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Scared of starting treatment.
May 13, 2003

Hi. I know this is a stupid question but should I start treatment? And, are the any other options rater than PILLS (i.e. once a month injections). For some reason I am scared to death to start taking those pills (and by THOSE pills I mean any of them). They scare me. I have been positive for almost 16 years and for the past 16 years docs have been trying to talk me into taking medication. Sometimes I even lie and get the prescription but I never actually start the medicationl. I have never had a O.I. however, I have had a few ANNOYING things pop up now and again but they always seem to go away. I have had MANY friends that have been on various drugs and ALOT of them have died (I know that it probably wasn't the pills) but here I am 16 years later and still fighting the good fight. My CD4 is not the best in the world (it flucuates between 104 and 300???) and my Viral load is kind of high (last could was around 70,000). Part of me knows that I need them but another part me of scared to take them. I lead a very busy lifestyle and don't want to be slowed down by feeling sick all the time. Very truly yours, Billy.

Thanks.

Response from Dr. Wohl

Dear Billy,

I agree completely with your aversion to HIV therapy. You have proven by your longevity and refusal to follow the path statistics would lay before you that numbers do not tell the story of the individual. You have done relatively well and may, in fact, be better off having not followed doctors' advice way back when we were treating everyone with one or two HIV meds alone.

That said, if your T-cell counts do drop, it may mean you have had a great 16 year ride but slowly your immune system is caving in. If I were your doctor and your T-cell counts were basically stable (and really more toward the 300 rather than the 100 end) I would try to decide with you at what point YOU would feel you should start medications.

This could be a decision to start meds if your T-cells drop to less than 200 three times in a row, or you unintentionally lose weight or get recurrent thrush etc. That would be a line in the sand which, if crossed, we'd agree, would prompt therapy.

Also, be assured, despite what you hear and read, HIV therapies are pretty well tolerated by most (again these are stats and can not predict what will happen to you). In addition, relatively few people take these drugs and spontaneously combust - meaning if you start taking them and don't like them, you can almost always stop and no harm done.

Make a deal with your doctor and yourself and follow your instincts and intellect - but don't let yourself be scared to death. You have come too far to do that. DW


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