If you had a windfall of $200, what supplements would you buy?

[xebex]

I entirely delegated my herbs to the Chinese herbalist who is an expert. And so I just pay this expert. I spend about $150 a month. They help me alot.

Its doubtful I could achieve these benefits attempting it out on my own, the chinese herbal system is complex amd requires thoughtful attention and skill to deploy effectively.

I’m glad you have a great Chinese herbalist. I’m not saying don’t try herbs but you’re right maybe if you’re going down the herb route it’s best to go with an expert. I did however go to a naturopath who prescribed me said herbs, I’m sure there are some good naturopaths but she was not one of them. Sigh.

 

[pamojja]

If you do invest your windfall in supplements, please let us know the final results: did any help significantly, did any make you feel worse, would you recommend spending $200 to experiment with supplements?

$200 always will always do very little in the long run. After all, supplements are just concentrated nutrients having to be replenished continously. Just ask yourself how long you could go with only $200 spend on food without definitely experience malnutrition, and all the complex diseases which come with it?

As example my worst condition, a walking-disabilty due to a 80% stenosis at my abdominal aorta. 6 g/d of ascorbic acid and l-lysine improved the disabilty from a pain-free walking-distance of only 3-400 meter at first, to about 1 hour after 1 year. It took 7 year until I experienced complete remission.

6g x 365days = 2.19kg x 7 years = 15,33 kg x €27.00 (=1kg of ascorbic acid) = $413,91
15,33 kg x $22,25 (=1kg of l-lysine) = $341.09

So total $755.- for remission from a walking-disabilty after 7 years. Which wouldn't even have addressed my muscle-cramps and chest-pains, only plenty of magnesium and CoQ10 could have solved.


With so little money I would invest first in clean food really. The basis on which to build on with supplements.

 

[Wishful]

$200 always will always do very little in the long run.

I think the question was about what to experiment with: which supplements are the most likely to provide a benefit for ME at a reasonable price. Since there are hundreds (thousands?) of supplements that might work for an individual, and most will either not work or have a negative effect, it is hard to decide which to try first. Most things that worked for me showed an effect within 24 hrs. Experimenting with things that would take months or years to show noticeable effects on ME is to me not worth considering, since there is no theory to base a treatment on. Supplements that 'should be good for a normal person' probably have about as much chance of making ME worse than making it better.

What might be useful here on PR is a poll listing all the supplements and treatments people have tried, with a 'Better, Worse, No effect' vote. Then we could see that BCAAs, or Chinese Skullcap or whatever was tried by x people and had whatever results. That would help with the 'What to try next?' questions. I think researchers would be interested too.

 

[pamojja]

Experimenting with things that would take months or years to show noticeable effects on ME is to me not worth considering, since there is no theory to base a treatment on.

Well it was worth for me: 7 years took the complete remission from the walking-disability (not long, if one considers that a 80% stenosis at the abdominal aorta might have taken decades to develop..), an additional 2 years under persistent comprehensive supplementation, until I never experienced PEM again.

What might be useful here on PR is a poll listing all the supplements and treatments people have tried, with a 'Better, Worse, No effect' vote.

There is already an old poll: http://www.storiesoutloud.co.uk/supplementsme/pollresultsall.py?sort=good_votes#id_pollresults

And no surprise to me: Magnesium and CoQ10 are at the top.

 

[andyguitar]

If your body is able to tolerate supplements, do you have any advice on what would be the best bang for your buck?

Depends on what your most debilitating symptom is and what the most likley cause could be. Gut? Muscles? Brain? Something else?

 

[Abrin]

Depends on what your most debilitating symptom is and what the most likley cause could be. Gut? Muscles? Brain? Something else?

Ooooh, good point!

I hadn't considered that.

 

[xebex]

Just saw a thread here that might be worth reading. It’s about a supplement that is full of the most known supps for being beneficial.

https://forums.phoenixrising.me/threads/energenesis.80218/

This is what I wrote

I have recently just bought a lot of the supps On That list, I decided to buy them all separately because some of them i already tried and they make me worse. I’d say it’s a good supplement to go for if you haven’t had any experience with supps making you worse. For me the PQQ with coq10 and NAC seem most effective, the ginseng worked for an hour and then made me sleepy, curcumin gives me brain fog, NT factor makes me highly sound sensitive and irritable. I avoid b vitamins as most of them seem to cause bad reactions though I do feel benefit from B6. I guess my point is that if you do get it (and it may well be worth it) dont give up if you have a bad reaction, maybe try some of the more commonly successful ones. Like the mag coQ10 and PQQ with ALA and NAC

 

[wabi-sabi]

To answer the question in the title: none. There aren't any supplements I know of that do anything for me at this point.

I'm with @Wishful on this one. All the supplements I've tried have done nothing or made me worse. They're all been a waste of money. That goes for the ones I self experimented with and the ones recommended by a functional medicine doc.

I would use the money on something that would cheer me up from this unhappy disease or I would donate it to Dr. Davis. Both of those sound more useful than supplements.

 

[YippeeKi YOW !!]

I’m sure there are some good naturopaths

Rare as hens teeth, and more and more like traditional allopathic Drs ..... I'm still hoping ....

 

[Mary]

There aren't any supplements I know of that do anything for me at this point.

I guess technically cumin would not be considered a "supplement", but a food perhaps? or even an herb? and herbs are considered supplements by many. Anyways, a simple food/herb - cumin - which has completely stopped PEM for you is certainly worth a mention. It's cheap and probably very few react badly to it I would think. @Abrin - see this thread about how cumin has blocked PEM for @Wishful . I tried it myself a couple of times, but unfortunately it did nothing for me. But I have no doubt that it helped @Wishful - so better than trying a bag of mixed jelly beans!

 

[Judee]

I was thinking about this later and decided to come back here and add herbs in your kitchen cupboard. If you have a spice rack it can be least expensive to start there. I'm getting a tiny boost by using Thyme tea throughout the day.

If I find something that seems to make a difference I try to go to this website to see if he says anything about it. That happened with chocolate, licorice, and now thyme for me. https://cfsremission.com/2019/07/10/user-results-from-new/

 

[YippeeKi YOW !!]

If I find something that seems to make a difference I try to go to this website to see if he says anything about it. That happened with chocolate, licorice, and now thyme for me. https://cfsremission.com/2019/07/10/user-results-from-new/

That's a terrific site @Judee, and news to me and I suspect a lot of others.

Thank you so much for posting this link !!!

 

[Abrin]

I was thinking about this later and decided to come back here and add herbs in your kitchen cupboard. If you have a spice rack it can be least expensive to start there. I'm getting a tiny boost by using Thyme tea throughout the day.

If I find something that seems to make a difference I try to go to this website to see if he says anything about it. That happened with chocolate, licorice, and now thyme for me. https://cfsremission.com/2019/07/10/user-results-from-new/

I've been thinking a lot about trying to put together a herbal type tea to try out. That way at least if it doesn't end up doing much for my health if it is still tasty to drink then I won't have missed out on much.

Thanks so much for the link!

 

[Wishful]

There is already an old poll: http://www.storiesoutloud.co.uk/supplementsme/pollresultsall.py?sort=good_votes#id_pollresults

Most of the top rated ones seem likely to be treating symptoms reasonably far downstream of ME's core dysfunction. Some might be treating symptoms that are caused by the lifestyle changes ME forces on us. Useful for those people suffering from those symptoms, but not providing much insight into ME.

What did catch my attention is that elderberries (strong immunostimulant) got more negative votes than positive. Weak evidence, but suggestive of the immune system being involved, and that stimulating it more is bad for many of us.

 

[Wishful]

I was thinking about this later and decided to come back here and add herbs in your kitchen cupboard. If you have a spice rack it can be least expensive to start there.

Definitely experiment with what's on hand. I discovered cumin's effect on me by noticing that I felt unexpectedly better than expected one morning. Checking my journal showed that I'd had curry the previous night. Further experimentation identified the cumin, and even further experimentation narrowed it down to most likely cuminaldehyde.

The most important part of experimenting is paying attention to results. Trying something doesn't help if you ignore feeling slightly better or worse afterwards. Of course, some days I feel a bit better or worse and can't figure out what caused the change.