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HIV related motor deficits
Aug 23, 2006

Hello-

I am so sorry for the long post/question. I just felt that some background is necessary.

I was diagnosed with HIV over 12 years ago. I had a CD4 count of 33 but was never sick. Two months later, I started meds AZT, Videx and Epivir. About two months after that, I started feeling very strange (fine motor skill deficits, balance, speech, etc.). After countless MRIs, lumbar punctures and blood tests, I was diagnosed with PML, and about two months later, I was bedridden and expected to die. My condition was never verified by brain biopsy, as no doctor in Dallas would perform a brain biopsy on an HIV+ person at that time.

Subsequently, I stopped my meds, with the idea that I was going to die anyway. As the result of this or some unexplained phenomenon, I experienced a spontaneous remission. After about two more months, I resumed my drug regimen sans AZT. Later, with the advent of PIs, I added Crixivan, which seemed to work fine for me.

In the ensuing years, I was able to rehabilitate myself to a great extent (my insurance would not cover rehab). I have not worked since 1995 but had gotten much better through the years. My viral load has been non-detectable and my CD4 count always hovered around 270-325 since.

Im writing now because Im experiencing many of the same symptoms that I had before. These symptoms began to surface about a year ago. Typing this email is even a struggle as my coordination is so poor. These symptoms continue to worsen but are not progressing at nearly the rate that they did at the time of the suspected PML diagnosis. I have since switched meds (Sustiva and Truvada). My VL is still non-detectable, and my t-cells have actually risen to almost 400, but I am still having problems. I have had three more MRIs, a spinal tap and a Gallium Scan and many blood tests for everything imaginable, i.e, Lyme disease, vitamin deficiencies, homocysteine levels, Myasthenia Gravis, Whipples, etc. All with no success. It appears that the lesions in my brain have not increased in size, so therefore my neurologist does not think it is the PML recurring. There is cerebellar atrophy, which explains my coordination and my speech problems.

My infectious disease doctor does not think that it is HIV related but cannot find anything else wrong. I have been to see neurologists, neuro-psychiatrists, neuro-psychologists, and they all say that it must be ADC. My ID doctor is the only one who doesn't think that it is HIV related, but hes stumped as well.

It is so frustrating to me to have most of the same symptoms that I had in 95 and have my doctors tell me that they cannot find anything. I think when I was diagnosed with PML (suspected) it was so early on in the scheme of things that no one was really certain as to what was going on.

I have endured yet one more LP and the viral load in my CSF is non-detectable as well. So, I dont understand. If the viral load in my CSF is non-detectable, how can it be that my underlying HIV infection would be causing my current symptoms?

If there is anything that I can do, I will gladly do it. I really dont want to just sit and die. There is only one doctor listed as a NeuroAIDS specialist (on the NARC website) here in Dallas, and I have seen him also. According to him, he does not specialize in this arena and has not seen this before.

I am absolutely at a loss and obviously frustrated at this point. Have you seen other patients with the same sort of issues or perhaps have an idea of what I should be looking for or doing now.

Thank you so much for your time.

Response from Dr. Henry

WOw-that is a tough situation. Was the MRI consistent with old PML (usually some lesions are persistent--I have had some patients continue to have some smouldering problems years after they had generally recovered otherwise though often with some persistent neurologic damage). I have had a few patient whom I have added another drug to the regimen in hope of even better decreasing even low level HIV replication in the brain (I often have avoided use of NRTIs in situations like yours ince there seem to be a few patients who are sensitive to even minor mitochondrial toxicity). A few patients seem to have benefited from use of L-acetyl carnitine and sometimes other anti-oxidents. KH



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