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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/
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1 ReactionYes, 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.
@db72 - yes, it took me this long to respond. Each day is such a dumb challenge and I keep making commitments to "do things" - at least at the computer which is still too far and too exhausting to get to and do.
1. I was supposed to have an in-person visit with a new ID doc on 1/30. We're going to do televisit and then schedule in-person. Our streets are still snow covered and with an old car, we fear getting stuck going to or coming home from the appointment. It's in a hospital in a residential n'hood where the streets are only marginally passable. At least he's seeing me virtually, understanding the issue. THAT alone is a better sign, right?
2. HRT - ditto almost entirely except no hysterectomy: perimenopause in my 30s, on HRT, saw study and off and had horrible symptoms again, and back on since - so 40 some years on. Unless the new studies about Long COVID show there is a huge relief if I get off, I'll stay on. Endo appt. not til April and by then hope to have the ID doc do blood work to check more. The "amusing" part: my breasts have changed sizes dramatically. (If I wrote that before I didn't check or remember.) It seemed to happen overnight and of course I doubt that. I can't wear bras because neither side works. I thought of buying two, cutting and stitching together! I don't sew well enough. And my hair, once thick, is so thin that I'm considering a hair topper. My confidence is gone.
3. Yes too to the study about HRT. Like so much, it's not well-researched - women, after all! - and at some point it will be said we're all going to die from it. For now and until told .....
And the drug you and others have mentioned, my docs have said because of other meds, not a good fit.
So... hopefully tomorrow's televisit will give me hope of being heard and seen.
To us all .. I'd never have though this virus would wreak havoc with our lives. I try to warn others who just don't want to know or hear. They won't vax or mask and even tho I did both as did my spouse, just a brief time eating with others was enough to make us both sick and me sick now for ever I imagine.
JE
Hello JE… Just to help with your initial question - I am a 47 yo male, my wife is a 50 yo female.
We have both had confirmed covid twice, with possible infection in February 2020, before the world was really aware of what was going on.
We both took Paxlovid after confirmed infections (hospital tests) in late July 2023. We both fought it out at home and it took us about a month to be up on our feet.
Long story longer - my wife has symptoms (gastro/nasal, sleep issues, etc. - but has also been going through perimenopause and menopause while dealing with it. Currently, she still has symptoms, but fights through, and is able to work at her normal level, even though it is more of a fight than it was pre-infection.
Unfortunately for me, I have not been able to work in an in-person capacity since 2020. My symptoms get worse after every infection, and it takes me about a year and a half to get back to any decent type of life. I have the same issues as my wife, but they are more severe, and the lethargy and stomach issues I have are worse. As such, I have not been able to do anything but work remotely, and my employer has let me go as of November of last year.
I pray for you and your family - I just wanted to add a data point to your post.
I saw that you mentioned the Stanford study. The one I am really hopeful for is the one being conducted by UC Davis and UCSF where they are using whole body PET-scanning technology and a radioactive tracer to try and see if virus is actually laying dormant in reservoirs of the body for those with long-covid, etc.