Share Facebook
Crohn's Disease Forum » Treatment » Anyone having success with Anti-Map therapy?


05-08-2014, 11:45 PM   #1
Rblock06
 
Join Date: Jan 2014
Location: Williamson, WV

My Support Groups:
Anyone having success with Anti-Map therapy?

Just curious if anyone else out there is having success with the anti-map treatment. I switched from taking pred Imuran and humira to anti-map therapy plus ultraviolet blood irradiation and so far its been great.
05-08-2014, 11:50 PM   #2
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
I'm being treated with Humira, but I'm definitely curious about how the Anti-MAP treatment is going for you! I'd love to hear more about your experiences with it, if that's all right. I'm sure others on the forum would be interested, as well.

We have a thread about the MAP vaccine here as well if you're interested.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-09-2014, 12:26 AM   #3
Rblock06
 
Join Date: Jan 2014
Location: Williamson, WV

My Support Groups:
Im a Medical Laboratory Technologist and the pathologist over my laboratory is Dr. J.T. Kuenstner who is a firm believer in the map theory. His son was was diagnosed with crohns at the age of nine. His son went threw the anti map treatment plus ultraviolet blood irradiation therapy soon after his diagnosis. He is now 20 and is still in remission.I flared up after being on 150mg of Imuran for 2 and a half years, and was placed on 40 mg prednisone 200mg Imuran and I started Humira. The drugs put me in to remission but I just wanted to get off all of that and try the anti map treatment. I tapered off the pred and just stopped the Imuran and the humira and started the anibiotics and the uvbi therapy at the same time. Its been about 4 months and so far I feel great and im not having any side effects from the anitbiotics. Im on 300mg rifampin twice daily, 500mg clarithromycin twice daily and clofazimine 100 mg one a day and uvbi every other week. I also take probiotics. I have disease involvement in my duodenum, jejunum, ileum, ileoceal valve and my cecum. I mainly have strictures
05-10-2014, 03:12 PM   #4
worriedboy
Senior Member
 
Join Date: Mar 2011

My Support Groups:
Hey. Glad you are feeling well under the antibiotic cocktail; maybe for you its the therapy that will hit the nail on the head.

Have you done any scopes lately in order to make sure the the inflammation is in check ?

Every time I see someone's post about anti map success I wonder what Redhill's RHB104 phase III reults are going to be...
Fingers crossed.
05-10-2014, 04:14 PM   #5
Rblock06
 
Join Date: Jan 2014
Location: Williamson, WV

My Support Groups:
I haven't been scoped since my last flare in early December but my crp and sedrate are negative
07-03-2014, 11:29 AM   #6
Octobergirl
 
Join Date: Oct 2011
Location: Illinois

My Support Groups:
Hey Rblock,

I was wondering if you're are able or willing to share who the doctor is that prescribed you the anti-MAP therapy. Also, do you mind my asking how you were able to obtain the clofazimine in the U.S.?

Last edited by Octobergirl; 07-03-2014 at 11:34 AM. Reason: I didn't realize some of the questions I had asked were already answered in the post
08-08-2014, 01:25 AM   #7
rollinstone
Senior Member
 
rollinstone's Avatar
 
Join Date: Dec 2012

My Support Groups:
Hi octobergirl I think dr will chamberlain prescribes it, rblock, could you please share more on the uv blood thing? Iv never heard of it before. Kind regard,
J
08-08-2014, 05:12 PM   #8
Rblock06
 
Join Date: Jan 2014
Location: Williamson, WV

My Support Groups:
Dr William Chamberlin in Billings,MT prescribes the Anti-Map in the US. The clofazimine was very easy to get. You have to use an online Canadian pharmacy. The UVBI was recommended to me by my pathologist Dr JT Kuenstner. He feels adding it in with the anitbiotics may help. UVBI wast used before antibiotics were invented to treat various aliments. They take about a unit of blood out of you and it gets ran through the machine and gets exposed to uv light and then it gets returned to you. It's supposed to stimulate the immune system somehow. I've had 12 UVBI treatments and I'm on the antibiotics and I'm still feeling great.
08-09-2014, 02:56 PM   #9
Mommabear
 
Join Date: Jul 2014
Location: SF Eastbay, California

My Support Groups:
Rblock06, did you go to Montana? Or did he just do it over the phone? Also, did you gradually build up the dose, or do it all at once? I am wondering if being in remission is better before going on this treatment, or does it matter? Finally, is the pathologist son still on the treatment? Thank you and sorry for all the questions!
08-11-2014, 05:32 AM   #10
Rblock06
 
Join Date: Jan 2014
Location: Williamson, WV

My Support Groups:
I went out to Montana. I started at the full dose. I don't think it matters about being in remission. His son took the antibiotics for four years, and I think he's been off of them for five years.
08-11-2014, 05:35 AM   #11
rollinstone
Senior Member
 
rollinstone's Avatar
 
Join Date: Dec 2012

My Support Groups:
Rblock do you mind discussing what your regime is? I was recently prescribed anti-map it consists of 4 diff anti biotics
08-11-2014, 10:43 AM   #12
Rblock06
 
Join Date: Jan 2014
Location: Williamson, WV

My Support Groups:
Im on clarithromycin 500mg x2 Rifampin 300mg x2 and clofazimine 100mg x1.
11-03-2014, 08:04 PM   #13
Quinnsmom
 
Join Date: Nov 2014
Hi Rblock06, do you happen to know if Dr. Chamberlain sees pediatric patients? My 17 yo son has Crohn's and we are very interested in trying MAP therapies. He's currently on Humira but has a lot of side effects. I hope it works well for you, good luck!

Stacey
12-21-2014, 08:26 AM   #14
Rblock06
 
Join Date: Jan 2014
Location: Williamson, WV

My Support Groups:
I think he treats peds patients. Dr Chamberlin will be practicing at mountain view regional medical center in Las Cruces, NM
06-09-2015, 06:00 PM   #15
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
*Bumping this thread

I was just able to make an appt with Dr. Chamberlin today. His out of pocket visit is max $146 (might be lower), and he spends 1.5 hours with you. Also after this initial appointment he will manage you through phone/email if you're out of state (New Mexico). My appointment is in July, I can't wait to see him!
06-11-2015, 05:46 PM   #16
Tabs
 
Join Date: Jan 2015
Location: Scottsdale, Arizona

My Support Groups:
*Bumping this thread

I was just able to make an appt with Dr. Chamberlin today. His out of pocket visit is max $146 (might be lower), and he spends 1.5 hours with you. Also after this initial appointment he will manage you through phone/email if you're out of state (New Mexico). My appointment is in July, I can't wait to see him!
Let me know how it goes. I arranged a call with him for tomorrow in the late afternoon. I'm in Phoenix and thinking about making the trip out there (not too bad), but I am not covered out of state.

Where did find the max out of pocket cost value? The out of pocket cost would be the main thing holding me back, but if its only ~$150 that might not be an issue. Right now I am just looking to have the MAP test performed and I can't find a doctor out here that even knows about it. I'm sure the test is pricey, but hopefully within a range I can afford.

Thanks,
Dan
06-11-2015, 05:52 PM   #17
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
Let me know how it goes. I arranged a call with him for tomorrow in the late afternoon. I'm in Phoenix and thinking about making the trip out there (not too bad), but I am not covered out of state.

Where did find the max out of pocket cost value? The out of pocket cost would be the main thing holding me back, but if its only ~$150 that might not be an issue. Right now I am just looking to have the MAP test performed and I can't find a doctor out here that even knows about it. I'm sure the test is pricey, but hopefully within a range I can afford.

Thanks,
Dan
The woman who made my appt said he would only charge $146 max for the office visit. I don't know how much the MAP blood test would be or the prescriptions. I'm going to try and get my GI on board (good luck, right) so that my insurance will cover them.
06-11-2015, 07:01 PM   #18
MarkC
Banned
 
Join Date: Jun 2015
Location: Cambridge, Ontario
I'll post this here as well as it may be of interest to some:

---------
Hi Tabs,

There is now finally a facility in the US where you can get testing. You do not even need your GI or anything like that. I'm sorry I cannot post a direct link yet due to forum rules.


Sorry this is the only way I can post a direct link, haha. Anyways, the test I believe is $450

The benefit however is that they will actually perform three tests for you. They will try and culture (grow) MAP directly from your blood sample. They will try to detect MAP by PCR (so look for MAP DNA in your blood) and they will test for antibodies in your blood against MAP.

I will be sending my sample in shortly - I was unfortunately delayed in sending mine as I recently had to go for quite a few days on IV antibiotics due to a strep infection in my throat. Just recovering from that ordeal now.

I have Crohn's-Coltis by the way so I am interested in finding out the results.

This may be a good (and easy) option for you. I will also post this on the other MAP thread. Perhaps the best $450 bucks you'll ever spend.

Also you just go get your blood drawn anywhere and simply express post it to them.... it's just that easy now. Crazy how things change. In my case I am in Canada and have to fill out a "non-infectious" form for US Customs but that is also very easy.

Last edited by Jennifer; 06-13-2015 at 06:07 PM. Reason: Company name and link removed. The sale of items or services is against forum rules.
06-11-2015, 07:08 PM   #19
Tabs
 
Join Date: Jan 2015
Location: Scottsdale, Arizona

My Support Groups:
I'm not sure if I should start anymore threads on this topic, but I was wondering if you can be on Remicade and start anti-MAP therapy. My doctor has my scheduled for my first infusion in a couple weeks and I contemplating canceling it until I get MAP results back. The problem with that is my quality of life is pretty crummy right now and Remicade is usually ineffective if you start and stop again.

Anyone have thoughts or experience with this?
06-11-2015, 07:30 PM   #20
rollinstone
Senior Member
 
rollinstone's Avatar
 
Join Date: Dec 2012

My Support Groups:
I'm not sure if I should start anymore threads on this topic, but I was wondering if you can be on Remicade and start anti-MAP therapy. My doctor has my scheduled for my first infusion in a couple weeks and I contemplating canceling it until I get MAP results back. The problem with that is my quality of life is pretty crummy right now and Remicade is usually ineffective if you start and stop again.

Anyone have thoughts or experience with this?
I've wondered the same thing, I know there's someone on here that does humira and anti-map, and I also know that they're now allowing people to remain on remicade and particulate in the rhb104 trial so there's a lot more of a shift in thought that the two treatments can work in synergy.
07-07-2015, 08:34 AM   #21
gardeniagirl
 
gardeniagirl's Avatar
 
Join Date: May 2015
Location: Land O Lakes, Florida

My Support Groups:
Hello stellarjess…just wondering how your appt with Dr Chamberlin went. We have an appt for my son in a few weeks and we are also so very hopeful this will work for him too!

We will be flying into El Paso from Florida…do you have any recommendations for hotels or transportation to Las Cruces?

Thank you so much and I wish you much success with the Anti Map Therapy!
07-07-2015, 10:56 AM   #22
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
Hi Gardeniagirl, I sent you a private message
10-07-2015, 01:59 PM   #23
Sean81
 
Join Date: Oct 2015
Location: 08736, New Jersey
Hello,
stelarjess or anyone else who has managed to make an appointment for anti-map, can you send me any info?

I would like to try this route before starting Remicade which has been prescribed. Any information is appreciated.
10-07-2015, 02:12 PM   #24
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
I sent you a PM, Sean81
10-08-2015, 02:52 AM   #25
AJC - Australia
Senior Member
 
AJC - Australia's Avatar
 
Join Date: Jul 2013
Location: australia

My Support Groups:
stelarjess - hey.
did you get a map blood test in the USA?
We dont have that yet in Australia…
__________________
diagnosed 1994 aged 18. 3 surgeries. Remicade is my drug.

I believe this could cure crohns disease.

-Dr John Hermon -Taylor is trying to cure Crohn's disease.
10-08-2015, 10:34 AM   #26
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
stelarjess - hey.
did you get a map blood test in the USA?
We dont have that yet in Australia…
No, I haven't had one. I'm waiting until Dr. Hermon-Taylor's blood test is ready to go, it's supposed to be more accurate I think. Also there is a "dying-off period" with the antibiotics/map therapy where if you do have the bacteria, I hear that you go through a week or two of feeling completely awful (bacteria is dying off). So that's an indicator that you do have the bacteria, without having to have the blood test.

*I haven't started anti-map therapy yet, my Dr. is still deciding if he'll prescribe the antibiotics.
10-08-2015, 07:36 PM   #27
AJC - Australia
Senior Member
 
AJC - Australia's Avatar
 
Join Date: Jul 2013
Location: australia

My Support Groups:
thanks stelarjess. I hear the antibiotics do work, but once you stop taking them it comes back! we cant win, or so it seems. I had a friend who took the antibiotics for 4 years, prescribed by thomas borody in Australia, but eventually he got sick of feeling sick and he had his colon removed and hasnt had problems since.
10-08-2015, 07:42 PM   #28
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
Yea I think it comes back because MAP is everywhere. It's in our meat, dairy, poultry to a lesser degree, even in our water from what I've read.

That's why I'm excited about the vaccine that Dr. Hermon-Taylor is working on. I think we're getting really close to relief. I spoke with Dr. Chamberlin on the phone recently and he said the research about the MAP bacteria is going to start being introduced into the GI community, starting this month with the GI conference that's happening in Hawaii. I hope doctors are open to all the research.
11-24-2015, 09:58 PM   #29
gardeniagirl
 
gardeniagirl's Avatar
 
Join Date: May 2015
Location: Land O Lakes, Florida

My Support Groups:
Hi Stelarjess....just thought I would check in on you and see how you are doing. Also wanted to give you on an update on my son since he started AMAT in July...and hopefully help others with this feedback. He was in a bad flare when he started...but even with that...after about a month he started feeling better and better. He is still tapering off Prednisone and also doing UVLrx treatments once a week along with Turmero (natural anti inflammatory) and Probiotics.... Vitamin D Injections and Myers Cocktails for extra vitamins. He is no longer in a flare and all his Crohn's symptoms are slowly subsiding. It is amazing and such a blessing to see him feeling good again! Hope your doctor agrees to give you the therapy...it is definitely worth a try!
11-27-2015, 02:15 AM   #30
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
Hi Gardeniagirl I'm SO glad your son is doing well! And pray he continues to stay well.

I'm still in remission, just recently had a MRI which confirmed no active Crohn's seen anywhere in my intestines. I'm 9 months post resection, no symptoms whatsoever, not on any medication. I FINALLY got my GI to agree to call Dr. Chamberlin and that was a month ago. He's tried twice so far (my GI is really busy), so just waiting for that to happen. Trying to remain patient because he could have just said no and not tried at all. I almost want to make an appointment with my GI and just call Dr. Chamberlin while at the appt because I've never had issues getting ahold of him. But again, just trying to give my GI some space and not hound him too much yet.

Happy Thanksgiving everyone!
Reply

Crohn's Disease Forum » Treatment » Anyone having success with Anti-Map therapy?
Thread Tools


All times are GMT -5. The time now is 05:46 AM.
Copyright 2006-2017 Crohnsforum.com