Connect
If you were fully vaxed + TOOK paxlovid at start, still LC symptoms?
Trying to find out if those who tested positive, were fully vaccinated at the time COVID was contracted, TOOK paxlovid, and long/post COVID still "attacked."
Why I ask: COVID from spouse who brought home from work in late March/early April 2023. Paxlovid prescribed for him and, by our PCP, for me, believing I'd test positive within days. Two days later, I did test positive; had horrible reaction - best way to describe was as if I were "on speed" (which I've never been but heart racing, couldn't rest at all, felt like my body was going 100 mph just sitting) and our doc said to stop it immediately.
Symptoms had begun. I do not think it was an allergic reaction to Paxlovid since the symptoms have increased over the nearly 3 years, with extreme fatigue, muscle and bone pain added to the hearing loss, edema (lympha- or lipe- or both - no one I've seen agrees), mouth rash, heel peeling, feeling cold all the time, and most recently frightening brain fog. (At nearly 79, no history of dementia in family going back at least 3 generations, they want to make sure it's not the start of dementia which, among all the other symptoms, scares me most - I worked until almost 78 and had to quit bec of symptoms and no energy but lots of pain and often lost voice.)
So if you were fully vaxed + TOOK paxlovid at the start of a positive COVID test, did you still get symptoms of LC?
Trying to rule out and in a 3 year trigger from paxlovid's one dose before stopped bec of allergic reaction.
Thanks and for prob writing too much. This is the only place where others understand. When I had cancer, that was easy for people to understand why I had to take a 'time out'. Saying "long COVID" esp when I can, with some makeup force a decent appearance on Zoom, makes everyone skeptical of my being sick!
To us all .. answers and help in 2026 with the new NIH funded study. (It appears that most of it will be conducted at Stanford. If you're in that area look into it.)
JE
Like
Helpful
HugInterested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
Connect
Genetics does factor in to some diseases and their severity, as does viral load, age, pre-existing conditions, and all. My celiac disease 16 years ago was triggered by catching H1N1 (my brother was lousy at gift giving), which also requires having the HLA DQ2 or DQ8 (me) gene. My reactive arthritis (used to be called Reiters syndrom until they realized he was a Nazi doctor and his patients...). The arthritis has been dormant for 35 years, but it was triggered by a cheating boyfriend (chlamydia...other bacteria can also kick it in); that gene is HLA B27. HLA stands for human leucocyte antigen. The people with a genetic immunity to the Black Plague (ERAP2 gene) were I think also immune to HIV, but the tradeoff is more likely to get autoimmune diseases. https://www.nature.com/articles/s41586-022-05349-x
-
Like -
Helpful -
Hug
4 ReactionsWhat is CFS? I have a Doc appt soon. If I ask the doc to put me on Naltrexone, because I’m in so much pain with Arthritis, but seems to have increased with LONG COVID.
-
Like -
Helpful -
Hug
1 Reaction@kyrazpollet
CFS = Chronic Fatigue Syndrome also known in the U.K. and Canada, etc. as ME or Myalgic Encephalomyelitis.
It has much in common with LC as it typically follows the lifting of an acute viral infection, and presents with a variety of symptoms (not necessarily just fatigue), lasting many months or even years.
-
Like -
Helpful -
Hug
5 Reactions@sandguy I’m sure sorry you’ve got LC now. Your story is so interesting because I knew a couple of people who also got the “yuppie flu” followed by CFS in the 80’s when I did, but who like you, were also fortunate to fully recover after a couple of years.
I also believe LC is likely the same as ME/CFS. I also tested positive for HHV6 active antibodies years later - I don’t think it was known yet in the 80’s.
Holding good thoughts for you to make a full recovery again.
-
Like -
Helpful -
Hug
2 Reactions@sandguy that is a real eye opener! Thank you for explanation!
-
Like -
Helpful -
Hug
1 Reaction@sandguy that is do interest! Thanks for such good info!
@kyrazpollet CFS is a part of Long COVID, at least in my experience with this damn virus. I am on Naltrexone and although studies suggest a low dose, I am on 50 mg. I am also a recovering alcoholic/addict of 8 years. Naltrexone and other medications help as they target the dopamine receptors in the brain and as an addict, my brain (and others with addiction in their history) benefit from the Naltrexone. I did not need it the first 5 years of being sober, but when I got LC in 2022, I felt awful physically and started becoming hopeless. No one had any answers and still there are not many answers, so it seems the doctors treat the symptoms. I know that Epstein Barr Virus plays a role in this as well as inflammation. This virus mimics so many other autoimmune diseases that it is difficult to treat I guess. I want to see if an antiviral will help, but now with no insurance, money is tight and I worry about side effects as well. There are many research studies that point to low dose naltrexone helping. I had to get it compounded when I first tried it back in 2023. Some people say it helps. I know that my dose helps me. I also take Gabapentin (neurontin), Vyvanse (for ADHD but it helps with some of the fatigue symptoms as well), turmeric, psyllium husks, vitamin B12 (a shot I give myself once a month) and I have had to cut out salt, sugar and enriched flour. I drink only water, except for having a cup of coffee each morning. I play games in the morning, usually puzzle games to help get my brain going. I know how frustrating the brain fog can be. It is like being "high" and it is my short term memory as well as a loss for a specific word sometimes. Thank you for sharing on here and hang in there, just for today.
-
Like -
Helpful -
Hug
5 Reactions@diverdown1 I’ve been on low dose Naltrexone for 10 years for pain related to ME/CFS, fibromyalgia, osteoarthritis, and severe Polyneuropathy. It helps with mood too. Pain wise, so far I haven’t needed any other pain medication aside from an occasional Alieve. My neurologist prescribed Gabapentin for the neuropathy but I never picked it up.
My ME/CFS started with an Epstein Barr virus infection (40 years ago). I have also tested positive for HHV6. But haven’t had Covid (yet). I was on antivirals (valcyclovir and famcyclovir) for about 3 years and they did nothing to help my CFS. They made me more tired and caused depression.
I do puzzles in the morning too to help with brain function. Pretty much addicted to computer scrabble.
Wishing you all the best.
@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.
-
Like -
Helpful -
Hug
2 ReactionsMy spouse brought home Covid in August 2025 - the first infection for anyone in my household . We all had every available Covid vaccine. I was diagnosed the day after my symptoms started, and I started Paxlovid that night. I had unpleasant side effects – nausea and a horrible taste in my mouth – but I finished the prescription.
My long Covid symptoms are limited to fatigue, brain fog, ear pressure, and congestion. Based on what I have read, I suspect I was susceptible because I already had many signs of systemic inflammation before getting sick.
Hope this is helpful.