I occasionally stop by just to see what's new on the forum. My daughter took Anti-Map through Dr. Chamberlain in 2009. She takes no medication now and has had no symptoms since then. She did have...
There is much more to this theory than one trial but every time I tried to talk about my daughters success with it, others shot it down. If the gastros have the answer to the cause and cure, then...
My daughter went to a group of 25 different GI's in one practice so if you were at the hospital, you might get any one of them. They never knew what was going on with you and it always amazed me most...
I must tell you first of all that Dr. Chamberlin is the best GI doctor I have ever met. You can tell that it is in his heart to find an answer for you. He gave us his cell phone number and told us to...
My daughter tried every conventional treatment for Crohn's and she was either allergic to them or they lowered her white blood count. She was one of the first to try Humira and also Cimzia at her GI...
I gave you some information about my experiences at Ohio Gastro and I told you about a friend we have with Crohn's who could not get positive results there and was desperate. We gave him the name of...
My daughter originally took Xifaxan in a low dosage and it really seemed to help but the GI she had at the time was afraid to continue with it. I had read that she really needed a higher dose and for...
Where to begin? My daughter has Crohn's and we have been dealing with Ohio Gastro, Olentangy group, for years because they're about the only GI's in town and the only ones at the hospital near us. I...
There are 25 doctors there. Which one are you seeing. I haven't much good to say about most of them....
I guess I will be the one with the nightmare story. My daughter has had many scopes, was always very sick and vomiting with the bowel prep, and worried needlessly that she was cleaned out until she...
You are my hero. We live in Columbus but have tried the Cleveland Clinic also. It has been an uphill battle to find a GI doctor we can recommend for Crohn's. We'll let you know if we ever do....
My daughter was going to a GI in a practice of 25 doctors. When she was having surgery, her surgeon could not get in touch with the GI to the point that the surgeon suggested to her that she get...
Our favorite GI at the gastro group my daughter went to told me that their practice really wasn't set up to doctor out patients. They were too busy with the hospital patients, scheduled procedures...
My daughter's old GI's nurse actually told my daughter over the phone to take Ibuprofen for her pain. My daughter had to tell her Crohn's patients shouldn't take it. Appointments had to be made...
My daughter took Humira successfully for a short time, had surgery, and then when she restarted Humira she broke out in hives badly. The hospital and doctor told her to never take it again and the...
REJ - My daughter has Crohn's and tried every conventional drug for it without success. Which forced us to find help on the Internet. We read about Dr. Brody and even tried to make arrangements with...
My daughter earns her living as an athlete and in teaching her sport. After years of dealing with the pain, she says she would have given up years ago if she didn't have this passion for her sport in...
My daughter has been going to one of the few adhesion specialists in the U.S., Dr. John Semertzides, and he tells us it's not that easy to control adhesions and can take several surgeries, even when...
The same thing happened with my daughter who's Crohn's is in remission. I have been told that adhesions can start growing back within 72 hours and usually with a vengeance but how quickly it gets as...
I have been following your condition for some time because it is so similar to my daughter's. Xifaxan was a big help at one time but she has major problems with adhesions. I know you had surgery...
My daughter's fistula healed after only 1 of 3 treatments of Remicade! That was in 2004 and she has not had another problem with it since. I remember the drain was jabbing her constantly and it was...
My daughter goes to a pain clinic. Pain medication is not handed out freely by doctors any longer and they usually encourage you to do so. I am sorry they don't seem to be helping you. I would call...
Over the years, I have been very frustrated by doctors and their opinions. I use to be foolish enough to think they should know what they are talking about. At our hospital, 25 GI doctors would...
My sister-in-law, Becky, is celebrating her birthday today too. There's two of you! Happy Birthday!...
A doctor once told my daughter that her immune system was 'retarded'. What a thing to tell a young lady. We never saw that doctor again....
Before my daughter got sick, we thought so highly of the medical profession. Now we are so bitter by all that has happened. I don't know how sick people are suppose to continue searching but there...
My daughter and also a friend of ours both went to XXX for Crohn's at Cleveland Clinic, if that's who you are talking about. Not only did he not have the answers or want to listen about the pain, but...
My daughter having Crohn's saved my life. She was a patient at the hospital when heart related pains I had been trying to ignore turned into a heart attack. The nurse in her room rushed me to ER and...
The point that is usually made is that these things can be triggers in some of those that are susceptible to Crohn's. My daughter still avoids swimming pools because of the chlorine. It's horrible to...
Better remove your shower because I have read somewhere that the chlorine is suspected of causing Crohn's and it was suggested that a filter was necessary for even bathing because the chlorine seeps...
I too would like the name of the doctor in PA that is an adhesion specialist....
When people tell my daughter what to eat, it is always the opposite of the low residue diet, naturally. They look at her as though she has gone mad when she explains: white bread, no fresh fruit or...
Wow Linn. Your doctor seems to know more than any we have talked to. Her Humira restart was in 2008 and we have not found a doctor since that has even given us a hint that there was any possibility...
My daughter had the tube when she woke up from her 'open' resection in 2008. She is easily nauseated and I think she may have needed it. She has a deviated septum and they did make a bloody mess...
When my daughter stopped Humira for resection surgery (the theory being that Humira healed inflammation thus causing a stricture) and then tried to restart, she had a severe allergic reaction--hives...
What my daughter hates most is, "Are you okay now?" For most people she tells them she's fine just because she doesn't want to talk about it and hear all the stupid things people can say to you. All...
Doctor's always told my daughter she couldn't restart Remicade. She had three doses to heal a hole in her bowel years ago. She was told she couldn't restart by the Cleveland Clinic as well as local...
I can only tell you my daughter's experience. She has had such a hard time in the past drinking golytely for her scopes. I have twice been stuck in a hotel room with her prepping for a scope for an...
If there were a choice, I would pick no drugs at all for my daughter. Heck, I would pick no Crohn's Disease also! As it is, the anti-map treatment of antibiotics had less consequences than all the...
I was also told by Dr. Chamberlin that the test takes longer than just proceeding with the treatment and seeing if it works. It seems like he said the test took 4 months but maybe I'm wrong about...
It is very confusing because so often when I talk with people on anti-map treatment, their doctor has chosen different antibiotics. I guess doctors have different opinions on what is best. You can...
The three antibiotics my daughter was on were Rifabutin, Clarithromycin, and Levaquin. Rifabutin and Rifampin are related. As I recall, Rifabutin is more expensive and the one preferred by her doctor...
emptynester - I wanted to let you know that I also am my daughter's advocate for her Crohn's and I don't make any apologies for it. No one knows our particular situation and should not question it....
One of the anti-map drugs my daughter took turned her sweat, skin, and urine an orange color but I just noticed the name of your drug is a different one....
There is a maintenance therapy but we never got to that point. (My daughter is taking Xifaxan instead because the anti-map treatment caused her white blood count to drop.) The people I talked with...
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...
Such a problem for most of us. Our monthly premiums are very expensive because we are self employed and then so many of the drugs are not covered. (One is $980/month and she doesn't qualify for any...
Changing doctors can be expensive and frustrating so we tried to stick with the doctors we had. But it was just postponing the inevitable. Now that I look back on it, I see how much time was wasted....
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....
You can email him at [email protected]....