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MAC Mass in Bowel w/severe swelling
Sep 1, 2000

I've had MAC now for about 6 years with several hospitalizations (two visits I was told I would not survive). I have severe edema in my stomach, ankles & legs and have been on every treatment known. Now, unfortunately I have a mass larger that a softball in my mesenteric bowel and no one HIV Dr. will operate and the future looks dim. I continue to go and lead somewhat of a life.

Do you have any recommendations or do you know of any clinical trials involving such a severe case of MAC? Usually, I fail what few trials criteria because of previous med's or too low CD4 counts. If you or any of your colleagues have any suggestions, I would greatly appreciate it -- or any clinical trials.

Desperate in Atlanta.

Response from Dr. Feinberg

I don't know of any specific trials for MAC right now, but you could check The Body as well as the ACTIS website (among others) to see if there is anything available. It isn't entirely clear why no one will operate on you -- is it certain that this mass is due to MAC? There may be an alternative cause that is treatable, such as lymphoma. If a tissue diagnosis hasn't been made, then you might want to consider having a biopsy. Find out the reason why you have been turned down for surgery, and if it doesn't make sense, then find another doctor. There are lots of excellent HIV/AIDS physicians in Atlanta, at Emory, Grady Hospital, and in the community. Good luck!

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