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Herpes, HIV and Neuropathy

Feb 28, 2004

I'll try to be brief - 1st, Thanks, even if you never get to my question, Thanks. I found out I was HIV+ because of a severe pain in the butt. No really, my butt hurt way to bad to sit down. I was poked and probed and swabbed and nothing. Then I asked for a complete STD panel. I was telephoned and told that my blood test came back positive for Genital Herpes and that must be the cause of my pain in the butt. By this time the pain had raditated beyond my butt and I began to tinglr on my left thigh, then additionally my right thigh, then my left ankle went stiff for a few weeks, and my toes on both feet began to hurt. Then my lips on the right side of my face began to burn, no B-U-R-N, then my fingers began to B-U-R-N. Then I found out in addition to the HSVII, I also tested positive for HIV. Months passed with no explanation for the "sensations" I was experiencing, then I cahnged doctors. I now have a very well respected HIV doctor in Houston who immediatley sent me for an MRI, which came back abnormal, so off to a Neurolgist. he stated I had a mild case of Neuropathy. Brain MRI followed, no lesions (great news finally). Treatment is 50mg amitriptyline once a day and 1200mg Neurontin 3 times a day (3600mg a day). No Anti-HIV treatment. The neuropathy - could it be HIV related. Could it be HSVII related. Since no one has ever seen a blister on me, I'm a bit confused on the Herpes outbreak symptoms/Pro Drom thing. I've had the same worseing symptoms since July 2003 when this all began. Viral load is 9266 and CD4 is 529. Begin HARRT? My life is good, but dang it's gotten complicated. If you're reading this and are HIV- - Boy's and Girl's - stay that way.

Response from Dr. Pierone

You are right about the importance of staying HIV negative. I just had a conversation with a patient of mine that recently seroconverted regarding how his life has changed. He is a high-level professional that would lose his career if word of his diagnosis leaked out into the small community in which he resides. Unfortunately, AIDS discrimination is alive and well in small town Florida (many other places too). He will do well from a medical perspective because he has insurance, excellent life-skills, and attends carefully to his health. But the detrimental impact of this diagnosis on his personal life and psychological health has been enormous and will be felt for years to come.

Moving on to your situation, you mentioned that your MRI came back abnormal. Was this an MRI scan of your lumbar spine and was there evidence of inflammation of the spinal cord? If so, a lumbar puncture with analysis of spinal fluid may help sort things out and determine what is going on (HSV vs HIV vs other).

Some people with HIV infection develop early neurologic complications related to the virus and benefit greatly from antiretroviral therapy. So even though you numbers are good, you should consider treatment to see if this helps your condition.

Scrambled words!
ultra-violet light therapy

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