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I feel like I’m slowly dying and nobody is helping
Post-COVID Recovery & COVID-19 | Last Active: May 26 12:41pm | Replies (52)Comment receiving replies
Thankyou so much!It is hard.I think if the Doctors knew how to help they would.My symptoms are just so bizarre.At the very beginning of my illness I had the ER Doctor check for Epstein Barr titters and sure enough they were sky high.I knew that had to be reactivated because before I was diagnosed with Hashimito's that is all one of the Best Doctors at Hopkins could find.Elevated Epstein Bar titters.I think one of the reasons I got hit so hard is because I had years of severe periods and was anemic, worked in healthcare during the pandemic,already had an autoimmune disease and was going through perimenopause.I don't even think I would have had a chance to fight the virus.Even though I was still pretty healthy I know my gut was not good because of the anemia,stress,etc.I really think that covid is just hanging out in my body now because I basically feel like I an being poisoned everyday.I am going to try to find a chronic fatigue specialist .I just don't really think anyone at Hopkins will be able to help.I need someone that looks outside the box.I have heard a few specialists mention to me to get another vaccine to see if that turns things around.I have lost sensation in the trunk of my body which I know had to have come on from covid.I just dont know if another vaccine could help that or not.I hope you are 100 percent soon.I am praying for you and others that are going through this nightmare.
Replies to "Thankyou so much!It is hard.I think if the Doctors knew how to help they would.My symptoms..."
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Correction to my post I meant to say RE activation not deactivation. But I think you knew that 😉
Gosh, that’s a lot you’re going through with the Hashimoto’s and anemia underlying things makes it all a lot harder!
I felt like the COVID virus was just hanging out too - wreaking havoc on my body. But my ID doc says they haven’t found whole viral particles in the body so they are more prone to think reactivation of things like EBV are causing long covid.
Did your doc give you antivirals for your elevated EBV? My doc is trying to get me on Valacyclovir for mine at 3g/day. I also had elevated VZV, basically elevated herpes viruses. I’m trying to titrate up as I’m super sensitive to meds and antivirals are pretty hard on my gut/body.
She mentioned that the main treatment for LC is to treat these reactivation infections. I also took Rifaximin which helped a lot! Not just for my gut but other symptoms of hives, heart palpitations, weakness… but it only helped for about 3 weeks now back to the drawing board.
I do think it’s a clue though! I think beyond my EBV, VZV reactivating I probably have bacterial infections too causing my poor body to have to fight so many things at once!
The times I feel better are when I’ve taken something that targets certain infections. But with the gut bacteria it just grows back after a few weeks. So makes sense I feel worse again. I’m going to see my ID doc this week and see if I can do a cycle of Rifaximin per a randomized control trial I read that cycled 7days of Rifaximin at 550mg tid every 4 weeks x 3 months. The findings showed improved symptoms that lasted a year +, improved beneficial flora and decreased bad flora like c.diff. I feel that’s promising.
I like my doc, she thinks outside the box. And you’re right! You definitely NEED one of those! I’d recommend google searching for docs that treat Lyme’s disease, Bartonella and reactivation of EBV. Before finding my ID doc, I spent months researching and trying to find someone!
My doc only sees pts in California so I’m thinking if you’re seeing docs at Hopkins, then you’re not in California. But here’s a list of docs you could possibly see via telehealth:
Dr. Todd Madeira, ND; https://drmyhill.co.uk/wiki/Valacyclovir_in_the_treatment_of_post_viral_fatigue_syndrome; Dr. Marin Lerner is the forerunner for treatment protocol for CFS, post viral conditions.
Maybe these are helpful in your search?
Big Hugs 🤗