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What is wrong with me?
Aug 8, 2002

I know this isn't the right forum for this question, but there is no one who comes close to you in throughness and compassion. I hope you can give me some guidance when no one else seems to be able to.

In early April I had unprotected anal sex with a woman whose HIV status is unknown. I'm no hypochondriac, and it never made me nervous until I began to see a host of symptoms crop up.

It started two weeks after my encounter with itchy blood-filled looking bumps on my legs and the tops of my feet(dime sized, maybe 10-12 of them) They spontaneously resolved themselves and I was well for about 4 weeks after that until I got sick. I had a mild fever, sinus pain, systemically swollen lymph nodes(truly swollen, painful to lay on my side or sit normally in a chair because it put pressure on them) and headaches. About two weeks after this illness, after it had 90 ameliorated itself, I began to have bouts of confusion and cognitive impairment. These came on rather suddenly one day while I was driving to work; I felt a rushing sensation in my head, and could feel my "mental status" really go awry, kind of like how it feels to be in the middle of a bad cold--only this has persisted even to this day. Also from time to time I'll get tingling in my hands and feet (transient and not very severe, but something I never had before) and occasional ringing in my ears (very pronounced when it occurs). I am still coordinated and everything, just a _lot_ duller than normal. I used to be able to write... now I can't write worth a darn... my situational acuity has really suffered too.

I have worked with primary care doctor to try to figure this out, and when he could help me no further he handed me off to an infectious disease specialist(handles over 800 HIV patients etc).

I have tested negative for Hep B, Mono, Chlamydia, Gonorrhea, Syphilis, HIV(pretty darn conclusively... negative antibody AND PCR tests at 12 weeks, more on that in a moment). My physical exams have been normal, blood counts are normal too. I have a near perfect health history. Haven't had more than a cold in 10 years, and I only get colds once maybe every 1-2 years.

About PCR testing... the blood sample that they took for viral load testing was held in their lab for about 2 weeks. My primary care doctor ordered the test, but he had to get approval from the ID doctor before they would actually run the test. Would PCR testing still be accurate on a sample that was that old?(damn HMOs)

Let me also say that I'm not really stressed about this. Getting a little despondent maybe, but by no means freaking out. The infectious disease doctor told me it's likely I'll never get a definitive diagnosis. The cognitive impairment is just impossible to ignore though. He simply chalked it up to meningitis and said oh well.

Can you offer _any_ suggestions about how to proceed?! What might I look into?? What other tests should I run? I trust that negative PCR and AB tests at 3 months are very conclusive for HIV, but, at the same time, what the hell is causing the mental problems? I don't hear of many worried wells with persistent confusion, not that they don't exist, but jeez. Four months?!

I apologize for this being sent to the wrong forum, but at the same time seeing how YOU handle questions is the only thing that compelled me to ask a question at all. Take care of yourself. I hope you realize how much of a blessing and benefit you are to all those you are associated with. HIV has beaten so many into complacency--I can't help but feel that you have more strength that I can even imagine. You help lift up people who don't even really have any problems at all--that's especially amazing considering what you deal with! Thank you!!

Response from Dr. Frascino

Hello,

Thanks for the extremely kind comments! I certainly agree with the infectious disease specialist. Whatever is causing your symptoms, it's not HIV. Yes, the PCR would be fine, as long as the blood was properly processed in the lab. If it wasn't', they would have asked for another sample. As for "damn HMOs", I couldn't agree more! (Actually, I would use a much stronger word!) So what could have caused all your problems? Any possibilities I would suggest at this point would be purely guesses and probably not very helpful. Your major problem now seems to be some type of cognitive impairment of uncertain etiology. What I would suggest is that you see a behavioral psychologist. A specialist in this field would be able to give you a variety of psychological tests to see what type of cognitive problems you are having, such as short-term memory problems, or communication problems, etc. Once this is determined, your doctors may be able to better determine what the cause is (or was) and how best to treat it. You might need the help of a neurologist or psychotherapist. In any case, I do think with a bit more investigation and the appropriate treatment, your symptoms should greatly improve.

I hope that helps!

Good luck.

Dr. Bob


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