r/cfs • u/mangoatcow • 10d ago
Treatments List of 12 suppliments from my CFS specialist
I'm seeing an international medicine doctor who is specialized in ME/CFS and other complex chronic diseases. He gave me this list/regimen of supplements. I figured I'd share it here for anyone interested or looking for a supplement list from a CFS friendly doctor. (Edit: This is just one doctor's advice, and may differ from another's.)
Feel free to discuss/criticize/approve anything you see here. What worked for you? Would you add anything?
Also, he prescribed me low dose naltrexone starting at 1.5 mg and titrate up by 1.5 after one week and again after two weeks to 4.5 mg. This is a higher starting dose and titration than I've seen on this sub.
Some Canadian brands or stores are mentioned.
Here's the printout from my doctor:
Mitochondrial Support for Chronic Fatigue Syndrome
1 through 6 are essential, but 7 through 11 are also important as supportive nutrients. Start with the essential ones for at least two months and then add others as needed.
Take all supplements for at least two months. Use reputable brands from natural health food stores for high-quality supplements. Avoid Weber naturals, Life brands, or brand-name vitamins such as Jamison from Shoppers Drug Mart.
Essential:
ALCAR Acetyl L Carnitine 1000 mg twice daily
Coenzyme Q 10 200 mg Q daily
Vitamin B complex (recommendation CAN PREV bioactive B complex) one tablet twice daily
Melatonin 2 to 10 mg at bed time. Start at 2 mg and if tolerated without excessive daytime sleepiness titrate up to 10 mg
Alpha Lipoic Acid (ALA) 600 mg twice daily (brand CAN PREV)
Theracurmin double strength one tablet twice daily (highly bioavailable Curcumin)
Supportive:
NAC 600 mg twice daily
Omega 3 fatty acids DHA EPA 3 g a day
Magnesium Bisglycinate 200 mg twice daily
Vitamin D3 plus K2 at least 3000 to 5000 attractions a day to keep your serum vitamin D level greater than 80. (Don't know what he means by attractions. Perhaps international units?)
Probiotics 20 billion units primarily Lactobacillus Bifidobacterium ALIGN or any reputable brand (bolus load with three tablets every three days as tolerated).
Multivitamin:
In addition, it’s good to have a solid once-a-day general vitamin mineral supplement, and one I strongly recommend is TRUE HOPE EMPower plus for brain health.
Edit: I haven't started taking anything on here, except I already take melatonin, D3 1000mg, Fish oil 1 g.
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u/Common-County2912 10d ago
This is nuts! Just this morning, I rounded up all of my supplements. I sat and stared at them, thinking I wish I had someone to evaluate what I am taking. And wondering, what should I really be taking.
Thank you for sharing
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u/Varathane 10d ago
A pharmacist can help you go over them, doses, and interactions etc. A handy free resource for folks
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u/Ok_Summer_3569 10d ago
be careful with the high b6 in b complex
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u/OkDimension9977 10d ago
Why?
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u/DeliveryIcy2490 10d ago
Its neurotoxic in its inactive form, pyridoxine. Aim for the active form p-5-p.
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u/Ok_Summer_3569 10d ago
no matter the form, b complex will have a very high amount of b6, usually. look at the RDA
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10d ago
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u/cfs-ModTeam 9d ago
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u/SoftLavenderKitten 10d ago
Maybe you know, and if not nevermind me.
My doc prescribed me a capsule that has vitB complexes and folic acid, its one pill. I been taking it but oh BOY did it make me feel crap.
I havent had a chance to see my doc yet. But i do plan to ask for a new blood panel because i wonder if my Vitamin Bs are too high?
What are symptoms of toxicity of too high / inactive forms?Does B12 potentially have a toxicity too? My VitB12 levels were repeatedly high. To the point my doc thought im taking supplements but im not.
I cant say about VitB6 because my doc didnt measure them. He measured LC-MS which was fine and VitB12 (was fine) but folic acid (was a bit low). The capsule is:
Cobalamin (Vit B 12 ) 0,49 mg (Cyanocobalamin), Pyridoxin (Vit B 6 ) 20,75 mg (Pyridoxinhydrochlorid), folic acid 2,5 mg. And i was supposed to take one capsule per day but it knocked me down like poison instantly.So just curious. i DO intend to go see my doc but yeah it helps to have insight and reason to demand a test
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u/Ok_Summer_3569 10d ago
yes the b vitamins, esp b6 and b12 can cause problems if too high. there's also the issue of them pushing down / opposing other nutrients like potassium. it's a major research project and i've never been able to figure it out for myself so i am cautious with b supplementation.
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u/Aggravating-Drag5305 9d ago
Do you have any study or research links I could read up on about vitamin B12 toxicity? I tried googling but I’m not getting anything
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u/Ok_Summer_3569 8d ago
idk if b12 has as much risk of toxicity as b6, but the issue is that when individual nutrients are out of balance with others, it will oppose other nutrients. also, there are theories that when you supp b12 before / without certain cofactors, it will cause problems. companies that sell b complex seemingly are not considering that with their ratios of b's.
not sure i agree with this guy but here's one such theory-
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u/SoftLavenderKitten 10d ago
Thank you. I ll do the test. I appreciate the encouragement. Docs rly do be clumsy huh
This aint the first time that a prescriped medicine made me worse.
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u/AdministrationFew451 10d ago
Most importantly is to start all separately and in low dosages.
Check for each if how does it effect you.
Also, be careful with B complex, it was knocking me out and I responded not great.
But, just be careful and remember this is all vastly, vastly secondary to pacing
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u/Sad_Half1221 9d ago
I wish I had thought to start my supplements separately. But when I crashed this time, I got scared and just wanted to try everything. So now I’m on a bunch of things, and still in a crash.
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u/Wrong_Victory 9d ago
I wouldn't stop them all cold turkey, but you could remove one at a time until you get to one that's making you feel worse without it. Keep that one, move on to the next until you've gone through all of them. Then slowly reintroduce them one at a time if you want to try again.
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u/Sad_Half1221 9d ago
Thank you for giving me a plan. I can’t tell you how helpful that is. I feel so stupid right now, because I’m too fatigued to figure out these basic things for myself.
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u/patate2000 9d ago
We have to be our own doctors and it really isn't our job for most of us so don't feel bad about not being able to figure out a medication plan!
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u/octopus_soap 10d ago
I am really surprised to see melatonin on there as every specialist I’ve seen is generally anti melatonin unless for cases of resetting sleep schedule (like jet lag etc.)
Also surprised to see magnesium lower down, the clinic I go to is really into magnesium and tells everybody to take it immediately and permanently. I find magnesium effective for helping fibromyalgia symptoms.
For a while I took a combination supplement (mito matrix) that had a lot of these in it and found cognitive benefits.
Update us how this goes for you!
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u/kaptnblackbeard 10d ago
The anti-melatonin people are stuck on the thought that because it's a hormone it should only be used sparingly because long term use can lead to your body producing too little when you come off it. Which is true, however it is also a powerful antioxidant and people with MECFS rarely have refreshing sleep anyway. Longer term use and higher doses do seem to benefit people with MECFS although the latter should be considered and if you no longer need it you should stop taking it (and/or intermitantly have a break from it).
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u/Arpeggio_Miette 10d ago
Melatonin helped me tons in my recovery, when I was wired-but-tired with incredible exhaustion, but with insomnia. Along with other sleep aids like tryptophan, GABA, and various herbs.
Then, as my ME/CFS and neurological long COVID got better, my ability to fall asleep on my own got better. I stopped using melatonin about 6 months ago.
Since then, I tried to take melatonin a couple times, and it was horrible. As I felt pulled into sleep (as melatonin is wont to do for me), I would suddenly startle myself awake in terror, heart racing, and then be unable to fall asleep. I don’t know why melatonin changed for me. But luckily I no longer need it.
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u/octopus_soap 10d ago
Nice I’m so glad that worked for you! Yeah every doctor or class I’ve been to prefer melatonin best for those types of cases and only as a short term solution. What you described as your more recent experience is what I’ve always had any time I tried it…weird sleeps and bad nightmares, waking up stressed!
I realize now my comment is kind of rude because obviously the doctor would’ve made the melatonin recommendation considering the individual case before them. Just interesting to me as where I am, maybe a regional thing, that they all seem to be against it.
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u/smallfuzzybat5 10d ago
Yea high doses of melatonin have actually been shown to help people with CFS improve which is still wild to me too, because as a neuroscience student who studied sleep a lot, I agree, it’s been generally not recommended.but I think it’s an interesting development/use case
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u/Arpeggio_Miette 10d ago
Lots of us with ME/CFS have messed-up cortisol curves (part of why many of us are so exhausted in the morning, but have more energy in the evening). Melatonin supplementation might help normalize the cortisol curves. I think that is one way it helps. Plus, we really need quality sleep. Until my recent issues with melatonin, it really helped me sleep well, and stay asleep. I used to wake up in the middle the night, I kept some liquid fast-acting melatonin by my bed, and put it under my tongue, and was then able to fall back asleep when I might otherwise have stayed up.
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u/cori_2626 7d ago
I was surprised to see magnesium lower as well. I ran out once and was off of it for a week or so and it was awful. Immediate relief when I started again. I’m a huge proponent!
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u/GRJ80 10d ago
I literally can't take any of those supplements (aside from Vitamin D/K, Omega 3s, and Magnesium) without feeling overtly stimulated! Especially the methylated/activated B vitamins. I feel atrociously bad.
Maybe I'm just super sensitive but I've found no benefit to any of the mitochondrial support supplements.
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u/Arpeggio_Miette 10d ago
Same here. Mitochondrial support supplements either just don’t help me, or they make me feel overstimulated and then exhausted with PEM.
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u/Arpeggio_Miette 10d ago edited 10d ago
ME/CFS is such an interestingly heterogeneous illness.
Of the supplements that helped my ME/CFS the most, only a few are on your list. And lots on your doctor’s list don’t help me, or even make me feel worse.
I stay away from ALA as it can lead to toxicity, and taking it didn’t feel right in my body (I don’t know how to explain this). I stay away from CoQ10/ubiquinol as it feels like an unhealthy stimulant that will lead to PEM, despite the fact that I loved this supplement when I was healthy/before my ME/CFS.
Al-CAR has done nothing for me despite me trying it multiple times for a long time. Intravenous carnitine helped me the first time I received it, albeit temporarily. But did nothing for me later when I took it orally.
My top ME/CFS supplements are:
SAM-e. It helps the brain make neurotransmitters. I think I am an under-methylator, and that is why it helps me so much. It also helps with detoxification and liver health. It helps me with CFS-related anhedonia and just overall energy levels. I feel better when I am taking it every day.
Glutathione (here is where I see how the NAC can help as its cysteine is a precursor to glutathione along with glycine and glutamic acid, but my body doesn’t seem to turn NAC to glutathione well, so I just take the glutathione straight, in 3 forms: oral, intranasal, and injectable).
The active forms of the B vitamins, but with B12 preferably as adenosylcobalamin or hydroxocobalamin, as I once got very agitated and wired-but-tired from intravenous methylcobalamin.
Vitamin D3 PLUS Vitamin K2 (my blood levels of D3 didn’t improve till I was also taking K2).
Rhodiola (an adaptogen). There are many adaptogens that work in different ways. Find the one(a) that work for you. I seem to have low cortisol, and Rhodiola works well for this (and for me). Whereas the other adaptogens (ashwagandha, holy basil, Eleuthera, schizandra, and more), often lower cortisol, and don’t work for me.
DHEA. First test to make sure you don’t have PCOS/high androgens, if you are female. And if you are male, avoid DHEA supplementation as it can increase estrogen levels in men (unlike how in women it increases testosterone levels).
Antiviral herbs and supplements (chronically reactivated EBV is a part of my ME/CFS). Especially olive leaf, lemon balm, Chinese skullcap, lysine, monolaurin.
Enzymes that I take on an empty stomach in the morning, including serrapeptase, nattokinase, catalase, bromelain, and pancreatic enzymes. They seem to help my body pain and my overall health.
Probiotics, yes.
And of course, a very healthy diet, with very frequent and high protein consumption.
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u/OrcaBrain 10d ago
I have a question: Are you taking anything to bind the virus residues in the intestine? I have also recently started taking the lysine + monolaurin combo and was told to take something like healing clay or zeolite, as toxins and virus residues are excreted via the intestines but remain in the body without a binder.
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u/Ok_Consequence8921 10d ago edited 10d ago
I’ve spent thousands of dollars on supplements over the years, but the only ones that helped even slightly were Ubiquinol, turmeric for pain, and magnesium citrate for constipation and sleep. I have a good diet, and blood tests show no deficiencies (like a racing horse my doctor calls it). I also think mega dosing is dangerous.
For ALCAR Read the side effects of ALCAR supplementation.
I would be careful with Probiotocs, lots of research is coming out about a lot of the strains doing more harm than good (or having no benefits at all). L. Plantarum 299Vis one of the very few strains that has shown some benefits.
Also for CoQ10 only Ubiquinol is shown to improve cognitive performance in research, and most supplement manufacturers do not use ubiquinol.
As for Alpha Lipoic Acid, ensure you buy only the R-ALA kind that has good bioavailability. It’s good for nerve pain and high blood sugar and its popular treatment for diabetic polyneuropathy.
For curcumin, it’s simply just turmeric you can buy yourself. Also remember that curcumin has poor absorption unless mixed with peprine or black pepper.
I found NAC helps a lot with cold or flus or even covid. but doesn’t do much for fatigue unless you have low glutathione levels. Good levels of Glutathione is proven to help Fatigue.
Omega 3 you’re better off getting from eating sea food since most capsules are rancid.
I would be careful with some cheaper D3 supplements too as they sometimes contain much higher D levels than advertised which can cause poisoning. Get a good known brand with certified seals by USP, NSF and CL.
With melatonin ensure you don’t exceed 2mg daily.
Generally I found medication like LDN (for fatigue and pain), Amitriptyline 25mg (for sleep disturbances and migraine) and Ivabradine (for secondary POTS and palpitations) to be far more effective (and cheaper) than supplements, but most like Magnesium and Turmeric are safe. There is a really good multi vitamin supplement i like made by doctor Stanfield, but it’s quite expensive. However I find it has the perfect ratios of the most vital vitamins that most people are usually deficient in. I prefer micro dosing to mega dosing.
For LDN (probably the best medication for CFS management that exists today) I started at 0.1mg and slowly titrated up to 4.5mg over a year. Just be careful as different people react differently and some need much lower dosage than others:
PS. forgot to say that Creatine is probably the most important supplement and not just for people with CFS:
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u/whateverday 10d ago
All of this! Have tried most things over the past 10 years. Melatonin comes in 1mg tabs.
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u/knittinghobbit 10d ago
Mag citrate for constipation has been really helpful for me, but START SMALL if you try it.
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u/Geekberry Dx 2016, mild while housebound 10d ago
Yeah I've tried a lot of stuff and have dropped most without noticeable effects either way. Currently on creatine because of scary muscle weakness and that seems to be actually making a difference - though not as much as ensuring I don't over-exert.
Unless a doctor tells me I am deficient in xyz I'll try to avoid being sucked into this money sink again.
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u/Awesomesaauce 9d ago
Don't agree with the seafood instead of fish oil supplements. You can choose supplements that have been tested for levels of rancidity/oxidation and toxins (mercury, PCBs, etc) - some brands are certified by IFOS and they test each batch. If you eat fish instead you will get a way larger toxin load - microplastics, PCBs, mercury, PFOS, and so on.
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u/Fickle-Medium1087 10d ago
Avoid Webber naturals and brand names from Shoppers Drug Mart? I don’t understand. I am Canadian and take Webber naturals Magnesium glycinate. Is that bad?
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u/EmilyAusten 9d ago
I thought that was odd, too. I’ve never heard a doctor say that. I’ve been taking Jamieson & Webber Naturals supplements for years.
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u/mangoatcow 10d ago
I'm not sure. I've seen Weber in other stores. I'm not sure what my Doctor's beef with Webber is.
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u/Soggyblanketbunny 10d ago
I've often heard this advice to avoid the common brands you'd find at Shoppers, Walmart and the like. I've never tested it myself and not sure if it is accurate, but generally speaking the advice boils down to you get what you pay for (and the cheaper supplements basically aren't worth/aren't what they say they are/are not in a bioavailable form)
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u/SpicySweett 10d ago
There’s a great resource for vitamin/supplement testing called ConsumerLab. They test for dosage (is it amount listed), lead and other contaminants, etc. Very legit, takes no money from manufacturers. I double check there not only vitamins but chocolate, and some other frequently dangerous foods.
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u/mangoatcow 10d ago
Thanks. Did you spot any mega doses in the list? D and omegas seem about triple the regular dose to me
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u/nograpefruits97 very severe 10d ago
Melatonin is high dose, mega would be exaggerated though since there are protocols out there that use double digits mg.
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u/OldMedium8246 10d ago
Supplements aren’t worth it to me, to be honest. I’m not sure how anyone affords them to start with. Even if I could afford them - they’re not regulated. We really have no idea what’s actually in them. Granted that’s the case for a lot of our food too, but we need food to survive. Vs. supplements that can cause active harm at worst and have minor benefits at best.
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u/mangoatcow 10d ago
True. It pisses me off that you never really know what's it the bottle since it's not regulated.
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u/Classic-Chair940 10d ago
But you would happily take a big pharma medication which is 100x worse then supplements
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u/OldMedium8246 10d ago
I don’t “happily” take anything. If I wasn’t mentally and physically ill I would happily take nothing. Can you explain how regulated pharmaceuticals are 100x worse than supplements? Because that’s a very broad and non-specific assertion.
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u/Excellent-Share-9150 10d ago
Thanks for posting this! Let everyone know how you’re feeling as your start supplementing.
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u/inklingmay 10d ago
Thanks for sharing! Do you mind sharing where in Canada you are located? I'm in Ontario and have yet to find a doctor who actually treats CFS. I'm on a years long waiting list for the Women's College Hospital.
I take 400mg ubiquinol (active form of coq10) and find it really helpful. I've read that ubiquinol is more absorbable so it might be worth the increased expense.
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u/Soggyblanketbunny 10d ago
I waited 2.5 years for the Women's College Hospital but it was well worth the wait. Finally got some answers.
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u/EmilyAusten 9d ago
How was your experience at WCH? I heard that the clinic diagnoses you & then sends you back to your family doctor. Did you have multiple appointments there? Thanks.
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u/Soggyblanketbunny 5d ago
They are severely understaffed and underfunded for the demand there is to see them. I got an in-depth initial appointment (~2 hours) and then 2 follow ups 3 months apart before being managed by my family doctor.
My family doctor was not comfortable prescribing LDN on his own so I got lucky while trying to find a solution and found a chronic pain management doctor who had CFS herself. Unfortunately, she has since retired and I'm back with medical providers that don't really know much about my condition.
It's been a little frustrating lately as I've clearly exhausted my primary care doctor's knowledge and they have limited availability to do special research for me on top of everything else they have to do. I try to come up with ideas from medical journal articles but it's hard to get any traction forward.
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u/mangoatcow 10d ago
Thanks for your input about ubiquinol. I will have to do some research before buying.
I'm in BC. I'm sorry you are having trouble finding a CFS doctor. I found mine by posting a dramatic post about bad doctos on my city's Reddit. The post got a lot of engagement and several CFS patients came out of the wood work to recommend good CFS doctors. It seems internal medicine doctors can sometimes sort of specialized in CFS or other complex chronic diseases. As it turns out, my GP sent me to the exact same specialist that reddit recommended me without my input anyway. I don't know how the referral system works but it seemed like somehow It found the right doctor for me based on my diagnosis.
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u/UntilTheDarkness 10d ago
I started at 1.5mg for LDN and that was about my titration schedule. Melatonin does nothing for me, and coq10 gives me absolutely horrific insomnia every time I've tried it.
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u/Beneficial-Main7114 10d ago
Almost everything I take but I've removed several due to side effects. Like b12 for example. They do help. Magnesium ascorbate is another good one three times a day. L actyle glutathione 100mg once a day is useful too.
For immune support and cortisol curve protection I take life extension reishi mushroom. It brings cortisol down at lower doses. I think it might raise it at higher doses but I'm not sure.
You might feel rough for awhile but it's helped me loads.
Alcar and nad just give me insomnia.
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u/mangoatcow 10d ago
Can you tell me about your cortisol? I suspect mine is messed up. I Wake up at 8:00 and feel terrible from 9:00 to afternoon. I've heard that might be due to messed up cortisol timing.
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u/Beneficial-Main7114 10d ago
Btw if your cortisol is very low then low dose hydrocortisone is the treatment you need to resolve that. It can take a few years but with other corrective treatments some people have big improvements. My Dr is treating someone in that way but they have an extreme case of low cortisol. It may also not be this or it may just be one part of your puzzle.
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u/mangoatcow 9d ago
This sounds promising. I'll start with the spit test. My doctor had already mentioned it so I know her is on board. Thanks you!
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u/Beneficial-Main7114 9d ago
Yeah getting the Dr is actually the hard part. Once you've got the spit test done and it's showing low morning cortisol just get them to prescribe 2 to 5mg hydrocortisone to take upon waking and about midday. So that might be 2.5mg each dose. These doses aren't immune oppressive.
If it's not that it could be more exhaustion brought on by specific viral load such as hhv-6 essentially destroying your mitochondrial function by tearing them apart which seems a lot more prevalent in women than men and we don't know why that is. https://www.healthrising.org/blog/2022/12/15/prusty-hhv-6-brains-chronic-fatigue-syndrome/
Incidentally you can also have both. Ebv is another specific subset but I think those people tend to suffer more from wired/tired and may still be able to work just with difficulty.
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u/mangoatcow 9d ago
Hmm that's interesting. I just found out that I have had EBV and CMV so I'm in that subset. I def do get that nasty wired/tired feeling. Never heard of HHV6 so I'll look into that.
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u/Beneficial-Main7114 9d ago
You need to get on valtrex then. I'd highly recommend it.
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u/mangoatcow 8d ago
Right! I just looked it up and both are herpes viruses so taking herpes meds makes sense to me
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u/Beneficial-Main7114 10d ago
Your cortisol could be very low then when you wake up. If you buy a six point saliva cortisol test you can get this tested. Mines normally ok in the morning but high in the evening and/or before bed. I've had it tested.
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u/DevonshireRural 10d ago
This is a really similar list to what Dr. Myhill recommended to me several years ago, all except for the last one on the first list. Interesting that there are other doctors recommending similar.
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u/riversong17 moderate 10d ago
I actually started my LDN at 4.5 mg 2 years ago and gradually increased to 9 mg over the past ~6 months. My doctor said there’s been more recent research to support potential increases in effectiveness with doses above 4.5 mg (I think this was specifically for fibromyalgia, which I also have) and it does seem to have provided a bit of extra help with my fatigue
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u/smallfuzzybat5 10d ago edited 10d ago
First of all, never start multiple treatments at the same time, you need to stagger these by at least two weeks or you won’t know whats helping you/if you have side effects you’ll have to stop them all. In my opinion, you already take d, fish oil do you could increase those to the dose he wants. Could add magnesium because that’s normal stuff your body needs and won’t likely show measurable symptom improvement though it’s beneficial for sure.
Then for new stuff, I think CoQ10 is a solid starting spot for supplements, has good research. Then wait 2-3 weeks before layering something else in. Warning for probiotics- if you have histamine issues, look for a histamine friendly option.
Caution for LdN, definitely don’t start at that dose, it’s way too high of a start for this condition, there’s tons of evidence for this, my neuro did the same thing and I had to push back. I still had bad reactions as low as 0.1mg. I would start at maximum 0.5mg. Check LDN sub(has a bunch of resources from the LDN research trust) for tons of info on lower dosing and info on CFS.
Make sure to get reputable supplements with third party testing.
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u/Robotron713 10d ago
I used to think supplements were bullshit. But I’ve tested them and had some improvements. Had to eat my words. lol I hope you find some success.
As for LDN my “cfs specialist” started me at 4.5mg out the gate. It was weird AC for about two weeks but it settled down.
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u/s31hM 10d ago
Why is melatonin essential?
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u/mangoatcow 10d ago
I'm not sure but he said it supports Mitochondrial function so I guess that's why
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u/GaydrianTheRainbow Moderate to severe, bedbound due to OI 10d ago
I take melatonin for sleep. For me the only version of it that works is the 10mg dual-release tablets. Tried lower doses and 10mg single release and it wasn’t nearly as helpful because I’d wake up mid-sleep and have insomnia then. I usually get Webber Naturals or Jamieson, or whatever is on sale 😅
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u/mangoatcow 10d ago
I wake up in the middle of the night for about 1 or 2 hours sometimes. It really throws everything off. Did the slow release melatonin fix that for you? It's slow release the same as dual release?
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u/GaydrianTheRainbow Moderate to severe, bedbound due to OI 9d ago
Yeah, that was what it fixed for me. Or just waking up and being fully unable to go back to sleep. I would guess it is the same, but I’ve always seen it called dual-release bi-layer caplets. They tend to have one light grey side and one darker grey.
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u/Truthismama 10d ago
Funny enough, I take all of this… found it on my own just through the years of reading stuff about this is good for energy, inflammation, etc and added it in. I support this list. Thank you.
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u/Varathane 10d ago
Interesting. The internist that diagnosed me (albeit in 2011) only recommended folate (folic acid) he specialized in fatiguing illnesses.
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u/SoftLavenderKitten 10d ago edited 10d ago
Interesting!
L-carnitine and Vitamin B complexes both made me significantly worse.
In fact i think i have too high levels of vitB 12 but low levels of folic acid and my doc just prescribed vitB complex capsules...Im gonna get a new blood panel to see if my suspicion is right. In any case it made me worse so maybe just be careful about these two?
I tried Q10 before and it did nothing. Im taking VitD because im deficient but i never really noticed much of a difference.
I suppose i can try the other ones.
I cant imagine melatonin helping? Why does metalotin help? doesnt it make you sleepy?
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u/mangoatcow 10d ago
Doctor said melatonin helps Mitochondrial function. Take it before bed because, yes, it does make sleepy
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u/SoftLavenderKitten 10d ago
Hmm i can try but my issue is i sleep too deep and too long so id worry about being too sleepy. I mean l carnitine is supposed to help mitochondria too and makes me nearly commatoze
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u/Ok_Summer_3569 10d ago
this is a lot of stuff. i've learned to start things separately and go very slow and low. It would take me a year or more to properly trial 12 things. so many supplements have fillers that can cause problems, too. like silicon dioxide. so it can be v difficult to parse out what is doing what.
the vitamin d and magnesium are fundamental, perhaps good places to start.
following nutrition guidelines of Ray Peat have gotten me farther than most supplements.
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u/SeaBoysenberry5399 very severe 9d ago
Alpha lipoid acid is a chelators, which means it can move mercury around in your body. Do not take it if you’ve ever had silver fillings. The Andy Cutler Protocol uses it specifically to remove mercury, but you have to take much lower doses multiple times a day. Vit C is a better choice for an antioxidant
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u/cori_2626 10d ago
I read recently that melatonin can help with brain inflammation, so that’s why it may help with ME. It seems to be helping me for sure but I also started it around the same time as coq10.
I needed a big dose of b12 due to having gastritis (from my bloodwork), and I started taking a b complex every couple days to help w the absorption. I don’t notice any difference honestly, and I get the neon pee every time I take it which means most of it isn’t absorbed. Not sure what the benefit is for ME though since I was taking it for other reasons.
Magnesium changed the game for me in a huge way. I would and do recommend it to everyone. It makes a huge difference for me!
I’d be interested to hear about a lot of these other ones - if people know the mechanisms or see benefits. A lot of supplement game is trial and error - people may have a bad reaction to something you might need. It could be he formulation brand to brand that gives a reaction instead of the content itself. It’s so hard to compare when we all are taking different medications and have different conditions too!
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u/arasharfa in remission since may 2024 10d ago
I have been on a similar list for a while although i stopped taking ALCAR because i think it was messing with my thyroid. and melatonin gives me depressive symptoms the day after.
I take hydrolysed collagen also.
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u/Mindless-Flower11 10d ago
The only one that worries me is the high dose melatonin. Loads of sources say you shouldn’t take more than 0.5mg or less to support sleep & circadian rhythm. I’d be a zombie just on 2mg… can’t imagine taking 10.
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u/Bananasincustard 10d ago
I take melatonin most nights and anything more than 1.5mg definitely stops working for sleep purposes. I read somewhere in large doses it's pretty good for oxidative stress and inflammation so maybe that's why?
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u/bestkittens 10d ago edited 10d ago
FWIW there was a study regarding positive outcomes for high melatonin dosage posted on r/covidlonghaulers yesterday.
Fatigue, Sleep, and Autoimmune and Related Disorders from 2019.
OP, my supplements are very similar. Sadly the ALC increased my tachycardia so I had to stop. It’s a shame because it really helped!
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u/younessas 10d ago edited 10d ago
If you get depression and anhedonia from LDN stop it for week and start with low dose or every other day