Supplement newbie

[Jo from Austria]

Hi, i want to try several recommended supplement but have no idea about dosage or how long to take which supplement bevor I can expect to feel a difference. Does anyone have sources you can recommend to learn more about this topic?

 

[Judee]

I can't seem to find it again but another ME/CFS patient created a massive website page where she did a survey of ME/CFS patients and the supplements they had tried. It had all the ratings on what they felt worked the best for them and what didn't.

Maybe someone else will know where that is.

Ken Lassesen talks a little bit about that here although these don't all look like supplements to me. He also mentions that the surveys don't give dosage usually. https://cfsremission.com/2017/03/12/surveys-on-supplements/

Edit: Here is another site that talks about some supplements: https://www.prohealth.com/library/review-of-nutritional-supplements-used-for-me-cfs-and-fm-32636

 

[YippeeKi YOW !!]

Hi, i want to try several recommended supplement but have no idea about dosage or how long to take which supplement bevor I can expect to feel a difference

If you read about a supplement here, you can tag the writer (just put @ in front of their user name, like this: @Jo from Austria .... apologies if you already know all this, but I try never to assume) and ask them about their dosage, frequency, and how long it took for them to see or feel a difference.

Generally, nothing will work quite the same for each of us, so it's best to use that kind of personal anecdotal input as a sort of starting template, and experiment until you find the exact dosage of something that works specifically for you ....

Otherwise, it's down the University of Google rabbit hole, which can be rewarding, but takes a lot of time, energy, and mental effort which can make it a slow slog when you;re in deep cog fog (brain fog and poor focus)...

 

[YippeeKi YOW !!]

Maybe someone else will know where that is.

I think I know what you're talking about. It was well-organized, both by type and alphabetically, and she set up her own website for it ...

Damn. I'm not sure where to find it, but I'll start poking around.

But just a head's up @Jo from Austria .... even if 500 people said it really really helped them, it doesnt guarantee that it's the thing that will work for you, so don;t be discouraged. We've all been thru it, the constant trialing of things, and the occasional finding of something that really works well.

Persistence, determination, and whatever optimism you can pull together are essential.

We'll all be hanging around, so feel free to keep asking stuff. Someone's bound to know the answer, or know another member who does ...

Welcome to Phoenix Rising , and onward and upward !!!

 

[Jo from Austria]

@YippeeKi YOW !! and @Judee thank you!

 

[YippeeKi YOW !!]

Ken Lassesen talks a little bit about that here although these don't all look like supplements to me. He also mentions that the surveys don't give dosage usually. https://cfsremission.com/2017/03/12/surveys-on-supplements/

Doesn't Ken Lassesen write a blog here on PR?

I remember reading some of what I think was his stuff, and it was impressive .... might be worth a look.

Also, @Jo from Austria , did you have a chance to browse the info that the remarkable @PatJ generously compiled for our benefit, and would probably have been posted for you by @andyguitar or possible @Pyrrhus on your 'Introduce Yourself' page ....

I know it looks daunting, but taken in small bites and a little at a time, it'll yield a world of information on everything ME, including supps, Drs, treatments, etc ....

 

[YippeeKi YOW !!]

@YippeeKi YOW !! and @Judee thank you!

You're totally welcome, we're happy to do it. Members did it for us when we first got here, and they still do.

This is a great site for information, research, and trading experiences with everything from Drs to supps, herbs, and off-label prescription meds ....

PS .... Apologies @Judee .... I shouldn't be speaking for anyone but myself ....

 

[Wishful]

Persistence, determination, and whatever optimism you can pull together are essential.

Well said. That list of feedback about supplements (I can't remember where it is either, but it's British) won't tell you which ones will work for you as an individual. It's a matter of 'try lots of things and see what works for you.'

For me, everything that had an effect on my ME worked within a day, except for prednisone, which took 5 days to start working. Other people talk of benefits that took 6+ months of megadosing to start up, and at that time frame, it's hard to be sure of the correlation. Other people report having tried lots of supplements and found no benefits.

Also, don't limit your experiments to what others have reported to be effective for them. My two most effective treatments worked great for me, but haven't worked for anyone else, and both (cumin and iodine) were things already in my kitchen, and not on anyone else's list of things to try. Maybe dragonfruit seeds or some weird Chinese mushroom contain a chemical that will work on your individual ME.

My suggestion: start with the cheapest and most convenient supplements (and foods, herbs&spices, etc). I don't think the chance of a 'recommended for ME' supplement being effective for an individual is all that much higher than for a supplement chosen at random, so you might as well run through lots of cheap/easy ones first. If a multivitamin/mineral supplement doesn't make a noticeable difference, it's unlikely that testing them individually will make a difference. For me, something in those tablets did reduce my symptoms, so I then tested individually and narrowed it down to iodine.

My other recommendation is to keep good records, such as a food/activity/supplements/symptoms journal, as detailed as you are willing to manage. If you do feel better one day, what factor was responsible? Human memory is too fallible for that. My journal has been very useful for me.

 

[Judee]

Doesn't Ken Lassesen write a blog here on PR?

Yeah, he does. Here is a post of his on Vitamin D: https://forums.phoenixrising.me/blo...o-b-vit-thus-autoimmune-and-lousy-sleep.2521/

 

[Judee]

PS .... Apologies @Judee .... I shouldn't be speaking for anyone but myself ....

No, that's correct. We like to try and help one another if we can.

 

[pamojja]

Here a whole chapter of a book about the various usual supplements taken against ME/CFS: http://cfstreatment.blogspot.com/p/supplements.html?m=1

In my personal experience one rarely 'feels' taking a nutrient. The reason being: sub-clinical or real deficiencies usually develop over many decades all sorts of degenerative diseases. To expect all the expressions of that damage done during a life-time of carelessness being reversed in a few days, weeks or months of that deficient nutrient taken, is a bid too much expected. From supplements.

For example in my case it took bloody 7 years to experience complete remission from a walking-disability (from a 80% stenosis at my abdominal aorta bifurcation). With a setback half-way through from a 1 year lasting chronic bronchitis (also earning me a COPD diagnosis; asymptomatic since). An additional 3 years for remission of remaining ME/CFS symptoms (mainly constant PEMs, since still working part-time).

About dosages: best always to start lowest possible dose of any supplement (for example by starting with only a fraction of a pill or capsule), and increase very gradually over days, weeks and years. While monitoring symptoms and regular blood-work. That's always the safest bet. No need to rush. Might take more time to work than anticipated anyway.

 

[YippeeKi YOW !!]

No, that's correct. We like to try and help one another if we can.

Thank you @Judee .... I was afraid I might have stepped on toes, not because the toes didn't share the same sentiment, but because they would have liked to have expressed that for themselves ....

As always, you're generous and kind @Judee ...

 

[YippeeKi YOW !!]

You're totally right, @pamojja, and I'm embarrassed that I forgot to mention Rule #1 from the ME Handbook, or whatever it is I'm calling it .... it seems to change from post to post ....

START LOW AND GO SLOW ....
​

@pamojja explained it better, but by doing the above, you give your body a chance to tell you if it can accoodate whatever you're trialing, or if maybe you should back off.

Getting a strongly positive response on a LOW/SLOW program is unusual, but not unheard of, as @Wishful notes above.

And as @pamojja pointed out, damage done either carelessly or accidentally or just by pure bad luck down a period of many years isnt going to necessarily uncoil and let go immediately.

There's also the familiar phenomenon of finding something that works brilliantly and then ..... suddenly stops. It could be because it addressed one aspect, one substrata, of your ME, and now it's done its job and it's time to move on to the next aspect or strata. Or maybe the ME forces a tolerance response far more quickly than in non-ME people. Who knows.

Don't let that discourage you either, should it happen. It's extremely common around these parts. We generally just shrug and move on to the next experiment.

My husband, DB, taught me the value of accepting the 10%, which is hard for me, because I'm more of a 50% or no deal kinda person. Not a good idea with ME.

Live and learn. A undertaking that ME is more than happy to help along .... the miserable little shite ... ....

EDIT .... yeah, what else. Several typos. It wears me out ....

 

[pamojja]

And as @pamojja pointed out, damage done either carelessly or accidentally or just by pure bad luck down a period of many years

I should make it clear I talk about myself only. When young my own immunity could take it up with anything coming along. That honey-moon period ended with age 40. When I thereby realized I really had burnt the candle at both ends. But of course, that I've been born already with clear signs of vitamin D deficiency wasn't my fault either.

 

[LINE]

Generally, nothing will work quite the same for each of us, so it's best to use that kind of personal anecdotal input as a sort of starting template, and experiment until you find the exact dosage of something that works specifically for you ....

This is a foundation to take serious. Everyone is quite different and will react to different things in different ways. I no longer waste time, money or hope with things that may help but don't. The key is to keep the ball rolling, observation is a key structure.

I would say that minerals play a key role as do vitamin co-factors. I have not gone wrong with antioxidants, either vitamin based (Vitamin C, E etc) or plant based antioxidants.

 

[YippeeKi YOW !!]

I have not gone wrong with antioxidants, either vitamin based (Vitamin C, E etc) or plant based antioxidants.

I agree. Keeping on with keeping on is paramount, and figuring out what works for each of us individually is the touchstone for keeping on.

Also have had luck with several minerals ....

I tend to stay wide of the off-label prescription route, because aside from not really understanding ME, honest Drs will admit that the range of what the medical and scientific community dont know about the brain, how it works, what happens when it doesnt, what anti-d's, anti-a's, etc do to it, would fill several encyclopedias with enough left over to pave a highway to the moon .... and then to Jupiter .... and then back again ....

I've been told that their previous, and probably even current, explanations of how SSRI's, SSNI's, anti-psych's, etc work in the human brain was not based on the certainty that that's what it was doing in the human brain/CNS, but rather on the drug company's description of what they'd designed it to do.

Solid, solid science.

Bah .....