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HIV meds work on HICRT?

Feb 22, 2004

Hi Dr. Wohl

I am antibody positive for HICRT (rare retovirus that also causes AIDS).

My reverse transcriptase levels are very high, which is one of the reasons the doctors finally decided to check me for this (the test is not commercially available).

But they refuse to put me on HIV meds. The way I see it, RTI's should work on me if the level is high. Also, why wouldn't all or at least some of the other HIV meds work on me as well? If it's replication that is damaging my immune system, why not try and inhibit this? I don't really have any other options besides this.

I think the CDC wants to just watch what happens to me for their statistics on this rare retrovirus - i.e. watch me develop AIDS complications and die. And although I appreciate the honor of contributing to the advancement of modern medicine - I want to live!

Is there any chance that I might have in acquiring HIV meds to see if they will improve my condition? Of course, there is no way to measure my viral load at this point in time, but if my t cells respond well, wouldn't that be somewhat of a decent diagnostic measure?

I already have meningitis and cryptosporidium (spelling may be off) and I will experiment with anything to avoid the complications ahead.

Is there anything you or anyone else can do for me?

Response from Dr. Wohl

I not heard of HICRT and a Google search led me nowhere. If you provide more info, perhaps I can address your question.

Thanks, DW

chemo a good idea?
Can a Duke guy ask a UNC guy for time?

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