List of Canadian GI's prescribing AMAP antibiotics for Crohn's?

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pauly
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/30/2017 2:43 PM (GMT -6)   
Hello Everyone,

We are trying to make a list of Canadian GI's that prescribe the AMAP anitbiotics (rifabutin,clarithromycin and clofazimine) for Crohns?

Many people are getting healed in the US and the UK.

Where the GI doctors in Canada that prescribe this treatment/cure?

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 829
   Posted 4/30/2017 7:10 PM (GMT -6)   
Pauly....still at Mt Sinai; Dr Silverberg is doing the rhb 104 study but I don't qualify because I have fistulas. I've already tested positive with John Aiken....but can't get any abx here.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring 3 years. Currently dealing with fistulas, 2 setons placed and vulvodynia caused by IBD (taking 3000mg gabapentin)
started Humira Sept 1, 2016. 80mg weekly, 150mg Imuran
started Hyperbaric Oxygen on Dec 13, 2016---fistulas slowly closing (fingers crossed)

pauly
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/30/2017 11:17 PM (GMT -6)   
Thanks UB. I hope things get better for you. I will try Dr. Silverberg at Mt. Sinai.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 829
   Posted 5/1/2017 4:46 AM (GMT -6)   
They don't care here. None of the GI's I've mentioned it too haven't heard of the study & frankly no nothing about MAP. I've tried to get my results to Silverberg to no avail. You think they'd be interested. This is not the "Center of Excellence" or leading ibd hospital as they claim.

Canada Mark---if you're around , woukd your GI be willing to prescribe the abx? My GI flattely refuses given my previous reaction.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring 3 years. Currently dealing with fistulas, 2 setons placed and vulvodynia caused by IBD (taking 3000mg gabapentin)
started Humira Sept 1, 2016. 80mg weekly, 150mg Imuran
started Hyperbaric Oxygen on Dec 13, 2016---fistulas slowly closing (fingers crossed)

pauly
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 5/16/2017 1:24 AM (GMT -6)   
I'm sorry to hear that UB tough. I get the same run around whenever I ask any of my docs about the MAP crohn's theory.

Anyhow, I haven't seen you post in a while. I sincerely hope you are doing better than the last time we spoke on here.

Feel free to give us any updates on how things are going and if we can help in any way!
Hang in there.
your friend
pauly

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 829
   Posted 5/16/2017 6:32 AM (GMT -6)   
Hi Pauly,

Thank you for the support. I have good news. My GI spoke with Dr. Silverberg from Sinai and is getting me the study protocol!!

I switch from Humira to Stelara next week and I guess will be starting the abx shortly. I'm so close to an ostomy that these 2 drugs are my last hope.

I'm supposed to re-start hyperbaric on May 25th. The issue is that I'm too ill to get there and commit. I'm not sure how I did the 40 from Dec-Mar when I was so ill and abscessing. I don't have anyone to take me this time. My eye sight hasn't recovered, but I can't solely blame HB as I'm now entering my mid-40's (yikes!) when things start going south!

I'm in a very vulnerable position in all aspects of life with only the tiniest of support systems and no job. I hope I can catch a break and get my life back.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring 3 years. Currently dealing with fistulas, 2 setons placed and vulvodynia caused by IBD (taking 3000mg gabapentin)
started Humira Sept 1, 2016. 80mg weekly, 150mg Imuran
started Hyperbaric Oxygen on Dec 13, 2016---fistulas slowly closing (fingers crossed)

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 3466
   Posted 5/16/2017 4:56 PM (GMT -6)   
No, my GI want's nothing to do with MAP. His answer is always "I looked into it long ago and found no connection". But he looked into it 10+ years ago.

My family doctor however is willing to step in and try to help me should my symptoms return one day.
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