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How Fear of HIV Can Destroy Your Life
Dec 31, 1997

Dear Rick:

I just read the recent post about how obsession with Acute Retroviral Syndrome ("ARS") and HIV can destroy someone's life. I am also one of those people. In fact, my obsession with HIV almost ENDED my life. I know that many of the readers of this forum are struggling with irrational fears and obssessions relating to HIV, so I thought I would tell you my personal story in the hope that someone in such a situation will read it and will seek the help that I didn't seek until it was almost too late. Some time ago, I had sex with an "escort." A month later I came down with symptoms consisent with ARS, and my nightmare began. Without seeing a doctor, I determined that it had to have been ARS and that there was NO DOUBT that I was infected (of course, it didn't matter that I used a condom and that I did not know whether the escort was infected). I decided that I wanted to start treatment for my "infection" immediately, so I went to a clinic to have a DNA PCR to confirm the "infection." The test came back negative. I couldn't believe it. The lab had to have made a mistake. So, I had more DNA PCRs. When they were negative, I decided that the test I should have had was a viral load. I started with a PCR (400 copies). When that was negative, I decided that I needed the ultrasensitive version of test (25 copies) because my viral load must have fallen after infection. When that was negative, I determined that I must be infected with a non B subtype of HIV that was being missed by the PCR. So, I had a bDNA viral load which I read can detect such subtypes -- negative. I then thought that the sensitivity of the bDNA must have been too low, so I had the ultrasenstive version (negative). By this point, I was completely out of control. In the ensuing months, I spent over $20,000 on HIV tests. I had over 100 (yes, ONE HUNDRED) ELISA tests (at 30 different labs), sometimes 4 or 5 a week (many with a same day or 24 hour turnaround). As the negative results rolled in, it simply solidified my belief that I was infected with some unusual variant of the virus that was eluding detection. My obsession and fear went well beyond excessive testing. My life, which was previously productive and active, was reduced to surfing the internet for information on ARS and HIV. Often, I would stay up all night reading about ARS and HIV. I would call labs posing as a doctor to get info about the tests that I took (e.g., "does the test pick up Type O?", "will it detect a recombinant version of the virus?", etc.). Not surprisingly, the labs didn't even know the answer to some of these questions. I researched treatment options, even picking out the drug "cocktail" that I wanted to start. I called the Center for Disease Control to see if they were interested in my case (they weren't). I even tried to enroll in a clinical trial (needless to say, my inability to document my "HIV infection" proved to be a barrier to my acceptance in the study). To make a long, long story short, I lost all of my friends, bankrupted myself, nearly lost my job, and eventually, after a failed suicide attempt, ended up in a psychiatric hospital for a month. I am now undergoing outpatient psychological counseling on a weekly basis and I can say that it has literally saved my life. I still believe that I am infected with some strange variant of the virus, but I am beginning to at least see the POSSIBILITY that I might not be infected. I still get tested, but instead of 5 times a week, I have only had one test in the last 3 months. I still surf the internet, but I am able to limit myself to one hour a day. I know I have a long, long road ahead of me, but I know that I am making progress and some day I hope to be able to get my life back. I also know that if I entered counseling when all of this first started then I may have been able to avoid much of the pain and suffering that I have gone through. In conclusion, I'd just like to say to anyone reading this who may be struggling with an irrational fear of HIV: please, please find a counselor. If one doesn't work, find another one. I know from personal experience that NO AMOUNT of testing will resolve these kinds of fears/obsessions and that, if let untreated, they can easily spiral out of control and destroy you. Counseling, however, WILL help you, and it may even save your life. Peace.

Response from Mr. Sowadsky

Hi. Thank you for your comments. Your situation is another good example of how fear of HIV/AIDS can destroy a persons life. Thank you for your comments and suggestions.

If you have any further questions or comments, please feel free to e-mail me at "nvhotline@aol.com" or call me at (Nationwide). Thank you.



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