HIV dementia & CNS infection


My niece has been estranged from my family for over 30 years and I decided to try to track her down last year. I was able to easily as she had recently gotten arrested and was in jail. We corresponded during the past 18 months and my husband and I decided to take her into our home when she got released to try to help her start a new life. I knew previously that she was HIV+ but learned she also has Hep C. She is a former IV drug user and prostitute and was frequently homeless. She is 46 years old.

She was recently released from prison and was put on a bus to our home. She almost didn't make it here due to severe confusion and several people were kind enough to help her along the way. She was found unconscious outside of a bus station in a nearby city and taken to a hospital there. We eventually found her and she was admitted to the hospital for 2 days for observation due to her mental state and unstable gait. They released her to my home on August 8th. She is very sweet and I don't know if there is any personality change since I had not seen her in so many years. However, she was clearly confused as to where she was and where she had put things, walked very unsteadily, and had hand tremors and lack of coordination. By the end of the week, she was falling daily in the bathroom after a shower and could not stand up afterward (it was very difficult even with my help). We knew she needed medical help (and was reflecting symptoms of HIV-associated dementia) so we took her to an ER on Aug. 16th, where she was admitted and has been since.

An MRI did show evidence of HIV encephalopathy apparently causing the dementia. A spinal tap the other day showed an infection in the CNS and although the doctors were not certain what it was, they are treating her for TB since she has been exposed to it. They finally found out what HIV meds she was on in prison and started her back on those (they are Norvir, Reyataz, and Truvada). She had told me previously that she had tested positive for HIV 10 years ago, then she told the doctors it was 19 years ago. Given her current condition, I can't be certain which is correct.

My question is: does this sound like this is turning into full-blown AIDS in your opinion? The doctors have not come out and said that I didn't want to ask in front of her. We are hopeful that the HAART regimen will help with the dementia. They feel that she will need to go to a long-term nursing facility when she leaves the hospital rather than coming back to our house and I am heartbroken over that. I'm just wondering if this sounds like something that can be overcome or if we should be prepared for a downward spiral. Thanks for your help.


She most certainly has AIDS. Her symptoms are consistent with HIV-associated dementia, which qualifies her for a diagnosis of AIDS.

One question is whether or not she was regularly taking her ART meds in prison and for how long. Prison healthcare is often suboptimal. Her doctors need to decide whether this ART regimen is the correct one for her. Resistance testing can help answer this question by providing information on whether she has any resistant strains of HIV, and if so guiding the choice of other meds.

An appropriate HAART regimen should lead to improvement with the dementia. I worked for many years as the psychiatrist in a nursing facility for people with AIDS. We had a number of patients who came into the facility with advanced AIDS and dementia, usually due to not being in treatment. We saw remarkable recovery in many of these patients when they were properly treated. Some improved enough to live outside the facility.

The hepatitis C complicates the picture because it also requires treatment and a hepatitis expert will need to be consulted to evaluate and make treatment decisions.

You should remain hopeful that your niece may improve with treatment, perhaps even enough to be able to live outside a nursing facility.