Hi, I was diagnosed with MAC about five years ago. It was my first and only serious OI even though I had a CD4 count of zero for three years. Now I have been told I have it again. My CD4 count is 207 (31). My doctor says its a recurrence of my old MAC and that things should be better this time since I have "an immune system this time." Isn't it a bit strange to have MAC with CD4s this high? Does this mean I should resume PCP prophy as well. Last time my liver showed elevated alk phos - this time everything is normal - except I have ascites and no portal pressure problems. My doc says she never heard of this before. Have you? Last time I had MAC I lost so much weight I had to be put on TPN. Is it ever possible to develop immunity to MAC? Thanks but depressed again.
As I responded to the other "MAC again?" question, I think you have an "immune reconstitution syndrome". Ironically, this means your MAC disease is active because your immune system can now 'recognize' the germ in a manner that was impossible when you had no T cells at all. In situations involving MAC it is usually necessary to restart drugs for MAC to help get symtpoms under control, and then, as your immune system gets still stronger, the MAC drugs can be stopped in the future. Don't be depressed-- you should ultimately be better.