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Feel like I'll topple over
Jun 7, 2009

Within the past week I've gone from feeling like a pretty normal person to so weak and out of it that I feel like I'll topple over. I think I"m exhibiting a lot of signs of at least early stage dementia (I've seen the list and have run the table), which would be scary if I didn't mostly feel horribly apathetic. I've not been a very compliant patient and have gone on and off meds several times (usually take them consistently, then stop taking altogether). My CD4s have bounced between 50 and 300 depending on what I do with meds. I'm not sure where I stand now, but obviously this sudden onslaught of tangible symptoms has me feeling like the other shoe is dropping--maybe even halfway to the floor already. How fast can one go from being completely functional to collapsing? I have this image of me out and about doing my normal routine and suddenly hitting the dirt--in the grocery store, in the bathroom at Starbucks, in the lockerroom at my gym. Are there some tests I can do (strength or agility/balance) to get some objective sense of where things stand? Some mental cognitive/memory tests? I feel like I'm turning into some wild-eyed lunatic who won't be able to tell when he's about to turn into a babbling puddle of incomprehension. I don't even know if what I'm asking makes sense. It's just that on a dime my life has turned upside down in a handful of days and I'm losing my handle on it fast.

Response from Dr. Frascino


Unfortunately a symptom complex like yours is not something I can evaluate accurately over the Internet with such limited information and without the benefit of reviewing your entire medical record and performing a physical examination. That said, I do have some advice for you.

If your CD4 counts are between 50 and 300, you have AIDS with significant immunodeficiency. When your count falls below 200 you are also at significantly increased risk for HIV-related opportunistic infections and malignancies. The further your CD4 count drops the greater your risk for opportunistic illnesses. How quickly can an opportunistic infection or malignancy present and cause severe symptoms? That varies considerably and depends on the disease process and level of immunodeficiency. Can it develop extremely rapidly? Absolutely.

I'm quite concerned by your history of not being compliant with your HIV medications. This certainly has contributed to your disease progression and increased risk for life-threatening opportunistic infections and malignancies.

As for whether there are tests to evaluate "where things stand," yes, of course there are. What you need to do is see your HIV specialist immediately. He will evaluate your symptom complex and degree of immune impairment with the appropriate tests and laboratory evaluations. He will also hopefully be able to specifically treat the underlying cause or causes of your problem. You also need to discuss your HIV medication noncompliance with him. There may be very good reasons why you stopped your medications, such as intolerable side effects or inability to afford them, etc. Your HIV specialist should be able to help you navigate these problems. There is no doubt that you need to be on effective combination antiretroviral therapy consistently and with excellent adherence. I urge you to act now. Procrastinating could have disastrous consequences.

Good luck. I'm here if you need me.

Dr. Bob

"Criminalizing" HIV
Anemia & HIV Part 2

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