Please help!!! DONATION
Feb 8, 2009
I am a 37-year-old man, and 6,5 months ago I had a risky exposure (unprotected sexual contact) with a woman with unknown HIV status. 6,5 weeks after this exposure, I had several symptoms such as fever for a week, sore throat, one swollen lymph node under neck and severe muscle pain. At the time of my illness and also 3 months and 6 months after the contact I was tested negative for HIV with Ag+Ab testing. But when my symptoms began I suffered from tongue problems (black hairy tongue which lasted for 1 week) and since that time I am suffering other tongue problems which are : light-brown coating on my tongue and white points/patches along the side of my tongue. In addition, I have a never-healing athlete's foot for 3 months and swallowing problems and chest pain. This week I have again been extensively investigated in the hospital with biopsies and endoscopies and diagnosed with leukoplakia on my tongue and what much worse is PCP (Pneumocystis pneumonia) which causes my swallowing problems and chest pain. My doctors said that the leukoplakia I have on my tongue is resembling oral hairly leukoplakia and PCP almost always occur with HIV positive persons. They have said that both of these symptoms/illnesses are ARC although I still had a negative HIV test which they had no explanation for. So, in short, they have diagnosed me with AIDS. But, I don't understand why I still test negative with HIV tests. So far I had several HIV Ag+Ab (Ab for HIV1&2, Ag for HIV-1) test and one PCR test for HIV1 which came back negative. Almost all guidelines say that the maximum window period is 3 months and may be extended to 6 months if you have a kind of autoimmune disease which I am sure I didn't have. At the moment I have no idea what I should do and how I should move. Can you please help me and suggest anything you may think about?
Thank you very much in advance.You are amazing person!
Response from Dr. Frascino
You do not have AIDS. Your repeatedly negative HIV-1 and HIV-2 antibody plus antigen tests plus your undetectable PCR out to six months from your potential exposure are definitive and conclusive. You are not HIV positive and therefore by definition cannot have AIDS.
Your diagnoses, including PCP (pneumocystis carinii pneumonia) and oral hairy leukoplakia, etc. are suggestive of immune deficiency. However, there are a number of medical conditions that can cause immune deficiency (or immune suppression) other than HIV. I would suggest you see a clinical immunologist for a complete evaluation. I would also suggest you have your T-cell subsets checked. I'll reprint below some information from the archives on one type of non-HIV-related immune deficiency disease: idiopathic CD4 lymphocytopenia (ICL).
ICL Jul 1, 2007
I have a question about the definition of Idiopathic CD4 Lymphocytopenia (ICL). First off I know about the qualification of less than 300 cd4 count ( or less than 20%) on two or more occasions and being HIV negative.
One thing I want to know is does the person also have to have an AIDS defining disease or can they be clinicly asymptomatic?
Also is the less than 300 T cell count (or under 20%) mandatory? In other words if a person had an AIDS defining disease(lets say chronic TB), was HIV negative, but had a T-cell count of 650 would he qualify as ICL or would he be just a TB patient?
Thanks for your help, Daniel
Response from Dr. Frascino
The case-definition criteria for ICL include:
1. CD4 count less than 300 or CD4% less than 20% on two or more measurements.
2. Lack of evidence of HIV infection.
3. Absence of alternative explanations for the CD4-cell lymphocytopenia, including Sjgren's syndrome, sarcoidosis, radiation, atopic dermatitis, collagen vascular disease, steroid therapy or lymphoma.
Please note, transient unexplained decreases in CD4 cells may occur in healthy persons.
To answer your specific questions:
1. No, a person does not need an AIDS-defining disease to have ICL. They need only to meet the three criteria listed above.
2. Is a count of less than 300 or less than 20% mandatory? Yes, it's the first criterion listed above.
3. A person with TB and CD4 count of 650 would have TB, not ICL, because she didn't meet this first criterion above. (I should also point out that TB is only considered to be an AIDS-defining illness in folks who definitively have HIV infection.)
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