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← Return to Mestinon for Long Covid
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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?
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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! 🙏🏻