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update question
May 23, 2003

I have written you in the past and I wanted to update you on my condition. I have repeatedly tested negitive on HIV tests (elisa and viral load) since my encounter of last July 2002. Whatever virus I picked up has remained with me. Symptoms that have stayed are: burning tounge and mouth ,sore throat, lip and mouth sores, and just recently changes with my fat under the skin and abdominal bloating. I have been extensivly checked out for all problems without any treatment or diagnosis. Here is my question: Why doesn't any of the infectious disease docs (inlight of the new SARS virus) entertain the thought there may be a new HIV type STD that is causing symptoms but would not show up on any current testing. I have a web site http://groups.yahoo.com/group/aunknownstdviralillness/ that has over 100 members that have had this problem. When I first started writing you I didnot know what to do and still don't. SARS got all the attention because people were dying today. We may not know if there is another HIV type virus out there until we start getting AIDS. Why can't some research center evaluate the people with this condition.

Don

Response from Dr. Wohl

Dear Don,

I appreciate your sharing the website address with us.

There have been investigations of persons with Idiopathic CD4 Lymphopenia (which most worried well do not meet criteria for). These studies have revealed no new infectious disease.

Most surprising to me is how the symptoms many HIV negative but unconvinced individuals now have are those seen when people take HIV medications (your own body fat changes for example) - signs we really did not see much, if at all, in HIV+ persons not on HIV medications.

I do not know why so many people write to this site convinced they have acquired an HIV like agent via an exposure associated with HIV transmission. It could be there is a undiscovered germ out there on the loose, defying detection (unlike SARS). It is also possible, and I'd argue more likely, that many people have other illnesses that are being ignored OR suffer from the physical manifestations of their own guilt. I know that is not the answer you are looking for, but that has been my experience and understanding of the problem. DW



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