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If you were fully vaxed + TOOK paxlovid at start, still LC symptoms?
Post-COVID Recovery & COVID-19 | Last Active: Jan 30 10:57am | Replies (24)Comment receiving replies
@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
Replies to "@jeindc Hello JE, Thank you for sharing all this and I’m so sorry you have developed..."
@db72
Sue, I'm sorry to hear about the long-term travails you've had over the decades!
I'm just a few years younger than you, and likewise came down with the "yuppie flu" back then. Fortunately, it lifted of its own accord after about two years. It started with a fairly normal-seeming flu, but just left that fatigue. I spent a lot of time at a university. library researching Medline, etc. at that time. The Epstein Barr theory did come into vogue then, but I don't believe it's ever been truly confirmed. In fact, it seems as though multiple viruses, such CMV, EBV, and HHV-6, are often observed to be reactivated with this syndrome. I do believe that CFS/ME and LC are the same phenomenon.
My own hunch has been that this is a failure of some peoples' immune system--likely genetically determined as you referenced--such that it stays "stuck" in a heightened state that leads to the array of symptoms we experience. I'm not convinced that any of these viruses (Covid-19 included) are themselves the sole "culprit" for our long-term reactions.
Now that I've had LC for a year and a half, it feels much the same as the CFS I had back then, fortunately confined to that sole symptom.
I "plan" for it to lift in the coming summer! Meanwhile I'm just treating it symptomatically with prescribed amphetamines, with uneven results thus far.
It's dismaying that so little progress has been made on this/these disease(s) after DECADES!
Maybe 2026 will be THE year, no?
@db72 - thank you and apologies for taking so long to respond.
Interestingly, in one series of blood tests it showed odd EBV numbers - as I HAD it then and the other as if I HAD HAD it some time ago. Alas, the doc who ordered the testing (an ID specialist at a local teaching hospital who saw me initially and didn't want to say it was LC but as symptoms kept coming had no real choice .. and then, dropped me. Literally canceled a made-appt. w/ no explanation. I'm guessing they can do nothing and seeing me was just too much for her to do to even ask questions!)
In another recent study, it shows hormones may be an issue. I've been on HRT for "ever" - perimenopause in my early 30s, can't remember when menopause - much longer than 40 years ago - and severe symptoms. Was on HRT, then off after studies showed concerns but my menopause symptoms continued and were awful. Try getting up in front of a crowd to speak and BOOM! flop sweats! My PCP doesn't want to take me off til I see an endocrinologist -- first appt. I could get is April 2. (See theory below about timing.)
I so appreciate the link to the article and plan to send to my PCP and see if NOW we can figure this out or at least explain the EBV numbers.
Your post wasn't a ramble - it was perfect. And I'm trying to see another ID specialist affiliated w/ Hopkins too - again, see theory.
To us all .. this really stinks. Today is the first day in 'forever' I put real clothes (v. turtleneck and flannel jammies) on bec I had a zoom meeting!
JE
THEORY about appts: with the US Congress and Senate unable to reach a budget decision, caught up in that is the extension of the televisit coverage by Medicare. Instituted during worst of COVID, it has been an incredible help to NOT go into a doc's office just to check in. The time and cost for patients and docs is silly just to do nothing more than look you in the eye. I think that tho' it was extended for Dec. and Jan. , unless they act, people have made in-person visits with many docs to ensure 'scripts can be refilled. Thus, getting an appt. now for a first time visit for an exam is 5 or so months out. By then, one of my symptoms will be uncontrollable.
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@db72 Thank you for the article. Also having autoimmune thyroid disease and re-activated chronic EBV, would you be willing to share your experience with treatments?