Question:
Was recently diagnosed with early stage HIV Dementia. Don't want to sitback passively and wait. Need information regarding the syndrome, inparticular, what may exacerbate the problem, for example, effects of alcohol,pot, etc? What life style changes can I make to prevent or slow downprogression? Are there any good reference materials that can give me insightinto the disease? Are there drugs that may be useful (I can'ttake AZT)?

What's your ideas???

Answer: First off, the San Francisco AIDS Foundation puts out an excellent booklet,which I believe is called "Living With Dementia" (don't have a copy handy).

Progression varies: some folks have only minimal symptoms; others progressslowly; and others progress rapidly. As far as I know, there is no way topredict this. The condition is usually associated with HIV brain lesions,which are also not real readable, ie., one can have miniscule lesions andmany symptoms.

From folks that I've dealt with, I'd say the symptoms are aggravated bystress, lack of sleep and certain medications (particularly any of adepressive nature). So I think it's safe to assume that the drugs youmention might be detrimental from a behavioral and functional standpoint.

Treatment: AZT, ddI and ddl are reported to decrease the rate of spread ofbrain lesions -- but only if taken in very high doses, which many can'ttolerate. Some folks have reported improvement with alternative meds such aspeptide-T and NAC.

Other medications are entirely dependent upon an individual's symptoms. Ritalin is quite effective for those who have a problem with attention,concentration and confusion. For seizures (these may be very minimal onessuch as "absence seizures," or more generalized focal of grand mal seizures)Tegritol seems to be the drug of choice for those with HIV as it works betterin this instance than Dilantin and the other usual meds. Also,antidepressents are useful if there is dementia-associated depression.

I recommend the booklet I mentioned, as it also has good info for caregiversand other associates on how to deal with behavioral changes that may or maynot take place.