Studying ME/CFS in isolation from CCI, tethered cord, Lyme, hEDS, MCAS, mold, etc is a massive mistake. They’re deeply interrelated. Eg, before my fusion, my mold reactivity got worse and worse, to the point that no matter how much I washed them, I was reacting to my bedding. 1/
The sx were classic mold sx for me: insomnia, an electric feeling in my limbs, and the next day, bodywide swelling and pain. It was awful. But then I tried sleeping with a cervical collar, and it solved it. 2/
I’m not saying that I was wrong about reacting to mold — I had clear evidence that mold caused these sx. But my neck was intimately involved. 3/
Post fusion, my mold reactivity isn’t gone, but it’s much better. Interestingly, when I retethered, it got much worse. The dura is rich with mast cells, so when it’s getting tugged on, the mast cells get mad, increasing reactivity. 4/
My guess about the role of my neck is that exposures cause inflammation in my brainstem. When there already wasn’t enough room for my brainstem, it took very little swelling to cause chaos. I also think the inflammation caused the breakdown of the ligaments in my neck. 5/
I also had two very bad concussions as a kid. Perhaps that damaged the ligaments somewhat, reducing the space for my brainstem from early on and making me more susceptible to mold illness in the first place. 7/
That’s just one example of the overlap. If we conceive of these illnesses as unconnected, we blind ourselves to these critical clues about what’s driving them. /end
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