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Your comment about atypical strains is so on point!
Apr 24, 2004

Dr. Conway,

I read with great interest your reply to someone who had complained about misinformation about HIV testing and window periods. I must say that you are highly knowledgeable in an area where even many HIV specialists are not - their expertise kicks in when someone has been diagnosed and they rarely know even what antigens/proteins are used in the commercial lab to which they send patient samples for ELISA testing.

You mentioned the desirability of a CD4 count and testing for the virus where antibodies are not produced due to an atypical strain of HIV. HIV has been strongly suspected as the cause of my illness for 2 years (very high risk exposure to someone known to be HIV positive, very ill 2 weeks later and still am a couple of years after, low CD4/CD8 ratio, CD4 cells that decline by up to 400 cells between tests...though have stayed >500, reactive lymphocytes on a blood smear etc. etc.).

My question is this: what other testing would you recommend when someone has had negative ELISA's 12 and 14 months after exposure, negative bDNA, negative DNA PCR and a negative co-culture with PBMC's? Two HIV specialists still think a rare strain of HIV is a high suspect due to signs and symptoms...are there any tests beyond what I have had that could show the fingerprints of a retrovirus,specifically a form of HIV? Problem is I have low serum IgM and IgG levels (just below normal), low alkaline phosphatase (lowest end of normal...32, with normal extending into the 100's)...I am told that all of these could result in not producing antibodies or that - as you wrote that person - there could be an atypical strain so the ELISA's are not finding the antibodies. Problem with the bDNA and Roche 1.5 that are best for finding non B starins, is that their range is limited to M group A through G and my doctor tells me there are various other strains and maybe even new M subtypes in the making and which are not yet known (just as the M group alphabet acquires more and more letters as time goes by and HIv continues to mutate genetically).

So, any other testing you would recommend to nail this down...a test that would find another marker for a retrovirus? For example, is there an enzyme that every strain of HIV would have to leave...markers for every genetic type of retrovirus... and which a test could find? They won't try HAART on me,despite very bad symptoms 2 years into this disease, because despite very low CD4/CD8 ratio, my CD4's have not gone down to the level where HAART is indicated and they have not had a positive ELISA or bDNA/or 1.5 test.

So, my doctors are puzzled...bloodwork shows something has been brewing and the fact that this came soon after a very high and stupid risk exposure to HIV, plus low CD4/CD8 ratio plus CD4 cells that go up and down by 400 cells or more beween subsets (same Lab and same approx times of blood being taken)...a lot of doctors would say I cannot have HIV.Mine (and some other experts who know the issues and problems in testing for rare strains) look at the exposure and fact of terrible symptoms soon after, at signs of qualitative immune issues (cheilitis, actual thrush etc.) and think that there is some possibility in this case of infection with a mutated or atypical strain of HIV.

So, your advice on other avenues of testing would be much appreciated. Any tests, even in research settings, where they can find unmistakebale fingerprints of a form of HIV or other retrovirus that circumvents the problem of genetic deviations?

Thank you very much for your help.

Response from Dr. Conway

This is getting even more unusual than jsut unusual....

The kow CD4/CD8 ratio is perplexing and needs explanation. This may not turn out to be HIV or a retrovirus, but we picked up an atypical case by sending a plasma sample for resistance testing. As part of this process, it sequences the virus using a technique that is quite different from Roche PCR and bDNA and it may shed some light on the subject.

As far as a research-based test to pick up whether a retrovirus may be present, all retroviruses have an enzyme called reverse transcriptase and there is a highly specialized test that can be done (again, only in a few large research laboratories) to figure out if there is evidence of activity of this enzyme in the plasma or cells. But this is really reaching...

I would, in addition to all this, ask you and your doc to consider other causes than HIV or a retrovirus for the findings you describe.


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