[Question #11085] All these doctors no answers.

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17 months ago
 1995 after sex with a girl few weeks after I started getting sick with diarrhea soon after I eat joint pain a cold I can't get rid of. Body pain with burning sensations. Few years after my tongue started to get white. I went to the doctor he did blood tests I called back for the results he said something was wrong with my blood. I asked what he told me to go see another doctor. From that am thinking it was hiv and he never wanted to tell me because I was only 16 years old. Always  saying it was hiv. Since 2020 I had over 23 different hiv tests. I had 3 RNA quantitative viral load tests and 1 RNA qualitative plus eight 4th generation lab tests plus 10 point of care clinic rapid antibodies test. All negative are undetected. Been to the gastroenterologist had colonoscopy test in 2017 nothing found in 2023 had endoscopy nothing found. Been to the cardiologist for my chest pain every tests was normal. Since 1995 after that sex I been sick. Can I have HIV for over 29 years without being detected. I read that hiv elite controller can live decades without being detected. I have mouth sores, joint pain night soaking sweats diarrhea soon as I eat stomach pain. Losing weight over 12 pounds in less than two months.  Please help. Can I have hiv and my viral load is so low for over 29 years this why I can't get detected. All my CBC blood tests are always normal. 
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Edward W. Hook M.D.
17 months ago
Welcome to our forum. Thank you for your questions. I’m sorry that you have suffered in the way you describe for nearly 30 years. My sense, however, is that your concerns about HIV are off target and that you did not acquire HIV from the sexual encounter you describe. The risk of acquiring sexual HIV from any heterosexual woman, particularly in 1995, was very very low.  Your many subsequent tests prove you don’t have HIV.  My guess is that your illness and subsequent problems are coincidental and not related to anything acquired through your sexual contact. 

With your negative tests you certainly are not an elite controller. There is widespread misunderstanding's about who is and is not an elite controller.  There is anlso frequent misunderstanding about what test results show.   Many people mistakenly believe that persons who are elite controllers have negative tests for HIV. This is incorrect. Both fourth generation Combination HIV antigen/antibody tests are positive in elite controllers, as are HIVRNAPCR test. What distinguishes an elite controller is not negative tests but the fact that despite infections which are present and proven by tests, they do not progress to HIV. 

I suggest that you establish a relationship with a Doctor who you trust and work with that person over time to establish and explore causes of your problems. They are not HIV. EWH
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17 months ago
I saw online about proviral DNA sequence HIV test. Is this test more sensitive to detect long standing hiv if a person have hiv are even a hiv elite controller. I saw online doctor a hiv expert from Singapore saying it's more sensitive. I wrote to you in the past. Am worried doctor because every tests I took all negative. All my blood work is in normal range. The diarrhea, joint pain, thrush on my tongue a cold I can't get rid of. Always quick to catch a cold. Night sweats. What doctor would you recommend specialist wish. Can someone have hiv for over 29 years without being detected.
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Edward W. Hook M.D.
17 months ago
It sounds like you read something that is sending you down the wrong path.  The sensitivity of assays for proviral DNA are of similar sensitivity to those reported for HIV RNA PCR tests.  On occasion an alternate test is helpful when results are equivocal, not negative.  You have been tested for antibodies to HIV, for HIV proteins and HIV RNA- unequivocally and without a doubt you DO NOT have HIV. To persist in this misdirected belief will on frustrate you and your care providers, as well as likely prevent you form identifying what is going on, if anything.  

A person cannot have undirected HIV for 29 years.

As far as specialists, one of the most important things you can do is find a doctor who you feel you can communicate with and then commit to working with them over time and not go from doctor to doctor.  Going from doctor to doctor will only cause then to start again wasting your time.  Given that many of your symptoms are GI in nature, a gastroenterologist is a good idea.  If you wish to be evaluated for unusual susceptibility to other infections, then a clinical immunologist is the way to go.  EWH
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17 months ago
So doc you saying no way I can have hiv for over 29 years without being detected or being alive without medication. I been to so many doctors no one seems to can help me. Now am losing so much weight without trying to lose weight. Stomach hurt soon as I eaten. My joints hurt plus burning all over my body. This head cold I can't get rid of my tongue is white took over three different medications still white. Wake up soaking night sweats. Mouth sores, having anxiety and depression now because I know am sick but no help. The gastroenterologist says he can't see anything with the colonoscopy or the endoscopy. All my stool tests are normal. The rheumatologist did xray on my joints nothing found. Cardiologist didn't find anything with my chest pain. Sometimes I think am having a heart attack. Every blood test is normal except for my cholesterol levels. My sedimentation rate is normal. If a person have hiv and getting sick would this means the antibodies in their body.
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Edward W. Hook M.D.
17 months ago
I'm sorry your interactions with specialists so far has not been helpful.  While I am 100% confident that you do not have HIV, there is not much more I have to offer.  You may want to get 2nd opinions from other gastroenterologists and/or rheumatologists.  

This will complete this thread.  There should be no reason for you to return to this forum as the answers will not change.  I wish you the best.  EWH
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