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)
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) ;-).
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??
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!