← Return to Mestinon for Long Covid
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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! 🙏🏻
Replies to "Dang, you’re going through a lot too! Have you done the Radiance Diagnostics test that tests..."
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.