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natural progression of HIV question

Mar 19, 2008

Dear Dr. Young,

Thanks for all of your professional assistance and insight that you provide on this board. I would be most appreciative if you could read this email.

I am a 31 year old heterosexual. Last summer I was not feeling well and had convinced myself after 'symptom surfing' via the internet that I was indeed HIV+. I finally tested--via the home collection method (HomeAccess test)--and the result was negative. It took several weeks for me to accept this result before I started feeling better. For the next 7 or so months, I felt fine and had moved on with my life.

Then, about 2.5 months ago (right around the new year), I started feeling some tingling and pain in my legs. This didn't alarm me as it was a feeling I had always associated with having genital herpes for the past 10 years. I would often feel pain and tingling in my feet, legs, and arms prior to a breakout. The pain wouldn't always be symmetric and it was often worst in the upper back of my legs. It would come and go and disappear for weeks if not months. However, 2.5 months ago, it didn't leave for a while as it stayed for about 2 months. It wasn't always constant (some days worse than others) and was mainly in my legs as opposed to feet. All my old HIV fears came rushing back as I started to notice the extreme difficulty I was having at achieving an erection in addition to the neuropathy-like sensations. The neuropathy pain has now subsided, but my testicles and penis seem to have shrunk in this looks as though I was never circumcized even though I was--that's how much my penis has shrunk. And forget about getting an erection.

In addition, I can't help but seem to think I am losing lean muscle. While my stregth seems to be fine overall, my physique seems to have gotten smaller. Also, I have developed quite a double-chin (fat redistribution?).

I am having a terrible time sleeping at night (I wake up at 4am and can't fall back asleep). I wake up very hungry and thirsty.

I know that I should go and get re-tested to confirm that I do indeed have HIV and that my result from last summer was in error. i took the HomeAccess test last summer after the 12 week window and have not had any potential exposures since.

My pattern of symptoms seems very indicative of serious and advanced HIV infection. I know that my Home Access result was in wrror last summer, however, I can't bring myself to get re-tested as I feel like life has played this cruel joke on me (you know, getting the courage up to test....getting a negative result...only to find out it was a false negative). But for as much as I have studied about the natural progression of HIV disease, my symptoms are textbook and are beyond the realm of psychosomatic due to stress and worry. I haven't even had as much of a cold this past winter, but apparently my body is breaking down and weakening.

Do you have any hypotheses as to why my HomeAccess ELISA test came back negative? Just a lab error?

Thanks so much for letting me vent and taking the time to read this.

Response from Dr. Young

Sorry, but we just can't (and don't) answer questions about "Do I have HIV" here.

In the end of the day, there are so many varied presentations of HIV (and lots of other illnesses) that it's very difficult to provide accurate advice other than one simple thing:

If you think that you may have HIV, the only way to know is to be tested.

If your tests are repeatedly negative (and you've not had any additional exposures), then look elsewhere for the cause. If the test comes back positive, then find experienced medical help.


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