Methyl90
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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?
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Remission only at start
- Thread starter Methyl90
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BrightCandle
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Unfortunately yes and we do not understand why.
chilove
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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.
Yes, quite common. One day we discover something that triggers remission, and are overjoyed that we've solved our problems!!! 
Then a few days later it stops working, and never works again.
Just curious: what triggered your temporary remission? Prednisone, cumin, and T2 (3-5 diiodothyronine) were the ones I managed to identify for me.
Then a few days later it stops working, and never works again. Just curious: what triggered your temporary remission? Prednisone, cumin, and T2 (3-5 diiodothyronine) were the ones I managed to identify for me.
Magnesium might cause you to need potassium. Just a thought. Or other co-factors?
This does happen a lot. Sometime it might be due to needing another co-factor which is the next most depleted, or gets used in higher amounts when you treat a deficiency in one thing that suddenly starts up some processes working again. It's not a very exact science though, lots of trial and error.
For example @Mary improved from benfotiamine, then felt worse, and was able to figure out that the benfotiamin caused a higher need for phosphate.
Could be worth it search the forum for other peoples' experiences with whichever supplement you had that with.
For me I've only had one 'remission', meaning all symptoms I can recall just disappearing. It was the first time I took antibiotics after onset (which was maybe 10 years later). Every problem - difficulty walking up stairs, nausea after meals, constant fatigue, etc - just disappeared when I took Zithro. Lasted for maybe 3-4 days, then symptoms all crept back. Revisited antibiotics many times - some modest benefits, but nothing like the initial experience.
Rufous McKinney
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that makes the most sense- and given the complexity of all this, what is that next depleted thing may not be readily apparent.
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.
Its hard to even treat the body's energy generating function with just a single supplement to begin with. Something like niacinamide may have more potential for example to improve the function of the body as a whole since its has such wide ranging effects through its necessity for the coenzymes NAD and NADPH. But even this is not treating the whole system.
Mary
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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!
In 2004 NADH did the same thing for me - 10 amazing days. And it stopped. I tried it off and on several times but never had that happen again, and I just stopped. It was too pricey.
But there are several supplements which have helped me and continue to help me, so I keep taking them. None of them gave me a feeling of being in remission but mainly helped my energy, sometimes quite a bit. In 2014 branched chain amino acids cut my PEM recovery time by more than half - from 2-3 days down to 1, and they're still working. A couple of times I've gotten low on them for various reasons and I very quickly after a couple of days started to backslide, crashing easier and taking longer to recover, but as soon I got back on them, my PEM got shorter etc. I won't be without them.
In 2010 I started taking methylfolate and it gave me a really nice boost in energy, followed a day or 2 later by severe fatigue, this was due to my potassium taking - a refeeding syndrome reaction caused by the methylfolate. I was prepared for this after reading Freddd's posts about methylation and he talks about potassium a lot. So I started taking potassium, titrated up my dose till the fatigue abated and was able to continue with the methylfolate, to my great relief. I still take potassium and methylfolate daily.
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. So these are 3 things which have helped me enormously. I often have days where I feel pretty well. Though I still have to stay within my energy envelope. But they've increased my quality of life noticeably.
So it's a mixed bag and the only way I know to find out what will help and what the heck it is doing to oneself is to experiment. Also, I highly recommend muscle testing done by a competent practitioner. It's guided me a lot in my experimenting.
I decided to follow your lead and try benfotiamine again last night, this time with a large serving of yogurt.
I didn't feel worse this time! So I took it again this morning (just ~25mg) with more yogurt. Actually felt some improvement both times but it was hard to tell at night the first time. So I just have to get enough phosphorus with it and should be able to take it.
Mary
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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
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Mary
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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)
The dose I take depends on my symptoms and muscle testing. I don't need it every day though I do several times a week and often I need more than one packet at a time. Each packet has 20% of the daily RDA for phosphorous and 7% and 6% of the RDA for sodium and potassium (negligible)
Mary
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Whoops, I do now!You know i made that poll right?