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

[Jo86]

I was on the verge of ordering Lion's Mane but then I read all that stuff about how it can permanently mess you up so uh...

I've never tried any supplement (or medication for that matter) that's really changed anything. I need to try something strong enough that I might notice a change. Like taking a multi-vitamin for eg, that won't actually change anything. Or maybe like 0.1%.
My biggest problem is the immense brain fog.
Any suggestions ? Thank you.

 

[heapsreal]

Look into
CoQ10
N-acetyl-cysteine
Alpha lipoic acid
Melatonin for sleep plus a good antioxidant.
That's a good starting point for cfs. No supplements that are big game changes but they can help reduce oxidisation and inflammation and reduce further damage.

The big things are pacing yourself and getting good sleep. If you have the money find a good dr who will test you for chronic infections and immune issues as well as optimise your hormones.

Unfortunately there's no magic bullet but if you do a number of things that give you 5% improvement each, it will add up.

Good luck

 

[Wishful]

No supplements that are big game changes but they can help reduce oxidisation and inflammation and reduce further damage.

AFAIK, there's no compelling evidence that antioxidants are beneficial for ME in general. They may help some people, and make others worse, and probably do nothing for the majority. Antioxidants tend to make my ME worse (and peroxynitrite scavengers even worse). I seem to recall an earlier thread about antioxidants being harmful for some people (normal, healthy people), so it's not as simple as 'taking extra antioxidants is always good for you.'

My suggestion: try herbs&spices, and other foods that you haven't already tried. Pretty much everything is a potential ME treatment for someone. Theories might make a strong-tasting spice a better gamble than potatoes, but doesn't guarantee that potatoes won't be an effective treatment for someone. Unless money is no concern, I suggest starting with cheap, convenient experiments before trying the expensive and possibly harmful ones. I wouldn't consider Lion's Mane to be significantly more likely to be effective for a given individual than an herb or spice picked randomly off the grocery shelf.

The other suggestion for minimizing brainfog is to first figure out all the foods and other factors that add to the severity. I've just cut a number of foods from my diet, and that's reduced my level of brainfog. Which foods we react to changes over time, so we need to occasionally retest the ones we previously judged to be safe. I never expected dietary fibre to cause brainfog, especially after years of a high-fibre diet where it didn't cause problems.

 

[Mary]

@Jo86 - I've read that B12 has helped many ME/CFS sufferers with brain fog. I just realized something - I don't have brain fog, though I definitely have ME/CFS. However, my doctor had me taking B12 (and sometimes doing B12 injections) for many years before I came down with ME/CFS. That might be the reason I've never suffered from brain fog, taking B12 for so long.

There's not a one size fits all supplement program for persons with ME/CFS, but here's what has helped me the most - and please only start one new thing at a time. Otherwise you won't know what is doing what to you! Also, if you have some sort of refeeding syndrome reaction as I did with methylfolate and thiamine, if it's mixed in with everything else, you'll have no way of knowing what's going on.

d-ribose - I took this for 12 years or so, it helped noticeably with energy

methylfolate - nice boost in energy with this. However, a few days later it then caused my potassium to drop suddenly, causing severe fatigue, but because I had read about this possibility, I started taking potassium and titrated up to 1000 mg a day over a couple of days, and the severe fatigue went away. I've had to take potassium every day since 2010, but it's worth it because the methylfolate helps me a lot. I had to experiment to get the right dose of methylfolate, we're all different.

B1 (thiamine) - this made a big difference in my energy. I still remember the first time I took it. I had read about people getting a lot of energy with B1 which is why I tried it. However, again, a few days later I was hit with severe fatigue. But this was different than the methylfolate fatigue - potassium did nothing for this fatigue. It took me a long time to figure it out, but finally I realized it was the same process - refeeding syndrome - which caused the fatigue. The B1 was depleting my phosphorous - hypophosphatemia is the hallmark of refeeding syndrome. So I drank several glasses of kefir - high in phosphorous - and sure enough, the awful fatigue then dissipated. I was so glad to discover this, because it meant I could keep taking the B1 which made me feel so good! I thereafter found a phosphorous product, easier than drinking a lot of kefir, and I have to take the phosphorous a couple of times a week.
The
B6 - Nutreval testing showed a severe B6 deficiency which shouldn't have existed because I'd been taking a B complex forever, but there it was. So I added in more B6 and it helped my energy a little.

l-carnitine - or acetyl-l-carnitine - at one time this helped my energy a lot, worth an experiment I think

branched chain amino acids - these cut my PEM recovery time by more than half. I've been taking about 4000 mg a day since 2014 (or 2016?), anyways, if I cut back, my PEM recovery time starts to increase again so I just keep taking them. I wouldn't be without them. They also help my energy some. And they've helped several people on the board here with energy and functioning. I've been taking this product: AmazonSmile: Optimum Nutrition Instantized BCAA Capsules, Keto Friendly Branched Chain Essential Amino Acids, 1000mg, 400 Count

These are the main ones which have helped me with energy but if I were you I'd start with the B12 and see how you do. B12 can cause the same potassium deficiency that methylfolate did with me. If you're deficient in B12 or methylfolate, your body adapts to subpar nutrition and thus uses less potassium to function. When you remedy the deficiency, cells start ramping up their activity, increasing the need for potassium, and thus inducing a potassium deficiency. People with ME/CFS seem prone to refeeding syndrome. Here's an article which explains more about refeeding syndrome: Refeeding syndrome: what it is, and how to prevent and treat it - PMC (nih.gov)

Member Freddd here has written a lot about potassium and methylation. Also, here's a post which explains how people with ME/CFS can have low intracellular potassium despite normal blood levels: Why is potassium supplementation needed in methylation treatmt? | Phoenix Rising ME/CFS Forums

fwiw, my functioning today is quite a bit better than 24 years ago when I first got sick - I have more energy, stamina etc. I've done a LOT of experimentation, not all of it with good results of course, but overall I am much improved - and I take a lot more things than listed above, but these might be a good starting point.

 

[Husband of]

@Mary im interested in this refeeding syndrome; having looked briefly at the link you posted, I don't understand why it occurred for you or why you think it would occur for others. It sounded like it occurs in the malnourished and starved. If you have the energy and patience to do so, could you please elaborate.

i was also fascinated by your remark that you don't have brain fog. Do you have pots, or other dizziness symptoms (not necessarily associated with postural change eg standing up)?

 

[Jo86]

If you have the money find a good dr who will test you for chronic infections and immune issues as well as optimise your hormones.


Good luck

Thanks. Well I've tried a whole bunch of doctors over 16 years, so far there are just pieces that show up in the tests but no clear diagnosis of one particular, obvious thing. Which has led lots of docs to tell me it's all in my head, but I can feel physically it obviously isn't the case.

 

[Jo86]

..

Hmm. Seems like I've got some online shopping to do.
Oddly enough, I've had this CFS condition since 2006, and it's gradually gotten consistently worse overtime, and although I've tried a million things... I think I just got organically tired of trying stuff and focused on my daily life more. I just recently realized: wth am I doing, I need to fix this. Hence, here I am. It's strange, most ppl I've read and followed online have said something helped, at some point. Nothing ever helped with me. Tried antibiotic therapy for months and months, a load of treatments from doctors who knew what CFS was... I mean there HAS to be something that can help, I'm not magically ill or anything. There's got to be an organic cause somewhere. Chronic infection, gut health, brain inflammation, wtvr...

 

[Wishful]

I mean there HAS to be something that can help, I'm not magically ill or anything.

Yes. I've been lucky to find several things that helped, even though I have no idea how they managed it. Iodine, and its various thyroid hormones, do so many things in the body so there's no realistic way of figuring out which mechanism was involved. However, it had fairly major effects on my ME symptoms in general, and triggered temporary remission several times, so pretty potent stuff ... for me. Several other unrelated chemicals also snapped my ME to the "off" state temporarily. So yes, ME can be switched off by chemicals, and other chemicals can interfere with some of the individual ME symptom mechanisms.

You've been 'rolling the dice' and getting snake-eyes every time. However, that doesn't change the probability of getting something better on the next roll.

I still like the idea of someone finding an effective treatment in some flavour of jellybean (all sorts of weird chemicals in those). Maybe buying a bag of mixed flavours, including all the weird ones available, will boost your spirits. Even if none of them work, at least they taste better than methylfolate or Lion's Mane.

 

[Jo86]

Even if none of them work, at least they taste better than methylfolate or Lion's Mane.

I would be willing to eat literal trash if it meant I could feel any difference ! Every day. As you say, no luck with the draw so far. But that's just how it is. It's not significant in and of itself. Something in there (in my body) is messed up, therefor something out there can help with that. It's just chemistry. Come to think of it, I did suck at chemistry at school.

 

[Wishful]

Something in there (in my body) is messed up, therefor something out there can help with that.

The "in my body" part caught my attention. I believe that ME's core dysfunction is in brain cells. That means that chemicals that pass the BBB are more likely to work (on overall ME symptoms, rather than one or more downstream ones) than ones that don't. Bypassing the BBB, via sublingual or nasal methods might also make it more likely to work. Thinking about it that way might help in deciding which chemical to try before another.

I'd eat horrible or disgusting things too if it would really help.

 

[Alvin2]

Acetyl Carnitine helps with my cognitive issues, slightly.
Enough that i keep taking it despite the cost.

 

[heapsreal]

so far there are just pieces that show up in the tests

Interesting. Can you elaborate here?

 

[Wishful]

@Jo86 , have you tried figuring out all the things in your diet that might be contributing to your symptoms? My recent problem is dietary fibre, and it doesn't take much to seriously increase my brainfog. Fibre is one of those things that most people probably don't think about in avoidance diets. They might avoid gluten-containing grains, but eat other fibre-rich grains, or nuts or veggies. Avoiding fibre isn't easy. A meat-only diet should do it, and I'm wondering how many of the reported improvements from a ketogenic diet are from fibre-avoidance rather than carb-avoidance.

As with all things ME, just because fibre avoidance works for me, it doesn't mean that it will help you, but it is at least a possibility, and not all that difficult or expensive to try. For me, cornstarch, eaten as pancakes, is my 'minimal problems' food. Sugar probably has even fewer nutrients, but is less satisfying than starch.

 

[Mary]

im interested in this refeeding syndrome; having looked briefly at the link you posted, I don't understand why it occurred for you or why you think it would occur for others. It sounded like it occurs in the malnourished and starved. If you have the energy and patience to do so, could you please elaborate.

@Husband of - I should have mentioned PR member Freddd in my above post - he's where I first heard about the possibility of becoming deficient in potassium when starting methylfolate and/or B12 - he talks about it in terms of refeeding syndrome. You can do a search at the top of the page for posts referencing "refeeding syndrome" or "potassium" by Freddd. It was a game changer for me. Without being aware of the possibility of my potassium tanking when starting the methylfolate, I would have had to stop it quickly, because the fatigue which hit a day or two later after the initial energy increase was so severe, I couldn't keep it up. Check out this post - he's written about it a lot. Also, read the post I linked above entitled "why is potassium supplementation needed in methylation treatment" - well worth a read.

And you're right - ordinarily one thinks of starvation and severe malnutrition in connection with refeeding syndrome, and not apparently healthy looking people like many with ME/CFS. I had one doctor basically scoff at me when I brought up this possibility. But if you do some reading of posts here re potassium, and there are a LOT of them, you'll find it's extremely common for persons with ME/CFS to develop hypokalemia very quickly when starting methylation supplements. This is not a normal thing to happen for healthy people, but we are not healthy people, appearances notwithstanding.

The big question in my mind is, why do people with ME/CFS develop refeeding syndrome when starting methylation, or starting thiamine, etc.? Researcher Chris Armstrong believes that our cells are in a state of starvation, regardless of what we look like. See this article from Health Rising, which states in part:

An ME/CFS cell that feeds voraciously on all sorts of substrates, on the other hand, might be working overtime simply to stay alive. It’s possible, in other words, that our cells are starving in a field of plenty. In an effort to compensate for a broken energy production system, they may be taking in more resources than usual. That would jive with findings from the early metabolomic studies which uncovered a similar profile to that seen in starvation. Armstrong reported that the “starvation” finding seems to be holding up and corroborates well with Fisher’s recent finding of inefficient ATP production in ME/CFS.

i was also fascinated by your remark that you don't have brain fog. Do you have pots, or other dizziness symptoms (not necessarily associated with postural change eg standing up)?

Did you note what I said about B12? B12 has helped many with brain fog and I'd taken it for so many years, it's possible that's why I didn't develop brain fog - but that's just a guess.

I have had mild symptoms of pots. e.g., if I have to stand for any length of time, I start to get jittery after several minutes and just want to sit down, badly. If I'm forced to stand for, say, longer than 10 minutes, I can get into trouble - it makes me crash easier. But these symptoms are mild compared to many here. Overall I think I've gotten off lightly in the ME/CFS roll of the dice. But there's no doubt I have PEM, impaired immune functioning, sleep difficulties. But I've also done a TON of experimentation. My digestion used to be really screwed up and it's not any more. I used to detox at the drop of a hat, and that doesn't happen any more either. This is because of things I've done to remedy these conditions which were indicated by muscle testing by my chiropractor. This has helped me the most of anything I've tried - it's helped indicate what I need to do. Without it I'd be much worse off. If you want more info on muscle testing. let me know. It's been invaluable to me.

 

[Jo86]

I'd eat horrible or disgusting things too if it would really help.

But...don't you already do that if you live in Alberta ?
Kidding Couldn't help myself, it was right there.

Yes you're 100% right, the way forward is alternative means of administration, or going around traditional methods. Nasal, etc. And the part about the brain (and BBB). The way I feel, the brain fog, inability to deal with real live social situations anymore, highly hindered speech ability, cognition in general... I mean I realize the whole notion that the gut is the second brain and all, but I really think there's a hard limit to what diet can achieve when the symptoms are this deep, persistent, getting worse overtime, and that centered around brain functions !

Interesting. Can you elaborate here?

ACTH was always high, very high thyroid antibodies (but regular T3 T4 TSH) so a Hashimoto's type profile (tried that thyroid med, didn't feel a thing so I stopped),
Had those specialized autoimmune tests done in Celltrend lab Germany for anti adrenergic antibodies (alpha 1, alpha 2, beta1 etc...) and a few were "at risk" and a couple 'positive'.
Had a specific PetSCAN done that showed results "in favor of" Macrophagic myofasciitis (MMF), never followed up on that (my health book was incomplete for further investigation according to the specialist Dr. in Paris...).
Gut screens from alt labs will always show I've got either fermentation down there, or am lacking good bacteria... just crappy intestinal health.

But I can't string together the labs, to make a cohesive complete puzzle from all the pieces.

 

[Jo86]

@Jo86 , have you tried figuring out all the things in your diet that might be contributing to your symptoms? My recent problem is dietary fibre, and it doesn't take much to seriously increase my brainfog.

I haven't, actually. From everything I've tried diet wise. Well I did the carnivore for like 3 weeks. No change. Went back to eating plants again. But: what symptoms would you get, if it really is the fibers ? Like, soft stool, hard stool, not going enough, going too much (this one would be the standard here, as fiber typically makes you go) ?

 

[GreenEdge]

Vitamin B3 Niacin, also known as nicotinic acid. Not the usual B3 supplement niacinamide.

Niacin makes the blood vessels dilate, makes you blush. It stings a little like sunburn and that effect usually lasts for about 30 minutes. I use it to temporarily make headaches or chest pain go away and I sometimes take before aerobic exercise to improve blood circulation. It has been used for over 50 years and has a good safety record. I take 100mg with a glass of water on an empty stomach. Consult wikipedia for more information.

Taking Niacin will slowly deplete Methyl groups over time making Niacin less effective. Another supplement, TMG (aka. Betaine) provides Methyl groups so will reverse that issue. You can take them both together.

Also, just sipping hot water seems to help with digestion and possibly constipation too. Consuming cold drinks when you're not hot, has the opposite effect.

 

[Wishful]

But: what symptoms would you get, if it really is the fibers ?

What it started giving me a few months ago was bad brainfog and lethargy. My neuropathic pain started up again too. Also, since then my muscles have felt weak and easily exhausted, which is a new symptom for me. I wonder whether it's the lack of short-chain fatty acids, which might be needed for the muscles. Acetate didn't help, but I might try to find a source of butyrate. I couldn't find a source of propionate.

I do miss the other benefits of fibre, when it's time for a BM.

 

[GreenEdge]

The myth that fiber cures constipation (video). Ask yourself who benefits?

If you take something that doesn't help yet you believe it will, you end up taking more and more. It's an endless cycle and whoever makes Movicol must be making a killing because it's used a lot in hospitals. Metamucil is better, but be sure to consume a lot of water (if it's not working consume more water) because it can cause blockages that have to be surgically removed. If you mix it in a glass and let it sit for 2-3 minutes, it will start to gel up. As a test to see if you're taking it with enough water, leave it longer so you can see what it turns into.

Fiber irritates the digestive tract encouraging the body to speed up waste removal to get rid of it. Fiber also makes you fart because the bacteria that feeds on it produces gas.

A better way to treat constipation is a supplement like Magnesium Citrate.

 

[Jo86]

The myth that fiber cures constipation (video). Ask yourself who benefits?

ugh you are MESSING me up right now ! I'm a nutrition student and all we ever read about is water soluble and non-soluble fibers, how they help with bowel movement and the various diets associated with them. You may have a point and thx for the video link.

Thanks to all for your informative posts btw.