HIV PREVENTION EXPERT FORUM
Dr Please help me out!!!

Dr Please help me out!!!

3 years ago I went to Vegas. 1 night made out w/ girl. we grinded with clothes off. then put condom on & started to have sex but stopped 10 sec later we both wanted to. Next night made out w/ stripper for 3 min. Her mouth tasted weird. not really like blood who know's what...3 weeks later came down with mystery illness. 7 days very high fever, muscle aches, headache, fatigue, sore throat with exudates, night sweats, shaking chills, etc...no cough & didn't see a rash. 2 months before had strep twice. Went to ER I couldn't breathe...tested neg for flu, strep, mono, etc. Doc asked if recently been exposed to HIV. Didn't think about Vegas. She said I wasn't in high risk group so probably wasnt that and didnt test me. Gave me levaquin & fever, etc went away in a few days. Then develped what a neurologist declared post viral neuropathy. Thought for SURE I had HIV. Tested neg 6 times out to 3 months with rapid tests. Tested pos for EBV and possibly pos for mycoplasma at 3 months. Went to shrink for 6 months put HIV behind me. Tested neg again for HIV at 1 year. Now 3 years later neuropathy is back! Numb legs, tingling in legs and arms, burn feeling, shooting pains, etc. Doc did ton of blood work all normal except high triglycerids...no diabetes neg for HIV 1/2/O again from labcorp. Neg for all hep. My questions.

1 With all symptoms/exposure doesnt this scream HIV?
2 Could the tests NOT be picking up my antibodies or do I have rair strain or strain of HIV that we do not know about yet?
3 Is labcorp test reliable? I've read it's NOT elisa test and 2nd generation. Do errors in labs happen often?
4 Ive read that some people have trouble developing antibodies to various illnesses or they just don't show up on antibody tests and other tests are needed...true?
5 Do I need more advanced HIV tests?
6 Isnt peripheral neuropathy a symptom of an underlying disease? If so, could ebv be causing this? Was it mono despite negative monospot?
7 How can I FINALLY put HIV behind me?
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239123_tn?1267651214
Welcome to the HIV forum.  Bottom line:  you don't have HIV.

As we have said innumerable times on this forum, test results ALWAYS outweigh exposure history and symptoms in determining whether or not someone has HIV.  Even if your symptoms were typical for HIV (they are not) and if you had a high risk exposure (you did not), the test results PROVE you were not infected.  To you specific questions:

1) No, your symptoms are not particularly suggestive of an HIV infection.

2) There is no such thing as HIV strains not detected by the standard tests in use worldwide.

3) LabCorp's tests are entirely reliable.

4) You heard wrong.  In theory, advanced (near terminal) cancer, chemotherapy, etc could make an HIV test false negative.  But I stress "in theory". It has never been reported to actually happen.

5) You do not need any more testing.

6) Can HIV cause peripheral neuropathy?  Yes.  But of all people with unexplained neuropathy, HIV is the cause in under 1%.

7) This is a question of psycology, not HIV diagnosis.  That you are unable to accept such overwhelming scientific evidence, and the advice of all your doctors (not to mention this forum), is evidence of abnormal thought processes.  Clearly there is a psychological problem here, not a medical one.  Talk to your doctor about the potential value of professional mental health assessment, counseling, and perhaps medical treatment.  I suggest it out of compassion, not criticism.

That's all I will have to say.  There won't be any ongoing discussion on this thread.  We have learned that allowing ongoing comment simply inflames the anxieties and fears of people in your situation.

Good luck--  HHH, MD
11 Comments
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Avatar_m_tn
Hey Doctor,

Thank you very much for answering my questions. That makes me feel a TON better...just a few follow up questions if you don't mind and I'll put this to bed...

1. I know you specialize in HIV but do you think my neuropathy could be caused by EBV? If so, why would EBV cause neuropathy as it's a virus but HIV doesn't cause it until "supposedly" later into the disease? that's confusing to me...I've read that HIV can directly cause peripheral neuropathy many times.
2. Do scientists think there are unknown strains of HIV out there that people might be getting affected with? (far fetched I know but just want to make sure I guess)
3. Would it take a lot of blood/etc in the mouth during making out to pass HIV? The reason I ask is because back then when I brushed my teeth my gums would bleed leaving my mouth vulnerable...
4. What should I tell my neurologist about my symptoms leading up to the original neuropathy and now this? Should I tell him I was worried about HIV? I don't want him to retest me if you think I don't need it...just a waste of money and resources.
5. Where do you suggest I go from here? I feel I had EVERY symptom in the book yet negative tests - are there any cases where someone was HIV positive but NEVER produced detectable antibodies?...doc says all my bloodwork is fine and I'm perfectly healthy...I don't feel that way and don't wanna keep wasting money on doctor visits for them to tell me I'm ok...could this have just been a "random" virus or possibly mono despite neg test during illness...any suggesstions?

THANKS A LOT
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239123_tn?1267651214
And just how did you interpret the last paragraph of my reply above?

These are irrelevant questions.  You don't have HIV.  There is nothing you can ask or answers available that will change that fact.  Accept it and move on.  This forum is strictly limited to HIV issues and we don't speculate about non-HIV explanations for people's symptoms.  As for "where I go from here", see my reply to question 7.
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Avatar_m_tn
Doc,

I know you said no more follow up questions but please answer and I'll leave you alone. You told another person on this forum that their illness sounded more like "non ebv" mono or cmv. Well, I was tested for ebv and told it was positive for igg but negative for igm...this test was taken 3 months after my illness...so it obviously wasn't ebv. I was also tested for cmv and it was negative across the board. I also tested positive for mycoplasma igg but negative igm. So, I've read that the other "logical" cause for these symptoms would be acute HIV...but you say test results trump symptoms...so in your professional experience, if you don't think it's HIV, what else could possibly have caused this and why does the neuropathy linger? I know you can't diagnose me over the net but with all the evidence, including the other doc on this forum saying HIV may result from making out once in a blue moon, the negative tests for ebv, cmv, etc, there are no other illnesses that I could test for...how is this NOT HIV? Thanks and please answer. This is helpful to many of us on here...trust me...my symptoms were very real.  
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239123_tn?1267651214
Anxiety driven irrational comments by people who will not or cannot accep the reassurance we have given are not welcome.  Any more and I will delete the entire thread without further comment.
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Avatar_m_tn
Thanks doc,

I understand. Was just hoping you could give me a little more insight as to what you think might have been wrong with me - maybe you've come across something like this in the past. Thought that maybe if you had an idea of what it could have been it would have put my fears of HIV to rest...

Take it easy.

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239123_tn?1267651214
Not HIV, which is the only topic for this forum.  Your perosnal physician is the route to an answer, not this or any other online resource.
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Avatar_m_tn
Hey doc,

Just wanted to let you know that today I saw an ID doctor. She said she doesn't think I have HIV. She said the tests are pretty accurate for HIV. Also, I asked about a PCR test and she didn't think I needed it and that they are not perfect so not worth it. She still could not figure out what/is wrong with me...she said I'd have to work with my neuro but that it's probably not something infectious. She did say that HIV can cause mono though which freaked me out and that my original labs looked like I had an infection...she did say my most recent CBC looked normal though...so, with that being said, can I put HIV completely out of my mind FOR GOOD and continue unprotected sex with my girlfriend or should I pursue other tests to completely rule it out? Please...I want so badly to move on...
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239123_tn?1267651214
I have nothing more to say.  HIV may indeed cause a mono-like illness, but not with a negative HIV test.  Any and all further questions should go to your ID doc.  This thread is closed to new comments -- and you may not start a new thread with the same questions.  Accept the reassurance you have had and move on.
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Avatar_m_tn
Doctor,

I'm come to the conclusion that it would be very unlikely that HIV is my problem...probably less then .01%...This will be my last comment ok. Can you please just tell me with 100% sinserity and belief that I am indeed HIV negative? Please doctor - I need to hear this so I can move on.

Thanks for all your help.
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239123_tn?1267651214
I already gave you that assurance.  I haven't changed my mind.  With 100% certainty, you do not have HIV.

That's the end of this thread.  No more comments, please.
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