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Please help me dr. Bob
Apr 2, 2003

Hello, I am 29 years old female from East-Europe. I have been with this forum 1 year and 4 months but this is my first time to write you. To be honest you are best here and in whole Internet. Thank you for being here. I have got a lot of support and hope here. Here is my story: In December 2001 I did a most stupid mistake in my life. I had sex with young man whom I had met at the same evening in a night club. He was Scandinavian and told yourself to be HIV negative. And guess what happened. The condom slipped off. We noticed that too late. I started to worry about HIV at that moment. And here comes my nightmare for last 16 months. Three days later I got a very bad dry cough. This lasted 1,5 months and was the worse I have ever had. I had a low temperature also 37,2 - 37,5 C for several months. Two weeks later I started to have hot flashes and night sweets. Some nights I woke up and all my body was totally wet. This lasted for a month. I went completly out off my mind. For the beginning of January I lost 3-4 kg. I have been all my life slim and in good shape. I didn't lost much in kg but within two weeks all my clothes were large for me. I didn't have any doubt about my HIV positive status. I got a terrible candida, had insomnia, strange tingling in my hands and legs, itching skin. My hair are still falling out more than normal. In my country here are known a little more than 2000 HIV- positive people. So our doctors can't be very competent. After 6 weeks I visited a doctor who is an infection deasese specialist, maybe best in my contry. She orded HIV 1/2 test, hepatitis tests and a complete blood work. HIV and hepatitis tests where negative and blood OK. She told me that normal blood formula after 6 weeks doesn't indicate to infection and she hopes me not to be infected but told to retest after 3-months mark. They only found out like I had had a light pmeumonia. I visited also my gynecologist and was tested for evry STD. Evrything OK, except candida I have had several times earlier. I HAVE BEEN TESTED AGAINST HIV 1/2 SINCE THIS ABOUT 30 TIMES DURING 16 MONTHS. You must know how much stress involves waiting for results. I feel like I die every time. Oh my dear... After 6 months I had a RNA PCR test and this was OK. I have been tested really many times, including a 6 month RNA PCR. This should be a definite sign I am OK. But I am not. Why not? BECAUSE I AM THINNING and my bodyshape is changing!!! My weight was 57-58 kg. Today I have 55 kg. It seems I have lost at least half of my buttock, my legs and arms are very thin. There may be some fat loss in my face because I have got some wrinkles. At the same time I have gained lot of fat to may stomack. HOW CAN THIS BE??? My doctor says I am HIV negative because all my tests during 16 months have been negative. These are done in 2 different labs and these are best and very respected in my country. I also repeated hepatitis tests after 6 months mark. I exercise every week and eat healthy, I am not diabetic. What can this be? My doctor - the same infection deasese specialist doesn't want to discuss that anymore because it seems I am copletely OK. She do not accept to check my CD4 count or oder another RNA PCR. But what causes these terrible body changes to me? Could this be some new or rare HIV strain? I am afraid to eat because after that my stomac looks especially bad. And my buttock looks so bad. 8 months back I met a man who is a very nice person. I LOVE HIM, HE IS ALL MY LIFE. He is HIV negative. I haven't talked him about my terrible story. Because my negative test results it seemed there is no reason to alarm him about my past. After my 10 months negative HIV 1/2 test I was so happy and we started to have sex without protection. This is better your can ever dream. He loves me. He is the best person in the world. He is my life. And I have this HIV nightmare with me. My bodyshape changes seem to go worse. And there is only one question in my head: AM I INFECTED DESPITE ALL THESE NEGATIVE TESTS and CAN I INFECT HIM??? During 16 months there haven't been a day I haven't think about this deasese. Two weeks after our first sex without protection he got a bad cough and he seems to become thinner. I can't live with this anymore. I have sought for mental help but this didn't help at all because I can't stop thinking. Dear dr. Bob what do you as a specialist feel about my situation? What else tests can I do or ask my doctor to do? How can I live with this? I feel like it's better to be dead. I have problems at work already because I can't concentrate. I beg you to answer soon. Dear dr. Bob your are my last hope. Tank you and all the best to you and your family.

Response from Dr. Frascino

Hello 29-year-old Eastern European Worrier,

Now just hold on a minute here and lets take a closer look at your concerns. First off, your risk: -- unprotected receptive vaginal intercourse (because the condom slipped off) with a person of unknown serostatus. Even if your Scandinavian hottie was confirmed HIV-positive, your risk would only be 0.1 0.2 %. In other words, there is really a very low risk of contracting the virus from this single episode. The fact that your lover-boy was of "unknown" serostatus lowers your chances even more!

Next, symptoms 3 days after an exposure would not be related to HIV. Your cough, hot flashes, and night sweats (note that "night sweets" are like the small chocolates left on your pillow at night in fancy hotels) are all very consistent with your "light pneumonia." In fact, these symptoms are classic and very characteristic for that kind of infection. We often call it "walking pneumonia" here.

Next, your workup for HIV has been excessive. Over 30 HIV tests in 16 months, including negative RNA PCR up to 6 months from 2 different labs. Gee whiz! I wonder why the infectious disease doctor doesnt want to order more RNA PCRs or a CD4 cell count. Any idea why that might be???

So now youve got this great guy in your life, and after 10 months of negative HIV tests, you start having unprotected sex and its "better than I can ever dream." Well, I dont know about that. Even though I cannot have unprotected sex, Ive had some pretty amazing dreams! So anyway, 2 weeks after your first unprotected roll in the hay, you say your boyfriend "became thinner?" Well, I suppose if you guys have really, really wild sex, and burn off an amazing amount of calories doing "it," then maybe lover-boy could slim down a pound or two. At any rate, this is certainly not due to HIV. You cant give him something you dont have. Thats just impossible.

So what about your symptoms stress, "I feel like I die every time (waiting for results of the 30 tests)," "there hasnt been a day you dont think about HIV," you "cant stop" thinking about it, you feel its better to be dead, you cant concentrate, you are afraid to eat, and now you have some weight loss and possible have body shape changes? These symptoms are also very, very classic and most definitely related to your stress, anxiety, depression, guilt, and fear of HIV. Yes, psychological problems can indeed cause all the symptoms you mention.

You mention you sought mental help. Thats your answer and exactly what you need to get well. Yes, you are ill, but its a psychological problem and absolutely, positively not HIV. Because of the severity of your symptoms, you need the help of a psychiatrist not just a counselor. Call your doctor for a referral, particularly in light of your feeling that "its better to be dead." Psychiatric help is urgently needed here.

Something else to consider: Why not tell Mr. Wonderful about your concerns. Show him this question and response. If he loves you even half as much as you claim to love him, Im sure hell want to help you through this problem. Hell also probably be flattered by all the nice things you wrote about him. Who wouldnt be? Anyway, Ill be he could be a great support for you.

You should also copy off this question and response and give a copy to your doctor and to the psychiatrist when you see him or her. Dont delay. Its time to wake up from your 16-month nightmare and realize it was indeed just a bad dream.

Get the help you need the sooner, the better.

Dr. Bob



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