HIV symptoms+low CD4, but HIV-negative?

[concerned002]

I had protected vaginal, unprotected oral with a CSW back in 1993 and 1998, but I tested negative both times.  In 2006, I started experiencing floaters in my left eye. Got tested again (negative).  In March of 2007, I came down with a case of shingles. My wife took a job in Singapore last year and I went to visit her in November. A few days after sex, 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.   One week  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.  Could the tests all be wrong and I really am infected?   Are there any other tests that I can take that could show evidence of HIV infection?  I have heard of something called non-HIV AIDS.  Could it be that is what I have?

[Edward W Hook, MD]

If there is a local medical school, they are likely to have a clinical immunologist who you could see.  Alternatively, an infectious disease specialist with expertise in HIV medicine might help.  In either case, if you start with one of these and they feel they are not the correct person to talk to, they should be able to refer you locally better than I.  Good luck.  EWH

[concerned002]

Doctor, thanks for replying.   Do you have any suggestion as to what type of physician/specialist I should see?  I have been to a couple of doctors, and they didn't have any idea what could be wrong with me.  

Thanks again for your help.

[Edward W Hook, MD]

NO, NO, NO, NO -  you do not have HIV.  This is a fact.  Conclusively!!!!  The tests are reliable and you have not had one but many.  Furthermore, you have not only had tests for HIV 1/2 antibody but also tests for the virus itself.  There is simply no way that you have HIV.

So what is going on?  There are many possibilities.  Your CD4 count could be low as a reflection of a very rare condition called the Idiopathic Low CD4 Syndrome which increases the susceptibility of people to what are otherwise unusual infections (this is probably what people were referring to as the "non-HIV AIDS") - this is not a sexually transmitted infection.  Idiopathic means the cause is unknown.  Far more likely however is that you may have a chronic medical condition which is reflected by a low CD4 count, as is the case in many, many illnesses.  In addition, your anxiety and guilt over events that happened over a decade ago may be interacting with other things to make the entire situation worse.

What to do.  This is NOT something to deal with over the net.  You need to see a physician whom you are comfortable with and work with him/her.  they need to carefully examine you. catalog your problems and perhaps run some tests (not HIV- we KNOW you do not have HIV).  This will likely take so me time but you make things worse by going from provider to provider.  

Good see a physician.  Forget about HIV.  Hope this helps.  EWH

p.s.  a WBC of 6K is normal as is fluctuation between 6 and 8l