Any new information/clinical trial results on anti-MAP treatment for crohn's?

Hello everyone, if you don't want to read my back story, please scroll down to the 5th paragraph for my questions, but I thought it might be important to include my back story because people often ask me about it whenever I ask about anything. I'm so sorry it's long. I was diagnosed with crohn's disease in Feburary after having my colon removed and getting an ostomy due to severe ulcerative colitis symptoms. After the surgery, mri's showed inflammation of my small bowels. I recently started partial treatment, and it took so long because I had a huge abscess and a fistula that created an opened wound at the bottom of my surgical incision after the surgery for several months. The abscess is gone now but I still have the fistula, though the open wound healed over, I am still having anal drainage from it (though the drainage frequency decreased to about two to four times a week from once or twice a day).

I started immuran recently, and after starting it the opened wound healed and the drainage decreased. I'll probably start humira near the beginning of Januaray. We're hoping the fistula will heal completely and the corhn's symptoms (inflammation and severe abdominal pain) will decrease. Though, I'm worried even if I achieve remission, it will only be a matter of time before I flare up again, and that's usually when treatment begins to fail or become less effective it seems. I've watched the progress of many people on the forum here for about 3 years ever since I started having severe abdominal pain back in January of 2013. I've seen people claim to achieve remission from humira, only to be in even worse condition about 2 years later. Then I never see an posts from some of them again. It makes it hard for me to be hopeful for any long term treatment that humira will provide me.

My problem is very severe. I almost died twice in 2013 and 2014 from blood loss from the ulcerative colitis. And though I was able to still go to college full time during the spring semester of 2013, I had to drop all but one course in the fall-winter of 2013-2014. I tried going back to school in spring of 2014 but that was a bad idea since I hit rock bottom in 2014 and stayed there the entire year. I was pretty much hospitalized the entire year of 2014. Every single holiday was spent in the hospital, including my birthday. I was released here and there only to return in 2 weeks.

The abdominal pain is the main problem and what kept me returning to the hospital (though they would admit me because of the massive bleeding, and not the pain specifically). The pain is what is causing me to suffer everyday and preventing me from having any quality of life because I'm completely house ridden, and usually bed ridden all day right now (that's how bad the pain is). During 2015, though I was mostly able to stay out of the hospital for the most part, I've been bed ridden all year because of the pain. I've been on the same medication for 2 years and am suffering more because of tolerance. My pain specialist is currently trying to get a spinal cord stimulator approved for me through my insurance. We hope this will help me cut back or completely cut out the opiates since they aren't effective for me anymore and he, nor I, want to just keep getting more and more. I am hopeful this will help me but it doesn't work for everyone. And even the superior celiac plexus blocks didn't help at all, so I'm worried this will not be my solution either.

Again, I'm very sorry for the long back story. But this here are my questions. I recently become aware of a treatment called anti-MAP bacteria that shows a lot of promise. I've been trying to search for recent news about the subject, but all I can find for 2015 is just the same stuff that was available several years ago. I tried searching the forum for recent topics about it but the most recent I can find via search is 2009. Which is strange because I've seen about 2 or 3 posts from 2013, though they were just followups from the members who started the treatment years ago. And those posts had very little information. It seems that the persons I was following have become inactive between 2010 and 2013 because there doesn't appear to be any new posts. I've seen one person say it didn't work for him by 2013, but when he started it in 2008, back then he said it seemed to be working. I guess in the end, it didn't help him. I also seen some people conclude that it works for them very well, but when they come off it their symptoms return.

Basically, my main question is, in 2015, has there been any new information about Anti-MAP treatment from 2009? I'm looking for things like new findings, changes in the availability of the treatment, and ESPECIALLY results from clinical trials that were running in 2009. I've seen several studies from 2008 and 2009, but I can't find any results for any of them, and I really want to know what the results were of all these studies. And has there been any progress in the whole treatment becoming readily available to all patients (with crohn's) in America? Specifically Clofazimine and Rifabutin? On www.accessdata.fda.gov, Rifabutin is listed as FDA approved, but Clofazimine is not listed. Is there another name it might be listed under? If not, is there any new information about when it might become FDA approved and become available for patients? Also, if it's not going to be approved for a while, it is possible and legal for patients to buy this medication in America without a prescription? Please let me know about any new information at all regarding this treatment and please, if you know of any websites that have any recent information about any of this, especially clinical trial results, please let me know what those websites are because I can't seem to find anything with google.

Additionally, this is being labeled as a potential cure, but I've never seen anyone say that they've been "Cured" since when it does work, they can't stop taking it otherwise the symptoms return. Why is this being called a possible cure if people have to keep taking it to avoid symptoms? Am I missing something? Is there someone out there claiming to be completely cured with this treatment (and has never had to take the treatment again) that I haven't seen?

Also, if anyone has undergone this treatment, can you please let me know if it worked or not for you, and what medications were part of that treatment? If it did work, how long were you on the treatment for before you felt like you were able to work full time again? I know that information like this is hard to come by, but I'd appreciate any new information. Again, if you know of any websites or other forums where I can find more current information from 2015 about the anti-MAP treatment, please let me know what it is.

Thanks in advance everyone. May God bless you all with health and happiness.

Post Edited (edenenix) : 12/5/2015 8:18:46 PM (GMT-7)

Hi Edenenix - firstly let me say how sorry I am that you are suffering from this awful disease. I have a friend in a similar situation, and I know how truly disabling it is. I was very sick with Crohn's, but do not have UC.

I have been on AMAT for over a year and work in conjunction with docs and researchers on TheCrohnsInfection.org because it worked so well for me. I wanted to share it with other people so they could learn and decide if it was right for them. I post new info each week as it becomes available from the different research camps, so there is certainly a lot of hope from different parts of the globe. I will do my best to answer your questions, and if you look through the site above, most of them are there as well.

Clofaz was discontinued in the US due to non-use. It's primarily a leprosy drug, but it's not illegal. Using it for AMAT would be off label, so some docs are hesitant and they use levofloxicin instead. It's available reliably through Swiss and Canadian pharmacies from what I hear.

As to AMAT being a cure, I've only heard of five people out of Prof. Borody's clinic that are cured - meaning they have been off all meds for more than five years without a reeturn of symptoms. In some that may be possible, but I think that most people will relapse once they stop AMAT. It may be a while, but most eventually relapse.

Me - I'm planning on taking it as long as I'm allowed! It may eventually be combined with something like a vaccine or an immunomodulator to provide a cure. I also take low dose naltrexone and that has been a beautiful combo for me. I have no symptoms - it's like I don't have Crohn's. My blood work is completely normal and my repeat colonoscopy showed healing and no active disease. Even my doubting doc was impressed!

If you want to read about other patients who have been on AMAT, check out that tab on the site. I can assure you they are all real people who sent in their experiences with AMAT. You will see it works differently for each. In some it took longer to work. I think my case was a bit faster than usual, being better after 6 weeks. If you need help finding a US doc, feel free to contact us at website portal or let me know your location and I can try to help. This is a big problem, but hopefully when RedHill results come out more docs will agree to use this. Integrative health docs are also more receptive. Best of luck to you, and I'm happy to help!

The GIs won't mention AMAT because it isn't an approved treatment pathway in the US. All of the meds are FDA approved, but the combo itself is not approved for Crohn's. That study is being done now (RedHill). It's doesn't mean that it's not effective or that there are not many smaller studies which show it's effectiveness, it only means that it's still considered an emerging therapy in the minds of the GIs. Maybe you'll get lucky and your GI will be receptive! Discuss and see what's best for you.

The 3 meds most commonly used in the US are clarithromycin, rifampin and levofloxicin, which is the generic of Levaquin. So if you are truly allergic to levo, you'll want to go right to clofazimine. I always thought I was allergic to the fluoroquinine class (levo and others) but it was moree that it made me very sick to my stomach. I certainly did get debilitating nausea when I first started AMAT, but it went away after a few days and my body adjusted. After a couple of months I couldn't feel the meds at all.

You can get clofaz, you just have to get your doc to write the prescription and scan it over to the outside pharmacy. It's not that it's banned, it's just not used so they discontinued production in the US. Read through this page and it will give you and your doc most of the info you need. Some commonly asked questions AMAT are also included in another page.

http://thecrohnsinfection.org/treatment-of-crohns-via-anti-map-therapy/

You can also get a reliable mycobacterial test before starting treatment through New Zealand. I did this and have been very pleased with the service and insight I gained into my disease. John Aitken is a great guy who truly cares about Crohn's patients. Best of luck to you! If nothing else, you are better informed about all of your options, which is never a bad thing when dealing with IBD.

irishgal1 said...
Hi Edenenix -

I have been on AMAT for over a year and work in conjunction with docs and researchers on TheCrohnsInfection.org because it worked so well for me. I wanted to share it with other people so they could learn and decide if it was right for them. I post new info each week as it becomes available from the different research camps, so there is certainly a lot of hope from different parts of the globe. I will do my best to answer your questions, and if you look through the site above, most of them are there as well.

I am very interested in your story Irishgal1. I too have started the AMAT treatment, however I started 2 months ago. You are right, the nausea is "agonizing." I would like to know, when you began in your 1 year of treats, how long did it for your symptoms to subside? Just a brief background as everyone is different. I was diagnosed with Crohns at 10 years old, and I am now 25. I am 6'3" and 145lbs. Was recently hospitalized due to flare (i.e. weight loss). The only treatment that seemed to be working was Remicade for the last 6-7 years and it has now run its course. My Crohns is located in my Terminal Illeum and I have an ulcer there as well. Since starting the Anti-MAP therapy 2 months ago the pain has mitigated. So how long and at what stages did you noticed your pain level decreasing till you were remission? I would just like to have an idea of what your experience entailed.

Thank you very much for your time!!!

Hi edenenix - just realized I never replied to you! Yes, Crohn's is a rich man's disease. There was something about that in another forum. I'm so sorry you're not only suffering with Crohn's, but also with a lack of resources. Certainly bread and ramen will probably make you feel horrible, especially due to the gluten, so if there's any way to get cheap fruits or veggies that you can tolerate, I'd consider that.

As to clofaz, I've hear it's not too expensive if you go through the Canadian pharmacies. The Swiss one is pricey. I doubt your insurance would cover either. If you are ready to go on AMAT and can find a doc who will prescribe, message me or respond here and I will try to get you the detailed instructions I received from a patient who goes through Canada. You can check the price and hopefully it will be affordable. Hopefully your doc can switch you to something other than Kratom, which sounds horribly expensive!

You don't need the blood test. It's usually a couple hundred and most Crohn's patients will turn up positive, but some want to see the results to check growth pattern and get a 100% confirmation. You could always try AMAT for 3-6 months and if it helps, assume you had the pathogen.

Not sure which presenter or question you're referring to, but they all talked about AMAT combined with some type of immunomodulator or a medication to fix the innate immune deficiencies. Very different from an immunosupressant like Humira. Think more along the lines of UVBI, low dose naltrexone or SSI as combined with AMAT. One wipes out the pathogen, the other tries to fix the dysfunctional immune system. Dr. Chamberlin's Fepibro is more in this category. If you have a specific reference, I can try to explain further. Just not sure which video and quetion you mean. You'll have to talk to your doc about AMAT vs. Humira. I know some are on Remicade and AMAT at the same time, but not sure about Humira.

Seriously hope you get relief from somewhere soon! It's miserable to live so sick for so long. My heart goes out to you. I'm happy to try to help if I can. Peace and health to you.

I am on Humira currently along with 50mg of imuran a day for my fistulizing crohns disease. Its working very well. Ive had this illness since the age of 11. Im now 52 . I was wondering if I should introduce the AMAT triple dose antibiotic therapy as well. Do you think this would also help with my condition i have a fistula (very small) do you think the anti map therapy could clise and heal this fistula ? Thanks everyone. I love reading your posts. Im so happy that this anti MAP therapy has put a lot of you in remission.

Dear irishgal - thank you for your reply. Im in Australia . I have a tiny rvf that still needs closing its not quite there yet. I will definitely speak to my IBD team here about the AMAT antibiotics they may just nip that fistula closed. I will still stay on the Humira and imuran as well. Thanks for all your wonderful posts xxx ☺

Post Edited (cooltiger) : 2/13/2016 7:39:32 PM (GMT-7)

Thank you irishgal1 . I've made an appointment with my GP for tmrw. I will get him to consult with Dr Barody . I will also google the uvbi. Thanks a million for your response I hope you are well. ×××

Dear irishgal
Thats wonderful that you're well. Im so happy for you. Can I ask you the actual dosage of your AMAT drugs. I live in Queensland thats the state north of NSW where Dr Borody is. I believe there is like a years waiting list to get in to see Dr Barody. I know this small rectovaginal fistula is still patent and not closed. Ive had a diverting colostomy for 2 years which is now reversed in the hope that the biologics would close the fistula. It certainly is a lot better than pre colostomy but still not totally closed. So im hoping this AMAT along with the biologics may seal the deal.
Thanks beautiful girl xxxxxx

Dear Irishgal1.. once again thankyou a million. You are AMAZING!
I will show my doctors here about AMAP and how it's helped you immensely . I was on Remicade as well but built up antibodies to it now I'm on the Humira weekly. I was on Remicade for about 18 months now the Humira for about a year. They're wonderful there is also a new Biologic thats out called Entyvio (its gut specific ). It's not a TNF blocker apparently. But I'm staying on the Humira became its good for me atm. I just really really want to get rid of this little fistula once and for all. I'm hoping this AMAT therapy will do the job.
You are absolutely AMAZING helping me. Thanks for the link. I will have a read. Lots of love and the best healing vibes I'm sending to you. ××××××××

Hi Brian,

I'm happy to help if I can. Email me at [email protected] and we can discuss.

Hi Canada Mark - you're awesome. Thanks for thinking of our group! I posted it in our new Facebook group a couple of days ago because I thought the same thing. What a remarkable story. I think with almost 20 years of remission, the line between remission and cure starts to blur. It may not be a full cure, but I'm fine with calling it long term remission as long as I feel better! The private FB group is at the link below if you want to join. It nice to be able to have a real time connection to post articles like this that may not be suitable for a full site blog post. Hope you're well!

https://www.facebook.com/groups/1558961697758226/