On-going supplement poll

[tandrsc]

Good luck with the Skullcap, I only know that lateriflora is the one that works for me, so I'm sticking with it

I can't tell you the amount in mg as I don't take the herb dry. I make a tea with 2 level teaspoons of dried herb to 250ml water, let it steep until it's cool, strain and put in the fridge. This is typically enough for nearly 2 days. I take it after each meal, mid morning, mid afternoon and about an hour before bed. I've recently added the mid morning dose, and each dose is now 25ml (using a measuring cup). You can put it in any drink you like, I usually put mine in a mug of tea these days.

 

[Hip]

Thanks tandrsc.
You are doing great work with this supplement survey. I put a link to your survey on the ME/CFS Info page of my blog, under the title "Ongoing Survey on the Best Supplements for ME/CFS".

 

[tandrsc]

Thank you - that's very kind.

 

[mariovitali]

Hi there everyone,

I use : TUDCA (Tauroursodeoxycholic Acid), Curcumin in small amounts, Magnesium, Vitamins C and D3, Dibencozide / P5P / Metafolin for Methylation Support.

All supplements are used for lowering ER Stress.

 

[JaimeS]

@tandrsc - this was a brilliant idea. I took the poll and made a few suggestions there as to what might be added.

-J

 

[tandrsc]

Thanks

I hadn't had any new votes for a while, so I was beginning to think people had got bored of it.

 

[Thommo]

I'm at the point where I have been taking many of these common supplements, in a haphazard way but with Martin Pall's book as a guide recently. I cannot point to any one "making a difference" but I have improved steadily over the years [I was never as bad as some here but it ruined my work habits for a couple of decades] to the point where it is the insomnia that is my biggest problem now. I now think that if I could get a refreshing night's sleep all would be good, including my BP which has improved with the supplements. I'm over 70 so not expecting perfection.

So has sleep therapy in general and CPAP machines in particular been of help and should it be in the survey?

This video by Dr Stasha Gominak tells how important sleep is to our immune system and how B12 sometimes, D3 almost always and CPAP machines improve so much beyond the migraine headaches this neurologist set out to treat.

I have done my sleep test and will see the specialist this week so it is work in progress for me.

 

[tandrsc]

Thanks for the suggestion of adding CPAP machine, but I'd like to limit the poll to nutrient-based supplements. It's already very long

I had sleep tests done some years ago due to my hypersomnia (12-14 hours sleep a day), but they couldn't shed any light and sent me on my way to just live with it. More recently, I have seen significant improvements since taking skullcap.

http://forums.phoenixrising.me/inde...ore-with-your-sleep.26221/page-11#post-420291

 

[heapsreal]

@Thommo
only half way through the video. Interesting about how the dr finds everything linked to poor sleep and how b12 and vit d have helped many. I hope when i finish watching it that she mentions a cure for insomnia ; )

thanks,
Cheers

 

[Thommo]

@Thommo
only half way through the video. Interesting about how the dr finds everything linked to poor sleep and how b12 and vit d have helped many. I hope when i finish watching it that she mentions a cure for insomnia ; )

thanks,
Cheers

Heapsreal, I see the same tendency in doctors, even "free thinking" ones, as with carpenters: If the only tool you have is a hammer, everything looks like a nail. I automatically add a correction factor while listening. If she is 50% right, that is better than nothing. I'll admit that I am a recent convert to the extra D3 story, but I still believe in Co Q10 and D-ribose [Mrs Thommo's family has a long history of heart probs].

I do not see any evidence that "one size fits all" in my two days as a reader here, so this can be no more than another clue.

Thommo.

 

[heapsreal]

Heapsreal, I see the same tendency in doctors, even "free thinking" ones, as with carpenters: If the only tool you have is a hammer, everything looks like a nail. I automatically add a correction factor while listening. If she is 50% right, that is better than nothing. I'll admit that I am a recent convert to the extra D3 story, but I still believe in Co Q10 and D-ribose [Mrs Thommo's family has a long history of heart probs].

I do not see any evidence that "one size fits all" in my two days as a reader here, so this can be no more than another clue.

Thommo.

Spot on.
I was waiting to hear the cure which sounds like b12 and vit d. I think most of us have tried it and or still use it.

her big claim which i agree with is that good sleep is important for many bodily functions, wow. Now she just has to work on a pill for good restorative sleep.

an interesting video but really stating the obvious , we lie awake dreaming of a cure for insomnia haha.

Cheers

 

[joanna91]

I've tried a bunch of different supplements for my cfs including multivitamin, methyl folate/b12, carnitine, activated charcoal, d ribose, nadh, probiotics, vit d, co q 10 etc, etc. Some of these supplements have only been able to help a little but the effect didn't last long. Like for instance, I took methyl folate/b12 and had energy for 1 hour. Then i took carnitine and had energy for 2 hours.

But that's still not enough...

So far the LDN has been the only thing that has been able to help. And it only causes a mild improvement. It seems like most of those supplements were just a waste of money since they weren't able to do much to help my cfs at all. And I've really tried most of the supplements out there for cfs.

I could give you an entire page of supplements that I've tried for cfs that have not helped at all.

 

[JaimeS]

. Like for instance, I took methyl folate/b12 and had energy for 1 hour.

I had the worst experience with injectable B12.

Felt like I was flying high for about 30-45 min. Almost wept: this is what healthy people feel like ALL THE TIME. I'd almost forgotten the feeling...

30 min in, I began to feel the tell-tale tingle up and down my arms and up the back of my head that I think of as being cortisol-related, and always definitely signals an encroaching emergency. 45 minutes in, I was feeling distinctly unwell, and put my foot down on the gas to get home faster (I had gotten the injection from a physician.)

By the time I got home, I could barely get out of the car. I crashed for a few days in a row.

I take a supplement that is a B-vitamin blend called 'Healthy Feet & Nerves' b/c part of my initial onset involved nerve pain and numbness in my legs; it's probably the first supplement I took for this illness. It has been helpful...

I have guesses, but I don't really know why the injection worked so dramatically, wore off so quickly, and left me so much worse.

-J

 

[joanna91]

I only tried the pill form of B12 but my doctor really wanted me to try the injectables instead. It seemed to give me energy... for about an hour and then I went back to my exhausted, worn-out self. Pretty sure I have mitochondrial dysfunction but also I think a lot of people with CFS have that too.

 

[frog_in_the_fog]

30 min in, I began to feel the tell-tale tingle up and down my arms and up the back of my head that I think of as being cortisol-related, and always definitely signals an encroaching emergency. 45 minutes in, I was feeling distinctly unwell, and put my foot down on the gas to get home faster (I had gotten the injection from a physician.)

Wow! That must have been scary, as I remember trying to rush home in the middle of a crash on a number of occasions. I have tried ingesting high does of B12 but with little effect.

 

[frog_in_the_fog]

Pretty sure I have mitochondrial dysfunction but also I think a lot of people with CFS have that too.

I asked my doctor about this, but it was shot down. Do you have muscle or joint pain? If so, read this article.

 

[JaimeS]

I asked my doctor about this, but it was shot down. Do you have muscle or joint pain? If so, read this article.

There is some preliminary work that may support that patients who meet the CCC or ICC criteria will have some kind of acquired energy metabolism issue as a rule rather than an exception.

 

[keenly]

Idebenone, B12 and Magnesium are amazing. EVERYONE should take these.

 

[VitaminK2]

I've been taking quite a bit of stuff. I'm still in the process of figuring a worthwhile stack. My sleeps been absolutely horrible lately. I have a apap(auto-cpap) but my sinus congestion have been making it difficult to keep it on. My sleep apnea is only extremely mild though its my rls that is messing with my sleep. I've been taking pramipexole on and off for that it but it makes me nauseous.
Aside from that i've been taking.
Orally (supps + medications):
Daily:
Zinc, magnesium, biotin, l-theanine, fish oil, vitamin k2, vitamin d3, modafinil or armodafinil, tramadol, gabapentin.
baclofen (sometimes for muscle spasms), pramipexole (sometimes, it makes me nauseous), venlafaxine (weaning off it now).

Injectable form: Intramuscular except for the hgh, and occasionally subcutaneous with the l-carnitine.
Glutathione, Coq10, Curcumin, Reseveratrol, L-carnitine, hgh.

These injectables I added in recently except for the hgh which I've been using for almost a year. I have some chronic pain problems which I go to a pain clinic for. The hgh adds to my lethargy but I keep it in because it helps with my body composition and recovery. And I've also been on trt (testosterone replacement therapy) for a few years now.

I plan on trying IV vitamin C and injectable b12 in the future if my current regimen does not yield any improvements. My goal is to get off most of the pharmaceutical meds eventually (tramadol, gaba, effexor, etc).

 

[SolarMuse]

Hello everyone

I've been greatly helped by a couple of supplements recently (acetyl-l-carnitine and d-ribose) but it took me ages of trawling the forum to find the things that most people seemed to be finding the most helpful (thanks to everyone who has posted about their supplements).

So... as a software developer (at least I was until CFS/ME got me) I thought that what we really need is a CFS/ME supplement poll with all the supplements listed and people's ratings (and a comment). And I thought, I can write one of those, so I have.

You can find it on my website at:

http://www.storiesoutloud.co.uk/supplements/pollresultsall.py

I'm hoping it will become a valuable resource for anyone wanting to try supplements to ease their symptoms. I've added links to Wikipedia and Pubmed under each of the supplements to help people read up. And there's a link to search amazon for those who want to shop around for the best price.

There's not much on it at the moment, but if anyone else thinks it's a good idea, please add your vote.

Thanks

This is awesome! Thanks so much. I am bookmarking it.