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← Return to Mestinon for Long Covid
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Yes! I posted this, but still have not been able to try Mestinon. I do think what most of us have is Autoimmune or Neuroautoimmune brought on from Covid. The vagus nerve is very involved though because covid directly attacks it. Someone was saying that covid completely depletes the brain of seritonin which needs to be there in order for the vagus nerve to function properly. I have been dealing with this for three years as well. The damage that Covid causes is almost like a Traumatic Brain Injury/concussion. I could barely do anything the first year including feed myself.I was an athlete running 10 miles a day before covid got me. I have noticed so many people that ended up with long covid were athletes/go getters.We just never stopped.I have been tested for MS, Myasthenia Gravis, Muscular Dystrophy, all Autoimmune Diseases, ALS, etc. I have alot of symptoms that mimic NeuroSjogrens, but even with several positive ANA's and a high speckled pattern the Rhuematologists say it is not Autoimmune. I think that it is Autoimmune, but because Covid brought it on it is not presenting like it should with the testing.
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I believe it mimics other autoimmune disorders as well. When I first got sick, my anti-nuclear antigen test was flagged. Labs also showed Epstein Barr virus was reactivated as well as a test for Rheumatoid arthritis. Parvo virus was also reactivated, which is weird, although I did work for a rescue agency and two of the puppies had parvo, so I was exposed to it in 2012. Another odd piece of my blood work showed by B12 as normal and yet my folate was off the charts, which is weird as usually folate is high is B12 is low and when B12 is too high, folate is low. The RA doctor was really hateful when I told her that I believed it to be Long COVID. Subsequent tests do not show any of this but I still experience fatigue, tinnitus post exertion malaise, stomach issues, brain fog and cognitive issue, wake up feeling "poisoned" and that is just the physical. That is the only way I can describe it to those who do not understand. Some days are better than others. I am sorry we all got this. I also used to run and work out. I was really healthy. Now, mentally and emotionally I struggle. I am a recovering alcoholic of 7 years. I used to be so active and around friends. Now, I am isolated. I did start taking Cymbalta, which has helped with some of the hopelessness. I also take Vyvanse for ADHD and it does help with the fatigue some, Gabapentin for mood and pain. I attended a Long COVID support group via Zoom, for the first time. It was helpful to have other people that can relate, however, I found that I was angry when the group ended. Angry that my life and those other people's lives have essentially blown up. I can say that I am grateful as this could be worse and may get worse. My primary care doctor wants to do a CT scan on me, but I honestly am not sure I want to know if there are other issues, although I will probably go ahead. If anyone is interested, the support group is through HeyPeers. I will continue to look. I have thought about starting my own. Any suggestions? Thank you for posting. Thanks to everyone that posts here.