1. < Post-COVID Recovery & COVID-19

Mestinon for Long Covid

Posted by j77 @j77, Mar 5, 2024

Has anyone taken Mestinon to help with Long Covid?I was doing some research and it looks like it stimulates the vagus nerve which covid attacks.I have been ill for over 2 years which I believe to be Long covid.No Doctor can figure out what is wrong.Trouble swallowing,walking,slow talking,loss of strength in face and body.They have checked for just about everything and not found much.I feel like alot of these symptoms mimic Myasthenia Gravis which can be brought on by a virus,stress,etc.Basically anything that weakens your immune system.I am just wondering if this drug could possibly help get the signals back up and running in the body when the vagus nerve is damaged by covid.I read one longcovid doctor was trying it out,but I would be interested to hear of anyone that has tried it.

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lkirnbauer | @lkirnbauer | Feb 24 7:56am
In reply to @j77 "Thankyou so much for responding!That is wonderful that it is helping and you are finally feeling..." + (show)
@j77

Thankyou so much for responding!That is wonderful that it is helping and you are finally feeling better.I am desperate at this point and trying to see if anything would help.My whole body was attacked and the muscle weakness is getting worse.I try to explain to the doctors that I have lost the strength in my diaphram/sternum area that normally pushes the belly down and they just don't understand.I also have heart issues along with my other physical symptoms.I notice that if I hear a loud noise or anything like that my heart goes crazy.Almost like it can't handle it.I never had an issue like that until this illness came on.I really believe it is the vagus nerve damage that was probably brought on from covid.I have tried tens machines,PT,chiropractor,acupuncturist,but nothing has helped.

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So sorry you’re suffering. I had Covid in December of 2022 and lost my taste and smell and still don’t have it back (February 2025). I keep getting told it’s Long Covid, but no cure in site. I’ve had 7 Stellate Ganglion Injections, nothing helps. Doctors can fix cancer, hearts and many other debilitating diseases, but they can’t fix this? I find it odd!

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repl | @repl | 2 days ago
In reply to @mvshellydr "Hi Short answer: the Mestinon was a miracle for me. I started low last summer- 8..." + (show)
@mvshellydr

Hi
Short answer: the Mestinon was a miracle for me. I started low last summer- 8 mo ago. I now take 60 am and 30 pm with no side effects.
I had a flare last month after a family crisis and added Nicotine patch 7 mg.

I am 18 mo with Long Covid. Like others I’ve tried PT, supplements, acupuncture , etc.

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Hi!
It’s great to hear of potential new meds that could help!
My doctor prescribed Mestinon for me but I’ve been too scared to take it due to MCAS and I seem to react to almost everything.

But I’m going to give it a try tomorrow.
I have a couple of questions:
How long did it take to notice changes?

And what were the first changes noticed?

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repl | @repl | 2 days ago
In reply to @welchllb "I am taking Mestinon. After 3+ years of suffering with shortness of breath, dizziness, Post Exertional..." + (show)
@welchllb

I am taking Mestinon. After 3+ years of suffering with shortness of breath, dizziness, Post Exertional Malaise, etc, I was diagnosed with POTS. The diagnosis was made as a result of a tilt table test. I take 1/2 tablet of Pyridostigmine (generic Mestinon) twice a day. My neurologist says that I will be taking it for the rest of my life. I have very few side effects. I got my life back and am now walking vigorously, playing golf, participating in aerobic dancing, etc. Once in awhile, after an especially busy day, I feel the need to take a break - get short of breath, dizzy, etc. My doctor says I still need to listen to my body. I continue to suffer with migraine headaches, but not everyday, and GI problems are present. I have had migraines on and off since adolescence. I, too, researched the drug and understand that it helps with acetylcholine transmission between nerves. In any case, I call it my wonder drug. Before I met my neurologist and received a fresh look at my Long Covid, I had settled into thinking that I would always be a less active person than before Covid. Good luck and if you try Mestinon, let me know how it goes.

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Hi!
It’s so good to hear success stories, gives hope!

Would you be willing to share how long it took to notice changes and what they were?

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diverdown1 | @diverdown1 | 2 days ago

Please keep this posted regarding this drug. The Vagas nerve is important and I believe this is an autoimmune disease we are dealing with as I have had so many symptoms of other autoimmune diseases since I got Long COVID 3 years ago. You may be onto something important!!!!

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1 reply
j77 | @j77 | 2 days ago
In reply to @diverdown1 "Please keep this posted regarding this drug. The Vagas nerve is important and I believe this..." + (show)
@diverdown1

Please keep this posted regarding this drug. The Vagas nerve is important and I believe this is an autoimmune disease we are dealing with as I have had so many symptoms of other autoimmune diseases since I got Long COVID 3 years ago. You may be onto something important!!!!

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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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1 reply
diverdown1 | @diverdown1 | 1 day ago
In reply to @j77 "Yes! I posted this, but still have not been able to try Mestinon. I do think..." + (show)
@j77

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.

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