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Almost dead from Long COVID! HELP!!!!!

Post-COVID Recovery & COVID-19 | Last Active: Apr 13, 2023 | Replies (61)
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@julesmango

Hi,
Yes UNC long Covid clinic and chronic fatigue specialist at Nova southeastern U, both recommended naps and tapering exercise, pace yourself. And all my other recommendations.

Friends were asking if I was tested for EBV. At first I didn’t even know what that was. I looked it up. Then realized Since I had Mono in college, which is caused by EBV!! I probably had it. EBV has been latent in my body for 34 years! Crazy. Until Covid reactivated it. Dec 2020.

Then asked for test, finally chronic fatigue specialist agreed to do them. EBV tests were positive!
They put me on Valacyclovir 500 mg twice a day.

Covid reactivated my EBV( I got from mono 34 years ago! ) And that is why I think I got Long Covid.

I have long Covid because I still have my my Covid symptoms for 23 months, fatigue, migraines, tinnitus, head congestion.

I have EBV antibodies which shows I had it. ( mono 34 yrs ago) . Right now I test negative for EBV virus but Covid symptoms are not going away. I think valacyclovir is helping VERY slowly, I went a year and half with no suggestions from Dr. Or explanation as to why I had long Covid, so if anything it brings me hope.
You have to be your own advocate I have learned.
Best wishes.

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Replies to "Hi, Yes UNC long Covid clinic and chronic fatigue specialist at Nova southeastern U, both recommended..."
ericy210 | @ericy210 | Nov 4, 2022

Thank you. Good stuff to ask my doctor about.

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clays23 | @clays23 | Apr 5, 2023

BINGO! Everything you said here resonates with me! I had mono 44 years ago. I absolutely have had to be my own advocate. I am waiting for my NP to get me in with an infectious disease doc to prescribe me Valtrex. She won't give me anything...feels uncomfortable and doesn't know enough about it. I am the one that asked for all the EBV antibody tests which were sky high 3 weeks ago. Not positive for current Mono though. Meanwhile I have found more help on here from reading other's stories and talking to friends/family with ME/CFS and chronic EBV diagnoses.

I believe my EBV was reactivated last March 2022 when I got Covid when I was under a lot of stress. (I think stress had a lot to do with it) My symptoms seem to be mild compared to many of these stories I am hearing! I had PEM (post-exertional malaise) and dizziness after exercise and just general fatigue all the time. While waiting to get into a specialist and ask for Valtex, I have started L-lysine (and some other stuff) and that seems to be making a world of difference in my fatigue in just a week! And maybe it's just time? No one knows.

Thanks for sharing your experience and insight.

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tdiamond | @tdiamond | Apr 11, 2023

All of the dormant things in my body came to fruition when I got Covid. I hadn’t had a asthma attack in over 30 yrs, but had three in last several months. Previously had sinus surgery and for years no problems. I had sinus surgery in 2022. Brain fog and mild cognitive impairment are new.

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