HAND and nadir CD4 count

Question

Hello David

I read your recent article on HAND, which resonates with me, as someone who lives with most of the neurocognitive problems discussed therein. When I first started mentioning these symptoms to my HIV doctors it was usually dismissed as depression. 3 Neuropsych assessments confirmed actual cognitive impairments not consistent with depression. From there the HIV doctors (I see different doctors - they come and go) seem to have read the literature and concluded that it will be at worst stage 2 impairment, since received wisdom says ARV prevents stage 3 dementia.

I believe my case is different. Firstly my HIV went undetected until it was almost too late, with a CD4 of 20 and stage 4 lymphoma. I think some cognitive impairment occurred during this time (15 years ago) so that the argument that ARV prevents stage 3 impairment is only partly true in my case. The doctors seem to think I am a quite comfortable stage 2 HAND case and that anything else is a product of anxiety - I think I'm heading into stage 3, with my age one of a number of additional factors - I'm nearly 62.

I don't expect to be seen by the Neuropsychology people again but have a referral to a Neurologist next month. Based on the above what would be your comments on my assertion that I am an atypical case of HAND and how might I approach the subject next month with the Neurologist and subsequently in discussions with my HIV specialist doctors?

Thank you

Kevin

Answer

Hi and thanks for writing,

Unfortunately we just don't know a lot about HAND and its progression, and how to distinguish any symptoms from HIV, effects of meds, or aging itself.

You low t-cell nadir certainly puts you at a higher risk. The best protection we have is maintaining an undetectable viral load and avoiding excessive mood-altering chemicals or drugs that affect the brain (for me these include drugs like Ambien).

You have had more extensive neuropsych testing than most people. I couldn't comment on whether your case is atypical or not. I do know that anxiety (unrelated to HIV) can disrupt cognitive functioning (as can depression). I think it would be a good strategy to focus on managing your anxiety and worrying less about stages which, honestly, are not really exact and well-defined.

Wishing you all the best,

David