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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 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/
Replies to "@jeindc no problem! Hope you get this - I’ve found it kinda hard to keep track..."
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@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