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AIDS vs. Idiopathic CD4 Lymphocytopenia

Dec 16, 1996

Mr. Sowadsky, I am currently researching controversial aspects regarding AIDS and HIV. I recently learned about an immune deficiency syndrome called Idiopathic CD4 Lymphocytopenia (or ICL) which is similar to AIDS except that HIV is not detected in persons with this syndrome. Could you tell me if: 1) ICL exhibits any particular symptoms or opportunistic infections which make it unique from AIDS? 2) Does ICL cause minor immunosuppression or is it equal to that in AIDS? 3) Can ICL be recovered from or cured? 4) Is there any suspected cause for ICL (another virus perhaps?) I would appreciate your commentary very much. Thank you.

Response from Mr. Sowadsky

Hi. Thank you for your question.

Idiopathic CD4+ Lymphocytopenia (ICL) is a very rare disease. The case definition of ICL was established in 1992 by the Centers for Disease Control. It states that the person must have a CD4 cell count less than 300/mm3 on two or more occasions (or a CD4 count of less than 20% of total lymphocytes on at least 2 occasions). In addition, the person must have no evidence of HIV infection, nor other diseases of the immune system, nor immunosupressive therapy.

There was concern back in 1992 that there were many cases of AIDS where HIV was not present. When these cases were further investigated, it was found that most of these cases were actually infected by HIV. However, initially, no HIV testing had been done, or the HIV lab results simply were not reported. This led to the erroneous conclusion that the person wasn't infected with HIV. However, when the lab testing was done, most of the suspected ICL cases did indeed have HIV. In a few other cases of apparent AIDS without HIV, when these cases were further investigated, it turned out that the person never had AIDS. Rather, they had other diseases of the immune system. So for the vast majority of cases of apparent AIDS without HIV, when these cases were further investigated, most of the people did, in fact, have HIV, or they had other diseases of the immune system.

There are persons who do have low CD4 counts (as described above), yet don't have HIV, nor other known diseases of the immune system. Luckily, these cases are very rare.

There are some major differences between AIDS and ICL. In persons who do meet the definition of ICL, there is no evidence of an infectious cause to this rare illness. Some ICL cases may be only temporary, and the CD4 count may return back to normal levels without any type of treatment. In ICL, usually the low CD4 count either remains stable, or the count rises again back to normal levels. This varies dramatically from what we see with AIDS, where we see a progressive and continued decrease in CD4 counts over time. All of the evidence shows that ICL is a distinct entity from that of AIDS, and is an extremely rare condition.

The cause of ICL is not known, and may actually be due to multiple causes. Persons with ICL can get the same opportunistic diseases as persons with AIDS and other diseases of the immune system. Remember, having an opportunistic disease alone is not diagnostic of AIDS. Other testing must be done to determine if an opportunistic disease is caused by AIDS or other diseases.

ICL has probably been around for a long time. However, since we are testing people's immune systems more than ever before, we're starting to find rare problems of the immune system that were previously overlooked. The more we examine the immune system, the more we will find rare problems associated with it.

If you have any further questions, please feel free to e-mail me at "" or call me at 1-800-842-AIDS (Nationwide). I'm glad to help!

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