Mestinon for Long Covid

I can relate to your symptoms! I too had full work ups for Cushings, thyroid, etc. until finally Long Covid was discovered.

I had gained and swelled 40 pounds of weight in 3 months with severe heart palpitations, temperature regulation issues, brain fog (difficulty following conversations), bed bound for a year, and housebound for another year. MCAS and gut dysbiosis were also toppers. (Be super careful about exercising… exercising and trying to get back to sports got me into this mess. There’s only thing that has helped since this crazy crash happened to me, is rest, rest, rest. Then lots of trials of ALL kinds of medications and supplements. I first got Covid end of 2019 in Europe but never this bad until I started exercising a lot 2 years ago. My world came to a complete halt… but Mestinon has given me hope!)

I can say I’ve just tried Pyridostigmine (Mestinon) and it helps! I have to take a SUPER low dose (7-10mg) and titrate up from there due to being incredibly sensitive to drugs and supplements (thanks MCAS). But it’s like one drug out of many that I don’t react to… and it helps!!
Even at this low dose!

My swelling is even going down some, and my energy is better. I’m only taking 1x/day rn and on day 5.

I’m going to add OAA next to see if this will also improve my muscle weakness.

There’s a test for LC that measures if you have the spike protein persisting in non classical monocytes. If you still have this then it can be wreaking havoc on your whole system and I believe that it’s the root cause of vagus dysfunction and dysautonomia.

I’m hoping to get on the treatment protocol of Atorvastatin/Maravoric to clear the spike proteins that I’ve tested positive for. So I’m trying to build up my mitochondria (Mestinon and OAA) as much as possible prior to starting statins.

This drug has given me lots of hope for a life again 🙏🏻🙏🏻
I just hope it lasts! (I’ve had so many fleeting weeks of feeling better only to have it crash again). Hope this one can be lasting!

Thankyou for responding! I am sorry you are going through all of this as well. The exercising is definitely what definitely made this severe for me too. I have noticed so many athletes have long covid. I realize that I never rested and now I am forced to because of this nightmare.I had a couple of Long Covid tests that came back negative, but many specialists I have seen told me I can still have it even with the tests not showing it. I know Long Covid is definitely involved. I have never in my life going through anything like I did that first year. I honestly did not think I would make it. I am such a strong person too, but this virus attacks absolutely everything. It even attacked my throat muscles so I waa unable to eat. I have severe Vagus nerve issues, but some have improved. I could barely swallow, cough, sneeze, hiccup, yawn or go to the bathroom for a year. Those functions came back, but I still can't throwup even if I needed to and have lack of gag reflex. I think is is that that signals from the brain to the body are still being blocked. I think the virus is still lingering in my gut.I am also going through perimenopause and after many ultrasounds they found I have Adenomyosis so I probably have Endemetrosis too. So that just adds to all of this mess. I had one slightly abnormal EMG and it had a list of possibilities and mitochondrial disease was one of them probably brought on by covid. I am grateful I can get out of bed after being bed bound for a year, but my walking is still not normal at all.It looks like I have the worse case of Scoliosis or Anklosing Spondylitis. I am thinking alot of it had to do with the weakness in my torso and stiff neck being pushed forward. The numbness in my torso I am thinking could possibly be Small Fiber Neuropathy. I have the weakness in my hands,wrists and fingers and feet, toes and ankles too. I am going to have to convince my next Neurologist to let me try Mestinon. Did you happen to get insulin resistance too after covid? I don't have diabetes, but insulin resistance now which I never had in my life.Can I ask you what supplements helped you at all?

Dang, you’re going through a lot too!

Have you done the Radiance Diagnostics test that tests for non classical Monocytes? All my other Covid tests were negative but this one is specific for LC and most doctors don’t know about it. Here’s a link: https://theradiancediagnostics.com/order-test/covid-long-haulers-s1-immune-subset-panel/

The spike protein is the one my infectious disease specialist recommends for being most accurate. The cytokine panel isn’t as accurate. I go to Center for Complex Diseases and they know their stuff there.

Things that have helped me are definitely Mestinon (currently). But I was also tested for reactivations of ENV, CMV, VZV. I had some reactivations happening at first but those calmed down on their own.

However, I did take Paxlovid for 6 months (off label) and this really moved the needle for me. My doctor thinks it was the ritonavir that was most helpful.

I also have severe gut dysbiosis and have MCAS and just tons of swelling that’s interfering with everything and muscle twitches. And my eyes get so blurry it’s hard to see.

But when I take antibiotics like doxycycline at 100mg, or Rifaximin, then these have also moved the needle for me.

Now taking Mestinon which I’ve only done for 5 days now, seems to also be moving the needle.

There’s a LC treatment protocol by Dr Bruce Patterson who is a virologist out of Stanford. He’s a ME/CFS, LC, chronic illness specialist and researcher. He’s the one who found the Radiance Diagnostics test to test for the spike proteins in non classical monocytes (all other tests do not test for these and will come back negative for spike proteins, mine did).
However this test is specifically for LC and others aren’t.

His protocol is a treatment of Maraviroc/Atorvastatin to clear the spike proteins which in turn address the whole cascade of LC problems.

You can schedule a video with him and your doctor after you’ve taken your test to review the results and discuss treatment.

For me, I’m not able to tolerate the Maraviroc due to my MCAS reacting to it, and my muscles are still weak to try statins yet. So I’m building up my mitochondrial dysfunction by supporting my ANS with first Mestinon, then adding OAA, and then will also try taking choline supplement. I’m going to do these for several weeks prior to starting the statin (Atorvastatin).

Atorvastatin is there to kick the spike non classical monocytes off of the endothelial walls.

(Quick review of what/how these non classical monocytes create all the harm:
For pts with LC their bodies aren’t fully clearing the spike proteins from Covid from their bodies. Research as found that when the monocytes engulf the Covid virus to kill it, for some reason those with LC kill off most of the virus except the spike protein which in turn make these monocytes “zombie” monocytes. These zombie monocytes don’t die off (normally they die in a few days), they don’t die and they attack the endothelial lining of blood vessels etc and cause dysautonomia, gut issues, brain fog, mitochondrial dysfunction, etc.

The statin kicks these zombie monocytes off of the endothelial walls where if I was able to take Maraviroc would help break these down. But also the body will.
I’ve read another LC just took the statins and their spike proteins cleared. So I’m eventually going to try this.

But since so many things are being tested for you, and I know how that goes!! I figured I’d maybe help save some trouble and time for you to just do this test. If it come back negative for spike proteins, then more testing will then need to be done to help solve your case.

But fingers crossed it’ll provide some answers! 🙏🏻

Thank you so much for all of the wonderful advice! It is so scary to go through something like this. It is difficult when conventional testing can't pick up issues being caused by Long Covid too. I have never heard of the Radiance Diagnostics Test before. I am definitely going to bring that up with my Primary and the next Infectious Disease Doctor I meet with. I tested negative for Lymes, but I know there is a more accurate test for Lymes than the ones the hospital usually uses. Epstein Barr was definitely reactivated in me. I asked an ER Doctor to check for it at the beginning of this and she rolled her eyes, but sure enough the Epstein Barr titters were sky high. The same thing happened years ago before I was diagnosed with Thyroid Disease. Epstein Barr brings so much trouble. I definitely need to try Mestinon and I have heard of Paxlovid helping as well. I think I saw some posts on here where people were mentioning that Paxlovid was reversing some life long Autoimmune issues. I have major gut issues. I am sure I have MCAS. I was diagnosed with sibo, but I cant take antibiotics or even natural antibiotics. My nervous system goes crazy when I take antibiotics. I guess that could be from covid. I feel poisoned everytime I eat. I cut out all gluten and dairy and am just trying to stay on the Mediterranean diet. It makes me nervous because of all this I have fatty liver now, high blood pressure and insulin resistance. I am scared I will end up with permanent liver issues or become diabetic. The first year I was a walking skeleton, but now my belly is so big. I know that is awful because it is putting so much pressure on all of my organs. I also have the muscle twitching all over and dry squinty blurry vision with permanent floaters. I also am a walking zombie. My personality has completely dissapeared. I was on another site and apparently that is another common symptom of covid. I feel like my face and eyes are like a parkinson's mask like face. It is very weird. I will check out Dr. Bruce Patterson. I was also looking at the Polyvagal Theory. I have been trying the Ice Baths, spending time in nature, grounding mats, etc. Long Covid is so complex. It reminds me alot of Autoimmune, but a thousand times worse. Thank you again for taking the time to respond. It sounds like you are on your way to recovery and I will be praying for you.

It is scary going through all of this. I too have NAFL , and other metabolic issues with high glucose, high TSH, and other high pituitary gland hormones.

However ALL of these have returned to normal over time. I’m still unsure of my NAFL though, but ACH and gut can impair this and mine is mild.

Have you tried antivirals? Valganocyclovir is supposed to help clear EBV. And there are other antivirals as well to try. Reactivated EBV needs to be treated. Are your doctors addressing this for you? Both EBV and Lymes n ed to be cleared prior to taking the Maraviroc/Atorvastatin LC treatment protocol

A great resource I’ve found but then double check accuracy and with my doctor is ChatGPT.

Does your body react to Rifaximin? It’s not systemically absorbed and is gut specific

I hope you find some treatments to help you move the needle for you. Have faith and know that it will not be this bad forever.

Prayers of healing and finding answers! ❤️‍🩹

I pray that everything goes back to normal. I have not tried Antivirals yet, but Valtrex is what I took years ago along with synthroid when I was diagnosed with Thyroid disease and Epstein Barr. For some reason my body does react bad to Rifaximin. I am not sure why. I hope I find something soon that moves the needle too. Thank you again for all of your Great Advice! I pray that you are back to 100 percent soon!

Regarding Mestinon: I have Post Lyme Disease, small call Neuropathy and MCAS. I suffered from Brain Fog. The 1st dose of Mestinon took away the Brain Fog with no side effects. I've been on it for over a year. Dr also recommended Alpha Lipoic Acid and Co Q 10 which helped a little.
Still suffer fatigue, chronic pain, tinnitus. Will try anything until it works or doesn't.

Good luck.

Thankyou for responding. I have all the symptoms you have. I believe mine is a combo of Long Covid, Autoimmune, EBV and something Neuro. I was checked for Lymes which came back negative, but I only got the test through the Hospital.I heard there is a much more accurate test. Can I ask you what Lymes test you had?

The first test I had showed 2 bands of 5 positive and was told I was negative for Lyme. I had another after 5 years of not knowing why I was so sick which was positive. It was the standard test. Can't remember the name.
Not just depressed as most of the doctors told me. Followed with spinal fluid test which showed positive for Central Nervous System Lyme. I believe that was the cause of all the manifestations of diseases that followed.
From all the research I have read, Long Covid produces the same results which is why I follow this tread. You may or may not have Lyme but Covid could be causing your symptoms and the same treatments may be helpful. I know how frustrating, scary and difficult all this is. I have suffered for 15 years now. Just keep trying to find answers as you are now doing.

Thankyou! I will definitely get another lymes test. I know tests miss things all of the time so I will get multiple if I can. I am the same as you.I have had something for a long time. Even before I was diagnosed with Thyroid disease. When I was young I was always tired and it is still that way. It is not a normal tired, but something is wrong with my immune system. My gums have always bled a ton since I was very young, but I have never had a cavity in my life. The dentists never understood why it was so bad. I must have tons of inflammation throughout my body constantly. I have also had to exercise all of the time and be out in the sun/fresh air all of the time. Resting for too long seems to make me sick. It is something strange. It is so tough because Autoimmune, Lymes, EBV and Long Covid all kind of mimic each other. I am praying for you and hope you find answers and start feeling Better soon.