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HIV Related Brain Impairment and a correlation with meningitis

Oct 30, 2004

I am British, living in rural middle England and have just started subscribing to The Body. Its easier to understand than some of our British equivalents.

Forgive my peculiar terminology and spelling; having worked with Americans and Canadians I know our vocabulary differs.

I am now a 60-year-old female and I was diagnosed at a London GU clinic HIV+ in Jan 1995. In late 1993, I remember an illness, probably my seroconversion, which at the time I suspected was meningitis or an unexpected recurrence of malaria. Just prior to the illness I had surgery and my doctor diagnosed my torso rash as an allergy to elastic stockings I left hospital in.

My partner died in 1997. Our relationship ended in 1994 because he muddled engagements and I thought he was jerking my chain. By 1998, with hindsight, I recognised he probably had HRBI.

By 1998 my medical and psychology records documented my growing concern about my perceived failing cognitive skills. I was an IT lecturer and I had concentration difficulties and, for the first time in my life, struggled to keep pace with changes in my field of expertise.

By 2000 after a serious of distressing disputes in London with my registrar, a consultant, a psychologist and a psychiatrist who all diagnosed my symptomatic problems as menopausal or degenerate spinal disc related, when the consultant disclosed my HIV status to my GP in order to get me an HRT prescription, I stopped accessing HIV healthcare in London. At that time my CD4 was 250 and my VL undetectable.

Because of the trouble Id encountered in London I decided to try to live without HIV or primary healthcare (my GP of 9 years standing removed me from her patients list when she learned of my HIV status).

By 2001 I was seriously ill. My concentration deteriorated; I talked gobbledegook and suffered awful hand and foot coordination problems and I had several blackouts. I couldnt drive safely so I retired early.

Eventually I decided to seek HIV healthcare in Birmingham. My CD4 had dropped to 200 but my VL was now almost undetectable.

Here the professional standard of HIV healthcare staff was luckily superior to anything I encountered during my last 2 years in London. Despite my non-detectible VL, which had governed the conduct of the London HIV specialists, I was referred to various Birmingham specialists; I had a brain scan (MRI) and was diagnosed with Leucodystrophy.

My question is, can I ask for a blood test to ascertain whether I have had Cryptococcal Meningitis at some point in my life? I suspect during seroconversion. I can find information about diagnosing meningitis but nothing about meningitis antibodies. I am seeking the detection of something like Hepatitis antibodies but for meningitis. When I was diagnosed HIV+ they also also found Hep A antibodies which probably originated in Africa.

Also, do you have an opinion on whether, had my documented dementia anxieties been explored and treated when I first voiced them in 1997, my current cognitive problems would have been less severe. I started Triziver last March but because I have no HIV support within a distance of a round trip of 144 Kilos I encountered severe adherence problems so I discontinued the medication 2 months ago.

Incidentally its no longer politically correct in UK to talk about HIV related dementia I have been told to call it HIV related neurological impairment or HIV related brain impairment. Some words are difficult to recall when suffering from memory problems.

Response from Dr. Horwath

The best treatment (or prevention) for HIV-associated dementia is highly active antiretroviral treatment (HAART). Recently, studies have shown that HAART also can improve milder forms of cognitive impairment that occur in some HIV+ patients who have low viral loads and CD4 counts > 250. Judging from your writing, your cognitive impairment, if any, is not severe. The implication for you is that you should return to antiretroviral treatment.

By the way, there is growing evidence that there are more effective regimens than Triziver alone. If you resume treatment, you would be wise to get expert advice on the most effective cocktails currently available.

As for Cryptococcal meningitis, if you had had meningitis, you would surely have known it. You would have been extremely ill, with high fever, headaches, and a variety of other serious symptoms. Additionally, spontaneous recovery from Crypto meningitis does not occur. In short, if you weren't diagnosed and treated, you did not have it.

HIV associated Dementia: Modified HIV dementia scale

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