I have been diagnosed HIV positive for 6 years and have taken Trizivir and Viread, then switche d to Sustiva and Epzicom. Viral loads and CD4 are excellent, all things considered, not detectable and staying above 500 now. About 4 years ago, I began experiencing pain throughout my back, hip, and legs, as well as peripheral neuropathy in hands and feet, and 'foot drop' when not concentrating on keeping my toes elevated when walking. Went through physical therapy (physical torture), spinal and caudal procedure, as well as other pain management. My doctor through my HIV was affecting my spinal nerves and suggested I would never be the same, to the point of placing me on disability ... not working, standing more than an hour or so, sitting, nor walking. Neurontin, as well as Zanaflex, and a switch from Celebrex to Piroxicom keep it under somewhat control, with rest being the main key. I want to be more physical and fit, but find it extremely difficult to do so. I'm confused about HIV in the spinal nerves, and his suggestion that we can solely treat and make comfortable. I've read about several new procedures, such as a spinal pump, but am unsure about those. What info is out there to explain some of this, how it happens, and how best to treat? Am I really in this for the rest of my life?

HIV neuropathy is not very common in the setting of good HIV control and robust T cell counts. If there is evidence of ongoing HIV replication in the CNS (spinal tap results for example) then switching to a regimen than has higher CNS penetration is often considered. I try to get an HIV experienced neurologist involved to better pin down the diagnosis and offer perhaps more cutting edge therapies for any problems that is identified. KH