Hi, Dr. Bob! I hope that your holidays have been wonderful.
Janie from Texas here (I wrote August 6th and again in Sept.---thank you for your replies). I am trying not to be scared, but my symptoms are becoming more worrisome. I've always been nervous about being infected since I had severe ARS at exposure which continued for about a year or so, off and on (esp. urticaria on both hands and dry cough). I had numerous antibody tests for six years after exposure ---all negative, a DNA PCR undetectable in 1995, and again in 2008 when I began to have fatigue, night sweats, swollen lymph nodes, etc. At that time, I also had elevated Alkaline phosphatase and continue to have those values today (no reason has been found for this). I recently had the Abbott HIV -1/Hiv2 and it was negative. I have severe generalized lymphadenopathy (shown on an MRI, when I saw my neurologist) and we now think that this condition has existed for the past six or seven years, pain erroneously attributed to a disk issue. My most recent labs show normal HGB, HCT and PLT--- but low CD4 counts (400- ref. range 490-1740)and low CD8s (127--ref range 180-1170---low lymphocytes in general 700 (ref. 850-3900), Helper/Suppressor ratio 3.17. In 2008, my CD4 count was 1100. My main physical symptoms are severe pain in the lymph nodes (esp. groin), spleen (swollen), and inability to suppress herpes on my arm using Valtrex.
My questions are: (1) I read about people who do not make antibodies but who are infected. Would the DNA PCR (1995 & 2008) pick up an infection? (2) Should I have additional testing? (3) Are there any other illnesses that could create these medical problems? (not asking for a diagnosis, just an idea if something else could cause these problems).
I can accept having a serious illness but I think that it would be easier for my children if it were not HIV.
I am sorry to be a pest, but I am very nervous and worried. With best wishes, Janie
Dr. Bob, Forgot to Say (Submitted Dec 29, 2010)
The results of the MRI said "bulky pelvic lymphadenopathy" and the other MRIs and CAT scans showed swollen lymph nodes under the arms, in the abdomen, neck and upper chest. My spleen is painful and swollen. I cannot seem to get a diagnosis and my fears of HIV infection are extreme, though it has been over 21 years and I have had 16 negative/undetectable tests. Janie
Sorry to hear you are still having difficulties and a firm diagnosis for your condition has not yet been made. Regarding the possibility of HIV, my assessment has not changed. Your "numerous antibody tests" out six years plus your negative HIV DNA PCRs in 1995 and 2008 are definitive and conclusive. Your CD4 count is depressed due to a low total lymphocyte count. Your CD8 count is similarly depressed for the same reason. Your ratio of helper to suppressive cells is normal.
Responding to your specific questions:
No. No additional HIV testing is warranted. However, additional evaluation of your lymphadenopathy certainly is.
Yes, several. A discussion of these would be beyond the scope of this forum, which is dedicated to HIV/AIDS. If your current physician cannot determine your diagnosis, ask for a referral to a medical center for a more in-depth evaluation. There is no doubt you have something significant going on. However, rest assured, that something is not HIV.
Write back once a firm diagnosis has ben established. I'll post your follow-up for the benefit of our readers.
Good luck Janie. You are certainly not being a pest!