[Question #10592] HIV symptoms, negative tests [followup]
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21 months ago
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Hello,
Despite being told that my results are conclusive in my previous question, my life is still a living hell because of the symptoms, and i don’t know what is going on. I am working on finding some non-HIV causes for my symptoms with my doctor, but no progress for now. My seborrheic dermatitis is getting worse, gingivitis in my mouth is still present despite careful oral hygiene and prescribed dentist’s medicine. I have extreme muscle pain, tiredness, night sweats and brain fog for weeks. Since yesterday i am experiencing shortnesss of breath and heaviness in the chest area. Swollen lymph nodes on neck are still there and in last few days i feel them in armpits as well. Fungal infections on nails and balanitis are not going away. Did the CBC again, and have elevated leukocytes, lyphocytes and abnormally high eosynophiles, with low monocytes (read that HIV causes that). I am almost 100% sure i have HIV, and it will just come out positive bit later. CBC results are pointing to an infection and that’s a fact. It is hard for me to belive there is another virus that i caught just after my risky exposures which has been causing swollen lymph nodes for 3 months! I was perfectly healthy before.
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21 months ago
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My questions:
1. Is there a possibility that PCR for HIV-2 missed the infection and antibodies were not yet formed to show on 4th gen tests? It has been ‘only’ 3 months post exposure and 8 weeks after completing PEP. I am more focused on HIV-2 because i heard it’s quite common among sex workers in Barcelona. Also, as I did 3 HIV-1 PCRs it’s more probable that tests haven’t missed that one.
2. I am planning to take HIV 1/2 RNA qualitative, TMA test next week just in case. Is it true that RNA tests become less reliable after 3months post exposure?
Thanks so much in advance from very worried 31yo guy
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H. Hunter Handsfield, MD
21 months ago
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Welcome back, but I'm sorry that you found it necessary -- and also sorry this forum cannot help you any further.
I reviewed your just-completed discussion with Dr. Hook and agree exactly with his evaluation and advice.
1. No, there is no possibility the tests you had would miss a newly acquired HIV infection.
2. I see no need for another RNA test. (You're using different words for the test you already have had.)
HIV test results always overrule both symptoms and exposure history: no matter how typical the symptoms (yours actually are not at all typical of ARS) and no matter how high the risk of HIV at the time of exposure, the test results tell the truth. There are no exceptions, ever.
As for what IS causing your symptoms, I have no opinion or advice. We do not get into medical issues other than STIs and HIV. Once those are out of the picture, our advice ceases. All I can do is encourage you to continue to work with your doctors. If you are not in the care of an infectious diseases specialist, that would make sense at this point.
I hope these comments are a little bit helpful. Best wishes.
HHH, MD
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21 months ago
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Thank you for your reply, it is comforting to read your sentences. As much as i believe in accuracy of those tests, the sheer amount of symptoms i have experienced in past 3months (from lymph nodes, rash, night sweats, malaise, mouth ulcers, chills, fatigue… to specific ones like brain fog, pins and needles in legs and arms, fungal infections) is making me still question everything from time to time. Also, i read about cases like those where both antibody and NAT tests didn’t manage to catch infection in some patients:
You still wouldn’t recoend further testing despite (failed?) PEP, all symptoms mentioned and unprotected (broken condom) exposure with CSW?
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H. Hunter Handsfield, MD
21 months ago
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That reported case is irrelevant to your situation. He tested positive by NAAT. The NAAT was not attempted until 4 months after his symptoms started; had it been done earlier, undoubtedly it would have been positive.
Do your best to understand and believe the reasoned, science based advice you have had both on this forum and probably from your own doctors. I also would suggest no further web searching about it. Like many anxious persons, you are being drawn to information that inflames your fears and misses the reassuring information that also can be found.
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21 months ago
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Thank you for your reply. Another update from my side. As lot of the aforementioned symptoms persist, i did HIV1/2 RNA + 4th gen ag/ab test last week (2 months after the last dose of PEP). They all came back negative. I still have hard time believing the results as my symptoms are daily reminder that something is wrong, and i still haven’t found an explanation with my family doctor despite detailed examination and lot of screenings done. The only condtion they diagnosed for now is eosinophilia (which is also linked with HIV if i understood correctly).
My questions:
1) Is it possible that PEP is delaying positive result of my tests here despite being 2months from last PEP dose (3months after exposure)
2) I read that HIV-2 usually occurs with lower (sometimes undetectable) viral load (even without taking medicine). Is it possible that PCRs missed the lower viral load and antibodies for HIV-2 have still not been formed (delay because of failed PEP?)?
3) Some of the symptoms i am experiencing lately are sebbhoreic detmathitis, neuropathy and candida which are all linked to later stages of HIV - is it possible for those conditions to appear only after 3months of new HIV infection?
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21 months ago
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4) Does any of the symptoms i mentioned in my previous messages suggest HTLV?
5) I am still suffering from dry mouth and lips, with reocurring mouth ulcers that heal very slowly. Since 3 weeks post exposure i had gingivitis which is rapidly progressing to paradothisis despite dentist’s plaque cleaning and medicine. I read those conditions are also very common in HIV patients. Is it possible for gingivitis/dry mouth/ulcers to occur immediatelly 2 or 3 weeks after risky exposures? Does any of those could be caused by herpes?
6) I was diagnosed with eosinophilia, but cause/trigger is unknown for now, do you think it might be HIV related? My doctor said that eospinophilia usually occurs in later-stage HIV phases
Thanks in advance
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H. Hunter Handsfield, MD
21 months ago
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*Sigh* All these qeustions have been asked and answered, or the answers are obvious from this and your previous thread.
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1) Is it possible that PEP is delaying positive result of my tests here despite being 2months from last PEP dose (3months after exposure). No, that doesn't happen.
2) Is it possible that PCRs missed the lower viral load and antibodies for HIV-2 have still not been formed (delay because of failed PEP?)? This also doesn't happen. And the modern PCR tests now in most common use detect HIV2 as well as HIV1.
4) [HTLV] This virus can be sexually transmissible, but rarely and it is not considered an STD and is outside our expertise. To my knowledge, your symptoms don't fit with it. But you are free to discuss with your doctor.
3,5,6) [Symptoms] From my first reply 16 days ago: HIV test results always overrule both symptoms and exposure history: no matter how typical the symptoms (yours actually are not at all typical of ARS) and no matter how high the risk of HIV at the time of exposure, the test results tell the truth. There are no exceptions, ever.
I encourage you to consider professional counseling. It is not normal to be so resistant to repeated, expert, science based advice of the sort you have had on this forum and probably from your own doctor(s). It suggests an underlying mental health issue that likely would benefit from professional care. That your "life remains a living hell" (your opening line 16 days ago) reinforces the severity of the problem for you. I suggest it from compassion, not criticism.
Please note the forum does not permit repeated questions on the same topic or exposure. This being your second, with identical opinions and advice each time, it must be your last. Repeated questions are subject to bein deleted without comment and without refund of the posting fee. This policy is based on compassion, not criticism, and is designed to reduce temptations to keep paying for questions with obvious answers. In addition, our experience is that continued answers to anxiety-driven questions simply prolong those anxieties, when a better option often is professional counseling. Finally, such questions have little educational value for other users, one of the forum's main purposes. Thank you for your understanding.
I do hope the discussions will help you move on without further worry. Good luck.