My late partner had HIV and was under an HIV specialist’s regular care. The doctor said his viral load was near zero or at times undetectable. But on New Year’s Day 2004 he suddenly started exhibiting apparent dementia very rapidly. The next morning he awoke completely disoriented and barely able to speak, so I took him to the hospital, where he stayed for a week for observation, tests and diagnosis.
The scans revealed some kind of mid-brain infection that they couldn’t identify. They sent his results to the Mayo Clinic in Rochester, Minnesota, and nearly a week later the results came back: PML. For Progressive Multifocal Leukoencephalopathy, with progressive meaning it can’t be halted, multifocal meaning it can reside in different areas and also migrate to other locales during the course of the disease to disrupt other functions, and leukoencephalopathy meaning a disease of the white matter of the brain.
It’s always 100% fatal, usually in a matter of weeks, but with rare cases of spontaneous remission lasting for up to 3 years. It’s caused by the JC virus, named for the initials of the first patient in whom the virus was initially identified. Most often a consequence of a compromised immune system, as with HIV. Studies have shown the JC virus is present in approx. 70% of the US adult population at all times. Only our healthy immune systems keep it at bay.
And having HIV, even with low viral loads, makes a person susceptible to contracting PML. Contributing conditions, such as nutrition, other illnesses, etc, have not been identified to my knowledge. But I’ve heard from HIV medical specialists that PML was likely responsible for many of the deaths early in the first wave of the AIDS plague, but was as yet undiscovered & undiagnosed in those cases. My husband’s own first partner died with symptoms identical to my first partner’s, but his death was merely diagnosed in the early 1990s as due to AIDS.
PML still exists today, and being difficult to diagnose with common methods I understand it still gets missed or misdiagnosed. But I believe it continues to remain fatal. Having an undetectable viral load appears to help, but the JC virus is always waiting in the wings for a majority of adults, from the time of initial HIV exposure & detection, plus during any episodes of a viral spike. Once JC crosses the blood-brain barrier into the brain’s white matter then it’s irreversible & incurable. If there is now a cure for the JC virus and PML I would like to know of it.
My partner, BTW, did die 6 weeks later, as the Mayo Clinic expected. But knowing the inevitable outcome, I could make his final arrangements beforehand, and along with some of his friends be with him when it came, my love having gone into a coma about 24 hours earlier.