Dec 11, 2006
HX 37yo, DX 10 1/2 years ago, CD4 was 612 in 96,in the 80's 2 years ago. Now, VL is less then 75 CD4 ?, Was 300's nov 05, 180 Feb 05 (va hospital hasn't done it but, says my % is good so they aren't worried). Meds combivir BID, Sustiva at bedtime, quetiapine TID and Bupropion BID (was on testerone for 6 months but they are going to do labs in Jan to see if they are going to refill it) Only infections are thrush (once for a year with cd4 over 200)oral hairy leuk,shingles and hpv. But, somedays I can barely stay awake for 3 hours before I am totally wiped out. I sometimes have to use the hand rail to walk stairs. I feel 80y/o. For over a year I feel like I am just getting a cold. Fever, night sweats, exhaustion, sore chest (lungs feel raw)groin area swells and feels bruised (sometimes its so bad it hurts to walk) my neck feels like someone has punched me on both sides (but no swelling)I can't remember anything (I forget to feed my dogs sometimes)and I can't focus on anything. The VA hospital says my labs are good, I'm "healther then we are" I'm "health as horse". I have been sick 8 times in the past year and twice in the past month (to the point I can't leave the house). I told them something feels wrong and if all my labs are good why do I always feel so bad? They said it has nothing to do with HIV. But, that's all they say. I can't afford medical care and can only go to the VA hospital. Are they right? Is this just the way I am and it has nothing to do with HIV? 6 years ago I jumping out of C130's and going on 12 mile road marchs now sometimes I don't have the energy to walk my dogs.I don't know how long I can stand to live like this. This isn't living to me.
Response from Dr. Frascino
I agree "something is wrong!" Although unfortunately I cannot diagnose your problem over the Internet with the limited information provided and without having the opportunity to review your whole chart and examine you. The V.A., depending on where you live, has some excellent HIV specialists. I suggest you make a thorough list of your current problems. List when the symptoms began and if they are getting better or worse. Then discuss the entire list with an HIV specialist and make a plan to address each specific complaint. The V.A. doctors must not only tend to your HIV lab results, but you as a whole person! If they don't feel HIV is the cause of your current symptoms, they should refer you to whatever specialty department would be appropriate for you to get the answers you need. Quality of life has to be an integral part of every treatment equation! If, after thorough evaluation, they still cannot determine a physical cause of your symptoms, consider a psychological or psychosomatic problem, as these conditions can be effectively treated when appropriately diagnosed.
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