|Neuropathy and CVD
Jun 27, 2002
Dr. Bob: Although I visit the MD (Inf. Dis.) regularly and read quite a bit about the disease, I have not found anyone who really hits my questions, so here goes the info on me. I have been positive for ten years (from a needle stick while moonlighting as a phlebotomist, but before PAP was recommended). I have been on meds for four years. My CD4 is good (700-1000 at any time) and I am undetectable for over a year. (Formerly a PA, but not now--Can sympathize with you and your situation.) My maternal grandmother had a major stroke at age 55. I am now 60. I was on PI's for a time, but am now on Sustiva, Epivir, and Ziagen. Three years ago (while on the PI's) I had a stroke. Fortunately, a great neurologist was on duty at the ER, and I was given a TPR. Within two or three hours, I was 98 back to normal. One year ago, I had an MI (was off of PI's by then and on the current regimen). I now take Plavix, Zocor, Monopril, and Ziac. For the neuropathy in the feet and legs, I take fish body oils and Neurotin. (Tried Elavil, but it zonked me out too much!) Because of the neuropathy, I do not walk as much as my cardiologist would like me to. I try NOT to be a couch potato. What about fish oils? I do eat lots of salmon and totally avoid red meats. I also take vitamins and B-complex. Any suggestions for exercise that I can do to help the heart, but avoid stress on the feet. (Went to the beach and love to walk on the beach with the wife, but suffered for days with the burning and pain in the feet.) Also, how about the fish oils, etc. I live too far to get a proper yoga teacher or tai chi teacher. Love to meditate and contemplate the navel--seriously, I believe in prayer and meditation. I am too young and have been too active to throw in the towel just yet. I have great doctors, but wish I could get them all around the same table to discuss together what they recommend for me. Thanks for your interest and your good work. Because of my work and the lack of understanding I sense from the bosses, they are unaware of my situation. Only the wife and about eight other people know about me.
Jerome St. Benedict
Response from Dr. Frascino
Hello Jerome St. Benedict,
Great name, by the way! One exercise that doesn't put any weight bearing on the sore feet would be swimming. Do you have a convenient health club, YMCA, or pool you could use? Fish oil supplements are fine. The jury is still out as to whether or not they help with neuropathy. Your AIDS specialist should be coordinating your overall care - talking to the neurologist to help with neuropathic pain control, to the cardiologist for MI follow-up, and to whatever other specialists are involved in your care.
Identify which of your doctors is going to be the quarterback of your team and make sure he/she agrees with the role. Then make a list of your questions - pain control, exercise concerns, supplements, etc. and present him with the list. If he's not willing to help you get answers to these questions, it's time to find another HIV specialist who will work with you!
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