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Help me Obi Wan. You're my only hope
Jan 18, 2005

Okay Dr. Bob....I've baffled Infectious Disease Specialists for almost 18 months now. ALL of them suspect HIV infection, but the virus hasn't been found and it's been over 2 years since I was exposed.

18 months ago I had an upper respiratory infection, ear infection, pharngitis, folliculits and aseptic meningitis at the same time. (I'm still lightheaded).

I still have oral hairy leukoplakia. Still experience malabsorption. Have experienced cycling liver inflammation. Have had panic attacks. Sebhorric Dermatitis too.

Have also had cycling skin lesions...ones that look like paper cuts and oval shaped ones.

My CD4 counts have remained over 1000, so I'm told that this virus is being effectively managed by my immune system.

But 18 months of lightheadedness is a bit much to endure.

I've finally found an ID specialist who is going to look for the virus in my spinal fluid.

I've long argued that my lichen planus diagnosis of 10 years ago might be affecting my HIV test results. For reasons I fail to understand, this has often fell on deaf ears.

Assuming this virus is found in my spinal fluid, I guess this will make me a one in a million case. If not, I guess the only other explanation is that it's a mutation.

I've asked a few doctors for any alternative explanations as to why my body is responding to a disease that experts suspect to be HIV, but can't be found. They don't have any alternative explantions other than HIV.

If HIV is found, do you know any places that have a great reputation for treating it when it's in the Central Nervous System?

Response from Dr. Frascino

Hello,

I would strongly doubt, from what you have written, that HIV is the cause of your symptoms. Lichen planus does not affect HIV test results, and I can see no reason HIV would be found in your spinal fluid. Your fixation on HIV disease as an explanation for your symptoms is not warranted by overwhelming evidence that you are not HIV infected. My advice would be that you seek some counseling to help you accept the fact you are HIV negative as you and your doctors continue to evaluate your ongoing complaints.

Good luck.

Dr. Bob


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