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rare strains of hiv into perspective; what keeps the fear going?
Dec 15, 2000

Hi Ryan. First of all thank you for this site, your patience, and your invaluable insight. I read with some interest your recent reply to rare strains of HIV. This has become a preoccupation with me (to put it mildly). My thoughts on this topic are relentless and difficult to explain. I never considered myself to be at particulalry high risk for HIV. But I am also the type of person who expects that "one in a million" could happen to me. It seems that this type of thinking lends itself well to preoccupations with HIV. About 6 months ago I developed what I thought was an opportunistic infection. Despite my medical background, I attempted to diagnose myself. Needless to say a little bit of knowledge is a very dangerous thing. Convinced that I had HIV, I lost my appetite and stopped sleeping altogether. This led to a plethora of "symptoms" including weight loss, diarrhea, difficulty concentrating; you name it. Panic attacks arrived without warning; at work; on the street; in a store. It seemed like I could not regain control over my racing heart; day or night. This acute madness persisted for several weeks while I contemplated every possible way in which I could have contracted the virus. I became adept at monitoring my body for symptoms. Every contour of my mouth became a source of extreme concern and panic. Was that there before, or is this something new? A "bump" I've had since birth, or a symptom of HIV? At times to maintain my sanity (and my job)I avoid the mirror altogether. Over time I have managed to accumulate a "wealth" of information on HIV. I have called the CDC so many times that frequently I find it necessary to disguise my voice. At one point I thought they were on to me when one individual offered to mail me "all the written material available on HIV 2". Quite often, persons answering the phone do not even know what I am talking about. Exasperated, I recently suggested to one well meaning person at the CDC that he should do some research. I found it unbelievable that he had never heard of HIV 1 subtype I recently isolated from HIV patients in Cyprus. Sometimes I overlook the fact that I was even tested for HIV. Not too long ago, I thought that there must have been a mix up in blood samples (I went so far as to confront the test center about this). Perhaps the test I had wasn't "complete", and I have a rare strain that current tests are unable to detect. These "obsessions" persist. I make light of it here. But there are nights when my heart is racing at 3 am. I lie awake contemplating a million different scenarios that could contribute to what must be a false negative. When I read posts and questions on this forum I know that there are many people who are experiencing this. The fear of HIV tends to take on an all consuming and selfish life of its own. How many countless hours have I wasted with this obsession? In that time I could have helped someone else, spent time with a friend, or pursued an interest. I wish that my past did not include "questionable" experiences and "what ifs". Nothing I have ever done was worth feeling like this. And I do not think I deserve to feel like this. And yet I am terrified to move forward. There are too many unknowns; too many uncertainties. For whatever it's worth I wanted to share this with you. Thank you for the information provided on this site because it has in fact helped to put some things into perspective. At the very least, I know that I am not alone...

Response from Mr. Kull

Thanks for your honesty. It sounds like you are going through a really difficult time. You are definitely NOT alone.

Let me make a suggestion: trying to convince yourself that you are or are not HIV infected is going to be an endless, painful process and will probably continue to disrupt your life. Try doing something radically different and find someone to help you treat the symptoms of the anxiety itself. There are many options out there for people in your situation. Visit the National Institute of Mental Health's page on Anxiety Disorders to learn more about anxiety, anxiety disorders, and how to treat them.

RMK



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