Follow-Up: Why No Antibodies? Unusual Case - Please Help
Jan 19, 2004
Dear Doctor Bob,
I please hope that you can respond to my question as I am desperate for advice. I am a 45 year old white male, married with two young children under the age of 10. I made one mistake of having a risky exposure in Thailand in Nov 2002. I was pefectly healthy at the time. One month after the exposure I developed chronic diarreha (yet unexplained), chronic dry mouth with white coated tongue (yet unexplained), a temporary rash around my neck 6 weeks after exposure that lasted about 10 days, two months after exposure I developed numbness and tingling in my feet and legs that was diagnosed last March as a polyradiculopathy (yet unexplained). Last year I was seen repeated times by my primary care physician, two neurologists (including one at UCSF), two Infectious Disease/HIV specilists, an ENT specialist and a GastroIntestineologist. I've undergone a spinal tap, and EMG, a colonoscopy, endoscopy, MRI of the neck and spine, MRI of the stomach, multiple blood tests looking for cancers, stomach viruses, etc., all coming up without answers to my multiple ills. I lost 20 lbs in early 2003 despite eating like a horse. My legs and arms have lost both fat and muscle. I am fatigued all of the time. Tests in the 2H of 2003 indicated I have a malabsorption problem and low testosterone (below 300). I never developed fever following the exposure, but can't all these unexplained symptoms be caused by HIV?
I've had multiple negative HIV antibody tests out to 12 mos past my exposure. I've had 5 undectable viral load tests btwn Dec 2002 and Sep 2003. I'm concerned that the first viral load test was taken 6 weeks after the exposure, which may have given the virus time to "hide" outside my bloodstream. My ID/HIV doctors ordered 3 CD4 tests btwn Jan and Sep 2003; the first was 427, rising to 700 in Sep 2003. I also tested negative for HIV2, HTLV1 and other STDs last year. My ID/HIV doctors have refused to run a HIV DNA Qualitative test on me, which shocks and disappoints me since my severe symptoms seem to be all HIV related. In fact, all of my doctors now refuse to run any additional HIV tests on me, but they also are not running any other types of tests on me! Both my primary care physician and ID/HIV doctors (in the East Bay of CA) have recommended to me that I make an appointment with an HIV specialist at Stanford or UCSF if I'm still concerned about HIV. I'm willing to do this at my own expense, but when I call UCSF and Stanford and explain my situation, they won't make an appointment for me since I'm already being seen by ID/HIV doctors in the East Bay (but they won't even see me again!).
Could you please tell me how I could possibly get an appointment with an HIV specialist at Stanford or UCSF? I'm willing to pay for a consultation out of my own pocket to avoid the HMO/Insurance hassles. Alternatively, is there someplace I could go to have any special HIV testing that you could recommend to me? My problem is that I can't seem to get special testing without a doctor order. Could you please help me? Despite my CD4 count being in the normal range (600-700), I feel sick all the time. My neuropathy just continues to get worse (I'm seeing UCSF specialist again in late Jan) and my mouth and throat problems hinder my performance at work. I need to find out if HIV is causing this, because I have heard that sometimes HIV treatment can improve any HIV-related neuropathy (what I have is likely to be CIDP). At 45 years old with very bad symptoms, I don't think I can afford to not seek answers to my health problems, particularly since I have two small children that need me. Please help me with your advice, even if you need to just reply back privately to me.
Response from Dr. Frascino
So your multiple physicians in multiple specialists are not only refusing to order additional "special" HIV testing, but also they are ready to put a restraining order on you as well?
OK, listen up. First off, HIV does not "hide" outside the bloodstream. Second, you've seen way too many doctors and had way too many unnecessary and totally unwarranted HIV tests. The chances of your having HIV are precisely zero! Got that? Zero, zip, zilch! nyet! nada! Seeing an HIV specialist at UCSF, Stanford, or the Planet Krypton will not help. HIV is not your problem. If you have malabsorption and/or low testosterone, then get those problems evaluated and treated. Why continue to focus on an illness you could not possibly have?
There is one physician specialist that you have not listed among those listed on your impressive list a psychiatrist. And that, my friend, is where you will most likely find the help and health you are desperately seeking. Your guilt and anxiety resulting from your mistake and subsequent pathological preoccupation with HIV are what you need to confront. And the sooner the better. I have taught immunology at Stanford Medical Center for many years. I've just saved you a whole pile of money by giving you the exact advice that you would have received following a full consultation there.
You do have a significant problem. It's just not HIV! You do need treatment, but not more HIV testing. Bring this question and my reply with you to your first counseling session. It will help your therapist help you more quickly.
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