I understand. It’s not really autonomic issues though it’s the effect on my core ME symptoms. Maybe it’s making me feel worse to the same extent it makes some feel better? So I’ve stopped now.
Who knows, maybe if I’d carried on it would all have reversed but I didn’t want to take that risk.
Seems like a great tool for some though.
Edit: I’m glad I did it though! I am much more aware of the effect of carbs & my blood sugar and dont feel any urge to go back to my previous sugary diet.
Edit 2: I think I feel better now (just off keto) than I did before I started... so maybe it did something?
It's your call
@Nathalie Wright and do what you think is best. I've already crossed the "giving medical advice" line twice in this thread and had to be edited.
The state of treatments for ME and their supporting scientific evidence is extremely poor, it's really unfortunate and a major reason many of us are here on these forums. Everything is a total shot in the dark and that is what we have to do... there currently is no other way.
There is no good and direct scientific evidence for
any treatment out there, not Valcyte, not Ampligen, not anything. If you read the studies on these drugs closely the evidence is very, very poor, in fact it’s almost garbage. They don’t work for most people and, for those where it does, they have absolutely no real idea why. ME specialists try them because of anecdotal evidence from some patients improving on them. None of the treatments they have people try have any real scientific grounding that they work, and the only drug that ever went through proper gold standard phase II and III trials was rituximab and it failed.
So treatments are just trial and error, that’s what every ME specialist does because they do not know absolutely anything. If you take Valcyte for example, it makes most PWME feel like complete crap when they start taking it, and for those where it worked they feel like crap for many months before they see the improvements. So who knows what do to when you try a treatment and it initially makes you feel worse, there could be so many other factors or issues in a person not even related to ME that make one feel worse initially. I do not know what other issues you have.
I only want to help people as much as I can. If doing a treatment is going to make one permanently worse than absolutely it shouldn't be done. But, from my experience, if there is some good scientific evidence suggesting a specific pathological feature in ME (i.e. glucose pathway TCA cycle impairment, metabolic dysfunction) then it would make sense to try treatments that either circumvent or attack the issue head on.
I think I should at least give it a go for a month. Has anyone heard of anyone feeling worse then better after the first two weeks or so?
Unfortunately, as time has gone on, it's become harder and harder for me to fast.
