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| HOW LONG CAN I GO WITHOUT MEDS ? Nov 6, 2000 I find that this site is very good and informative, Thank You. My Question: I was diagnosed in 96, been on azt,emprevir,videx,zerit,norvir,crix,viramune,agenerase, abacavir, along with acyclovir, deca-durabolin,valium,lomotil. I was told that in a test the Dr. found me to be resistant, so took me off all meds. I am a small guy to start with, but now I'm even smaller..Norm lbs 128-132...am now 112-115, I am 5'6". I have been holding my own quite well,T-Cell 235, V-Load 40,000. But now I am getting weeker and can't work a full day, have been off meds. since march 2000, I also suffer from a very bad back & neck, as well CTS that surg. didn't help, now have some nerve damage. I am still loosing lbs. and not sure what is next, Also have been denied disability, do you have any suggestions, also I have "mild HIV encephalopathy" what is that? Thank You .... Ricky |
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Response from Dr. Cohen
Hey Ricky. Hope this answer is helpful to you. First. HIV encephalopathy is latin for saying that HIV is causing some problems with the brain -- and brain function. Like a way to explain why you feel weaker, with more fatigue? Perhaps some trouble concentrating? Or doing your work well? This can happen with a t cell count over 200 -- but it is worth discussing this with the clinician who said you have this diagnosis -- to understand why. As for next steps -- it is hard to say from what you write what you might do next. There are some new meds available in some countries -- and these might have some benefit for you. (I also don't recognize one of the meds you list -- emprevir?) It is important to know not just what you have taken, but to which HIV might have developed resistance. Since the issue is which meds might still have some activity for you in another combo. And even if you can't get full suppression, when someone is not feeling well, including problems of encephalopathy, and the best we can do is just partial control of HIV -- there are reasons why this might be a preferred option rather than no meds at all. Since it is hard to say how long you can or should remain off meds. With your viral load -- you on average might lose about 40 cells per year -- so your t4 count in a year would be closer to 200. Still -- that's an average -- some lose them faster than this. And if your weight loss is due to HIV -- perhaps some medication combo could help here. Like looking to some you haven't yet taken -- a combination of the newest protease inhibitor kaletra with some other meds -- you for example haven't mentioned saquinavir/Fortovase. We at our research location in the Boston area are getting ready for a study of these two meds taken together for those in your situation -- since they might be of some help here. Another option some would check is a testosterone level -- since it might be low, and if supplemented, might improve your weight. Same with the thyroid level -- worth a check. Not sure what exactly is wrong nor what is best to do -- but hope these few ideas give you some places to check next. CC Cal Cohen, M.D., M.S. | |||
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