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Help! Low CD4...Do I have HIV?

Jan 24, 2008

Hi Dr. Frascino,

I feel like I am going to die...I seem to have many symptoms of HIV and a low CD4 count (396), but have tested negative for HIV, so have not been given any treatment. Do you think I could really be infected, but it is not showing up on the tests? And I am trying to figure out which encounter I could have been infected from.

Back in 1993, I had protected vaginal, unprotected oral at a massage parlor. I didn't get tested until 1996, but it came back negative. I went to another massage parlor in 1998 (also receiving protected vaginal, unprotected oral). Got tested in 2002 and came back negative. In 2006, I started experiencing floaters in my left eye. The opthamologist thought that it could be HIV-related and suggested I get an HIV test. I did, and it came back negative. In March of 2007, I came down with a case of shingles. Another opthamologist suggested that I get an HIV test, but I did not.

Now, my wife took a job in Singapore last year and I went to visit her in November. After I had sex with her, I found out that she had been having an affair. A few days afterward, I started experiencing a fever, loss of appetite, chills, night sweats, and extreme dry mouth. There is swelling in the inside of my mouth (cheeks) which is still there and my gums have receded. I also noticed white patches and ridges had formed on the sides of my tongue. Of course this freaked me out, so I went to get tested one week post-exposure. HIV 1/2 test was negative, as was DNA PCR 1. However, my tongue got worse (bloated and swollen) and my lips started to crack and whither and seem to have changed color (redder). There also seem to be small white bumps on them. I got tested again four weeks post (HIV neg, RNA PCR neg).

But my symptoms (bad headaches, diarrhea) seemed to be getting worse, so I got tested again at six weeks (HIV neg). Nine weeks post, I am experiencing headaches, diarrhea for more than six weeks (and bowel noises), painful sore throat, dry/itchy skin, tingling/numbness in my feet. My tongue looks very gross and swollen now. I also seem to getting skinnier and losing muscle mass. I got tested again and it came back negative (HIV 1/2, viral load undetectable). But the doctor also tested my CD4 count and it came back with 396. There was also a drop in WBC from 8K to 6K in three weeks. Now I am really scared that I really do have HIV, but the tests are not picking it up, which means that I am not getting treated for it.

1) Could the tests all be wrong and I really am infected? 2) What would happen if I take HIV meds if no HIV was detected? 3) Is there anything else that could be causing my problems and low CD4 count? Are there any other tests that I can take?

Any suggestions, doctor? I am really desperate and worried. Thanks, Stephen.

Response from Dr. Frascino

Hello Stephen,

Your story is indeed a sad and all-to-common one! You have been fixated on an illness, which you could not possibly have; had an excessive number of unwarranted HIV tests (all of which have been negative); and now a physician orders a completely unwarranted test (CD4), which comes back mildly suppressed, and your anxiety levels skyrocket (inappropriately) once again! If you read through the archives, you'll find many similar scenarios. The common denominator is always an abnormal and unwarranted fixation on HIV, excessive and inappropriate HIV testing and the ultimate realization that HIV is not the cause of the problem!

Your repeatedly negative HIV-1 and HIV-2 tests, including RNA PCR and DNA PCR, are definitive and conclusive. HIV is not your problem. No way. No how! There was no reason for a physician to order a CD4 count. That said, CD4 counts vary considerably due to all sorts of ailments. The CD4 count is not HIV specific! Your slightly low value could represent anything from a mild cold to excessive stress to diurnal variation!

To specifically address your questions:

1. No, absolutely not.

2. You would make yourself sick.

3. Yes, the possibilities are innumerable!

4. No.

My suggestion is that you stop perseverating on a disease (HIV) that you could not possibly have. The evidence you are HIV negative is irrefutable and overwhelmingly conclusive. If you cannot accept the wonderful news that you are HIV negative, you need to seek psychological or psychiatric counseling. For your other various complaints, you should follow up with a good general internist. Most likely many of your complaints are psychosomatic and related to stress and anxiety. One thing that's for certain: they are not related to HIV!

Dr. Bob

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