[Question #5409] Follow up - neurological symptoms

22 months ago
Follow up on Question 5190.  Risk: Feb 8 suspected unprotected anal sex in backroom of gay bar (blackout due to suspected drugging).Symptoms: 2 weeks later multiple symptoms including severe chills, head pressure, headaches, night sweats.  Due tohead pressure I was diagnosed with a sinus infection.  Was on multiple rounds of antibiotics, oral prednisone (30mg x 7days) and a nasal steroid.  This was a supposed misdiagnosis but due to ongoing symptoms a CT was done and confirmed a blocked frontal sinus.  Surgery was performed at week 11 post exposure. Despite surgery, symptoms are ongoing and are predominately neurological.  Continue to have weakness in my left cheek and forehead, numbness sensation in my skull, burning across my shoulders, numb hands and fingers and for the last 3 days severe headaches and involuntary muscle spasms in my face (trip to the ER).  No one has been able to diagnose.  I have a referral to a neurologist but there is a 9 mth wait. I am aware such neuro symptoms have been linked to early HIV infection. My husband also had symptoms - widespread rash, night sweats, and on a recent visit to the dentist, the dentist was concerned with multiple mouth ulcers.  Tests: 17 days, 22days, 27days, 40 days, 45days, 10 weeks, 12.5 weeks - all duo/All negative.  Despite the tests, the ongoing symptoms are very concerning.  I remain concerned that the steroids could have affected the results? Also, during surgery, I was under general anaesthesia whichincluded IV steroids.  I am a highly educated individual and have done a lot of research and despite knowing the stats of conclusive results and telling myself i need to trust the tests, I know there are instances of test failures.  My main question is are there any circumstances where test results should not overrule symptoms.  Is there any chance I am infected and the tests are not picking it up (novel strain, HIV-2??)  At the point where I am debating coming clean with my husband so that he can test
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
22 months ago
Welcome back to the forum. Thanks for your continued confidence in our services.

I looked at your last question and Dr. Hook's replies. Embedded in those replies was this concept (although I don't see that Dr. Hook used these words): The HIV blood tests are among the most accurate diagnostic tests ever developed for any medical condition. The test results are thousands of times more reliable than symptoms (or exposure history) in determining whether or not someone has HIV. Therefore, the test results always overrule symptoms, as long as testing is done sufficiently long after the last possible exposure. And almost all your tests meet that criterion. There are no medical conditions at all that cause altered HIV test reliability. You can find online mention of things like immune suppressing drugs, chemotherapy, and the like. But there are few if any actual known cases where such interference occurred.

Another aspect is that even if in theory a test could miss an HIV infection, the tests never miss HIV symptoms. So a negative blood test in the presence of symptoms of any kind proves the symptoms are not due to HIV, if testing is done more than a week after onset of those symptoms.

I disagree that "there are instances of test failures". Not true for the standard antigen-antibody (4th generation) tests now in use. I am unaware of any reports of failure of such tests to be positive withiin a few weeks of catching HIV.

Finally, neurological symptoms generally are late manifestations of HIV (years in duration, with time for advanced immune deficiency) and not in the first few weeks of acquring the virus. Also, there are too many potential causes of oral ulceration to be seriously concerned about HIV.

For all those reasons, you can be 100% certain your symptoms are not due to HIV. 

You don't mention syphilis or testing for it, and on quick scan of your other thread, I don't see it mentioned there either.  Have you been tested for it? Based on your exposure, sympotms (both neurological and oral ulcers), and the HIV blood test results I would be far more suspicious of syphilis than HIV -- if you haven't been tested and negative.

I hope this information helps you move along without worry about HIV. But I'd like to hear more about syphilis testing.

HHH, MD
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22 months ago

Thank you for the response.

Re: Syphillis - as mentioned in my exchange with Dr. Hook, I have been testing for syphilis as well and have tested negative out to 12.5 weeks. 

Despite your reassurances, I can't help but remain concerned.  Say for example if this happened to be an HIV2 infection (I know it is rare in North America and not likely - but not impossible) and I happen to be delayed in producing antibodies (or seronegative - again I appreciate this is rare but not impossible), is it not possible that the test results would be inaccurate?  How could I prove this is not the case?

I appreciate your comments of not being aware of known failures of the duo test  and perhaps I misinterpreted some of what I read but again, if this were HIV2 or a rare strain (do they exist??), is it not possible that the test would not pick it up by 12 weeks. 

I truly am struggling.  I have read posts from others and have always been amazed by those who have not been willing to accept the results these highly accurate medical tests and never envisioned myself being one of those folks but my symptoms are just too much to ignore.  Again, all neurological without any apparent cause.  The side of my head is completely numb as of now and I still have intense tingling in my extremities and involuntary muscle spasms.  Along with daily headaches. This is not simply anxiety.  As mentioned to Dr. Hook my husband came to me with his symptoms (rash, etc.) without even being aware of my potential exposure so it's not a simple case of being a worrywell. 

Is any further testing necessary? If so, what would that look like?  It has been months since any sexual interaction with my spouse - is it safe to resume?

I truly appreciate any further advice you can offer.

Best

H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
22 months ago
Syphilis:  You have been overtested and don't need any more tests. You don't have it.

HSV doesn't behave at all like this. Proof? 100% probably not possible because some infections are missed by all testing. But if you have an exposure with, say, 1 chance in a thousand of infection; no symptoms suggesting herpes; and negative testing, any one of thse could break the wrong way. But the odds you could have HSV with NONE of these is zero for all practical purposes. Don't overthink it. You're fine in regard to herpes.

"I truly am struggling":  All I can do is suggest personal counseling. It is not normal to remain so concerned in the face of such overwhelming evidence against infection (with anything) and with the reasoned, science based reassurance you have had. I'm pretty sure you're going to continue to be anxious about it -- irrationally an unnecessarily -- until and unless you receive professional help about it. I suggest it from compassion, not criticism. But I'm afraid there's nothing more this forum can do for you. Just hearing the facts and reassurances yet again isn't likely to help much, and that's the best we can do.
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22 months ago
I hope you won’t count this as my final follow up as I may have something further once I clarify that I was never concerned about HSV - I believe you may have misread my query.   I was responding to your question about syphillis and the balance of my response was in respect of hiv as this is and has always been my main concern.  I hope you will revisit my last post with the above in mind.  

Best 
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
22 months ago
Apologies; I had seen a follow-up question from someone with herpes, then jumped to this thread and forgot where I was.

I remain equally confident you do not have either HIV (either type 1 or 2) and your "I am struggling" comment still is unwarranted.

I'll leave this thread open for one more brief comment/question. But please avoid re-asking or requesting confirmation of anything already answered, or whose answer is obvious from the replies here and/or your other thread.
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