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Do you experience the virus as I do? It really sucks!
Mar 28, 2004

It makes a big difference, being HIV positive and ill most of the time (oh, man, do I get so incredibly ill so often!)...to have you there and to see your incredible courage in the face of this frickin' virus. I have maybe one or two good days every month, the rest being a living hell. Though repeatedly positive by ELISA and WB and DNA testing, no detectable viral load yet I feel so amazingly ill almost all the time...blocked throat, painful nodes,overwhelming nausea, burning and clammy skin, myalgias, sweats, lipodystrophy and plenty more.

How can this be with an undetectable VL? There is such a contradiction in my situation, because an undetectable VL is supposed to be associated with few to no symptoms, right? Not yet on meds, because I am undetectable and also - as of last count - had normal CD4 count (though it seems to fluctuate by a few hundred cells each time it is measured,so something is killing them and then causing them to replenish).

How do you cope? Do you also have days when the symptoms just kick in and are intolerable? How do you get by? I have a good job that I have fought to keep, because I enjoy the work...yet so often, I am feeling amazingly ill at work.

So, any advice that you can give on how to get through those really rough days? Is this what it is about...from now till the day I die, facing mostly days of ill health...some symptoms. Or,do you think there is hope for a cure or at least meds that are less toxic and more effective?

I am almost frightened to stop typing, because the symptoms are so bad today and this e mail is causing me to be focused on something else. It wouldmean a lot if you could share how it is for you...do you have those days when the virus just asserts itself and wrecks the day and night? Do you think I should consider going on therapy despite the nondetectable VL and normal T cells? Maybe the virus is very busy in my Lymph nodes and other compartments of my body.

Anyway, I'd really appreciate hearing from you and wish you much good health in the future.

Best wishes.

Response from Dr. Frascino

Hello,

First off, are you sure you are indeed HIV-positive? Have you seen an HIV specialist? If not, you should. The reason I'm bringing this up is that you say you are "repeatedly positive by ELISA and WB and DNA testing," but you have "no detectable viral load." Is the DNA test you are referring to PCR-DNA? If so, that is a viral load test. So how could that be repeatedly positive, while your viral load is consistently "undetectable?" Also with completely normal CD4 counts, I also have to wonder whether your myriad of symptoms is indeed HIV-related or not. Something just isn't adding up here, guy. You can read about my personal experiences with the virus in the archives, but perhaps more important at this moment is that you figure out exactly what's going on with you. Start by seeing an HIV specialist. You may have a very pleasant surprise in store: You might be negative. And even if you are confirmed positive, the HIV specialist should be able to evaluate your symptoms and get you feeling better relatively quickly. Finally, no, HIV medications are not advisable for you at his time.

Dr. Bob



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