Well-tolerated supplements???

[Sarah94]

Do you know of any supplements which are generally well tolerated by PWME, i.e. zero or very few people have reported feeling worse on them?

Please keep this thread focussed on this question - don't just post saying "this supplement helped me personally". Thanks!

 

[Wishful]

I'd be surprised if there are many supplements that won't have at least several people saying that they felt worse on them. That's just how ME is.

If you're interested in a reasonable number of supplements, I suggest making a poll, listing each nutrient.

Did it have a significant beneficial effect?
Did it have no noticeable effect?
Did it have a negative effect on you ME symptoms?

If you went through the work to list all of the common nutrients, I'd take the time to click boxes.

For some of them, maybe a followup poll for how long it was taken. Personally, things that affect my ME tend to work in under 24 hrs, although one (prednisone) took 5 days before abruptly working. I'm a bit suspicious of treatments that claim to work after many months of taking it.

 

[pamojja]

any supplements which are generally well tolerated by PWME, i.e. zero or very few people have reported feeling worse on them?

Since many are not tolerating movements, sounds, light, temperature, or commonly well tolerated foods, I guess there isn't one.

I suggest making a poll, listing each nutrient.

There was already such a poll: http://www.storiesoutloud.co.uk/supplementsme/pollresultsall.py?sort=good_votes#id_pollresults

 

[Judee]

I'd be surprised if there are many supplements that won't have at least several people saying that they felt worse on them. That's just how ME is.

I agree with this. Even when I do extensive research on a product and search out "hypoallergenic" supplements to use, I can feel icky after taking them. I think we are just different from most of the population. I react to the "weirdest things" according to my healthy friends.

 

[Mary]

I agree with @Wishful too - we are all so different here. Many can take methlcobalamin, many can't. This is true with almost everything, including something like magnesium which it seems that everyone should tolerate, but they don't.

One thing I have read mostly positive reviews about are BCAAs (branched chain amino acids). I think one person might have said they were too stimulating, but overall, from what I've read, people have reacted positively to them. They cut my PEM by more than half, taking 4000 mg to 6000 mg a day in divided doses on an empty stomach. They are one of my most important supplements.

 

[borko2100]

I've taken so many supplements that I've lost count. Not one of them has made ANY difference even at high doses. Zero positive or negative effects. I find this strange, because many people experience at least a mild improvement from some supplements. Makes me think that maybe people who don't respond to supplements are suffering from a structural problem (CCI, stenosis, etc.), after all trying to fix a structural problem with supplements is like trying to extinguish a wildfire with a water pistol - it's never gonna work.

 

[Sarah94]

I agree with @Wishful too - we are all so different here. Many can take methlcobalamin, many can't. This is true with almost everything, including something like magnesium which it seems that everyone should tolerate, but they don't.

One thing I have read mostly positive reviews about are BCAAs (branched chain amino acids). I think one person might have said they were too stimulating, but overall, from what I've read, people have reacted positively to them. They cut my PEM by more than half, taking 4000 mg to 6000 mg a day in divided doses on an empty stomach. They are one of my most important supplements.

Do BCAA's reduce PEM from mental overexertion too, or just from physical overexertion?

 

[Mary]

Do BCAA's reduce PEM from mental overexertion too, or just from physical overexertion?

I think both. Both mental and physical exertion cause PEM for me, and the PEM feels the same for me, whatever the source. The BCAAs don't prevent PEM for me, though I think they may help do this for others. But where they shine for me is reducing the length and severity of PEM. It used to last on average for close to 3 days for me, and now it's usually over after one day, unless I seriously overdo it. But they haven't extended my energy envelope - i.e, I can't do more than before without crashing. However, I think they have helped others do more without crashing. I got results after about 5 days. I had no idea they were going to do this for me. So I've been taking them daily for the last 4 or 5 years, and they have continued to keep my PEM recovery time less than half of what it had been for 15 years.

Here's a thread I did about them: https://forums.phoenixrising.me/threads/bcaas-reducing-pem.34719/
I started with 4000 mg a day and now am up to 6000 mg (in two divided doses)

 

[Wishful]

I've taken so many supplements that I've lost count. Not one of them has made ANY difference even at high doses. Zero positive or negative effects. I find this strange, because many people experience at least a mild improvement from some supplements.

Seems strange to me too. I've only found a few supplements or remedies that have had a positive effect, and most of those stopped having a noticeable effect after a while. I've had far more negative effects, some quite strong, so I find it strange that you haven't had any negative effects. Individualism again.

I think the reports of mild benefits from supplements might have a slight bias due to the placebo effect. Wishful thinking after taking something that is supposed to be good for your health and which others report miraculous improvements from. They might also be correcting some non-ME health issues.

 

[Wishful]

I react to the "weirdest things" according to my healthy friends.

We could probably have quite a lengthy and entertaining thread just on that topic. We probably all have examples of responding badly/unexpectedly to various things. It's probably normal to be abnormal.

 

[Archie]

I think this is interested topic , not that i could throw a list of " safe" supplements but becouse it may be important to understand how viruses behave, specially when we take something , there seems to be some kind of cycling pattern ,as eplained in this site:

http://www.enzymestuff.com/conditionviruses.htm#4


Viruses are hard to get rid creatures, that can take long time to say them goodbuy forever . The "stopping effect " when take supplement can be also becouse the cycling pattern

I just started taking enzymes again after reading that article , proteins might be the weak spot what comes to viruses ? Need to take on empty stomach so, it ends up to blood, and the one i take is just systemic enzymes only.


The mindset of EBV can be devious

 

[Wishful]

Thanks for linking that poll @pamojja That might be what Sarah94 was looking for. I added my votes. I didn't see any way to suggest additions, such as cumin.