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I started Anti-MAP therapy

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Crohn's Disease
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Posted 3/13/2009 8:11 PM (GMT 0)
This presentation by a Dr. Behr to the CCFC is really great.  This is part 1 or maybe 6 or so--I've forgotten.  Dr. Behr does a great job of explaining MAP in layman's terms. 

http://www.youtube.com/watch?v=nMucsxJau6k

Also on youtube, you can search for interviews of John Hermon-Taylor, a MAP researcher in the UK. 

Here's an article from the UK from September where they have begun testing their herds due to the high incidence of Crohn's there:

http://www.nmr.co.uk/news/20080917c.asp

crazy_daizy, if they are really testing your specimen for MAP, be sure and get the name of the lab which did the testing.  It's my understanding that there is only one lab in the US capable of testing properly for MAP, though this was about 18 months ago when I was looking into it.  I'm sorry, I don't remember the name of the lab...  shakehead  

I've also communicated with Dr. Lipton in the past. I'm glad to hear she's still doing exceedingly well! 

Jay25CA, please keep us posted and best wishes to you!   

Posted 3/13/2009 8:32 PM (GMT 0)
She was trying to promote something that she has a financial interest in. That is against HW Rules.
Posted 3/14/2009 6:46 AM (GMT 0)
Thanks for those links, EMom.
I believe my specimen is being tested at Quest Diagnostics, I'm not sure of the location.

I just read the article posted by Reef08, and the Dr. Shafran in Florida that the article recommends is the Dr. that I just tried contacting the other day. Actually my boyfriend called down there for me and talked to the receptionists/nurses that told him they used to treat with antibiotic therapies but had to stop because the FDA was trying to shut them down or something...? But that when they did so, they had "astonishing results".

My boyfriend has also spoke directly with the CEO of the Giaconda company about Myoconda (a triple antibiotic formula) and said that they are probably at least a couple years away from being FDA approved but have little funding for their trials.

It is very unfortunate that the US is more interested in making money on beef/milk products and pharmaceuticals to treat symptoms than finding cures for diseases :(
Posted 3/14/2009 2:30 PM (GMT 0)
I'm still waiting for approval from the FDA to start the 3rd antibiotic. Cross your fingers and pray they approve it.
Posted 3/14/2009 3:25 PM (GMT 0)

craizy_daizy said...
Thanks for those links, EMom.
I believe my specimen is being tested at Quest Diagnostics, I'm not sure of the location.

You are welcome!!! Possibly try contacting Dr. Shafran in Florida about which lab can accurately test for MAP. If memory serves me, he is the one who pioneered the test (or at least was somehow involved) and would know if Quest has the ability to give accurate results. Again, if memory serves me, the lab must test for the presence of MAP's DNA--not the presence of MAP itself. I believe this is what makes the test soooo very, very specialized.

I've fallen out of touch with a couple of people who were pursuing this treatment, but as I understand, we cannot get one of the antibiotics (Rifabutin?) here in the US that Dr. Borody uses in Australia. It may be a key player in this treatment and possibly handicapping those who wish to try it here in the US. I certainly hope not, though!

I'm sure you all know, but just remember that antibiotics--especially triple and quadruple implementations for long-term use--are not without risk. I had a doctor who uses this treatment discourage me from pursuing it for my son because his Crohn's is most likely quite mild. He felt the risks did not outweigh the benefits...

Craizydaisy, if you'll email me personally, I'll pass on a couple of doctor's names that I have filed.
Posted 3/14/2009 3:27 PM (GMT 0)
The drug that is hard to get is Lamprene otherwise known as clofazimine
Posted 3/14/2009 4:22 PM (GMT 0)
Yes, but people have also used Rifabutin.
Posted 3/14/2009 4:28 PM (GMT 0)

craizy_daizy said...

My boyfriend has also spoke directly with the CEO of the Giaconda company about Myoconda (a triple antibiotic formula) and said that they are probably at least a couple years away from being FDA approved but have little funding for their trials.

(

Why don't you get yourself in the trial?

http://www.drugs.com/clinical_trials/fda-approves-myocondar-ind-map-crohn-s-disease-935.html
Posted 3/14/2009 4:31 PM (GMT 0)
I've had CD for 10 years and for 10 years I've heard how anti-MAP is the cure. While I wish anyone who tries this the best of luck, I'm skeptical. I would think if this was curing everyone we would hear about it? I don't mean hear about the treatment, I mean we would have lots of posting from people saying, "Hi all, I'm cured!" I know this one doctor was helped.....so that's 1....

Anyway, good luck!
Posted 3/14/2009 6:44 PM (GMT 0)
The only thing about being part of the trial, is that you don't know if you are getting the treatment, or the placebo....but, I guess someone has to do it in order to progress. I think the CEO said he would be emailing us if there was going to be a trial in Canada in the future. I haven't heard back.

I also think that the anti-MAP "cure" has been playing hard-to-get...Governments don't want it to be available, they don't want the general public to know that the beef and dairy industry are (may be) responsible for the growing number of people acquiring Crohn's. Animal products are a huge money-maker and more money can be made by selling $4,000/month drugs to treat symptoms (so you keep coming back for more when symptoms return) than providing a cure to the disease that only takes 1-2 years. It sort of sounds like a big conspiracy, but it could be true...it makes sense to me.

Also, doctors don't like prescribing things that aren't FDA approved because it can come back to them if anything goes wrong or doesn't work. Lots of doctors aren't even willing to consider the anti-MAP therapy because it undermines everything they know to be true. I guess you just need to find an open-minded doctor and do a lot of research to get the antibiotics....it would be nice to have a doctor with experience with the therapy, but it seems there are only a couple out there.

Even if this anti-MAP theory is false, it's just too bad that the funding and approval from government is so hard to get to even TRY to find some kind of cure. But there would still need to be trials to prove it one way or the other.
Posted 3/15/2009 2:28 PM (GMT 0)
If anyone is in California, I can give them my Dr.'s number if they're interested in trying this therapy.
Posted 3/15/2009 9:50 PM (GMT 0)
There's also a doctor in Texas who prescribes the antibiotics - Dr. William Chamberlin.

Jay,

Are you only going to be on the 2 drugs or will you be adding anymore later on (Clofazimine)?
Posted 3/16/2009 2:02 AM (GMT 0)
Hi Jay, My 6 year old son is diagnosed with IBD and possibly Crohn's colitis. He is allergic to the 5 ASA. I read regarding MAP and am interested in trying RMAT therapy. I live in California and would like to get the details about the Doctor. Thanks.
Posted 3/20/2009 4:25 PM (GMT 0)
Jay25CA:

Just wondering how you are doing on the anti-MAP antibiotic therapy?
I just spoke to a doctor in El Paso, TX and am thinking of making the trip there (from Boston) to try this as I have exhausted everything else out there.

Please keep me updated with your progress. Thank you.

Debbie
Posted 3/21/2009 3:49 AM (GMT 0)
Thanks to some very helpful people on this forum (and elsewhere) I was actually able to contact Dr. Chamberlin (as recommended by a few others on this thread) by e-mail and he provided the recommended doses of antibiotics. I gave the information to my local Dr. and he called and conferred with Dr. Chamberlin. Now, I'm on the anti-MAP treatment too! They even had all three antibiotics (Levaquin, Clarythromycin, and Rifampin) at my local small-town pharmacy. I guess if you do enough research and find a Dr. with an open mind, you just have to be persistent to get what you want :)
Posted 3/21/2009 9:17 AM (GMT 0)
Craizy_daisy:
Funny. I just spoke with Dr. Chamberlin too --- yesterday I think. Did you go out to El Paso, TX or did he just confer with your GI to prescribe the meds? He said it would be best if I go there to visit with him and get a colonoscopy, etc. My current GI is NOT supportive of this MAP thing, maybe that's why. Please keep us all posted on how you're doing. Good luck.
Thanks, Debbie
Posted 3/21/2009 12:39 PM (GMT 0)
Dear Crazy_Daizy,

Just a quick thought on your Anti-MAP therapy. You mentioned
three antibiotics, Levaquin, Clarithromycin, and Rifampin.

Please be sure that you are supposed to be on Rifampin.
All Crohn's studies have been done with Rifabutin (Mycobutin)
and not Rifampin. Although they are similar Rifamycin
derivatives, they are not the same drug. Pharmacies
will often substitute Rifampin for Rifabutin but they
are not the same. The local pharmacist substituted
Rifampin for Rifabutin and we needed to go back and
have him refill the prescription with Mycobutin (Rifabutin).

See this study and ask your doctor/pharmacist to
be sure what you are taking is correct.

http://www.ncbi.nlm.nih.gov/pubmed/8785251
Posted 3/26/2009 3:51 PM (GMT 0)
Hi Crazy_Daizy, dietcoke,
My 6 year old son has Colitis and is diagnosed with IBD. I am considering RMAT therapy; What is the best way to contact Dr Chamberlin - by email or phone and what is his contact details? Please help.
Thanks.
Posted 3/27/2009 2:06 AM (GMT 0)
Hi momsara:
I have two email addresses for him at [email protected] and [email protected]. I emailed him and spoke to him on the phone and am considering taking the trip to El Paso, TX too. Let me know how you make out and good look with your son.
Posted 3/27/2009 3:50 AM (GMT 0)
Tx Debbie, Sure will update you; Good luck to you too..
Posted 3/27/2009 5:24 PM (GMT 0)
I have had no luck getting the third drug. So I will just stick with two. Some of the successful studies were done with only these two drugs. So I am hopeful.
Posted 4/20/2009 2:49 AM (GMT 0)
Jay, do you have an update?
Posted 4/20/2009 3:00 AM (GMT 0)
Well I am now into month 2 and slowly increasing the meds each month. If anyone wants the detailed protocol from Dr. Boroday (not found online), let me know. I feel pretty good. Sticking to the SCD diet but do cheat here and there. Take 2 spoon fulls of the SCD yogurt daily in the afternoon. Was doing really poorly at first due to all the cheating.
Posted 4/20/2009 3:25 AM (GMT 0)
Do you think it's the diet helping or the meds? I know you always said the diet has helped you before.
Posted 4/20/2009 3:47 AM (GMT 0)
Well, according to the Sydney team, it can take up to 6 months for severe cases to start seeing real improvement. The problem is that MAP bacteria replicate very slowly, and you can only kill them when they're replicating. That's why it takes forever to destroy them. In any case, it would take at least 2 years to achieve maximum effect, sometimes longer. It's the same with tuberculosis and leprosy, which are closely related to MAP. If a person tolerates the antibiotics, and sticks to the protocol, diet shouldn't make a difference.
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