Anti-Map Therapy

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macmommy
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 7/9/2010 6:02 AM (GMT -7)   
I am beginning anti-map therapy on Monday. Has anyone had good or bad results with this approach? I will begin with Bioxin, Theanbutol and Rifabutin (spelling?).  Just looking for feedback or thoughts on therapy. Thanks!

ryan_jordan
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/9/2010 12:08 PM (GMT -7)   
I haven't tried it but am curious about it. where are you located? who is your doctor?

downgarden
Regular Member


Date Joined Jan 2010
Total Posts : 74
   Posted 7/12/2010 6:21 AM (GMT -7)   
Please keep us updated.
Im so curious to start the anti map myself. Thou I have just started worm therapy

macmommy
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 7/12/2010 10:42 AM (GMT -7)   
I will downgarden. What is worm therapy? Good luck!  Hope it works for you!

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/12/2010 4:36 PM (GMT -7)   
My daughter started anti-map treatment last December. It put her in remission but she had to discontinue the three antibiotics she was taking, rifabutin, clarithromycin, and levaquin because her white blood count went too low. She was switched to Xifaxan (1200 mg./day), had another colonoscopy last month and still no signs of Crohn's!

downgarden
Regular Member


Date Joined Jan 2010
Total Posts : 74
   Posted 7/12/2010 11:59 PM (GMT -7)   
Im just in the startup, week number 4.
Shouldnt give any signs jet but I think theres a huge differens already.

Where are you doing the anti-MAP?, was it hard to get an appointment? For how long will you continue the treatment?
Im fully confident that the Anti-MAP is the solution, THE CURE!! :) for 90% of all crohner.

macmommy
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 7/13/2010 5:21 AM (GMT -7)   

Mastersmom-so glad to hear about your daughter's remission!  I have been on Xifaxan since February, and it made me 90% better. Also, no side effects from it at all!  My doc, however, says I need get off of it, which is why we're going to try the MAP therapy. He thinks it may be the ticket for me since the antibiotic approach already seems to have triggered a positive response in my body.  Did your daughter have any side effects other than the serious one you mentioned? Thank you for your response!

Post Edited (macmommy) : 9/7/2010 6:23:01 AM (GMT-6)


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/14/2010 3:12 PM (GMT -7)   
We live in Ohio but we traveled to Dr. Chamberlin in El Paso, TX to get the treatment started. We could not find anyone in Ohio that would work with us.

Dr. Chamberlin told us that the sicker one felt after starting the anti-map treatment, the better it seemed to work. He went into an explanation about why and it all made sense to me at the time but my brain can not at this point explain it to you. Needless to say, it made my daughter very sick like she had a bad case of the flu and there was a certain length of time that this lasted. He had my daughter corresponding with others who had been through it so they were able to tell her what to expect and I also researched it on the Internet and found information about what to expect. Otherwise, I would have been more worried about how sick she felt. I believe I noticed, though, that two of the three drugs you are taking are different so maybe you will not experience this flu like reaction.

The nice thing about Xifaxan is that she has never had any side effects from it. It is the only medication they have given her that didn't make her sicker and she has taken most with the last one being Cimza last year. She is being given the Xifaxan by her general surgeon right now because in our area, GI doctors don't believe in any connection between bacteria and Crohn's. Since Dr. Chamberlin only prescribes anti-map for Crohn's, we were lucky to have the surgeon continue her treatment with Xifaxan. He has not mentioned discontinuing it but I have read where people take it for years. I know there can be a problem with taking antibiotics too long but having Crohn's reappear would be a bigger problem, in my opinion.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 7/14/2010 3:30 PM (GMT -7)   
Very curious about this treatment. I have never heard of it. Is it just taking 3 different antibiotics? I live in NY, does anyone know if any doctors here heard of this treatment? Is there anyone from NY that is doing this treatment now?
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/14/2010 5:46 PM (GMT -7)   
The anti-map treatment is three different antibiotics but different doctors seem to have different ideas about exactly which three they prefer although Rifabutin seems to be the one constant. Since you have unsuccessfully tried the other drugs as we did, I would goggle and see what you can find in your general area. I found Dr. Marcel Behr, Chief of Infectious Diseases Department at Royal Victoria Hospital in Montreal and Dr. Robert Greenstein, researcher at Bronx VA Hospital in New York as people who seem to believe in this theory and may be able to help you or point you in the direction of a doctor who will.

We traveled over 1600 miles to get started but we then just ordered the prescriptions from the hospital pharmacy where the doctor was and paid an overnight $14.95 shipping fee. It was considerably cheaper than buying the drugs in our area. So you might have to travel at first but it was worth it for us.

Also, I have talked with others that have convinced a doctor in their area to discuss this treatment over the phone with a doctor who uses it and then prescribe it themselves. You just have to spend the time investigating your options.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/14/2010 8:30 PM (GMT -7)   
The following link has an explanation of anti-MAP therapy and news about latest developments, like the clinical trials for a vaccine for Crohn's. http://www.crohns.org/treatment/index.htm
 
 
 
 
 

macmommy
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 7/15/2010 5:38 AM (GMT -7)   

Thanks so much for that link njmom. It sums it all up well! And, thank you mastersmom for sharing some of your daughter's experience. It is very helpful and informative. I am only in Day 2 of the antibiotics, but do not feel any side effects yet. The scariest side effect my doctor mentioned (besides nausea, stomach upset, etc.) is vision loss with the ethanbutol. However, he also stated he has never seen it happen. As a precaution, I am seeing an eye doctor once a month for the entire duration of the therapy per doctor's orders. He also did a number of blood tests and a lung X-ray on me prior to beginning the therapy. I feel like he is taking this very seriously, which is exciting and hopeful. It is an infectious disease doctor that is handling the therapy, and he is working closely with my gastro doc, who referred me to the program. I so hope it works and will keep you posted as I move forward. The therapy makes sense to me.

Mastersmom-I'm sorry to keep inundating you with questions, but I'm so intrigued by your daughter's experience. Why is she sticking with Xifaxan if evidence of the crohn's is gone. Just to make sure it stays gone??? :-) (which makes sense) ;-).   


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/15/2010 10:30 AM (GMT -7)   
We have been dealing with this since 2003 and have had the same surgeon. He continues to give her this medication and until he says to stop, I guess we will continue. I suppose he is as afraid as we are that it will come back again. When we first started the anti-map treatment, it was expected that she would continue it for a long length of time, even if she felt better so I guess it's possibly the same. It's all a guessing game in my opinion.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/15/2010 10:30 AM (GMT -7)   
Hi all... mastersmom, I just want to add that we spoke with Dr. Chamberlain very shortly after my son's diagnosis. What a wonderful, generous man he is! And what an "above and beyond" thing to do to provide people your daughter could talk to during her treatment! How wonderful!

He spent an hour on the phone with us (we offered to reimburse him for his time, but he declined). After many, many questions, he told us he didn't think my son was severe enough to treat with the anti-MAP therapy at that time. He also wanted to impress upon us this treatment isn't something to enter into lightly--that even antibiotics have their side effects. I appreciated his candor and advice, needless to say, and we decided to adopt the "wait and see" approach based on his recommendation.

During our conversation, Dr. C also gave us hope that my son's condition may improve and basically fade away. He did not give reasons why he felt this way. I can only guess it was based on his experience. He DID however, encourage us to continue to do everything humanly possible to BOOST his immune system--which we were already attempting to do. It's now 3 years later, and my son has been in complete remission since about the time of that phone call, and takes no meds. I know we are very fortunate... He also followed his diet (explained in my signature) to the "T" for the first 2.5 years, which I feel had a HUGE impact.

And I'm so thankful that this has worked for your daughter! Just wanted to share our experience, too! smilewinkgrin
Mom to 18 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.

Threads discussing diet:
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/15/2010 10:59 AM (GMT -7)   
EMom-As I may have explained before, I rarely leave my neighborhood and am not very adventurous. But after talking with Dr. Chamberlin on the phone, we blindly flew, two weeks later, over 1600 miles to be treated by him. I had just spent so much time researching this and really felt it was worth a shot. He is a wonderful man and is truly dedicated to his patients. I had his cell phone number and was able to contact him at any time while we were going through the months of treatment. I feel fortunate to have met him.

Thank goodness your son did not need this treatment but hopefully if his Crohn's ever reappears, Dr. Chiodini and Dr. Chamberlin will have more answers about treatment at that time. It is explained at thecrohnsdiseaseinitiative.com

By the way, we tried the diets. I can't say that my daughter cooperated completely with them. When you feel so bad, it's hard to further aggravate yourself with a strict diet and it was hard for me to keep nagging. But we made the yogurt and tried our best. It has never seemed that what she ate or didn't eat ever had much effect except she couldn't eat spicy or fried without feeling bad. She always thought bread made her feel better. I wish we could have done a better job of sticking to it completely just to see if it would have helped her.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 7/15/2010 12:02 PM (GMT -7)   
Hello Everyone, Can someone please tell me how I can contact Dr. Chamberlin, I would really appreciate it. Thank You
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Remicaid or Humira when I go back to GI July 27th.....I'm so scared :-(
Seton drain was put in on May 4, 2010....Two more Seton drains put in June 15th :-(
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/15/2010 6:13 PM (GMT -7)   
You can email him at williamchamberlin@ttuhsc.edu.

downgarden
Regular Member


Date Joined Jan 2010
Total Posts : 74
   Posted 7/18/2010 3:19 AM (GMT -7)   
what are the possible side effects?

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/18/2010 3:31 PM (GMT -7)   
As already stated, you have a very good chance of having flu-like symptoms at first. This treatment can also cause low white blood count and an eye problem.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/18/2010 7:19 PM (GMT -7)   
Also, the indiscriminate killing of ALL bacteria--even the beneficial--could have negative effects (yeast, thrush, systemic yeast, etc).

I knew someone undergoing this treatment who was taking something like 3 to 4 sachets a day of VSL#3 to combat the loss of beneficial bacteria. (One sachet packet has 500 billion beneficial probiotic bacteria! So I think that's 2 trillion that she was taking every day... shocked)

macmommy
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 7/21/2010 7:35 AM (GMT -7)   

Well-the flu-like symptoms have kicked in full force. I go for my 2 week follow up tomorrow where I can discuss it with the doctor, but mastersmom if you are still out there, I wondered if you might confirm whether or not your daughter experienced these same symptoms?? :-)

Chills

hot flashes

fever

mind-numbing fatigue (reminds me of pregnancy fatigue)

I'm pretty miserable right now, but willing to hang in if I could get better.  How long before your daughter started noticing improvement?

I do appreciate the feedback!


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/22/2010 6:28 AM (GMT -7)   
Oh dear, I feel for you. Sorry it took so long to respond. She felt so horrible and I felt so helpless. I kept wondering if this could possibly be right. Then I would call Dr. Chamberlin and he would be thrilled. Because he said that meant, from his experience, that it was working. And then I would talk to the other people who had taken the treatment,via email, and they would tell me the same thing. I can't tell you how long this went on but it was weeks. It will get better though so hang in there.

When my daughter was going through this, I tried to project in mind where she would be in the future after she was feeling better. She is in Korea right now doing martial arts. So she is obviously doing well. I wish I could help you more and I hope you have support to get you through this rough time. I will try to watch more closely and answer your questions because I know I was desperate for any encouragement at the time we were dealing with this. But I really am excited for you and hope you have the success my daughter has had.

downgarden
Regular Member


Date Joined Jan 2010
Total Posts : 74
   Posted 7/22/2010 2:53 PM (GMT -7)   
For how long is this threatment lasting when finished?
Do you know in advance for how long the threatment will last?

downgarden
Regular Member


Date Joined Jan 2010
Total Posts : 74
   Posted 7/22/2010 2:55 PM (GMT -7)   
I wasnt so precise :)

How long time the treatment takes,
and when finsihed.
Will you need to start it again after couple of weeks, months, years, etc?

// Thanks

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/22/2010 2:59 PM (GMT -7)   
(((MacMommy)))

I hope these side effects improve soon.

Hang in there,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

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