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A myHIVteam Member asked a question 💭
Edmore, MI

In some cases, HIV can bypass the barrier that encases the brain and cerebrospinal fluid which can contribute to brain inflammation and neurocognitive symptoms.

Read more here:
https://www.aidsmap.com/news/oct-2023/hiv-brain...

December 24, 2023
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Answer Summary

Members shared deeply personal experiences of HIV affecting their brain and nervous system, with several describing severe conditions like... Read more

Members shared deeply personal experiences of HIV affecting their brain and nervous system, with several describing severe conditions like ataxia, progressive multifocal leukoencephalopathy (PML) from JC virus, and HIV encephalopathy that led to paralysis, cognitive decline, wheelchair use, and in one tragic case, a friend's vegetative state. Many emphasized the critical importance of starting antiretroviral therapy immediately after diagnosis to prevent the virus from crossing into the brain and causing irreversible neurological damage, with one member crediting early treatment in 1996 for preventing a permanent vegetative state despite lasting memory loss. A recurring theme was the tension between scientific uncertainty about HIV's exact role in brain inflammation and the lived reality of devastating neurological symptoms, alongside exhaustion from years of invasive tests and treatments, yet a determined resilience to keep helping others and living fully.

A myHIVteam Member

HIV Encethapolothy was my first Aids defining illness back in March 1996. Its diagnosed with an MRI Brain Scan using contrast..This showed extensive Brain damage by the HIV virus and as a result of this, I was put on 1000mg of AZT and Didanosine(DDI) twice daily. Today I remain with short term memory loss, however my Doctor said I would have been in permanent vegatative state, if I hadnt started treatment back in March 1996. Today, if you are taking your medication as soon as your diagnosed, and become undetectable , then you will not be at risk of HIV dementia. Thats why its so important to start treatment early, as HIV crosses into the Brain fairly quickly after being infected. Once you have HIV Dementia/Encephalopathy its much harder to treat.

December 27, 2023 (edited)
A myHIVteam Member

@A myHIVteam Member & @A myHIVteam Member & @A myHIVteam Member. WOW, what a fascinating and horrifying consequence of an immune system crippled by HIV infection! JC virus, and the disease it causes (PML) were new to me. Upwards of 90% of the human population worldwide carries the virus. It can be used to identify individuals and the groups of people to which they belong. Only in severe cases of immune compromise does it produce a wide array of neurological symptoms. It is described as a rapid form of MS to which upwards of 50% of people don't survive. A normally harmless virus that infects nearly everyone becomes a lethal monster in people with immune systems wrecked by HIV. It could possibly play a part in people whose neurological problems were never linked to a specific disease. Incredible! Thanks.

PS: Wikipedia has info on both JC virus and PML.

December 26, 2023 (edited)
A myHIVteam Member

I work in the only level one trauma center in 6 counties and have been in the medical field since 1979. Though I deal with pain and disability every second of every day I work to help others and I will never regret a single minute.

December 25, 2023
A myHIVteam Member

Correlation however isn't causation. The fact that HIV wasn't always found in brain tissues in affected individuals suggests considerable more research is needed. We're in the ballpark but still learning it appears.

I did not see reference to treatment. So it seems excessive to endure a lumbar puncture for a "maybe" with no clear causation nor treatment.

December 24, 2023
A myHIVteam Member

Definitely a reason to get tested, and get an HIV infection controlled with AVT. Many problems associated with HIV come from advanced disease where people are unaware of their infection. HIV has slipped out of the limelight, and people mistakenly think it is no longer a worry. Awareness is crucial to mitigation.

PS: If you control the virus, your immune system will handle the rest.

December 24, 2023 (edited)

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