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lymphadenopathy after risky exposure = HIV
Mar 17, 2010

Dear Dr. Bob

I write to you again (100% hiv infected 2010) because I have a problem. So I know you are a busy man. And I really do think u deserve so much for all the great work that u always provide to people living with HIV and WW regarding there questions and understanding. Well I was reading previous post on thebody.com and type in search = Lymphadenopathy. So I was amazed at how many people have written in describing their symptoms that included swollen/tender lymph nodes. I was also amazed that a lot of them continued to test negative on there AB and other more specific HIV test out to 1yr after exposure. But I was more amazed at the fact that you would advised them that HIV is not there problem, no way - no how! However Dr. Bob while I greatly respect all that u do I somehow think ur wrong on some of these peoples issues. Lets start off by stating that HIV was once called LAV because it was a disease that caused Lymphadenopathy there for the name LAV came around. Then it was changed to HIV because of the 2 docs from the US and France that had the little dispute about who discovered the disease. Ok so we can agree on that much. Now if Lymphadenopathy is associated with primary HIV infection and a lot of these people including myself have experienced this since our last risky exposure whether it be occupational needle stick, condom breakage or just not wearing protection during sex but the test still continue to show negative.

Would it be ok to say that HIV test are not as accurate or as specific as we believed to be. I think when it comes to a lot of these online forums we come to look for answers and to be made to feel better by being advised that after testing out of the 3 month or 6 month or even 1yr period that HIV is not the problem. Then what else could explain such a coincidence. I mean in my whole entire life that has been a short 28yrs long I had never experienced 1 swollen lymph node. I didnt even know we had them to begin with. And I have been sexually active since I was 13yrs old and have had plenty of women in my life with which I have gone both protected and unprotected during sex. However this last time I made sure that I always wore protection. I was very careful when pulling out to make sure the condom was always on. But unfortunately the condom broke and I wasnt aware that it was ripped or how long it was ripped for and now I fear that I am infected with HIV even after all the negatives that I have received for the past 16wks. I have been to 1 GP and 2 HIV specialist and somehow they all feel my lymph nodes and decide that since there is no lymph node that is bigger than a marble or even a bit smaller than that, that I do not have swollen lymph nodes or HIV. I find this hard to accept and also feel like I have been misdiagnosed. I feel these uncomfortable feeling on both side of my abdominal area, my back, my forearms, back of the knees, back of elbows, groin area while my lymph nodes may not be swollen in size they are very palpable to the touch in all areas of my body, lately more so on my abdominal area. And I am loosing weight while eating nothing but mcdonalds or other fast food. How is that when combined with occasional night sweats and white tongue not diagnosed as HIV only because no test has been able to pick it up. Even a ultra sensitive RT HIV RNA test was not able to detect HIV @ 48 copies, but on this website there is a story about a person that was infected and was positive on AB test but always undetectable on viral load test. Then someone thought of using a bdna test for viral load and they were able to pick up a viral load due to the person having a non - B strain. So you see how there is a lot to this disease that is not yet understood as shown by test that only detects antibodies to HIV disease and not the virus itself. And even the test we do have to detect the virus cant be used as diagnostic tools. So what will happen when 5yrs from now me and other who have similar stories with negative HIV AB test, PCR test, NAAT test all the sudden show up to emergency rooms with signs and symptoms of AIDS? I know there is nothing you can do aside from what ur already doing for us. But I am still sure that I am infected or there is something else out there or also either HIV is hiding in the lymph nodes and not circulating in the blood including no AB. Or there is a new strain of HIV that is not yet discovered or the current HIV AB are just not as specific and accurate as we want to believe they can be. I mean even now some docs say 3, 6/months or even 1yr for testing. I my self as much as it would suck and change my whole life, would rather know now that I have been recently infected then wait till my immune system is destroyed, but how can I do that if all my AB test are negative and even the test taken by the person that I had the exposure with tested negative. If a lymph node biopsy is to be performed would that be able to locate HIV? I have recently ordered an HIV bdna even after my doc declined to order the test and also have a cd4 count order as well, results not yet available. Something is going on in my body and it started 7 days after risky incident. Since then I have not been the same physically and my health is less than 100%. I dont know what else to do. I am even willing to go to San Francisco and have u examine me to determine what u think could be causing my lymphadenopathy, so what do u think. I am concerned and I hope u post this and answer as u have to other post that I have sent u. I pray every night that someday either better treatment or less stigma is associate with these disease and that it could be accepted just like other chronic disease. Take care.

Response from Dr. Frascino

Dear Sir,

You can continue to "believe" whatever you wish; however, your beliefs do not change reality.

You have been to your general practitioner and two HIV specialist physicians. All three have advised you that your lymph nodes are not swollen. However, you "find this hard to accept." What are the odds all three doctors, including two HIV specialists, would be wrong about a simple physical finding???

You have had numerous HIV-antibody tests and an undetectable quantitative ultrasensitive RT HIV RNA. Plus, the person you were exposed to (via broken condom) has tested HIV-antibody negative. However, you refuse to believe all these results as well. That's quite amazing!

HIV, whether you believe it or not, is not your problem. No way. No how. No additional HIV tests are warranted. (Your totally unnecessary HIV bDNA will be undetectable and your equally unnecessary CD4 count will be normal.) Most likely you won't believe these results either. It's painfully obvious to everyone, except you, that your problem is not virologic, but rather psychiatric. You don't have HIV, but you do have a significant medical problem: irrational fear of being HIV infected.

I urge you to see psychiatric help. Flying to San Francisco will not help, as you are not HIV infected and I am not a psychiatrist.

Good luck.

Dr. Bob



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