I started Anti-MAP therapy

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Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/10/2009 6:05 PM (GMT -7)   
Well, I am embarking on a new journey to rid myself of Crohn's. Take 3 different antibiotics daily to kill off a very stubborn bug that may cause Crohn's. Certainly does in cattle. I'll post how I am doing from time to time.

Jason

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 3/10/2009 6:09 PM (GMT -7)   
I've been reading up on the anti-MAP stuff a lot lately, I find it really interesting. How long ago did you start the antibiotics? Have you noticed any improvement yet?

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/10/2009 6:20 PM (GMT -7)   
Good luck, and please do keep us updated!
Co-Moderator Crohn's Forum.


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 3/10/2009 6:24 PM (GMT -7)   
I am very interested in the anti-map theory. Please provide more info.

Which country do you live in?
What antibiotics are you taking?
How long do you have to take them?

I hope it works, and please please let us know!

Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/10/2009 6:24 PM (GMT -7)   
I just started yesterday on two of them. The third has to be approved by the Division of Special Pathogen and Immunologic Drug Products at 1-301-796-1600. It is called clofazimine. From my what I have learned from my friend on it, it takes about 4 months to notice change.

Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/10/2009 6:25 PM (GMT -7)   
I live in the USA. I am taking clofazimine, mycobutin, and clarithromycin. Ramping up the dose after a month.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/10/2009 7:04 PM (GMT -7)   
Good luck, keep us posted.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 22.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/10/2009 7:10 PM (GMT -7)   
Thanks. How are you doing staying away from gluten and dairy? That helped me a lot.

Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 3/10/2009 7:28 PM (GMT -7)   
I think it helped alot at first, not I'm not sure. I think I'd be worse if I ate gluten and dairy, but it hasn't been a cure all by any means. Once I'm back in remission I MAY start to reintroduce them back VERY SLOWLY, but who knows I might be too scared to.....
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 22.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/10/2009 7:37 PM (GMT -7)   
I'd stay off it all. SCD worked wonders for me, except I fell off the bandwagon 4 months into it and haven't been able to get back on.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/10/2009 7:38 PM (GMT -7)   
Ya I hear you. SCD didn't do much for me, made me bleed.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 22.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


medieval_peasant
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 3/10/2009 7:43 PM (GMT -7)   
I spoke with a very well known crohn's researcher who told me to keep watching the research being done on mycobacteria.  He seems to think it very promising.  It seems that a lot of people who have gone the "natural route" have used probiotics and various techniques to rid the colon of bad bacteria and cultivate good bacteria.  If a bacteria is responible for this disease then I think it may help to explain better why certain people are able to get better without drugs.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/10/2009 7:45 PM (GMT -7)   
Unfortuntaely it seems most of the research is being done on TNF's, not bacteria. It's better than nothing, but I wonder if they're on the wrong path
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 22.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 3/10/2009 8:07 PM (GMT -7)   
Jay,

Excellent news. Please keep us updated. I have an appointment next week with my GP to convince him to put me on them.

Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/10/2009 8:41 PM (GMT -7)   
Let me know how it goes with your GP.

taadaa
Regular Member


Date Joined Sep 2008
Total Posts : 20
   Posted 3/11/2009 6:00 AM (GMT -7)   
I have been having test done -specimens, scopes, bloodwork- that have shown bad bacteria in my bowels and
very little of the good stuff. I see my dr on thursday to discuss the results and a treatment plan.
I am really excited that this new treatment will help many crohn's patients!
Let us know how you are doing.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/11/2009 6:39 AM (GMT -7)   
Do they do any tests beforehand to see if you even carry MAP?
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/11/2009 6:51 AM (GMT -7)   
No. But from the research done, about 90% of Crohn's patients have MAP

taadaa
Regular Member


Date Joined Sep 2008
Total Posts : 20
   Posted 3/11/2009 1:22 PM (GMT -7)   
jay, where can I find the research that has been done on MAP?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/11/2009 1:35 PM (GMT -7)   
I too would like to see this research. Not to be argumentative in anyway, but I don't think MAP is the end all to be all and don't believe that most of us have it. This is just one theory among many. I do hope for your sake though that this is the answer for you, but don't necessary believe that its the case for all of us. JMHO
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 3/11/2009 1:43 PM (GMT -7)   
Nobody said it's the end all solution. Not all Crohn's patients have it. However, studies show MOST patients do. I think it's worth a try.

Read this article:

http://www.pccnaturalmarkets.com/sc/0509/sc0509-hw-crohns.html

I emailed Dr. Lipton a few months ago to see how she's doing. She said she hasn't had symptoms of Crohn's for years now and can eat everything. I've read about similar results from numerous other patients.

craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 3/12/2009 11:40 PM (GMT -7)   
Hello Everybody.

I had an ileocolectomy in October, and the lab is supposed to be able to test the specimen removed for MAP, although I requested the test about a month ago and haven't gotten the results back yet. I am told it takes a while...we'll see. I am from Alaska, but in Seattle right now, for an appointment with a Gastroenterologist. This particular doctor made me feel silly for even asking about anti-MAP treatment and pretty much says Humira or Remicade is my only option (in her opinion--since I apparently have "fistulizing" Crohn's and currently have a fistula to the skin)....Anyways, I've been trying to find a doctor/gastroenterologist that has experience treating people with antibiotics. I did find a Dr. in Florida that used to do so, but stopped because of the FDA for some reason.

Does anybody know of a good Dr. I could go see (anywhere!) that would be able to give me another opinion and prescribe antibiotics????

I am wary of starting Humira or Remicade...I would love an opinion from a doctor that isn't trying to push $2,000 shots on me after a 15 minute visit. I also find the MAP theory very interesting and would like to get as much info as I can about progress with the treatment.
craizy_daizy

-22 y/o alaskan
-resection oct '08
-diagnosed nov '08
-currently on asacol & flagyl


Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/12/2009 11:51 PM (GMT -7)   
E-mail my friend David who has been on anti-MAP therapy for a number of years . He is a great resource.

finally_igotit@hotmail.com

Phoebe5631271
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/13/2009 1:00 AM (GMT -7)   
Hi everyone!!
_____________________________________
Sorry the post is against the rules due to your vested interest, but if you would like to be added to our resource directory please email admin@healingwell.com
 

Post Edited By Moderator (MMMNAVY) : 3/13/2009 6:51:43 AM (GMT-6)


craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 3/13/2009 10:23 AM (GMT -7)   
What's with that last post...?? It was "against the rules due to your vested interest"?? What does that mean....
craizy_daizy

-22 y/o alaskan
-resection oct '08
-diagnosed nov '08
-currently on asacol & flagyl

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