• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Starting Anti M.A.P. treatment

Hope345

Hope345

Our daughter "B" has been through many of the common treatments for Crohns. She just had her 13th treatment of Remicade today, but remains in a flare most of the time.

We have had the privilege of talking and emailing a research doctor in Australia named Dr. Thomas Borody who came up with the anti M.A.P. treatment. It consists of three antibiotics.

We have done some research and found that this treatment has been 80 percent effective to reach remission.

Here is one recent article I found on line:
http://globenewswire.com/news-relea...ependent-Pediatric-Crohn-s-Study.html?print=1

Our daughter and I will be flying to Montana next month to be seen by the one doctor in the U.S. who will currently start this treatment.

I will continue posts on this thread as B prepares for the treatment and hopefully goes into remission.

I read on this site so many that are suffering and many parents that long to help their children. I dont like to conclude that there is one answer for everybody, because each person is different. But I hope this treatment will soon be available to everyone and may end up being the most helpful.
 
Last edited:
Hope345

Hope345

We have purchased our tickets and will be leaving to Montana on Sunday to see the Doctor willing to start the anti M.A.P treatment for our daughter. She will have another MRE and colonoscopy while we are there and then we will meet with the GI about the results before we leave.

This is a choice we have made for our daughter after talking with Dr Borody himself (the research doctor who came up with this treatment, lives in Australia), the research he has done and the fact that the results have been over 80% successful.

We also believe this is the path for our daughter. As we are able to start the treatment and hopefully eliminate the other treatments (Remicade, Imuran, Asacol, flagyl) I will let you know how she is doing.

She is currently having fewer symptoms and her flare is not as severe. This will allow us to travel without a lot of concern. However her emotional well being is at a low. She has almost given up and feels like there is no real treatment that will work.

I will give an update at the end of next week.
 
Last edited:
Farmwife

Farmwife

I hope and pray all goes well.
Have a safe trip and PLEASE update when you can.


What has to happen for this treatment???



HUGS
 
DustyKat

DustyKat

Super Moderator
Good luck Hope! I hope all goes well. :goodluck:

Prof Borody is certainly someone I have in mind should I ever need it. It certainly helps that he is the state as me.

Dusty. xxx
 
carrollco

carrollco

Many prayers will follow her. Mine included.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate. Humira quit on me, tried the natural route that cost me 500.00. Will stay on SCD. Currently on prednisone, waiting an approval for Remicade. 6mp is a no go as it hurt my liver and I am allergic to aspirin which rules out mesalamine. Biologics and prednisone are all I have left.
 
W

worriedboy

It's the most noble thing to see how you as a parent doing anything in your power to help your daughter with her condition.
I wish B a long stable remission and good health ... and who know ? maybe she will be the one of those whom this antibiotics coctail is like a miracle treatment !
 
Hope345

Hope345

Plane takes off in less than 24 hours. Starting to feel the stress. woke up early this am and am going on very little sleep... my beautiful 15 year old is sleeping away :)
Have heard from both departments at hospital for MRE and colonoscopy. We are all set for billing these procedures, steps to take for procedure and restrictions on flying... thank you for all of the support.

We have brought the senna with us, will buy the laxative drink in town when we get there...
she will start on clear liquids Monday am (but no liquids or food 6 hours prior to MRE)

Cant wait to give you all the good news that our daughter is in remission, back to school and has a great outlook on life. :)
wishing the best for all of you and your children as well.
Julie
 
rollinstone

rollinstone

God bless Jules! I'm excited for you, this is gonna work for her I truly believe it! The overwhelming evidence points to MAP as the main cause of crohns! Have a safe flight and I look forward to hearing of the success, please keep me updated on the protocol you're following and the initial side effects if any, (I've heard the worse you feel initially, the better you will respond).
 
FrozenGirl

FrozenGirl

How exciting. Such a great parent you are getting her the best possible treatment no matter what. I hope it puts her into remission, maybe even a cure. Best of luck.
 
Hope345

Hope345

Well, things did NOT go as planned. It has been very hard to understand what questions i forgot to ask this GI before we traveled specifically to see him and get the anti M.A.P. treatment.

This GI does not treat U.C. with the anti-M.A.P. therapy. However, Dr. Borody in Australia does treat it and believes it helps in most cases of U.C. as well as Crohns. It is a milder version with less antibiotics.

He is having her use the asacol enemas which have been impossible for her to do at this point, one month after her colonoscopy. She is currently flaring, anemic, dealing with major gas pressure and not eating or taking her meds very often.

We are willing to try the enemas to see if it helps once she feels like she can do it.

I am not totally giving up on the anti map treatment. We are hoping he will be willing to do it, if this treatment doesnt work.

The other thing I like about the new treatments is they work to build up the immunity system rather than bring it down. This is a big decision we have made to get her off of the Remicade and Imuran, but they didnt seem to be helping anyways. I do believe they may have served a purpose for a while.

We are now promoting probiotics, Vit D, iron, multi vitamin, calcium, vit c, and a good diet. She is currently taking oral asacol and plan to try the enemas as well. She is also using her cortifoam.

Things are very tough for her right now.
(We have an appt with her local GI coming up in two days. she is a by the book GI and will have trouble with our decisions. I pray she does continue to see Baylee when needed and work with us.)

I will have more to say in about a month.
 
Maya142

Maya142

Moderator
Staff member
Would your daughter consider seeing a psychologist? My daughter was very against it, but once she went, she said it helped a lot. The stress of having a chronic illness was really getting to her, especially because she never seems to be in remission, and she was just miserable all the time. She's doing a lot better now that she sees a psychologist regularly.
 
Hope345

Hope345

How old is your daughter? I am trying to get her to reach out to others her age, but it has been a struggle. I am not against it all... currently she is almost too sick to walk down the hall. Whatever helps, do it~~ I am currently even considering oil THC to help with the pain. They are so limited in what they can use.

sending the best to you and your daughter
 
Maya142

Maya142

Moderator
Staff member
She's 17 now. She's very shy though so I'm not sure she would talk to someone her age (though I think it would be SO good for her!). I'll definitely ask her.
There are a lot of mom's of teen girls on the forums.. Kimmidwife and Crohnsinct come to mind. Someone also posted earlier about a site for chronically ill teens. I think it was called Starbright world or something like that.
Are they giving your daughter something for pain? M takes Tramadol sometimes though she doesn't like the way it makes her feel. It really helps with the pain though.
 
Hope345

Hope345

Maybe some day when they are both ready, they will talk with each other. Our daughter is not ready to talk with anyone either...
after reading about the Tramadol, I decided to give her a pain med too. I dont know if it will help, but we needed to try.
She is at her wits end, feeling like there is no treatment that is going to work. I cant wait until she feels good again.

We just made her smile: we are getting her a kitten in a couple months. She said it will help her work hard to take all her meds.... It is a yes!!
 
Maya142

Maya142

Moderator
Staff member
Kittens always help! We got my girls kittens after M was diagnosed with arthritis (her older sister had been diagnosed a couple years earlier). They love them!
Thinking of you and your girl:ghug:
 
Hope345

Hope345

Maya,
thank you for asking.
First, the rash was gone by the time we got to the doctors. Weird, but this disease is weird to say the least.
She took labs so we will see how they all come out.
She was VERY concerned about Baylee, her stomach is extended, all the blood she is losing and the fact that we took her off both the Remicade and Imuran. I told her that they were not working...
It is scary seeing our daughter go through all of this and then her making it sound like we are not doing what needs to be done..... she would not even acknowledge that it had not been working
Our daughter has been good about taking her meds, eating well and it is helping :)
 
Maya142

Maya142

Moderator
Staff member
Glad she's feeling a bit better and that she made it to the doctor! What's the plan now, if not Remicade and Imuran? I'm guessing you don't want to put her on Humira or anything similar?
Of course the rash was gone once you got to the dr! They always are!
Hope she continues to feel better!
 
You must log in or register to reply here.
Top