Is it common in ME/CFS to have a strong initial remission response from the supplements and after a few days/weeks they stop working?
This is a common thing that happens from supplements as a general rule even in those without CFS. Most when they take something for a few days or a week with some significant effect and then the effect dissipates or they end up feeling worse. I think because most supplements do not treat the system as a whole to improve its function.
Unfortunately yes! in 2002 (it was so amazing I remember the year) 2 grams of l-carnitine daily gave me 10 very good days with lots of energy and no crashing - I thought I'd found the Holy Grail. And then it stopped, and though I took it off and on several times, it never had that result again. However, everything I read about l-carnitine indicates it's good for me (and muscle testing confirms this) so I keep taking it, hoping it's helping!
Maybe 6 years ago, I can't remember, I started taking thiamine and it blew me away - large increase in energy, followed a day or two later by severe fatigue. I immediately thought of potassium but it didn't help. After reading and experimenting I found that it was another refeeding syndrome reaction - this time my phosphorous tanked. I drank several glasses of kefir (dairy is high in phosphorous) and sure enough, the killer fatigue went away - and I was able to keep taking the thiamine.
Poll on benefits of supplementing amino acids | Phoenix Rising ME/CFS ForumsSeems to be quite a bit of people improving on some amino acid. Stuff like nac and bcaa. I have felt a bit better with arginine myself for a couple of weeks. Have any polls been done on this?
Glad to hear this! I ended up getting a phosphorous supplement. I would have had to eat too much dairy otherwise! Phosphorous supplements are generally hard to find, this one works well for me: Sodium, Potassium, Phosphorus Powder Concentrate (Sugar Free) 100 Pack – Hargraves Online Healthcare (hargravesotc.com)So I just have to get enough phosphorus with it and should be able to take it.
You know i made that poll right?Poll on benefits of supplementing amino acids | Phoenix Rising ME/CFS Forums
ETA: You might find this interesting too (re arginine): Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement | Phoenix Rising ME/CFS Forums