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Lipodystrophy and WastingLipodystrophy and Wasting
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you have been right all along
Aug 27, 2003

Hi Miss Fields-Gardner

I wrote to you almost a year ago about severe body composition changes after a strange acute illness following high risk sexual exposures. You suggested it was a cortisol problem, and guess what? I have been averaging a cortisol level of around 100 (normal being 1-33) for the past half year (the time I began checking the level with 24 hour urine specimens).

Now here is my dilemma: They have still found nothing -other than CMV and EBV antibodies, no viral loads for either one, no viral loads or antibodies for any other virus or bacteria. All they can find is a cortisol level that is out of control.

onetime, I showed up at the doctor's office with horrible swollen glands (they are always swollen but this time they were huge) and diarrhea and fever, and we did some blood work and found that my cd4 level was 467 (although the percentage was normal - 49 percent) and my cortisol level was up at 180! Just to give you an idea of what's going on.

My wasting is getting worse now as well. My elbows, knees, shins, neck, face, hands, pretty much everywhere on my body, is getting more and more flat and bony. My face is more and more resembling late stage AIDS patients' appearance of a wasted down face with a fat-mask covering what used to be muscle and healthy tissues. i hang in the cheeks and have hallowed out bags underneith my eyes - temples tapered in, gum recession in my mouth, and everyone I know notices it, although it's not so drastic that I look like I'm on my death bed (mainly because I was in such good shape before this that I still appear to be strong in my body despite my losses).

Anyway, I have told you a lot here, I know. You have to do me a favor and not doubt anything I'm telling you. When doctors see me, they say "oh you look fine, you have a naturally narrow face, many people do." But I DON'T hve a naturally narrow face. They didn't know me before this began, and even when I show them pictures, they somehow dismiss it as a change in my diet or exercise (which is not at all the case - what the hell do these doctors know about exercise and nutrition - not half as much as I do).

Anyway, what to do about a cortisol level that doesn't want to come down - in or not in the presence of some other infection?

Also, the wasting is taking place all over, but particularly in my glutes (butt) and upper thighs. i know this is a common problem with HIV positive people, which is just another reason I'm still suspicious of HIV infection despite testing negative out to a year and a half on all HIV tests: ELISA, EIA, Western Blot, p24 antigen, DNA and RNA by PCR. It just seems like too many coincidences and HIV-like problems to not be an HIV infection.

Miss Gardner, thank you so much for your time on this. I'm very impressed that you had that cortisol thing pegged long before I or any doctor even suspected that to be the situation.

Please don't write me off as some worried well. There are people who hallucinate seeing buildings fall, and there are people who witnessed 9/11. I myself have had nightmares about buildings falling since this health crisis with me began. And I can tell you right now, I saw the twin towers fall on CNN, and what is going on with me is not like what's happening in my nightmares. It's just like what I saw on CNN. There is a huge difference.

Thanks again.

Response from Ms. Fields-Gardner

Cortisol is a hormone and it is probably pretty rare that such a combination of things can be pinned on one thing only. Not to mention that when cortisol is pumped out at high levels it affects many other hormones and risk factors.

My recommendations is to talk with an endocrinologist about your situation. And to rule out diet as a factor, you may want to talk with a dietitian who works with the endocrinologist you see. Ask for an education session with one of the nurses on staff who works with the endocrinologist to go over the possibilities with you.

High cortisol levels often result from infection and other problems... I hope that you find the real source of the problem soon.

Best wishes!

Stomach pain and upset?
lipodystrophy [and risk factors, measures]

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