Any Canadians on Anti-Map therapy?

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riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 2/8/2010 6:38 AM (GMT -7)   
Hi Again,
I'm wondering if there are any Canadians on the Anti-Map therapy.(We live in SW Ontario) My 14 year old daughter has crohns and I have been researching this for a while now. I know that not everyone has MAP, but I believe the research so far stating that most crohns patients have it . I've read alot and watched the videos on youtube about the research of Prof. Borody and Dr. John Hermon-Taylor. I would like to have her try this therapy as these antibiotics don't seem to be harmful in comparison to other treatments out there. I mean Remicade etc has been proven to have many possible serious side effects, but doctors don't seem to mind prescribing that. I don't get why most doctors are still resistant to trying this therapy. She is presently on SCD diet, Pentasa, LDN and many supplements. She was on Methotrexate with her old doc, but began vomiting with it. The doc then kept pushing  Remicade, which I did not want and we finally swithed doctors.  She just had  bad flare at Christmas(I believe due to cheating on the diet) and had to go back on prednisone. She has an appointment with her GI in April, and would like to be prepared with examples of other docs who are trying the Anti-Map. He is pretty open to suggestions, but I wonder if he will go for this. I'm so tired of watching her suffer and waiting and hoping for years and years till the world accepts this type of treatment or something better comes along. It all takes so long and meanwhile, this disease is destroying her bowels. If anyone could give me any info on where in Canada this is being done and the doctors names, I'd appreciate it. Diana

willj
New Member


Date Joined Dec 2009
Total Posts : 19
   Posted 2/8/2010 8:20 AM (GMT -7)   

Email my friend David, he lives in Canada and is on Anti-MAP therapy and is doing well.  He is an excellent resource.  Failing that, type into google scholar the studies done by Borody and Hermon-Taylor, print them off and show them to your doctor. 

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Post Edited By Moderator (Nanners) : 2/8/2010 10:16:50 AM (GMT-7)


killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 2/8/2010 9:51 AM (GMT -7)   
My daugther has UC but you might want to email dr. Anne Griffiths at sickkids in toronto. She's my daughter's GI , is excellent and I believe she's quite knowlegdable about the anti-map protocol. Or maybe your GI could contact her directly?

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 2/8/2010 6:07 PM (GMT -7)   
i think they don't prescribe antimap antibiotics because a randomized controlled trial found that they simply weren't effective long-term
this doesn't mean the MAP theory isn't legit. i believe in map, but the antibiotics out right now probably don't work very well.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


arby1
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/28/2012 12:58 PM (GMT -7)   
Did you happen to find any Canadian Docs who do anti map for UC? Tks for your response
 
Arby

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 2/28/2012 4:53 PM (GMT -7)   
Arby,
They will not rx anti map for UC, it's only shown to be effective in (some cases of) CD.

Lucky3
New Member


Date Joined Feb 2015
Total Posts : 3
   Posted 9/3/2015 5:55 PM (GMT -7)   
Hi there Mom of the 14 year old in Ontario. I have two daughters on the Anti-Map treatment (we live in Ottawa Ontario). This treatment has turned their lives around. They are doing great! Email me back with any questions.

rsh1986
New Member


Date Joined Dec 2014
Total Posts : 7
   Posted 10/31/2015 8:15 PM (GMT -7)   
I tried two of the antibiotics on the MAP protocol (Rifabutin and Clarithromycin) for 18 mos, and wound up in a huge flare with massive abscess, inflammation, and resection. I do believe in the theory behind MAP, but agree with others that the antibiotics right now don't seem to clear it (if it is, in fact, MAP), or perhaps you have to get the treatment right away before the MAP take hold and are too hard to clear.

My only caution is to make sure you're continually getting checked out for inflammatory markers (blood and scans) while you're on the treatment so you can avoid my fate.
Crohn's (SB and colon) -- 28 years. Diagnosed in 1986. Taken and failed prednisone, 6MP, Humira, Entocort, dozens of antibiotics, hundreds of supplements. 2 resections. Currently taking Remicade, Methotrexate, Vitamin D, B12.

SteveCov
New Member


Date Joined Nov 2015
Total Posts : 1
   Posted 11/1/2015 8:13 PM (GMT -7)   
Lucky3 said...
Hi there Mom of the 14 year old in Ontario. I have two daughters on the Anti-Map treatment (we live in Ottawa Ontario). This treatment has turned their lives around. They are doing great! Email me back with any questions.




Hi Lucky3

I live in Ottawa and I am very interested in finding a doctor that treats MAP. Can you give me the doctors name please.

CrohnsPanda
Regular Member


Date Joined Jan 2015
Total Posts : 23
   Posted 11/3/2015 11:41 PM (GMT -7)   
In montreal we had a doctor doing clinical trials on treating MAP with antibiotics. The theory is an interesting one but doesn't seem likely to be the golden ticket. Remission rates weren't very high, I'd suggest looking into cannabis oil treatments as they seem to be working wonders. Still not a cure but the success rates seem to be significantly higher. Patent medicine options seem to spread like wildfire, where the natural treatments are swept under the rug. Look up Coltyn Turner, he's got quite a story. Good luck everyone!
Diagnosed 15 years ago
Been on: 6MP, Pentasa, methotrexate, Immuran, prednisone, flagyl, cipro
Current Rx: Remicade
Daily supplements : coconut oil, tumeric, digestive enzymes, probiotics, vitamin C, Omega 3, magnesium
Diet Base (organic): Avocado, banana, green apple, broccoli, cucumber, kiwi.

CrohnsPanda
Regular Member


Date Joined Jan 2015
Total Posts : 23
   Posted 11/3/2015 11:45 PM (GMT -7)   
And honestly if she's in bad shape, Remicade may be your best option. As much as I hope to transition off of remicade, I've been able to live a perfectly normal life for the past 6 years. Side effects are possible with all pharmaceuticals, but it's all about weighing the risks. I feel for your situation, it's not easy being the parent of a Crohnie.
Diagnosed 15 years ago
Been on: 6MP, Pentasa, methotrexate, Immuran, prednisone, flagyl, cipro
Current Rx: Remicade
Daily supplements : coconut oil, tumeric, digestive enzymes, probiotics, vitamin C, Omega 3, magnesium
Diet Base (organic): Avocado, banana, green apple, broccoli, cucumber, kiwi.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8581
   Posted 11/4/2015 4:09 AM (GMT -7)   
CrohnsPanda said...
And honestly if she's in bad shape, Remicade may be your best option. As much as I hope to transition off of remicade, I've been able to live a perfectly normal life for the past 6 years. Side effects are possible with all pharmaceuticals, but it's all about weighing the risks. I feel for your situation, it's not easy being the parent of a Crohnie.


Going off a med that has worked without any side-effects for 6 years sounds like an absolutely brilliant decision.

Some people don't know when they're lucky, that's the problem.

CrohnsPanda said...
In montreal we had a doctor doing clinical trials on treating MAP with antibiotics. The theory is an interesting one but doesn't seem likely to be the golden ticket. Remission rates weren't very high, I'd suggest looking into cannabis oil treatments as they seem to be working wonders. Still not a cure but the success rates seem to be significantly higher. Patent medicine options seem to spread like wildfire, where the natural treatments are swept under the rug. Look up Coltyn Turner, he's got quite a story. Good luck everyone!


I'm not remotely interested in looking up Coltyn Turner (I've got quite the story of how my brother obtained remission by, well, doing nothing at all really), but if you've got any links to those Montreal clinical trials I'd be interested.

Post Edited (NiceCupOfTea) : 11/4/2015 4:13:53 AM (GMT-7)


U B Tough
Regular Member


Date Joined Aug 2015
Total Posts : 494
   Posted 11/10/2015 12:15 PM (GMT -7)   
Just posted this on the UC side....

I've recently sent my sample to Dr.Zhang in the US for testing. My GI in Toronto is very supportive but won't prescribe the antibiotics until I test positive. (I'm also on Entyvio so he doesn't want anything to cloud the results of that, which is understandable.)
female, Canada

IVIG
pentasa- tappering
Giving Entyvio a fair shot. 4 infusions so far.
UC/Crohns? - awaiting MAP results.
PG- in remission.
Flaring for 2 years. -6/day, no b or m. urgency. SEVERE URGENCY. did I mention urgency?
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