Tried AMAT; it's working

[MarkB]

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.

 

[dzwilks]

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!

 

[Nyk24]

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.

Hi Mark hope your wife is still doing well. I started amat last Sunday and seeing some encouraging improvements.

You are right to say GIs can be hostile, ignorant and dismissive to the map theory. So you have to convince the ignorant and dismissive with a well crafted argument. The hostile may have heard of the Selby etc al study in 2007, the only mass trial of amat so far that has been compared to conventional treatments. You have to explain how flawed and misinterpreted that data is!

You are essentially educating the GI and/or putting together a well thought out and researched argument that even if the GI doesn't agree with you he or she may now have respect for you and your wishes.

Lastly before talking to your GI email one of the AMAT experts tell them you are seeing your GI and that your GI may contact for further guidance. Then when you have your consultation you can tell your GI that the AMAT expert is available for further guidance.

Lastly remember whatever your GIs opinions he has to respect your wishes even if he or she disapproves.

Sorry forgot to say please remember that the work load of GIs is tremendous especially here in the UK where there is no time to read the 300 odd publications that come out every year that they could read so they are reliant on peer reading which partly explains the attitudes of some GIs!

 

[Lukesky36]

i hope it keeps working

 

[MarkB]

Haven't plugged in here lately, but for anyone who sees this: My wife was on AMAT therapy for about 3 years, starting in late 2016. The view was that MAP is very difficult to eradicate from one's system, so it takes the triple antibiotic regimen, and time, to rid one's body of MAP bacteria. But the side effects were minimal, and the results were good. Here we are, seven years after we astounded her Mayo Clinic gastroenterologist with good scans, and she's still Crohn's-free. Still has to be careful what she eats for two reasons: (1) the decades of Crohn's scarred her terminal illeum, so she's prone to small-bowel obstructions; and (2) diet--the only milk she consumes ultra-pasteurized, as normal pasteurization isn't hot enough to kill MAP bacteria, and when she does eat beef (which is infrequent), it's well done for the same reason.

MAP causes Crohn's Disease. She rid herself of MAP through several years of AMAT therapy, and she's careful not to get re-infected.

As stated way back in the original post, there's a high probability that your mainstream gastroenterologist will poo-poo all of the science behind MAP as a cause of Crohn's, and thus AMAT as a therapy. That doesn't mean you should poo-poo it though.