Hi guys. As a start I just wanted to give you a quick update on what I know about the Cortene Trial. In a word, nothing. ha! It seems they are not in the habit of telling patients what the results are until the rest of the world also knows. I do know at least one patient it has helped, I don’t know about the others. I have no idea when the study will be published. I wish I knew, sorry about that! I get emails every week asking. I really have no idea.
In the meantime… Mestinon
Mestinon! If you have not tried Mestinon I highly recommend it! I believe it has helped to increase my energy envelope. I have small amounts of energy (I am considered a mild case of ME/CFS) but Mestinon helps me to have more energy within my energy.- Does that make sense? I feel because of Mestinon my body is communicating more efficiently- nerves to muscle to brain and back. My orthostatic intolerance has been lessened. Am I cured? no, but I can do slow and light amounts of movement with no payback.
What exactly is Mestinon?
Mestinon is an acetylcholinesterase inhibitor. Acetylcholinesterase is an enzyme that breaks down the neurotransmitter acetylcholine. With higher levels of acetylcholine your perpheral nervous system can communicate more effectively. Mestinon is typically used to treat myasthenia gravis and sometimes for giving movement to muscles after surgery. –and apparently can help ME/CFS patients!
I first learned about Mestinon doing research on things that help ME/CFS in 2017. Unsure, I printed out an article (this one by Cort Johnson) and took it to my Primary Care physician. I asked him to prescribe me a low dose to see if it might work. He reluctantly agreed. I took 60 mg twice but that was all. I was scared to take it as it seemed like such a reach. I was scared of side effects.
Later after lots of prayers and searching I ended up stumbling on information finding information about Mestinon again. This time Dr. Bateman was on the record stating it has potential to make a large difference in the quality of life of ME/CFS patients. I decided to pick it up and try again. I’m so glad I did.
More scientific articles to explain why and how Mestinon works for us:
New Insights into Exercise Intolerance and Medication
New Findings Elucidate Potentially Treatable Aspects of ME/CFS
Doseage is really individual. for me what works is two 60 mg tablets in the morning upon rising and one or two in the afternoon around 2:00pm. Taking too much Mestinon can really mess with your digestive system. I mean it causes your body to communicate better so it might make you need to go to the bathroom again/ more frequently/ more intensely. Just a friendly warning. haha. If I were you I would probably ask my doctor for 120mg and build up from 60. Figure out what works for you. Your doctor might even have a recommendation?
That is all for today. I wanted to try and help spread the word about Mestinon even though everyone reading this blog probably knows all about it already, haha.
I sincerely hope you are well. Sending my hugs and love!