Do I need to take another step to determine my status?
Jun 4, 2011
Dear Dr. Bob, I read your thoughtful reply to Ms. Smarty Pants. I thought I'd ask your advice on whether I needed to take another step to determine my HIV status. As I have outlined in previous fearful emails, I had a severe and long-lasting episode that seems very much like ARS about two-three weeks after exposure that persisted. I saw an allergy specialist/immunologist at that time due to the asthma type symptoms that I was experiencing along with a dry cough and urticaria on the palms of my hands. He told me that I was likely having some type of virus because my IgM (I think) was high. At the time (1989) that made me anxious but not so very fearful as I did not even know about ARS. I had a bout of problems about three to five years out from exposure (shingles, burning mouth syndrome, along with severe anxiety). No symptoms until about 11 years out, and this I just found out could be a great concern. Always very thin and ironing board flat, without any weight gain, I began to develop fat gains in odd areas including in the breasts---these all happened very quickly not over time. Losing weight, though already thin, made no change in this. Now I have developed a type of lymphoma associated with hiv, and I may be developing lipo on my arms. I don't know enough about it to say for sure but my oncologist does not know what it is (lumps, pain from the shoulder to elbow, pressure on veins, lipomas). I've had a whole bunch of tests: 10 antibody tests from 1989-1995, one hiv 2 antibody test, one Western Blot 1992), PCR which was sent to Triangle Park Reference Lab 1995---in 2006 I developed a swollen lymph node on my neck,and when it has not resolved by 2008, I had another dna PCR at my doctor's office (not reactive) and a cd4/cd8 count which was normal except that my doctor NOW tells me that my cd8 was slightly low. I had the Abbott hiv 1/2 done last May 2010, but I don't now know whether to trust those results because I was severely immune suppressed at that time with lymphoma and a variety of rashes and infections. (Recall that it took me months to finally get the diagnosis of lymphoma but it started presenting with severe symptoms in May 2010.) At this point, could you recommend what tests (if any additional) I could have to clarify whether I have hiv or not? I'd like to consult an hiv specialist directly here but that is hard to do without a referral. I do not want to be one of those unfortunate people who is diagnosed with hiv once it is too late to benefit from treatment. After almost 22 years from exposure and my current health I am worried sick. Thank you for your support and considering my questions. Take care, Janie
Response from Dr. Frascino
A dozen negative HIV-antibody tests, normal T-cell subsets, undetectable quantitative RNA PCR and qualitative DNA PCR out to 22 years (22 years!!!) and you're still worrying about HIV??? Janie, my dear, you may have just set a new record! (I'll check with Guinness...and Ripely's Believe It Or Not.)
Your extensive (and excessive) HIV testing is absolutely conclusive, definitive and WOO-HOO-able. HIV is not your problem. Now way. No how. No further HIV tests are warranted.
I'm sorry to hear about your recent lymphoma diagnosis, but I can assure you it is not related to HIV! I strongly urge you to stop worrying about (and chasing) a disease you could not possibly have. If you can't believe the overwhelming and irrefutable evidence of your HIV-negative status, you should see a licensed mental health practitioner, because you are indeed worrying yourself sick! Focus your energies on recovering from your lymphoma rather than worrying about a nonexistent HIV infection, OK?
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