@jeindc Hello JE,

Thank you for sharing all this and I’m so sorry you have developed LC in spite of all of the good precautions you took.

I’ll throw an idea out to ponder. I’m 74 and have had ME/CFS for 40 years. You probably know that ME/CFS and LC are very similar. Most people with ME initially had a virus, and many, myself included, tested positive for the Epstein Barr virus in the beginning . In recent years the EBV virus has come back to the forefront as a culprit not only ME/CFS but also many other neurological diseases- such as MS and others.

More recently, some researchers are finding that a reactivated EBV may also be the key to some Long Covid cases . I’ve been following all this research for the 40 years I’ve been sick and am convinced that the EBV virus (which most of the population has, though it usually remains dormant) could be found to be the link to unlocking many of these mysteries.

Many people with Long Covid had relatively “mild cases”, which begs the question, why?

When I got sick with ME/CFS I tested positive for an acute EBV infection. At the time there were several outbreaks of a mysterious viral illness in local communities involving several hundred people where a certain number of people developed ME/CFS. They never discovered what the initial virus was that triggered it in some people, though many of them did have reactivated EBV infections.

Why some people would get ME/CFS or LC and others not remains a mystery since most people have already been exposed to EBV. But it could be that genetics play a role. And I also have autoimmune thyroid disease and polyneuropathy, which tend to have a genetic component. My neurologist ( from Johns Hopkin) believes that my ME/CFS and neuropathy are autoimmune.

Just curious, have you been tested for and EBV reactivation? Here’s an article about the link between EBV and LC you might find interesting.

Sorry to ramble so long. I understand how frustrating it is trying to solve these mysteries. Wishing you all the best and improved health.
https://www.tandfonline.com/doi/full/10.1080/22221751.2025.2552712