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Normal low CD4 and Viral Load Looking Ahead

Oct 18, 2003

I was diagnosed as HIV+ in 2002 and was found to have a low CD4 count while in the hospital for chest pains.

My first appt. with an infectious disease doctor was one who clearly didn't care. He asked questions that he answered for himself in mid-sentence. As he asked me to strip for the exam, he told me that the first thing I would lose with this illness was my dignity. I firmly told him that my dignity wasn't so easily taken.

After the exam, he read my CD4 - which was taken in the hospital while I was in great pain and showed as 257. He pulled out a MAC (?) chart, showed where he felt I was at, and said I would be full-blown AIDS in less than four years. He then ended the appt. and walked out of the room.

A month later, angry, I had the CD4 test rerun and took the viral load test the doctor had requested. My CD4 had gone from 257 to 406 and my viral load was 4702. With the same disinterested look on his face, he pulled out the same MAC chart, pointed to a different place, and then said I was a long term nonprogressor and that if, IF, I was to ever have any trouble from HIV it wouldn't be for another 25 years or more. He then told me he wouldn't put me on meds yet, even though he said I had asked, which hadn't entered my mind at that point.

Note: I have fired that doctor.

Shortly after my diagnosis in 2002, I signed up for a study group for long term nonprogressors that now monitors these levels every 3 months. A year after the first tests show that my CD4 is 362 and my viral load is 2337, but 6 months earlier, a week before being down with a high fever from the flu, my CD4 had been 491 and viral load 15875.

With a traditionally low CD4 count - I checked back through my medical records looking at both times I was ill and normal yearly exams - I am wondering that, with the variability of the viral load tests and the low CD4 level, what can I expect from the 'long term nonprogressor' label on the CD4 and viral load?

Response from Dr. Holodniy

EEEK! What a horrible experience. Hoepfully door #2 will be better. The current definition of long term nonprogression is usually one reserved for people who have been infected for 10 or more years, usually have CD4 counts > 500 and have very low or undetectable viral loads. You will see fluctuation in both viral load and CD4 count with acute illness. CD4 counts will also vary with time of day, stress, lab performing the test, recreational drug use, other going infections, etc. Your numbers indicate that your immune system is in relatively good shape and I would not recommend starting treatment at this time. Current guidelines suggest treatment should be started when the CD4 count is < 350 and/or the viral load is > 50,000. How long you will maintain your current numbers will only be determined over time.

Viral Load 64 wihout treatment
VL Wont stay down

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