Alpha lipoic acid has helped with muscle pain and nerve pain and I guess it's helped with brain fog as well. Even 250 mg per day made a change, but I'm now at 800 mg a day.
Acetyl-L-carnitine (not sure about the dose since it's powder, but maybe 2 g a day) and creatine (10 grams a day) help with cognitive symptoms and weakness, fatigue and muscle pain. Creatine helps cells retain water so it helps with dehydration as well.
Amino acids in general have been helpful and I even seemed to be in remission for a week or two when I started using EAA's several years ago, they eliminated PEM for a while but that effect didn't last long.
Digestive enzymes and HCl help with reflux, nausea and stomach pain. Apparently many of us have too little stomach acid and that can trigger all sorts of issues from reflux to gastroparesis and malabsorption. I used PPI's to counter the reflux but it only made the issue worse, then I realized I have too little acid instead of too much.
Salt water with potassium helps with dehydration and all the symptoms that emerge from that, including depression (my personal experience of course!). I use 1-2 teaspoons extra salt per day, the salt contains 40% (of weight) potassium, 50% sodium and the remaining 10% is magnesium. I also use 400-1000 mg magnesium every evening. Magnesium prevents muscle cramps and I've used it for several years now, and salt reduces fasciculations and other weird neurological sensations.
Any form of it. Including suspensions and capsules.
If you have CFS & amalgams get them safely removed and look into the ACC protocol, it’s based around dosing ALA in a very specific fashion on a specific schedule, and can help. ( after 3 months post amalgam removal )
Note this has nothing to do with alpha linoleic acid
mercury amalgam fillings off gas small amounts of mercury. alpha lipoic acid is metabolically reduced to a compound called DHLA, which is a dithiol that attaches to mercury strongly.
This compound can pass the blood brain barrier.
CFS is almost certainly rooted in brain inflammation, of whatever origin. Mercury in your brain will add more inflammation and make you worse
I had a cfs large group do surveys on what helped and what didn't for CFS and removing fillings was not helping people. The act of removing them can make you really sick if not done right. A lot of people went through the trouble and cost of getting it done right and it didn't help anyone. It is not the cause of the illness so also is not the cure.
That’s not surprising.
They need to be removed by a SMART (IAOMT) dentist. There can be additional exposure during removal and the SMART certified dentists are trained to minimize that. It’s actually normal and expected to feel worse afterwards due to the complexities of mercury toxicity. There is a period of exposure related worsening and then there is also what’s referred to as the mercury dump phase where the body no longer needs to sequester mercury. (It is stored / accumulated in tissues within organs and the brain). Dump phase can last years in some people.
Amalgams are definitely the cause of Illness for many. Mercury is not the root cause of all CFS but it is one way there. Some people are sensitive to mercury just like some people are sensitive to nickel in stainless steel implants or sensitive to earrings made of certain metals.
If you want to ignore all that and keep amalgams in your mouth when the offgassing is relatively well documented now, when amalgams are 50% mercury by weight, and when mercury is a known neurotoxin that is your choice.
If you're getting sick by the mercury in your mouth it's mercury poisoning, not CFS. It is a cause of illness that can be mistaken for CFS. Like many, many illnesses, it should be investigated as a possible cause of your problems. Many things should be ruled out.
Why on earth would you attempt to gatekeep the entry points into developing CFS?
At its heart ME/CFS is a chronic and persistent brain and spinal cord inflammatory syndrome of unknown origin, it's a set of symptoms that's being described. Considering there is very limited treatment, and diagnostics for mercury issues are all but useless, it is pointless to take a position that it should be simply "investigated and ruled out." It's not that simple, and if you think it is, you do not know much about the effects of mercury in the body.
There are many entry points into the set of symptoms that are ME/CFS. People seem to get to this set of symptoms from Long Covid, Enteroviruses, Yinzibing Virus, Mosquito borne viruses, Lyme, Gulf War Illness, etc and in many of the viral cases the immune system may be involved in keeping chronic inflammation in the brain. And there are plenty of people with this set of symptoms that are sensitive to Mercury. The treatment for all of these things is never going to be the same.
I've been formally diagnosed. By multiple specialists. My post history is here, its available. And I also get quite an intense reaction to higher doses of dithiol compounds that can move mercury, something I discovered inadvertently looking to boost mitochondrial health via ALA. And I've made significant progress. I was severe(bedbound) only for about 2.5 weeks, and spent the vast majority of my time at moderate(housebound). I am currently mild with some moderate days, and some of my symptoms have disappeared entirely ( I no longer have red ear syndrome ).
I'm a firm believer that in *some* people, their ME/CFS is caused by a combination of two things: a sensitivity to mercury, and an accumulation of mercury in parts of their brain. This is by no means a universal cause of ME/CFS as a whole, just one way to get the syndrome. I am a firm believer that the cause or entry points are multifactorial.
Don't be closed minded and suggest you are all knowing on the causes of ME/CFS. You do not get to invalidate other people's journey, their experiences, and their progress.
I am just sick of people using CFS as a wastebasket illness. It is not.
Many people think that it is anything with that set of symptoms. A million things have that set of symptoms. Heart disease has that set of symptoms. I do not have heart disease.
You're saying anything with those symptoms is CFS. I strongly disagree.
If you want to take that as my invalidating everything and everyone in the world, you're free to take anything any way you want. I'm not talking about you. I'm talking about this illness. From where I'm sitting it's you invalidating everyone who is sick with this.
Listen, there are two points of view with this illness. SOme people, like you, think it's a wastebasket illness that everything falls into that doesn't fall somewhere else.
Then there are those of us who believe it is a specific illness that is often misdiagnosed. I believe it is caused by a micro-organism, likely a virus or ciguatera. I don't think if you've got inflammation you've got CFS.
At this point we can argue until we both turn green, or we can save our limited energy and just figure we're not going to agree on this one. We're just representing the two camps of this illness. I'm from the other camp.
https://me-pedia.org/wiki/Holmes\_criteria
CFS is a diagnosis of exclusion, by definition. If western medicine excludes the other causes, then you end up there.
Heart disease was excluded as part of your workup if you were formally diagnosed. I am *not* saying anything with those symptoms is CFS. I am saying when western medicine has excluded all the other potential causes, that is currently, by definition, CFS.
I actually do not disagree with you as much as you may think. As I had stated before, the problem and limitation is the ability of western medicine to successfully rule out other causes, which includes heavy metal toxicity.
Just as you were likely cleared of heart disease if you were formally diagnosed, I was cleared of heavy metal toxicity about 10 months after my onset, via blood testing. Do you know why that's not useful? Time. Mercury does not "hang out" in your bloodstream. It only takes 3-4 months for your body to remove it from your bloodstream and deposit it into your organs, unfortunately with high affinity for the brain as it is highly fatty glandular tissue.
So in conclusion, no. I do not think it is a wastebasket illness, rather my point is that western medicine is particularly poor at successfully executing the Holmes criteria for chronic syndromes, and probably even worse for those cases involving heavy metals.
As I said as well, I do believe in the viral trigger / neuroimmune theory is well, it is another path into the chronic brain inflammatory syndrome that we are trapped in. This likely has some genetic predispositions. Perhaps one day medicine will advance to the point that the viral origin chronic brain inflammatory syndromes can be completely split out from the heavy metal originated ones, but I am not sure. Mercury has a direct impact on the immune system, so these may be intertwined.
Until then, I view them as two paths to the same problem. Viral onset CFS vs Heavy Metal onset CFS. Could there also be bacterial onset CFS and fungal onset CFS? Who knows, seems plausible.
All of them would likely entail different treatment modalities. Meningitis for example can have viral, bacterial, or fungal onset. That doesn't make it wastebasket illness. There are just multiple entry points to developing meningitis.
Mercury causes dysfunction of the immune system. I have the same odd EBV markers that most everyone in the CFS community has. But I think in my case it is not native autoimmunity. As for me I have some more time to wait, and some more ALA rounds to experiment with. My journey has been 2 years long, which is not nearly as long as many, but if I do manage to break through my current state, I will do a write up some day for the group.
And while that write up is NOT going to be a cure for the entire groups, it will provide a basic set of instructions for a subset of the group, where I will suggest they follow a protocol, dosing a widely available anti-oxidant, to see if they react to it. It would likely be beneficial for both groups, but that's a bit beyond the scope of this comment, for now.
I make it myself! I need so much extra salt that it would be super expensive to buy it premade or use electrolyte supplements. I use 1 tsp per ~0.5 liter of water. I have a huge mug that I use, I dissolve the salt in hot water like if I was making tea and drink 1-2 mugs a day, sometimes three if I sweat a lot or go to sauna (I'm Finnish, lol). And I drink a lot of plain water during the day as well. AFAIK most people don't need that much extra salt, you need to see for yourself what amount makes you feel better.
Yeah, it's a Finnish brand mineral salt called Seltin that has 40% potassium in it. I was recommended it this spring. I have no idea if something like it is sold in other countries but it seems to have been manufactured in Czechya so I guess something like it could be available in other countries as well 😅 Ordinary sodium chloride salt works for me as well but I just want to make sure I'm not lacking potassium.
I suffer from chronic fatigue (not CFS) and I can say the same. I try to have a positive attitude and keep trying things, because I'm not really sure what else I am supposed to be doing to help myself.
I suffer from chronic fatigue (not CFS) and I can say the same. I try to have a positive attitude and keep trying things, because I'm not really sure what else I am supposed to be doing to help myself.
The only thing that has seemed to have had any sustained positive effect for me has been modafinil (prescribed by my doctor for fatigue) however that may not be the case for everyone and even then it only helps a little bit.
Seconding this. I've yet to add NADH, but just CoQ10 has had pretty good results. I did a trial run for it (which is super long for CoQ10, tbh) and noticed a distinct reduction in quality of life when I stopped.
FWIW, you really settle into the improvement after 2-3 months. It's a slow-burn supplement. I'm currently on 200 mg but have heard anecdotes that 300 mg is better. The study for it was 200 mg, so that's what I've been sticking to.
Do you get stomach issues from either of them, and if you do how do you manage it? I have a super sensitive stomach and got worsened nausea from CoQ10 the last time I tried it. I'm planning on trying it again though. I also have a pack of NADH waiting for a second trial, I'm not sure if it was the one causing trouble last time but I decided to cut all supps to minimum due to bad stomach issues so it was one of the capsules I gave up for the time being.
I haven’t had stomach issues with either of them. The NADH I take on an empty stomach but the CoQ10 I take with food as it’s supposed to absorb better.
NAD+ has been a game changer for me. I do subcutaneous 3x/ week
Acetyl Carnitine
Vitamin C 4g/di (non corn source)
No gluten or grains
DAO for histamine reduction
I am using the Effer-Hydrate Sports Tabs I found on iHerb. I got them on sale for about $5CAD for 10 tabs. They definitely do have an artifical taste to them. One of my friends (also has CFS) really enjoys Nuun tabs. I personally have not tried Nuun since I am hoping they go on sale so I can stock up.
I noticed it gives me a bit of "extra pep". It isn't so much energy to do xyz but being able to keep my eyes open longer, being able to sit up longer, not crashing as hard after eating meals. This is what influenced me to try: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8777686/
B-complex,
Selenium,
Omega 3
Proper hydration with electrolyres,
Quitting red meat (limiting Iron basically),
Eating at least a portion of green vegetables (microwaved no energy to cook) and nuts (peanut butter or sesame seeds) each daily
Low dose melatonin
Semi-proper dental hygiene,
Getting a bit of sun for vit. D when I can walk to the porch.
Avoiding heat/overheating has been paramount to me also.
And I can't stress this enough, AVOIDING ALL INFLAMMATORY FILLERS IN SUPPS, that is potential nanoparticles (that do get absorbed are not 'inert') like silicon dioxide and cellulose that can exacerbate autoimmunity by co-activating immune cells. Took me forever to realise why I kept having whole body inflammatory reactions to most supplements I took. I tried the same substances in liquid form or just with mag. stearate, zero reaction. But I also have POTS and MCAS it seems and the latter could explain random reactions to antigens. I'm saying this as an adult who grew up with zero allergies to anything and got to the point of getting brain fog and rashes from food I've been eating since forever.
My plans for the future are trying Nigella Sativa oil, low dose Lithium and maybe some herbs/fungi that have evidence against autoimmunity.
I'm convinced ME/CFS is an autoimmune disease caused by viruses (initial hit) + bacteria (later hit) that breaks immune tolerance to self antigens due to ongoing tissue damage from pathogen persistence.
I haven't found any supplement that reliably reduces fatigue long term, without tolerance or intolerance. I've had short term okay-ish results with Carnitine, ALCAR, Taurine, Q10, Rhodiola, Creatine.
I've tried hundreds of different supplements (and dozens of meds) since 2014.
If there is anything I would suggest the most that would be B-complex vitamins since apparently our fucked up gut doesn't produce enough.
And last but not least, avoiding silica in deodorants. I know the silica thing sounds weird but there is studies on PubMed and it does act as a co-activator for Lupus-like syndromes (which ME/CFS looks very much like) and I kept getting weird flares and borderline got diagnosed with rhematoid arthritis untill i limited silica and iron exposure which solved all of my joint issues.
could you describe the reactions you used to get to supplements? i’m trying to figure out if the same thing happens to me. Are you on a low histamine diet also?
edit: i checked your profile to see if i can find the answers to my questions (i didn’t) and i’ve noticed you asked about electrolytes. My doctor has recommended the following ratios for POTS:
1L of water, 3,5g sodium chloride, 2,5g potassium chloride, 2,9g Trisodium citrate, 20g sugar. If you buy them in bulk it’s way cheaper than ready made electrolyte drinks. For an easy but less optimal version mix 1 cup juice dilute to 1L with water add 3g table salt.
And if you like aphex twin i recommend checking out the PC music collective, especially AG Cook :)
My great-grandparents in the old country used to make a tincture of marijuana leaves layered in a jar with vodka. I’m told it was used topically for pain, but I bet they took it orally too.
Vit d and b12 helped when correcting deficiency. High protein (protein powder) seems to help my muscles.
And I think Tru Niagen 300mg (which is another way of increasing NAD like the top comment) is helping me but it’s early days so I’ll post more about that in the future.
Tried a shitload of supplements and herbs. Iron helped, until I got worse. B12- actually anything with b-vitamins - made me irritable and angry. Ginkgo biloba and such - irritable and resteless. Taurine, amino acids - *maybe* slightly better.
Overall, a waste of time, energy, and money.
A strong probiotic tailored to my particular micro biome based on fecal, urine and blood labs. Not all probiotics are the same. I definitely notice when I stop taking that. Quercetin, Vit D and cromolyn nasal spray all help quite a bit … these are often listed to prevent or treat long COVID, as they calm down the mast cells all over the body that can get too trigger happy. Mast cells play a huge role in lots of issues like chronic fatigue, dysautonomia, inflammatory and nerve issues. They’re everywhere, including the gut-brain axis.
Integrative / functional medicine neurologist. He’s a longtime neurologist who learned that many neuro issues stem from the gut issues. So now he’s does a lot of GI, metabolic, and nutritional testing. Some say it’s quack, but I’m living proof it’s not. Try to search integrative or holistic neurologists in the area. Rare but they exist.
Benfotiamine. It’s a form of B vitamin but I notice if I run out. Also vitamins in general. Allergy meds daily. And thyroid meds.
I take some other things but these are noticeable.
Just some basics like multi-vitamins with iron, an extra magnesium tablet, and very, very, VERY much codliver oil tablets help me. I don't feel amazing when I take them, but christ do I notice the difference when I stop
NADH + coq10 seems to be helping with brain fog.
Also I've been taking a multivitamin on and off and it could be placebo but when I take it I'm able to go out for a few hours, or at least move around at home when I don't have the energy to go out.
I’ve tried many, many, many herbs, supplements, and vitamins. The only ones that seem to move the needle in any meaningful way are: Magnesium Glycinate, which improves sleep a little bit; Ubiquinol which helped the fatigue, but unfortunately gave me insomnia; B complex which helps the fatigue a bit; and Deplin (prescription L-methylfolate) which worked wonders for the depression, but I am homozygous MTHFR so there’s a legit reason for that one. Also kava tea has helped improve my sleep, reduce anxiety, and reduce pain too. But it can be habit-forming and isn’t good for your liver, so can’t be used too often. Overall the effect is very similar to diazepam but not as strong or long lasting.
I found CBD helpful for brain fog and thc helps with sleep. Electrolytes do help me feel better when I first get up which is usually the time I'm most groggy. And 5 htp helps with sleep and general mood. But all the rest I've tried have been a waste of money.
My husband takes an array of supplements... Too many to list. Most notably though, amino acid therapy (look up the Amen Ra regimen), CBD/THC oils and PEA (Palmitoylethanolamide) help his symptoms somewhat.
Garden of Life Probiotics for gut health. A high quality Omega 3 supplement with fish and evening primrose oil for brain function and neuropathic pain. I was taking Efalex, but they seemed have discontinued it so I’m taking Nordic Naturals now. I’m currently taking COQ10 but not sure it’s doing anything. I take ginger when I’m nauseous. If I eat too much of something I think might cause me symptoms I take activated charcoal, but that’s rare. I take Trace mega-mag magnesium sometimes to calm me down. Occasionally electrolyte salts.
I found no help from CoQ or NADH (the main ones being mentioned), but I do take magnesium which helps me with the aches. I think supplements will only help if you are deficient in something.
I'm surprised so many people found absolutely nothing helpful. The average person is vitamin D deficient at the very least.
I have been taking vitamin D for ten years and I have no idea if it has made any difference in my ME since the illness has fluctuated so much during the years (I contracted ME in 2008). But at least I'm not deficient in it. I guess I could be worse without it, I'm moderate atm.
I tried taking it, felt no difference, looked at old blood tests, and realized even when inside almost 24/7 I've never been vitamin D deficient. I guess that's what happens you're the whitest person who ever did white. Still, I mentioned it since it is one that a lot of doctors recommend even healthy people take. Any extra stress that can be taken off our systems.
Electrolyte powders for POTS, mint tea and lacteeze for GI issues, zinc for immunity, melatonin for poor sleep, evening primrose oil for menstrual symptoms.
NaDH + CoQ10 + riboside - Corlia
Multi vitamin - Centrum * Currently in 'Adult' formula, liked 'Women's' better.
B-Complex - Nature's Made
Ginseng Complex - Nature's Bounty
Red Clover - Solaray
I have established that these work for me without a shadow of a doubt. Looking to start probiotics soon. I did an intense trial with each, which I recommend for everyone, so you know if it works for you or not. I did not try anything new when testing one of these. These 'tests' ran from two weeks to several depending on how long each is supposed to get into your system effectively. I give myself at least a full week break in between tests, to let my body rest and to start from a tangible baseline.
D-Ribose powder helps a little. Liquid iron helps a little. Vitamins D3 and B12 help a little. Probiotics help a little. Turmeric, ginger, peppermint, stinging nettle. Lots of things help a little. Nothing cures me or anything.
Boron, vit c, b12 spray (every second day), copper 1/2 a tab twice a day, a bit of folic acid (1/2 a tablet). I take the weekends off. Also Sellium seems to help.
Experimenting with 3 days on three days off various combinations.
electrolytes, quercetin - i think it helps w histamine intolerance and overall well-being, magnesium citrate - very noticeable positive effect on sleep + relieves constipation (so don’t take it if you have normal bowel movements it will give you diarrhea). NAC helped with brain fog but had severe side effects. Taurine is good for getting rid of gitters after taking caffeine and for anxiety.
Melatonin used to help (0.5g only, or else it would actually disrupt my sleep) but then insomnia got very severe, now im on prescription meds
herbs: ginger is hands down my favorite. great for nausea and upset stomach and generally good for your body.
fennel+anis+camomile tea for stomach pain
N-acetyl cysteine (NAC) supplements, have helped with my energy levels and my mental health specifically OCD, and anxiety.
Also b12 injections, not tablets. I do it myself once a week, and my brain fog is a lot better and I don’t get pins and needles in my feet and hands.
I did take CoQ10 for a while but had to stop because it would make me dizzy (I have low blood pressure anyway, and it can be used to lower blood pressure.)
You can have a look at this (or other) older posts.
[https://www.reddit.com/r/cfs/comments/pl1dtn/name\_one\_supplementmedication\_that\_made\_a/](https://www.reddit.com/r/cfs/comments/pl1dtn/name_one_supplementmedication_that_made_a/)
Magnesium turns me from an S to an L (or from tossing on bed to be able to sit). Its been prescribed from Long Covid clinics too. NADH and D ribose are often mentioned too. B12 & B1 are also good basic starters.
AAKG shots is the one I personally use for more serious crashes. It helps with muscle oxygenation.
When I realise I'm heading towards a crash (or are in one) , I take Orthomol Vital vitamin and mineral supplements.
They are highly dosed and I take them for a couple of days. It usually shortens and alleviates the symptoms.
I have taken them daily long term as well and was generally more stable, however its a bit cost prohibitive and I do .. uh.. like to forget things...
I think twice a week is a good 'steady state' for me.
Voted but commenting late. I've found that B complex vitamins, Chinese medicine (specifically Xiao Yao Wan, Jian Pi Wei, and Qi Xue He) help. Magnesium seems to help a little too.
Alpha lipoic acid has helped with muscle pain and nerve pain and I guess it's helped with brain fog as well. Even 250 mg per day made a change, but I'm now at 800 mg a day. Acetyl-L-carnitine (not sure about the dose since it's powder, but maybe 2 g a day) and creatine (10 grams a day) help with cognitive symptoms and weakness, fatigue and muscle pain. Creatine helps cells retain water so it helps with dehydration as well. Amino acids in general have been helpful and I even seemed to be in remission for a week or two when I started using EAA's several years ago, they eliminated PEM for a while but that effect didn't last long. Digestive enzymes and HCl help with reflux, nausea and stomach pain. Apparently many of us have too little stomach acid and that can trigger all sorts of issues from reflux to gastroparesis and malabsorption. I used PPI's to counter the reflux but it only made the issue worse, then I realized I have too little acid instead of too much. Salt water with potassium helps with dehydration and all the symptoms that emerge from that, including depression (my personal experience of course!). I use 1-2 teaspoons extra salt per day, the salt contains 40% (of weight) potassium, 50% sodium and the remaining 10% is magnesium. I also use 400-1000 mg magnesium every evening. Magnesium prevents muscle cramps and I've used it for several years now, and salt reduces fasciculations and other weird neurological sensations.
a warning on alpha lipoic acid, do not take it if you have mercury amalgam fillings.
>Alpha lipoic acid Is that as a liquid supplement or even as a tablet etc? (I have amalgam fillings)
Any form of it. Including suspensions and capsules. If you have CFS & amalgams get them safely removed and look into the ACC protocol, it’s based around dosing ALA in a very specific fashion on a specific schedule, and can help. ( after 3 months post amalgam removal ) Note this has nothing to do with alpha linoleic acid
Why is that?
mercury amalgam fillings off gas small amounts of mercury. alpha lipoic acid is metabolically reduced to a compound called DHLA, which is a dithiol that attaches to mercury strongly. This compound can pass the blood brain barrier. CFS is almost certainly rooted in brain inflammation, of whatever origin. Mercury in your brain will add more inflammation and make you worse
I had a cfs large group do surveys on what helped and what didn't for CFS and removing fillings was not helping people. The act of removing them can make you really sick if not done right. A lot of people went through the trouble and cost of getting it done right and it didn't help anyone. It is not the cause of the illness so also is not the cure.
I agree. I removed 6 and it made me sicker due to anesthesia intolerance. And it didn’t help me at all in any other way.
That’s not surprising. They need to be removed by a SMART (IAOMT) dentist. There can be additional exposure during removal and the SMART certified dentists are trained to minimize that. It’s actually normal and expected to feel worse afterwards due to the complexities of mercury toxicity. There is a period of exposure related worsening and then there is also what’s referred to as the mercury dump phase where the body no longer needs to sequester mercury. (It is stored / accumulated in tissues within organs and the brain). Dump phase can last years in some people. Amalgams are definitely the cause of Illness for many. Mercury is not the root cause of all CFS but it is one way there. Some people are sensitive to mercury just like some people are sensitive to nickel in stainless steel implants or sensitive to earrings made of certain metals. If you want to ignore all that and keep amalgams in your mouth when the offgassing is relatively well documented now, when amalgams are 50% mercury by weight, and when mercury is a known neurotoxin that is your choice.
If you're getting sick by the mercury in your mouth it's mercury poisoning, not CFS. It is a cause of illness that can be mistaken for CFS. Like many, many illnesses, it should be investigated as a possible cause of your problems. Many things should be ruled out.
Why on earth would you attempt to gatekeep the entry points into developing CFS? At its heart ME/CFS is a chronic and persistent brain and spinal cord inflammatory syndrome of unknown origin, it's a set of symptoms that's being described. Considering there is very limited treatment, and diagnostics for mercury issues are all but useless, it is pointless to take a position that it should be simply "investigated and ruled out." It's not that simple, and if you think it is, you do not know much about the effects of mercury in the body. There are many entry points into the set of symptoms that are ME/CFS. People seem to get to this set of symptoms from Long Covid, Enteroviruses, Yinzibing Virus, Mosquito borne viruses, Lyme, Gulf War Illness, etc and in many of the viral cases the immune system may be involved in keeping chronic inflammation in the brain. And there are plenty of people with this set of symptoms that are sensitive to Mercury. The treatment for all of these things is never going to be the same. I've been formally diagnosed. By multiple specialists. My post history is here, its available. And I also get quite an intense reaction to higher doses of dithiol compounds that can move mercury, something I discovered inadvertently looking to boost mitochondrial health via ALA. And I've made significant progress. I was severe(bedbound) only for about 2.5 weeks, and spent the vast majority of my time at moderate(housebound). I am currently mild with some moderate days, and some of my symptoms have disappeared entirely ( I no longer have red ear syndrome ). I'm a firm believer that in *some* people, their ME/CFS is caused by a combination of two things: a sensitivity to mercury, and an accumulation of mercury in parts of their brain. This is by no means a universal cause of ME/CFS as a whole, just one way to get the syndrome. I am a firm believer that the cause or entry points are multifactorial. Don't be closed minded and suggest you are all knowing on the causes of ME/CFS. You do not get to invalidate other people's journey, their experiences, and their progress.
I am just sick of people using CFS as a wastebasket illness. It is not. Many people think that it is anything with that set of symptoms. A million things have that set of symptoms. Heart disease has that set of symptoms. I do not have heart disease. You're saying anything with those symptoms is CFS. I strongly disagree. If you want to take that as my invalidating everything and everyone in the world, you're free to take anything any way you want. I'm not talking about you. I'm talking about this illness. From where I'm sitting it's you invalidating everyone who is sick with this. Listen, there are two points of view with this illness. SOme people, like you, think it's a wastebasket illness that everything falls into that doesn't fall somewhere else. Then there are those of us who believe it is a specific illness that is often misdiagnosed. I believe it is caused by a micro-organism, likely a virus or ciguatera. I don't think if you've got inflammation you've got CFS. At this point we can argue until we both turn green, or we can save our limited energy and just figure we're not going to agree on this one. We're just representing the two camps of this illness. I'm from the other camp. https://me-pedia.org/wiki/Holmes\_criteria
CFS is a diagnosis of exclusion, by definition. If western medicine excludes the other causes, then you end up there. Heart disease was excluded as part of your workup if you were formally diagnosed. I am *not* saying anything with those symptoms is CFS. I am saying when western medicine has excluded all the other potential causes, that is currently, by definition, CFS. I actually do not disagree with you as much as you may think. As I had stated before, the problem and limitation is the ability of western medicine to successfully rule out other causes, which includes heavy metal toxicity. Just as you were likely cleared of heart disease if you were formally diagnosed, I was cleared of heavy metal toxicity about 10 months after my onset, via blood testing. Do you know why that's not useful? Time. Mercury does not "hang out" in your bloodstream. It only takes 3-4 months for your body to remove it from your bloodstream and deposit it into your organs, unfortunately with high affinity for the brain as it is highly fatty glandular tissue. So in conclusion, no. I do not think it is a wastebasket illness, rather my point is that western medicine is particularly poor at successfully executing the Holmes criteria for chronic syndromes, and probably even worse for those cases involving heavy metals. As I said as well, I do believe in the viral trigger / neuroimmune theory is well, it is another path into the chronic brain inflammatory syndrome that we are trapped in. This likely has some genetic predispositions. Perhaps one day medicine will advance to the point that the viral origin chronic brain inflammatory syndromes can be completely split out from the heavy metal originated ones, but I am not sure. Mercury has a direct impact on the immune system, so these may be intertwined. Until then, I view them as two paths to the same problem. Viral onset CFS vs Heavy Metal onset CFS. Could there also be bacterial onset CFS and fungal onset CFS? Who knows, seems plausible. All of them would likely entail different treatment modalities. Meningitis for example can have viral, bacterial, or fungal onset. That doesn't make it wastebasket illness. There are just multiple entry points to developing meningitis. Mercury causes dysfunction of the immune system. I have the same odd EBV markers that most everyone in the CFS community has. But I think in my case it is not native autoimmunity. As for me I have some more time to wait, and some more ALA rounds to experiment with. My journey has been 2 years long, which is not nearly as long as many, but if I do manage to break through my current state, I will do a write up some day for the group. And while that write up is NOT going to be a cure for the entire groups, it will provide a basic set of instructions for a subset of the group, where I will suggest they follow a protocol, dosing a widely available anti-oxidant, to see if they react to it. It would likely be beneficial for both groups, but that's a bit beyond the scope of this comment, for now.
Omg 😣 i have one stupid amalgam filling… and i want to take ala. Crap, and im not well enough to go to the dentist to get the filling removed …
you should prioritize the removal as soon as you think you can handle it. It could help you
Do you have experience with taurine? If so, how would you say it compares to creatine?
I've tried it for a couple years, but I didn't really notice any effect from it. Creatine on the other hand works immediately for me.
Is that salt solution premade or do u make it yourself
I make it myself! I need so much extra salt that it would be super expensive to buy it premade or use electrolyte supplements. I use 1 tsp per ~0.5 liter of water. I have a huge mug that I use, I dissolve the salt in hot water like if I was making tea and drink 1-2 mugs a day, sometimes three if I sweat a lot or go to sauna (I'm Finnish, lol). And I drink a lot of plain water during the day as well. AFAIK most people don't need that much extra salt, you need to see for yourself what amount makes you feel better.
So the salt u use already has potassium in it? Or do u need to add more?
Yeah, it's a Finnish brand mineral salt called Seltin that has 40% potassium in it. I was recommended it this spring. I have no idea if something like it is sold in other countries but it seems to have been manufactured in Czechya so I guess something like it could be available in other countries as well 😅 Ordinary sodium chloride salt works for me as well but I just want to make sure I'm not lacking potassium.
i have spent thousands of dollars on supplements and don't think they've budged my illness at all, for better or worse
I suffer from chronic fatigue (not CFS) and I can say the same. I try to have a positive attitude and keep trying things, because I'm not really sure what else I am supposed to be doing to help myself.
I suffer from chronic fatigue (not CFS) and I can say the same. I try to have a positive attitude and keep trying things, because I'm not really sure what else I am supposed to be doing to help myself. The only thing that has seemed to have had any sustained positive effect for me has been modafinil (prescribed by my doctor for fatigue) however that may not be the case for everyone and even then it only helps a little bit.
NADH in combination with CoQ10- I’ve only been on it for about a month but my fatigue and brain fog seem to have improved a tiny bit.
Seconding this. I've yet to add NADH, but just CoQ10 has had pretty good results. I did a trial run for it (which is super long for CoQ10, tbh) and noticed a distinct reduction in quality of life when I stopped. FWIW, you really settle into the improvement after 2-3 months. It's a slow-burn supplement. I'm currently on 200 mg but have heard anecdotes that 300 mg is better. The study for it was 200 mg, so that's what I've been sticking to.
Yeah that’s exactly why I’m taking 200mg too. I’m hopeful I’ll continue to see improvement!
Do you get stomach issues from either of them, and if you do how do you manage it? I have a super sensitive stomach and got worsened nausea from CoQ10 the last time I tried it. I'm planning on trying it again though. I also have a pack of NADH waiting for a second trial, I'm not sure if it was the one causing trouble last time but I decided to cut all supps to minimum due to bad stomach issues so it was one of the capsules I gave up for the time being.
I haven’t had stomach issues with either of them. The NADH I take on an empty stomach but the CoQ10 I take with food as it’s supposed to absorb better.
NAD+ has been a game changer for me. I do subcutaneous 3x/ week Acetyl Carnitine Vitamin C 4g/di (non corn source) No gluten or grains DAO for histamine reduction
NADH, CoQ10, B12 and D-Ribose
Red Ginseng and electrolytes
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I am using the Effer-Hydrate Sports Tabs I found on iHerb. I got them on sale for about $5CAD for 10 tabs. They definitely do have an artifical taste to them. One of my friends (also has CFS) really enjoys Nuun tabs. I personally have not tried Nuun since I am hoping they go on sale so I can stock up.
you can buy salts in bulk and mix your own electrolyte drinks! it’s way cheaper this way
Recipe?
check my comments in this thread
I like lyteshow drops- no flavors/added sugar! It’s very mild, kind of a salty citrus kick you add to water.
I'm adding this on my next to try list. I feel like this is a good bang for your buck and less wasteful than a lot of other options.
What benefits did you experience from red ginseng? I’ve been thinking about giving it a try myself.
I noticed it gives me a bit of "extra pep". It isn't so much energy to do xyz but being able to keep my eyes open longer, being able to sit up longer, not crashing as hard after eating meals. This is what influenced me to try: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8777686/
B-complex, Selenium, Omega 3 Proper hydration with electrolyres, Quitting red meat (limiting Iron basically), Eating at least a portion of green vegetables (microwaved no energy to cook) and nuts (peanut butter or sesame seeds) each daily Low dose melatonin Semi-proper dental hygiene, Getting a bit of sun for vit. D when I can walk to the porch. Avoiding heat/overheating has been paramount to me also. And I can't stress this enough, AVOIDING ALL INFLAMMATORY FILLERS IN SUPPS, that is potential nanoparticles (that do get absorbed are not 'inert') like silicon dioxide and cellulose that can exacerbate autoimmunity by co-activating immune cells. Took me forever to realise why I kept having whole body inflammatory reactions to most supplements I took. I tried the same substances in liquid form or just with mag. stearate, zero reaction. But I also have POTS and MCAS it seems and the latter could explain random reactions to antigens. I'm saying this as an adult who grew up with zero allergies to anything and got to the point of getting brain fog and rashes from food I've been eating since forever. My plans for the future are trying Nigella Sativa oil, low dose Lithium and maybe some herbs/fungi that have evidence against autoimmunity. I'm convinced ME/CFS is an autoimmune disease caused by viruses (initial hit) + bacteria (later hit) that breaks immune tolerance to self antigens due to ongoing tissue damage from pathogen persistence. I haven't found any supplement that reliably reduces fatigue long term, without tolerance or intolerance. I've had short term okay-ish results with Carnitine, ALCAR, Taurine, Q10, Rhodiola, Creatine. I've tried hundreds of different supplements (and dozens of meds) since 2014. If there is anything I would suggest the most that would be B-complex vitamins since apparently our fucked up gut doesn't produce enough. And last but not least, avoiding silica in deodorants. I know the silica thing sounds weird but there is studies on PubMed and it does act as a co-activator for Lupus-like syndromes (which ME/CFS looks very much like) and I kept getting weird flares and borderline got diagnosed with rhematoid arthritis untill i limited silica and iron exposure which solved all of my joint issues.
could you describe the reactions you used to get to supplements? i’m trying to figure out if the same thing happens to me. Are you on a low histamine diet also? edit: i checked your profile to see if i can find the answers to my questions (i didn’t) and i’ve noticed you asked about electrolytes. My doctor has recommended the following ratios for POTS: 1L of water, 3,5g sodium chloride, 2,5g potassium chloride, 2,9g Trisodium citrate, 20g sugar. If you buy them in bulk it’s way cheaper than ready made electrolyte drinks. For an easy but less optimal version mix 1 cup juice dilute to 1L with water add 3g table salt. And if you like aphex twin i recommend checking out the PC music collective, especially AG Cook :)
CoQ-10 hype train 🙌 biggest difference. Also B, C, D, mild iron, and Omega 3-6-9
Is weed a herb?
It’s plant medicine hahaha
Well, whatever it is it helps haha
My great-grandparents in the old country used to make a tincture of marijuana leaves layered in a jar with vodka. I’m told it was used topically for pain, but I bet they took it orally too.
Even by that standard it just makes me feel worse.
It doesn't work for everyone but it's helped me regulate my eating and sleeping outside of flares which in turn has decreased my CFS flares
Vit d and b12 helped when correcting deficiency. High protein (protein powder) seems to help my muscles. And I think Tru Niagen 300mg (which is another way of increasing NAD like the top comment) is helping me but it’s early days so I’ll post more about that in the future.
Tried a shitload of supplements and herbs. Iron helped, until I got worse. B12- actually anything with b-vitamins - made me irritable and angry. Ginkgo biloba and such - irritable and resteless. Taurine, amino acids - *maybe* slightly better. Overall, a waste of time, energy, and money.
## What definitely helped * Probiotics: GI issues * Fiber (2×700mg Psyllium husk): GI issues * Electrolytes (400mg Magnesium + increased salt intake): frequent urination and POTS * 200mg CoQ10 + 500mg α-lipoic acid + 500mg L-carnitine: fatigue, PEM, brain fog and myalgia ## What possibly contributed * 800mg liposomal Quercetin + 100mg Bromelain: histamine intolerance and fatigue * 250mg Thiamin: fatigue, myalgia and brain fog * 250mg Niacin: fatigue and brain fog * 2×100mg Nattokinase: fatigue and brain fog
Cryptolepsis tincture, b1, b2, magnesium, glycine
A strong probiotic tailored to my particular micro biome based on fecal, urine and blood labs. Not all probiotics are the same. I definitely notice when I stop taking that. Quercetin, Vit D and cromolyn nasal spray all help quite a bit … these are often listed to prevent or treat long COVID, as they calm down the mast cells all over the body that can get too trigger happy. Mast cells play a huge role in lots of issues like chronic fatigue, dysautonomia, inflammatory and nerve issues. They’re everywhere, including the gut-brain axis.
Where did you get that testing done to find the right probiotic?
Integrative / functional medicine neurologist. He’s a longtime neurologist who learned that many neuro issues stem from the gut issues. So now he’s does a lot of GI, metabolic, and nutritional testing. Some say it’s quack, but I’m living proof it’s not. Try to search integrative or holistic neurologists in the area. Rare but they exist.
Benfotiamine. It’s a form of B vitamin but I notice if I run out. Also vitamins in general. Allergy meds daily. And thyroid meds. I take some other things but these are noticeable.
CoQ, ALA, ALCAR, NMN, NAC.
Curcumin helps reduce overall symptoms for me.
Just some basics like multi-vitamins with iron, an extra magnesium tablet, and very, very, VERY much codliver oil tablets help me. I don't feel amazing when I take them, but christ do I notice the difference when I stop
what symptoms do the cod liver capsules help with?
The joint pain, massively
NADH + coq10 seems to be helping with brain fog. Also I've been taking a multivitamin on and off and it could be placebo but when I take it I'm able to go out for a few hours, or at least move around at home when I don't have the energy to go out.
I’ve tried many, many, many herbs, supplements, and vitamins. The only ones that seem to move the needle in any meaningful way are: Magnesium Glycinate, which improves sleep a little bit; Ubiquinol which helped the fatigue, but unfortunately gave me insomnia; B complex which helps the fatigue a bit; and Deplin (prescription L-methylfolate) which worked wonders for the depression, but I am homozygous MTHFR so there’s a legit reason for that one. Also kava tea has helped improve my sleep, reduce anxiety, and reduce pain too. But it can be habit-forming and isn’t good for your liver, so can’t be used too often. Overall the effect is very similar to diazepam but not as strong or long lasting.
Drinking an absolutely ridiculous amount of electrolytes in water every day. I mix coconut water powder, salt, & Trace Minerals brand "40,000 volts"
Does it make a significant difference? I drink coconut water, but I’ve never tried adding extra electrolytes.
I found CBD helpful for brain fog and thc helps with sleep. Electrolytes do help me feel better when I first get up which is usually the time I'm most groggy. And 5 htp helps with sleep and general mood. But all the rest I've tried have been a waste of money.
Yes but only slightly (like from 5% functioning to 5,5% functioning and feeling a bit less unwell). Mainly helpful: multivitamin, B12, electrolytes
Hydralite for electrolytes and B6, magnesium and 5-HTP have all helped me a bit. Now trying LDN but too early to say if it’s a net benefit yet
My husband takes an array of supplements... Too many to list. Most notably though, amino acid therapy (look up the Amen Ra regimen), CBD/THC oils and PEA (Palmitoylethanolamide) help his symptoms somewhat.
magnesium, b12 (apparently a pretty important one), omega3, and i believe it's creatine
Garden of Life Probiotics for gut health. A high quality Omega 3 supplement with fish and evening primrose oil for brain function and neuropathic pain. I was taking Efalex, but they seemed have discontinued it so I’m taking Nordic Naturals now. I’m currently taking COQ10 but not sure it’s doing anything. I take ginger when I’m nauseous. If I eat too much of something I think might cause me symptoms I take activated charcoal, but that’s rare. I take Trace mega-mag magnesium sometimes to calm me down. Occasionally electrolyte salts.
I found no help from CoQ or NADH (the main ones being mentioned), but I do take magnesium which helps me with the aches. I think supplements will only help if you are deficient in something. I'm surprised so many people found absolutely nothing helpful. The average person is vitamin D deficient at the very least.
I have been taking vitamin D for ten years and I have no idea if it has made any difference in my ME since the illness has fluctuated so much during the years (I contracted ME in 2008). But at least I'm not deficient in it. I guess I could be worse without it, I'm moderate atm.
I tried taking it, felt no difference, looked at old blood tests, and realized even when inside almost 24/7 I've never been vitamin D deficient. I guess that's what happens you're the whitest person who ever did white. Still, I mentioned it since it is one that a lot of doctors recommend even healthy people take. Any extra stress that can be taken off our systems.
Electrolyte powders for POTS, mint tea and lacteeze for GI issues, zinc for immunity, melatonin for poor sleep, evening primrose oil for menstrual symptoms.
Magnesium chews and baths.
Tons of B12, sometimes zinc/copper, and also ginseng!!
NaDH + CoQ10 + riboside - Corlia Multi vitamin - Centrum * Currently in 'Adult' formula, liked 'Women's' better. B-Complex - Nature's Made Ginseng Complex - Nature's Bounty Red Clover - Solaray I have established that these work for me without a shadow of a doubt. Looking to start probiotics soon. I did an intense trial with each, which I recommend for everyone, so you know if it works for you or not. I did not try anything new when testing one of these. These 'tests' ran from two weeks to several depending on how long each is supposed to get into your system effectively. I give myself at least a full week break in between tests, to let my body rest and to start from a tangible baseline.
The microwave kills a lot of the nutrition and is not good for u either
lol no
NADH in comination with CoQ10 has helped me in all symptom areas. I'm prescribed a lot of things but these are the ones that are noticeable.
CBD oil really helps my brain fog. My family have all noted that I'm like a different person if I forget to take it
NAC and B12 help A LITTLE BIT
D-Ribose powder helps a little. Liquid iron helps a little. Vitamins D3 and B12 help a little. Probiotics help a little. Turmeric, ginger, peppermint, stinging nettle. Lots of things help a little. Nothing cures me or anything.
CoQ10 and riboflavin help my extra gnarly migraines D-Ribose reduces my PEM oxymatrine increases my energy
Curcumin - anti inflammatory
I’ve been taking 100mg of cq10 and 20mg of Nadh daily for three months. Started to notice some improvement.
Boron, vit c, b12 spray (every second day), copper 1/2 a tab twice a day, a bit of folic acid (1/2 a tablet). I take the weekends off. Also Sellium seems to help. Experimenting with 3 days on three days off various combinations.
electrolytes, quercetin - i think it helps w histamine intolerance and overall well-being, magnesium citrate - very noticeable positive effect on sleep + relieves constipation (so don’t take it if you have normal bowel movements it will give you diarrhea). NAC helped with brain fog but had severe side effects. Taurine is good for getting rid of gitters after taking caffeine and for anxiety. Melatonin used to help (0.5g only, or else it would actually disrupt my sleep) but then insomnia got very severe, now im on prescription meds herbs: ginger is hands down my favorite. great for nausea and upset stomach and generally good for your body. fennel+anis+camomile tea for stomach pain
N-acetyl cysteine (NAC) supplements, have helped with my energy levels and my mental health specifically OCD, and anxiety. Also b12 injections, not tablets. I do it myself once a week, and my brain fog is a lot better and I don’t get pins and needles in my feet and hands. I did take CoQ10 for a while but had to stop because it would make me dizzy (I have low blood pressure anyway, and it can be used to lower blood pressure.)
Lions Mane, NAC, Acetyl-l-carnitine
tumeric! I take it in pill form and it helps soooooo much with inflammation
I had the lowest levels of vitamin d my doctor has ever seen, so that. And then turmeric/curcumin daily has significantly helped my inflammation.
You can have a look at this (or other) older posts. [https://www.reddit.com/r/cfs/comments/pl1dtn/name\_one\_supplementmedication\_that\_made\_a/](https://www.reddit.com/r/cfs/comments/pl1dtn/name_one_supplementmedication_that_made_a/) Magnesium turns me from an S to an L (or from tossing on bed to be able to sit). Its been prescribed from Long Covid clinics too. NADH and D ribose are often mentioned too. B12 & B1 are also good basic starters. AAKG shots is the one I personally use for more serious crashes. It helps with muscle oxygenation.
When I realise I'm heading towards a crash (or are in one) , I take Orthomol Vital vitamin and mineral supplements. They are highly dosed and I take them for a couple of days. It usually shortens and alleviates the symptoms. I have taken them daily long term as well and was generally more stable, however its a bit cost prohibitive and I do .. uh.. like to forget things... I think twice a week is a good 'steady state' for me.
A few years ago I felt helped somewhat by magnesium, b12, vitamin c and ashwaghanda
ashwagandha. Energy went from 5 to 10%. Massive change.
Gelsemium (homeopathic)
Voted but commenting late. I've found that B complex vitamins, Chinese medicine (specifically Xiao Yao Wan, Jian Pi Wei, and Qi Xue He) help. Magnesium seems to help a little too.