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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
It’s hard to not be validated when you know something is going on with your body!
I think it’s hard being the forerunners for long covid as doctors don’t know what tests to do to accurately assess/diagnose. And even when they do, they are having to make things up as they go since it’s so new!
They are finding that reactivation of normally dormant illnesses are causing CNS to be attacked, etc. the autonomic nervous system gets altered and attacked causing ALL kinds of symptoms and issues.
I definitely recommend finding a chronic disease specialist who specializes in chronic fatigue syndromes and the like. They should be someone who will be testing for underlying deactivations of Lymes, Bartonella, EBV, CMV, chickenpox, etc. AND bacterial infections
Big Hugs to you going through this. It’s hard. I’m writing this on the couch lol.
some days it feels like there’s no end in sight. Then there are days where hope reigns supreme and I have 3 days of glimpsing normal…
I try to hold onto that if I have 3 days of better then it could happen even more. I take one day at a time and try to cheer for the good days, and hug myself for the down ones.
I do believe there are answers and we will find them soon 🙏🏻❤️
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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.