 01:51 PM   #1
MarkB
 
Join Date: Aug 2015
Tried AMAT; it's working

After my wife's 20 years of Crohn's, things got much worse 2-3 years ago. Nine ER visits; 7 resulted in multi-day hospitalizations. Prone to small bowel blockage after years of inflammation and scarring.

During the worst years, she was up and down on prednisone and other steroids; tried infliximab (Remicade), which weakened her immune system (resulting in severe upper respiratory infections) and didn't touch the Crohn's; got very close to surgery, but her docs wanted to see the inflammation reduced before surgery so they wouldn't have to resect such a long (20+ cm) section of bowel. She was despondent.

After much research on MAP and AMAT, she drew a blood sample to send to John Aitken's lab in New Zealand. Positive hit on MAP.

She then traveled to Las Cruces, NM to get AMAT prescriptions from Dr. Chamberlin (now, unfortunately retired).

13 months ago, started AMAT. (Her version: clarithromycin, Rifampin, clofazimine.)

6 months ago, her inflammation had nearly vanished (as revealed in CT scan). Her doc at Mayo was amazed.

Now, 13 months after starting AMAT, her Crohn's symptoms are pretty much gone, but she still has to be careful about what she eats. Her doc at Mayo is warming up to the therapy, because it worked for my wife. She (the Mayo doc) has been talking with Borody about it, but reticent to accept it because it's outside the standard of care, and she feels there are still some holes in the MAP case...

After much research and suffering, we finally took the plunge. It's remarkably improved my wife's condition. No more biologics, no more steroids, and she has evaded the surgeon.

I'd suggest to anyone with Crohn's to start educating yourself on the topic, and don't just ask your doctor. Do your own reading and research. Your gastroenterologist, at present, is likely to be either ignorant, dismissive, or outright hostile to the MAP-Crohn's connection. Don't let that stop you from educating yourself.

A couple good resources to start:
https://humanpara.org/
http://www.crohnsmapvaccine.com/ -- especially the Learn More > Core Literature download.

Good luck and health to you.
11-30-2017, 11:42 PM   #2
dzwilks
 
Join Date: Nov 2017
Location: Cleveland heights, Ohio
Hi Mark, I tried an anti MAP protocol when I was first diagnosed with Crohn's about 18 years ago. I took rifabutin and biaxin for about 2 years. I had surgery after one year on the protocol. That did not stop me from continuing for another year. After my first post surgery colonoscopy, however, my doctor told me that I had "about average recurrence" of the Crohn's at the resection. At that point I decided to switch protocols to another antibiotic called rifaximin (xifaxan). I was inspired to both protocols because of a doctor in Tampa named Shafran. I also culture my own yogurt from vsl3 based on his protocol. I've been on refaximin and vsl3 for about 15 years. Recently the Crohn's has gotten worse so I started Humira at my doctor's encouragement. I'm not letting go of the rifaximin because although Crohn's may be an auto immune disease, it is certainly affected by the flora in the gut. May your wife continue to see relief!

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