Thread by @lux

#MECFS is such a frustrating illness! I was sick for years an nobody believed I was ill ... it took the pandemic and lots of people getting ill with #LongCovid before doctors would listen. Over the past year, I found things that help me recover, again, nobody listens! /1 🧵

Can you believe that I could do handstands, balancing only on my elbows before I became sick? Well I could! This photo was taken about a year before I became ill, I think I was 43. I was super fit and healthy, until I suddenly I because exhausted ... and wasn't. /2

I have be sick for almost 7 years now. In Janary of 2022, my new years resolution was to be able to walk for 15 minutes, without "crashing". 15 minutes! If I couldn't do that, I didnt' want to be alive anymore. At that point I had tried all kinds of medicines and treatments /3

My doctors, had basically run out of ideas. My plan was just to give movement one more try ... and guess what? I couldn't do it. I couldn't even walk 15 minutes a day without being bed bound for days. /4

Around that time I had read this article in on health rising, about mitochondial enhancers. healthrising.org/blog/2020/12/1… I decided to try a D-Ribose + L-Carnitine suppliment I had researched. Called "RiboseCardio". Amazingly, IT WORKED. I was able to walk 15 minutes, and /5

NOT be completely fatigued in my muscles. This is a photo of the two suppliments that I drink every day in the AM and before exercise (like walking). The Amino energy has some caffiene, so I drink it instead of coffee. /6

I was so happy about my progress, I read up about the products from "Reseached Nutrionals" and found they have another suppliment called ATP360, which checks all the boxes in that article I shared, earlier in this thread. I take two capsules every day. Initially I took this /7

with an extra dose of CoQ10 ... 400mg, for about 3 weeks, but had to stop taking the additional 400mg, becuase it made me anxious (which is weird for me). I read somewhere that you are supposed to take a high dosage at first, then reduce the amount. So I did that. /8

After about 3 months I was able to start getting back to group classes ... I was doing an intense pilates class. It was not easy. I was in a lot of pain the first few times I went, and I felt horrible about myself ... it grueling to see how far you have fallen! /9

I used to *teach* those classes, and I was reduced to laying on the floor in agony in the back of the class. I couldn't breath. It was horrible, but over time it got easier, so I kept going. By about september, I was going every day.

BTW, I wasn't working on anything important during this time ... so I could devote all of my limited energy to this recovery. I don't think I could have done it otherwise. /11

I'm happy to say on New Year's day THIS year, I walked 15 MILES with my 13 year old daugther, and was leaving her in the dust. /12

One last thing I would like to mention: Three weeks ago today I started #Guanfacine. While it isnt' a magic bullet (nothing is) ... it has helped me with brain fog, and getting sleep. I take 1mg XR + 600mg of NAC /13

The only other med I've taken consistently is good old THC capsule when I needed to sleep (I have had insomnia since I first became ill, and rediscovered THC about 2 years ago). I also tried LND for about a week (no effect) and NattoSerra (in Nov?), which I think helps a bit /14

I hope if you are still reading this, you will take this advice to heart and TRY THESE THINGS, not something similar, as I believe the formulation makes a difference (again, I tried many things over the 7 years of illness). I have written tweet after tweet suggesting these /15

things to other memebers of the #LC and #MECFS community, and over and over again people don't try it... so I'm giving up. I do hope if any of this helps any of you, you'll let me know. It's crazy how such simple things have change my life, and how incredulous this sounds /16

after many attempts only to fall on my face again ... but it's been a year of steady recovery for me, I hope it continues, and I hope more than anything others can find the same.

@SeanBurke

@FranceyME