Very interesting. I just heard today on an ME podcast that autopsies showed Dorsal Root ganglion damage in ME.
This makes a lot of sense because years ago I decided to try treatment for lyme disease in case that is what I had before i knew about ME. I scammed into a fame test from Igenx as the familiar story goes. I was skeptical, but thought why not try the antibiotics as the test.
Well,, after taking several antibiotics including minocycline, azithromycin, bactrim and refampin I started to get unusual rain drop sensations all over my body. These eventually turned into stinging and burning sensations.
I had felt the cold water sensation before because during the onset of the fatigue years before it started with running water sensation in the legs.
Anyway, it got very bad and I started to get numb burning feet which thankfully only lasted a month and I stopped the antibiotics. However, I had episodes of the burning return and last for over a year many times over 5 years.
I did a ton of research on neurology and determined that the only way this could be explained was either in the small fibers (A and C-delta) which sense pain/temperature or from the dorsal root ganglion, which I suspected more. I also suspected it more because I know that in forms of neurological celiac this is sometimes the organ effected. I even talked to the world expert on celiac dorsal root ganglions in the UK by email.
I told my neurologists that I thought my symptoms were probably caused by damage at the dorsal root ganglion because there was no other place that could cause systemic sensations like this. He said that was not possible because if there was damage to that I wouldn't be able to even talk to him or speak to him. I find that physicians are incredibly inept.
