@purrsian thank you for that very good very thoughtful post. I really hope they find a treatment or a cure, I personally believe that since this is such an odd disease that once they figure this out that it will be a full cure. I don't think there is any other illness out there that is like this one, I mean think about it, it can't exactly kill you, you feel like you're dying but you don't look sick everything that would normally help get you better from being sick is the opposite with this. I really believe it was some kind of switch that got flipped the other way. That's why they can't find anything wrong with you in standard blood tests because the "switch" isn't going to show up on a blood test. Your body thinks that it's working normally but it's not, it's on a different planet. So weirdly how mine was set off was through insane amounts of chronic pain and than the night before taking a bunch of neurantin. If I don't inprove or start to get worse I'm going to test it to see if I take all of those neurantin again that I can't flip that switch back. I mean nothing else works
Yea it's such a frustratingly vague disease, hard to really explain how horrible it feels so doctors will take you seriously! I agree with it being like a switch and there have been a lot of theories about things either being stuck "on" or stuck "off".
I had a quick google of neurantin, as I'd never heard of it. Interesting to see "
Common side effects of Neurontin include: ataxia, dizziness, drowsiness, fatigue, fever, nystagmus, and viral infection.". I wonder if the higher dose affected your immune system somehow? It mentions viral infection can be a common side effect, so it must be able to do something to your immune system. Perhaps this was the trigger that messed it all up, rather than the actual viral infection that most people seems to experience?
You might not have had the chance to figure it out if you still get colds/flus yet if you've been housebound, but a substantial amount of people with ME don't often get colds/flus. I'm one of them, so I've been researching a lot about immune system in CFS. Currently trying low dose naltrexone, but there's also antivirals to try next and maybe rituximab one day. It's an interesting route to go down if you feel it fits your circumstances, as there's a lot of research about it these days. Another thing worth looking into is POTS (increase of heart rate more than 30 beats per min on standing, or above 110, I think those are correct amounts). It's underdiagosed but quite common in people with ME, and there's lifestyle changes you can implement to improve it a bit. Might not fit your symptoms, but definitely something I wish I'd heard of earlier in my illness!
Problem with ME is there are so many routes to go down, that it's so hard and confusing to research and decide what to try, especially when just reading is so hard!