31 mo neg but Dr not sure!
Aug 14, 2005
Please don't just tell me that I'm crazy or that I need counseling. I'm at an absolute loss as to what to do next. I've tested negative on more than a dozen HIV antibody tests thru 31 mos after a stupid exposure in Thailand, but my Dr and I still don't 100% believe that HIV can be ruled out due to my ongoing symptoms that only began 2-4 mos after exposure: including neuropathy (polyradiculopathy), memory loss & vision changes, chronic post nasal drip with thick sticky mucus covering my tongue and back of throat 24 hrs a day, chronic aches and pains, chronic dry mouth with gum loss, malabsorption with wasting in arms, legs and face, and low testosterone (now taking injections). The four PCR RNA tests I had were all undetectable, but the CD4 counts my Dr ordered fit a HIV-like pattern (420 two mo after exposure, climbing to 600-700 range 9-24 mos after). I've seen 8 different specialists in the past two and a half years and my symptoms just get worse. My Dr won't put me on a trial of HIV meds because the HIV tests have been negative, but he says I shouldn't have unprotected sex! His formal diagnosis on my office visit forms is "Exposure to a STD". The only virus he's found evidence of thus far is reactivated EBV, but I understand that's very common among HIV postive people - and that could explain why one side of my tongue has whitish hair like projections when it used to be red and smooth and flat.
Are there any specialty labs for viral culture testing that you can recommend I go to? The CDC has been no help thus far to my Dr. He's tried contacting ID specialists at Standford & UCSF for me but they don't listen to him. Where should I turn to next? Please help me.
Response from Dr. Frascino
You've tested negative "on more than a dozen HIV antibody tests" out to 31 months, and you've had four undetectable PCR RNA tests, and your CD4 tests ranged from 420 to the 600-700 range, and you've seen eight different specialists in the past 2 years, and you don't want me to tell you that you're crazy or that you need counseling?????? Hmmm . . . that puts me in an impossible situation. Maybe this will help. I believe your symptoms are real. I also am more than 100% convinced they are not caused by HIV. You are not crazy, but if you don't get a grip on your irrational fears of and fixation on a disease you absolutely cannot have, you could very well drive yourself "round the bend" (as they say in Australia).
As I am a graduate of UCSF and was an associated clinical professor of medicine at Stanford for nearly two decades, I can assure you the multiple physicians at those medical centers and at the CDC and who are refusing to consider your condition to be HIV related are indeed giving you accurate advice. I cannot diagnose the cause of your symptoms over the Internet, but I can tell you what is not causing them: it's not HIV! If eight specialists have been unable to isolate an organic cause for your complaints, I encourage you to at least consider that some or all of your complaints may have psychological bases. I also strongly encourage you (and your doctor) to stop testing. You've had way, way too much already. Just what part of "negative" and "undetectable" are you and your physician having difficulty comprehending?
My advice, whether you want to hear it or not, is to get counseling for anxiety and irrational fear of HIV. Treat the condition you definitely have, rather than chasing after one you don't!
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