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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
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@jeindc no problem! Hope you get this - I’ve found it kinda hard to keep track of comments on here.
Anyway, how frustrating that your ID doc ditched you like that! Those of us with long term ME/CFS totally understand the frustration with doctors who dismiss us. I sure hope you can find a more sympathetic and knowledgeable doctor. There’s not much that can be done for this in terms of a cure, but it’s at least comforting to have a physician who tries to understand and provide treatments to help some of the with the various symptoms. Have you considered low dose Naltrexone?
I’m with you on hormones playing a big role too. With ME/CFS the majority are women and many of us fell ill in our late 30’s. I was 36 and in perimenopause. Had a hysterectomy at 39. I’ve been on Estradiol patches for 20 years. I went off for 2 years and was totally miserable! So I’ll never go off again! You probably know of the big nurses study back in the day which scared drs away from HRTS that proved to be mostly bogus.
Have you seen the recent one taken from the records of 10 million Medicare patients over age 65 showing that HRT actually shows a preventative effect for many conditions. Here’s that study.
https://pubmed.ncbi.nlm.nih.gov/38595196/
Yes, fully vaxxed, Paxlovid right away and felt unwell for 3 yrs. Then a COVID booster sent me to ER. POTS severe symptoms now since October. Completely disabled. Extremely cold always, all autonomic functions disrupted. Tachycardia, breathless, weak, dizzy, brain fog, blood pressure very erratic. No help from medical visits nor ER twice when symptoms felt like a heart attack.
Without intervention, this is a terminal state. I cannot expert in any way without symptoms, so eventually not moving will lead to really not moving.
I'm a Death Midwife with no fear of death, and this is beginning to feel worse than death.