Methyl90
Senior Member
- Messages
- 275
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?
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
It happens to me a lot. Just recently I had an amazing 3 days of feeling so happy and energetic after starting magnesium threonate but unfortunately it didn't last.
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?
it might be due to needing another co-factor which is the next most depleted
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.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?
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!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?
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
Whoops, I do now!You know i made that poll right?