Can you recommend a supplement/supplement combo to your fellow CFS sufferer ?

[Mimicry]

We weren't suggesting not trying them. I tried quite a few different diets because there was no guarantee that it wouldn't help. I do object to claims that "The <whatever> diet is the answer to everyone's health problems!!". We all differ too much, and what works for one will be bad for someone else.

Some diets are relatively cheap, easy, and safe to try, so there's not much reason to not try them. Others are expensive, especially the proprietary ones, and others have some risk of harm, so I would suggest doing proper research into them before taking that risk.

You're absolutely right! I misunderstood, my bad. My eyes have been acting up and brainfog has been worse than usual this last week so I have trouble with reading and comprehension

 

[Wishful]

Both @Wishful and I have posted on this thread about the absolute impossibility of finding a One Size Fits All solution to this crafty little backstabber of an illness

No, I'm still fairly confident that there is a possible 'one treatment' for ME. The temporary remissions from several different chemicals, convinced me of that, since they switched all of my symptoms off. We just need to find the right chemical to switch the ME state off, and maybe another chemical to keep it off.

I do agree that finding one treatment for any specific ME symptom is much less likely. There are too many downstream symptoms and upstream responses. Furthermore, two people might describe a symptom the same, but they might involve completely different mechanisms. Then there's the problem of comorbid symptoms that aren't directly due to ME, but might be due to whatever treatments and lifestyle changes people make because of ME. So, what's a wonderful treatment for some, might fail for someone else and make some other symptom worse. Crafty little backstabber indeed.

 

[YippeeKi YOW !!]

No, I'm still fairly confident that there is a possible 'one treatment' for ME.

I hope you're right !!! But in view of the multiple subsets and permutations of this creepy little steamroller of an illness, I think that what's more likely is that one treatment will finally be discovered that deals with the purely ME issues, and then, from that triumph, other treatments will de developed that hack away at the subsets.

The temporary remissions from several different chemicals, convinced me of that, since they switched all of my symptoms off.

That's more or less an n-1 testimony. I know from reading these threads til my eyeballs bleed and my brain begs for a merciful death that almost as many members here were totally NOT helped by things like Abilify and LDN, and a few were set back fairly sharply.

It's all a great mystery, but still, I'm totally hoping that you're right !!!!

 

[Wishful]

I think that diverting research funding into studying and treating individual downstream effects of ME is a bad idea. There are so many potential downstream effects (and upstream responses) that it can suck up all the funding and still need more. Furthermore, it's a game of whack-a-mole, since ME keeps changing individually just over time, and the individual responses to the treatment means that any treatment isn't likely to work for long, and some will trigger worse effects of ME for some patients. On top of that, the treatments may change ME on their own, making that treatment (or any others that might be working at that time) ineffective.

The pharmaceutical and supplement industries might prefer that approach (constant revenue stream), but I'd rather see the funding going to figuring out the root cause/mechanism of ME and treating that, which should treat all its symptoms and abnormal responses.

Some might say that symptom treatments should be funded, since they'd at least provide some improvement in the quality of life, which is true, but such approaches so far haven't been any more successful than focusing on the root cause, and there's no evidence that they would be any more likely to succeed. If the chance of success is roughly equal, it makes sense to fund the approach that would treat all the symptoms at once, by treating the root cause.

 

[Wishful]

I retested fibre. No problems from it for three days, so I was excited that the intolerance had passed. Today I'm feeling the brainfog/lethargy/aches that I'd associated with dietary fibre, so I guess it just took some time for the bacterial populations to build back up.

Darn!

 

[Rufous McKinney]

this thread looks interesting....wish I could wade thru all the suggestions.

I have a three sentence reading limit. (unless its five)

After several months recovering from intense PEM post field trips and medical procedures....

I'm doing better. A bit encouraged.

Below are a few things which seem to be helping me perk up a bit (along with mostly just not going out)

- b-caryophylene (Copaiba Oil) topical applications (continue, occasionally I skip a day)

-nattokinase (still going slow there, I take one every few days)

- aged black garlic- seems to be shifting/activating my immune system- observing that.

-Mood Probiotic several times a week

-more Omega 3 purple food/good fiber

-chinese traditional herbs- low dose currently helping digestion and other things

Would you believe I"ve convinced myself that both dill pickles and a few English Walnuts will cure me of remaining inconveniences!! And iceberg lettuce- (which I didn't eat for fifty years, I really like it, convinced myself it contains something beneficial.

What is not going smoothly:

blood pressure. (erratic, high in the afternoon on BP pills?)

Still have a bad day food/digestion wise and will go down (more food sensitivities it seems)

Blood sugar- erratic. We shall see I get tested soon. Brief episodes of hypoglycemic feel rather awful.


___
Result: needing less sleep, possible cortisol shift, HPA axis slightly improved from the probiotic and other digestive aids ; less peripheral neuropathy and odd pains coming out of joints and things (which are sometimes "wind"). Lungs better.

Not as "weak and wiped out"

Lets hope this continues!

 

[SpacePenguin]

By order of their apparent effectiveness and my confidence in their effectiveness:
1. Magnesium - I take 450mg as citrate and 600mg as glycinate (labeled as glycinate-lysinate from Dr's Best, but I've corresponded with them and it is almost entirely glycinate)
2. Na-R-alpha-lipoic-acid - 80 or 100 mg 3x per day. Might not be necessary to use the Na-stabilised form or the pure R-form.
3. Omega-3 fish oil - stopping it and going back on at just 300mg of EPA/DHA I noticed a difference. Recently started taking about 5x that amount, and I'm not sure it is doing much more.
4. Melatonin - 6mg at bedtime, half as immediate release, half as sustained. Seemed to help with getting to sleep and staying asleep when I have gone onto it, though it's possible it has lost its effectiveness after many years.
5. Taurine - 1,000 mg at bedtime, maybe helps a little with getting to sleep and with sleep quality.
6. Panax Ginseng - This seems to lose its effectiveness if I take it for more than 3 consecutive days. So I only take occasionally at breakfast when I think a day is going to be particularly demanding - maybe 3 times a week. If I do take it 2 or 3 days in a row, I will take a break for at least as long. It seems to give me slightly more energy, improved sleep, more libido. 10 mg of ginsenosides is enough and more doesn't seem to increase the effect much.

I'm surprised people weren't talking more about magnesium (I only noticed it mentioned in terms of helping with constipation above). I do get constipation and the magnesium (especially citrate) does help with that, but my impression was that most PwCFS found magnesium helpful.

For context - I have had CFS for 12 years, I'm male, in my late 30s. My condition apparently started with a cold. For five years, it "only" cut me in half. Condition deteriorated over a few years and for the past 5 years or so I've been basically housebound and unable to work. I have tried many, many supplements (around a 100 maybe, pretty much everything people have recommended above) and many other forms of treatment - anything that seemed plausible. I have found that avoiding high glycemic loads is important. Very short sessions of high intensity interval training (HIIT) make me feel slightly better immediately, for the rest of the day and the next day. But I can only manage that on days when I'm basically not doing any other activity - no shopping, cooking, cleaning, socialising. I'm currently at 4x14 seconds, rest between sets for 24 secs, 100 secs jogging as warmup, then a couple of minutes wandering around til cooled down. The specific exercises I do are mountain climbers, jumping jacks, burpees, running on the spot while punching, all as fast as possible, each for 14 seconds. I take 1,000 IU of vitamin D a day, which is probably more important than any of the other supps, but I don't consider it a treatment for CFS. It's just that I hardly get any sun.

 

[SpacePenguin]

My biggest problem is the immense brain fog.

Did you see this news about guanfacine? Might be worth a try.
https://www.healthrising.org/blog/2022/12/24/brain-fog-long-covid-chronic-fatigue-fibromyalgia/

 

[Wishful]

And iceberg lettuce- (which I didn't eat for fifty years, I really like it, convinced myself it contains something beneficial.

It does have active biochemicals. It gave me noticeable benefits when I first tried it, but it stopped working soon after.

 

[Rufous McKinney]

I did a modafinil experiment yesterday

(low dose 50 mgs)

I seem to have survived Day One.

It does have active biochemicals.

After witnessing the many lettuce recalls, I decided lettuce might be a way to consume some random probiotics.

 

[Rufous McKinney]

then I read all that stuff about how it can permanently mess you up

Where did you read about that?

 

[YippeeKi YOW !!]

I'm surprised people weren't talking more about magnesium (I only noticed it mentioned in terms of helping with constipation above). I do get constipation and the magnesium (especially citrate) does help with that, but my impression was that most PwCFS found magnesium helpful.

I've posted about magnesium endlessly, to the point of being boring ..... I agree, I think most ME sufferers can benefit from it, and I'm really glad you posted about your experience with it .....

Additionally, if you take Vit D, it's absorption and usilization by your system is sort of rate-limited by the amount of magnesium you have available, and it sucks up mag like a Hoover on crack. A lot of members have had a bad reaction to oral Vit D, probably because they were prtty deficient in magnesium. Absent any immediately available mag, your system will pull it out of anywhere it can, including your bones and teeth, in order to process the Vit D, which may explain the issues some have with oral D ....

You can do a quick search of this site and find a lot of posts and threads about magnesium (including a couple of my own posts, right here in this thread), its uses and benefits, and various members experiences with it .... go to the top of any page, and on the far right, you'll see 'Search', enter your area of interest there, and you should get a lot of links to threads and posts relevant to that ..... if you use the external Google search function, you'll only get posts or threads that are open to the public and not restricted to 'Members only' ....

As a brief refresher, I got no help from mag citrate, largely because it's only about 4% bioavailable, and is used mostly for constipation issues, for which it's totally wizard. As a method for replacing mag, I've found that, at least for me, mag glycinate is the best, partly because the mag is bound to a large molecule (the amino acid glycine), and is therefore digested in the stomach, bypassing the famous mag diarrhea effect, whereas mag citrate is bound to a small molecule, which shoots thru your system like a ballistic missile and settles in your colon, where it works its magic as a laxative by drawing in water and therefore, hopefully, producing beneficial activity.

EDIT .... To add more information ....

 

[Rufous McKinney]

Beware of vegetable oils containing soy.

I"m mad because a local person makes fabulous mayonnaise. And they use soy oil which I don't want to be consuming.

That leaves olive oil and making it yourself. Darn.

 

[Rufous McKinney]

I've posted about magnesium endlessly, to the point of being boring

I was just going to point out extensive info on MAG.....

 

[Rufous McKinney]

I seem to have survived Day One.

I am to take it again today. Yet I think I will cancel.

 

[Jo86]

Where did you read about that?

About Lion's Mane, I take it ?
Reddit or even a post from here on Lion's Mane... here:
https://forums.phoenixrising.me/threads/anyone-used-lions-mane.83245/post-2415946

 

[hapl808]

I've posted about magnesium endlessly, to the point of being boring ..... I agree, I think most ME sufferers can benefit from it, and I'm really glad you posted about your experience with it .....

Yeah, I feel like there's been so many extensive discussions of magnesium, but there's a lot of content here so maybe easy to miss.

I've experimented a lot with glycinate, citrate, threonate, and malate. Had a brief period where 'maybe' glycinate helped a bit with HRV, but wasn't repeatable. Didn't really impact HR so much which is what I was hoping. Malate has helped a bit with muscle pain, but pretty minimal. To be fair, very little helps me much anymore, whereas when I was more mild-moderate, I found magnesium extremely helpful for muscle tightness, general relaxation, gut health, muscle spasms, etc.

Definitely weird that how our own bodies respond to supplements can change over time. May be cofactors, but I also think may just be overall body chemistry, immune health, etc. Like how someone can develop a new allergy, or have an old one go away.

 

[Husband of]

5. Taurine - 1,000 mg at bedtime, maybe helps a little with getting to sleep and with sleep quality.

Hi, interested in this. Without it, what are your experiences that prevent you from getting to sleep?

My wife has been having trouble sleeping, she gets anxiety every evening without thoughts, just feeling of fear. Then when she tries to go to sleep It's like Her brain won't stop thinking but also like she can't think (or has no control). Sometimes she will get to sleep or almost get to sleep but then gets a sudden intense fear, and because she is so fatigued and fogged she can't rationalise or think her way out of it, so she feels stuck in it.

Does that sound at all familiar? Lots of people talk about anxiety issues and sleep issues but it seems we are often talking about different things. So I'm trying to find who might have the same experiences as my wife and get any advice I can from them.

 

[SpacePenguin]

My wife has been having trouble sleeping, she gets anxiety every evening without thoughts, just feeling of fear. Then when she tries to go to sleep It's like Her brain won't stop thinking but also like she can't think (or has no control). Sometimes she will get to sleep or almost get to sleep but then gets a sudden intense fear, and because she is so fatigued and fogged she can't rationalise or think her way out of it, so she feels stuck in it.

Urgh, that sounds awful! I'm fortunate I don't get uncontrollable fear like that (or only very rarely from particular circumstances), but I do lie awake with my brain unable to shut off and just taking a long time to feel sleepy. It's not quite like anxious rumination in that the thoughts themselves aren't problematic, rather their timing is the problem. Generally, I would not say that I have anxiety. I'm not sure if the taurine alleviates any of these symptoms. I think the taurine is helpful from looking at the data I keep of how easily I fall asleep when I go on and off taurine. Falling asleep is just a little easier and quicker on taurine. Conceivably, taurine might help with uncontrollable fear (especially where there's a taurine deficiency). It does seem to help some people's anxiety. But my intuition is that your wife's fear sounds like too serious an issue for taurine supplementation to help much. Taurine is needed for transporting magnesium (as I understand). It's activates GABA receptors. Some recent research has found Long Covid patients tend to be deficient in taurine: https://www.healthrising.org/blog/2...-syndrome-fibromyalgia-metabolic-derangement/

I'm probably not the best person to recommend supplements to help with anxiety and fear since I don't experience those symptoms much myself. Off the top of my head, I know people and have read of people with those symptoms reporting good things from NAG, saccharomyces boulardii, ashwagandha (withania somnifera), and l-theanine. Though none of them had a noticeable effect on me.

...because she is so fatigued and fogged she can't rationalise or think her way out of it, so she feels stuck in it.

My own experience of dealing with thoughts that won't turn off, trouble getting to sleep and (on rare occasions) anxiety/fear is that rationalising or thinking you're way out of it is generally counterproductive. The best thing is just to let it happen, go with it, try and focus on something else like your breath. Learning formal meditation can be helpful for developing that skill. In terms of sleep, I find it helpful to give up TRYING to get to sleep and instead just focus on enjoying the resting.

 

[YippeeKi YOW !!]

The best thing is just to let it happen, go with it, try and focus on something else like your breath.

That may work with mild anxiety, but with the kind of anxiety that a lot of ME-ers suffer, it would be a lot like boiling your arm in oil while concentrating on an ice cube. Ask anyone whose tried to meditate themselves out of a serious anxiety/panic attack ....

Taurine is needed for transporting magnesium (as I understand)

Not for transporting magnesium, which gets around just fine on its own, but taurine does help in maintaining an electrolyte balance at the plasma membrane of cells, and if you're deficient in it, it could result in increased cellular calcium (which can contriute to an overload of glutamate, which could increase anxiety resposes) and reduced magnesium, which as you noted, works on GABA and can offset the effects of excess calcium at the NMDA and AMPA receptors.

I had excellent response in dealing with anxiety and sleep issues with magnesium glycinate, small amounts of melatonin, and moderate amounts of Vit C, all in one dose, repeated at intervals thru-out the day ....

ashwagandha (withania somnifera),

Absolutely did me in .... ashwagandha isnt as benign or accommodative as you'd expect an adaptogenic to be, at least it wasn't for me ....

saccharomyces boulardii,

Had close to zero luck using probiotics for sleep or anxiety, but we're all different ....

and l-theanine.

Made me want to rip off my skin and knit a nice little shawl out of it. If your system is deficient in magnesium, the theanine, L- or otherwise, can backfire .... but again, we're all different.

Sadly the only way to know is to do a lot of research, swallow hard, and start experimenting with whatever seems reasonable to you, or resonates with you as a possible solution based on the outcome of studies that you've read, or other people's experiences under similar circumstances .....

Good luck @Husband of .... I now how miserable that can be and I hope you find an answer ....