MAP drug trial, does anyone know anything about it?

[JennyT]

I have had a lousy remission experience with the Jenny version of crohns I have with the most invasive feature being very bad pain. (I have to use morphine judicously - I'm very careful). I heard about a MAP vaccine trial in NZ with 270 applicants being accepted. I contacted them personally and now it looks as if I am going to be accepted on the trial once Ive spoken to them face to face, seen all the paperwork etc and am happy with it.

I have read extensively about MAP and am aware it is controversial and why from what I have read. But I dont want to live like this for the rest of my life with pain having such a huge say in how I feel and what I can do. That makes me willing to try anything. I would be interested in what REAL people on this site have to say so I can add that to my consideration Thank you. Jenny

 

[Layla]

Good on you for signing up for the trial!
I've had a look at the eligibility criteria but I'm not eligible otherwise I would consider signing up myself.
My considerations to join were that it involves well known antibiotics with well known (side) effects which eased my worry about them.

If you do join it would be great if you let us know how it all goes, good luck!

 

[Jennifer]

You may want to check out this thread: http://www.crohnsforum.com/showthread.php?t=66696

 

[JennyT]

OH NO well that was getting all excited for nothing! I received the results of the MRI - I dont have cancer, thats the good bit. I DO have a length of small intestine that is totally buggered, infected, inflamed and nearly closed. Beside that length of intestine is a large pocket of infection and inflamed tissue. The diseased intestine has attached itself to part of my colon which implicates that part of my gut as well so the answer is CHOP CHOP out it all comes.

Unfortunately I no longer qualify to be part of a new MAP drug trial because of the pending surgery RATS

 

[medicaljohndoe]

It seems like a lot of people are under the impression that the "MAP drug trial" is the only available therapy that targets MAP. That's not the case. I am on a two-week trial of Dapsone 100mg daily right now, which is also an antibiotic that targets mycobacteria (the M in MAP), which is why it's so effective at treating leprosy, which is what it's generally known for. Dapsone does have potentially serious side effects and you need to be monitored for hemolysis and jaundice while you're on it, among other conditions, so it definitely requires careful thinking and attention on the part of your doctor. But so far I have had no GI symptoms--which was not the case just a couple of weeks ago--and my Crohn's-linked psoriasis seems to be improving.

While many doctors have advocated a three-drug regimen instead of a single antibiotic, it's not clear to me why that is absolutely necessary. MAP is an extremely slowly-reproducing organism, and so it has much less opportunity to mutate into a drug-resistant form, unlike HIV or other pathogens that mutate extremely quickly and accordingly risk become drug resistant.

There are several case reports of Dapsone being effective for Crohn's, but they're quite dated (from 1975 and 1988) and no one seems to be paying attention to them anymore. At the same time, I can't seem to find any literature that indicates why they would no longer be valid.

For me the difficult part was just getting a prescription for Dapsone.

 

[Lisa]

OH NO well that was getting all excited for nothing! I received the results of the MRI - I dont have cancer, thats the good bit. I DO have a length of small intestine that is totally buggered, infected, inflamed and nearly closed. Beside that length of intestine is a large pocket of infection and inflamed tissue. The diseased intestine has attached itself to part of my colon which implicates that part of my gut as well so the answer is CHOP CHOP out it all comes.

Unfortunately I no longer qualify to be part of a new MAP drug trial because of the pending surgery RATS

Sorry you don't qualify any more for the trial - but it sounds like it was a VERY good thing you had the testing done - hopefully the cause of your pain has been found and can finally be taken care of!

 

[HannahR]

Since you don't qualify for the trial you could find a doctor that will work with you to prescribe the antibiotics. That is what I am currently doing. My gastroenterologist wasn't comfortable prescribing them so we had to seek out another doctor that was willing. He is in contact with Dr. Kuenstner who is part of this Anti-Map movement and he helps answer his questions and relay ideas on my treatment.

 

[Jennifer]

HannahR did you or will you (if you haven't started yet) be tested for MAP prior to treatment?

I'm sorry you can't participate in the trial JennyT but I'm glad you had testing done to catch that and hope your surgery goes well. :hug:

 

[JennyT]

Thanks everyone for your comments - once the surgery is completed and all healed I am going to chase up the opportunity to use the right antibiotics through my GP. I already tried my specialist and he isnt a believer. In NZ specialists are thin on the ground so finding another 2nd opinion isnt an easy task. Not to worry, I have a wonderful GP who has been really helpful behind the back of my specialist in the past I must say - the surgery scares me a bit - knowing what gut problems can mean having had all this trouble with eating and pain etc etc - Im hoping like mad nothing goes wrong! My specialist said the relief will only last 2-10 years before Crohns creates a re-occurance and it will be surgery all over again. It feels like the beginning of a slippery slope

 

[HannahR]

HannahR did you or will you (if you haven't started yet) be tested for MAP prior to treatment?

I'm sorry you can't participate in the trial JennyT but I'm glad you had testing done to catch that and hope your surgery goes well. :hug:

I have been tested for map as I have been on the treatment for about 8 months. I tested positive for it.

 

[Jennifer]

My specialist said the relief will only last 2-10 years before Crohns creates a re-occurance and it will be surgery all over again. It feels like the beginning of a slippery slope

Wow JennyT. Your GI seems to be very negative about it. There really isn't a set date for when the disease will be active again. For instance my resection was back in 1999 and it put me into remission and I've been in remission ever since. 17 years and counting. There are others on the forum who have been in remission longer than I have so don't give up hope.

The GI who did my surgery said that the outcome for surgery was great. I asked him how long I'd be in remission for back then and he said that he had one patient who had been in remission for 10 years and still was (dunno if he is now, we haven't kept in touch). I've surpassed that 10 year mark of that one patient but that was simply one patient and not my doctor saying that I'd only get 10 years of remission.

While it is possible for the disease to return since surgery isn't a cure, that doesn't mean you have a set number of years of remission.

 

[JennyT]

. While it is possible for the disease to return since surgery isn't a cure, that doesn't mean you have a set number of years of remission.

He was very specific and quoted the stats from his case files, he was totally sure no-one had lasted beyond 10 years without needed a further resection in his experience.

Your comment is very encouraging - thank you.

 

[JMC]

I have been tested for map as I have been on the treatment for about 8 months. I tested positive for it.

That is interesting. Who tested you and how did they do it? I have also been tested using an experimental (and therefore yet to be fully validated) MAP test and was also positive. Both my resection sample from March 2012 and blood test from Nov 2015 were positive.

 

[JMC]

I heard about a MAP vaccine trial in NZ with 270 applicants being accepted.

Wooohoo! Who was doing the test? Who developed the vaccine? Although I am aware of MAP vaccines for treating Johnes disease in cattle, as far as I knew, there was only one MAP Vaccine for human use and that one is still being manufactured by the Jenner institute on Oxford, UK with the phase 1 trial in healthy patient due to start this year.

 

[HannahR]

That is interesting. Who tested you and how did they do it? I have also been tested using an experimental (and therefore yet to be fully validated) MAP test and was also positive. Both my resection sample from March 2012 and blood test from Nov 2015 were positive.

We had to send my blood to Australia but the doctors name I forget.

 

[JMC]

We had to send my blood to Australia but the doctors name I forget.

Are you in the US? Are you being treated by Dr William Chamberlin? Sorry for all the questions, but I am very interested in MAP and there are genuinely no more than a handful of people in the World who could test you for it and I don't know anyone in Australia!

 

[medicaljohndoe]

My impression is that any lab with a PCR machine and the IS900 gene primers can do the test for MAP. That's not to say that the test is always accurate, but testing should be pretty easy to do in the developed world--so long as you can get a doctor to agree to do it.

 

[HannahR]

Are you in the US? Are you being treated by Dr William Chamberlin? Sorry for all the questions, but I am very interested in MAP and there are genuinely no more than a handful of people in the World who could test you for it and I don't know anyone in Australia!

Hi hi keep the questions coming haha. I am in the US. I am being treated by a doctor that we found that I originally got my uvbi treatments from. He works with me in prescribing my antibiotics and monitoring my test results.