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Could you please clarify a comment about finding an expert?
May 16, 2004

Dr. Sherer,

Thank you very much for your response and advice on my exposure in West Africa and the wrinkle - possibility of infection with an unusual subtype or group from that region or maybe even with another virus that commercial tests may miss.

I have learned that the ELISA detects antibodies to all M subtypes. However, I was also told after the West African exposure that the ELISA does not detect antibodies to every subtype with equal sensitivity.. less sensitivity the further one gets from group M, subtype B.

Can you please clarify what you meant in your answer by finding an expert in the "metabolic syndrome" and in "alterations in the B diagnosis"? Also, how does one go about finding such an expert who would also be able to deploy specialized tests that are not commercially available?

Finally,you noted that I'd not given my ID doctor's final opinion on my situation. Basically, he feels that the negative commercial tests after the window period make HIV less likely, but due to some bloodwork, possible exposure to subtypes (maybe even a group) that are rare in the US, he feels that HIV cannot be totally excluded in my case. He also leaves room for the possibility that some other virus from West Africa, for which there is no diagnostic test, might be the culprit.

Anyway, I plan on following through with your advice to find a diagnostic expert who could find less usual strains of HIV and who could also look for other possible infections that commercial tests might miss. So, your advice on how best to find such an expert would be very helpful (my doctor is great, but he is not really someone who is likely to find such an expert).

Thanks again for all the advice and help. Sincerely.

Response from Dr. Sherer

Most endocrinologists would qualify as experts in the 'metabolic syndrome', and most could identify those physicians who are most knowledgable on that subject within the field. A simple alternative is to search the medline or pubmed on 'metabolic syndrome', and look for the authors of review articles and large clinical studies.

There are several sources of information on virologists and HIV experts who are working with drug resistance. One example is the authors list of the IAS-USA guidelines on drug resistance (link noted below). Another, as above, is to search medline or pubmed for articles on resistance and on non-B clades. It would be best to consult such an expert who has experience in international HIV trials, and/or international drug resistance, as well as surveys of international drug resistance. Rather than pursuing this in isolation, I would advise consulting your physician during the process. He may also be able to recommend a local HIV expert who could provide advice during the process.

Finally, your physician is correct that it is impossible to prove a negative, i.e. to prove beyond a doubt that a person does NOT have HIV. As I noted before, the fear of HIV can be very powerful and difficult to overcome, in part because of this fact. Also, it can often be driven by guilt and shame over a potentially unsafe act, even when recommended protection was used.

It is common in my experience for people to seize on this fact, and let their fears of an extremely small chance of HIV take over their lives. While you pursue the science, I would also urge you to find someone, ideally a knowledgable professional, to talk to about this aspect of your search.

And finally, much of the pace and intensity of your search, to my mind, should be dictated by what is happening to your health. In your last query, you noted some clinical events (thrush and angular cheilitis). I would be sure to pursue any clinical signs and symptoms with your physician, and follow his lead on the level of concern your should have for a symptom. (For example, the average adult gets diarrhea 6 times per year, usually of short duration. An episode of diarrhea for a day would not raise undue concerns).

If your health is good today, enjoy it. Who knows what tomorrow will bring? You might regularly remind yourself of your doctor's current opinion: You do not have HIV.

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