Connect
← Return to If you were fully vaxed + TOOK paxlovid at start, still LC symptoms?
Discussion
If you were fully vaxed + TOOK paxlovid at start, still LC symptoms?
Post-COVID Recovery & COVID-19 | Last Active: 5 days ago | Replies (22)Comment receiving replies
@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.
Replies to "@db72 - thank you and apologies for taking so long to respond. Interestingly, in one series..."
Connect
@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/