Hi – I’ve been lurking while doing my RS experiment and I’d like to thank @Ripley for posting about this. I really am deeply grateful for the information.
I’ve had a very interesting (!) experience with it! I think I need some advice now, though.
I’ve had acute viral onset ME (CCC/ICC) for many years and am almost completely housebound.
I believe I have some form of delayed orthostatic intolerance and normally have to lie down about four hours a day.
I started to feel a little stronger in subtle but definite ways when I had fairly recently started doing four new interventions, including RS (I usually try a few things at once to speed up experimentation). I was:
I wasn’t pushing my improvement, just following it. I’d never seen anything like this and one day, after ten more days, I actually only needed to lie down for half an hour. This was phenomenal! I actually had energy. I still couldn’t walk any further but I could take a shower when I wanted, unload the dishwasher when I wanted, didn’t get as tired talking to people... you get the picture.
After another week of improvement I expected it to keep going but things turned rocky. The clocks changed and I needed more rest; I picked up for a couple of days but for the last eight days I’ve been feeling pretty bad, am lying down for about five hours a day, am having to go to bed for a couple of hours in the afternoon and a bit in the evening (not normal) and I feel generally very tired, with malaise and a little nausea.
Maybe I’m panicking too soon but I’d been doing great and now I’m doing worse than normal. It could be a bug (I can never tell if I’ve got a new bug – too similar to my usual state) or maybe I’ve overdosed on something on the Paleo diet (I’ve been eating oily fish twice a day and have just realised that’s probably a lot too much).
Howeve, I’ve read on this thread (I think @Vegas said it) that people think that PWME can get worse before they get better with RS and am wondering if it’s the RS. However, I got better before I got worse!
Should I cut my dose of RS? Carry on as usual?
I’d be very grateful for any suggestions and I’m curious to know if other people have experienced anything like this.
I’m reasonably sure it’s the RS that led to my improvement because @Sushi and others have noted improvements in their OI.
Thanks!
I’ve had a very interesting (!) experience with it! I think I need some advice now, though.
I’ve had acute viral onset ME (CCC/ICC) for many years and am almost completely housebound.
I believe I have some form of delayed orthostatic intolerance and normally have to lie down about four hours a day.
I started to feel a little stronger in subtle but definite ways when I had fairly recently started doing four new interventions, including RS (I usually try a few things at once to speed up experimentation). I was:
- 6 weeks into taking 4 tbsp potato starch plus 1 tbsp psyllium husk powder plus 1 scoop Amazing Grass high-ORAC powder;
- 2 weeks into Chris Kresser’s 30-day Paleo restart diet;
- 4 weeks into low-dose naltrexone and long-acting NK cell tablets, both of which are supposed to improve NK cell function. My doctor told me not to expect any effects of these for at least two months.
I wasn’t pushing my improvement, just following it. I’d never seen anything like this and one day, after ten more days, I actually only needed to lie down for half an hour. This was phenomenal! I actually had energy. I still couldn’t walk any further but I could take a shower when I wanted, unload the dishwasher when I wanted, didn’t get as tired talking to people... you get the picture.
After another week of improvement I expected it to keep going but things turned rocky. The clocks changed and I needed more rest; I picked up for a couple of days but for the last eight days I’ve been feeling pretty bad, am lying down for about five hours a day, am having to go to bed for a couple of hours in the afternoon and a bit in the evening (not normal) and I feel generally very tired, with malaise and a little nausea.
Maybe I’m panicking too soon but I’d been doing great and now I’m doing worse than normal. It could be a bug (I can never tell if I’ve got a new bug – too similar to my usual state) or maybe I’ve overdosed on something on the Paleo diet (I’ve been eating oily fish twice a day and have just realised that’s probably a lot too much).
Howeve, I’ve read on this thread (I think @Vegas said it) that people think that PWME can get worse before they get better with RS and am wondering if it’s the RS. However, I got better before I got worse!
Should I cut my dose of RS? Carry on as usual?
I’d be very grateful for any suggestions and I’m curious to know if other people have experienced anything like this.
I’m reasonably sure it’s the RS that led to my improvement because @Sushi and others have noted improvements in their OI.
Thanks!