My report from the CDC concerning HIV neg with symptoms
Jun 5, 2003
David: You have been so kind to answer my questions conserning my illness over the past year. With the volumes of people that report symptoms but test negitive I want to share my visit with the CDC here in Atlanta today: Thursday May 30, 2002
After 10 months Of going crazy, today was the day I was going to the CDC and to not leave without talking to someone. Well in these times of terrorism the CDC is sourounded by concrete bunkers and a team of police. There is not any clinic or even a visitor center. There is building 11 where you can go as a visitor and wait to be escorted by a CDC employee. I went in and explained to the guard I needed to see someone that specializes in viruses. After many calls and being told to go to my local health dept. I told them 2 times I was not leaving. They called a lieutenent and I was about to be arrested when the CDC agreed to meet with me. They have a war room at the CDC just for the SARS virus. I talked about what I and others have been through. The first thing they told me was HIV is not the cause based on all the negitive testing. (10 months out elisa and PCR) They said current tests , have antibody detection for all the strains. He said my symptoms looked like that of a CMV or Herpes (in my case I was positive for Herpes 2 and 6.) They said to make sure everybody retests for Herpes and CMV because you may have been tested to early for antibodies to show up. They said that people retest many times for HIV but donot typically retest for other things. And even after retesting for HIV they don't beleive the result because symptoms continue. They told me that If I had active HIV infection that my CD4 percentage would be down and that my percentage has stayed in the 50's. They said The the family of Herpes type viruses can infect people with different severity and like mono it can take a long time to recover. When I asked them if this could be a mystery virus: They said it would be very rare and more likley we are being plagued by a Herpes type (Chronic Fatigue Type virus that can stay with you for a long time.) The team that met with me were really nice and they spent an extended period of time with me. I want to thank them for their help. So while I don't feel any better physically I have to move on from the doctor to doctor visits and get on with my life. I hope this report helps all those who read this. I have taken this thing to the top center at UAB ,Here at the body.com,webmd, my own web site ,individually to other ID Docs and now to the CDC. After all of this effort the conclusion is the same. In addition they said that exposures of low or no risk for HIV can easiliy transmit CMV or the Herpes type viruses or even viruses we don't have tests for. One thing that I did walk away with was that we were infected with a virus and did experience a viral syndrome it just wasn't HIV. Now this may prove that we were not the "worried well" it still does't give us a medicine that is going to clear all of our symptoms. But one thing it better do is cure us from repeating the behavior that started all this.
Response from Dr. Wohl
Thanks for reporting to us about your experiences and research. Good luck - DW
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