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MAC and very low T-cell, no where to turn
Dec 15, 2000

My brother had been diagnosed with late stages of AIDS with a T-cell of 35 and viral of 750,000. Got on meds and his viral went to 5,000 and T-cells to 280. Then he got what I suspect is MAC and psymyositis (sp) in is leg and no one knows how to cure it. He's had it for about 9 months and now has an open wound for draining. His T-cells went down to 16 and viral up to 50,000. He is tired of fighting and only 38. No one in the small town in Florida knows exactly what to do. He's living with my parents who are also sick with cancer and alzheimers. I want to help!

Response from Dr. Feinberg

If he got MAC once his T cells were 280, then he probably got the form of MAC called "immune restoration syndrome". This responds to continued HIV meds plus MAC meds. Polymyositis is a different problem. It may be difficult for your brother to get access to doctors with enough HIV experience in a small town. I suggest that he try to seek care elsewhere, at least for a while, so he can get back on track and feel better. I think the best thing that you could do for him is to help him find appropriate HIV care, whatever that takes. Good luck!


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