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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Post your current ME/CFS supplement stack and what you're thinking about next.

seamyb

Senior Member
Messages
560
It would possibly be of benefit if we had a thread where people posted:

  1. What they are currently taking for treatment (and current level of relief and side effects).
  2. The direction they are considering taking their treatment.
  3. Their reliable go-to supplements/medicines for when things go wrong and they need a guaranteed baseline.
 

seamyb

Senior Member
Messages
560
1. Currently doing Greg's protocol with very limited success. B12 is a hero but it causes pretty severe side effects - air hunger and neck pain. I've also started taking vitamin C and E with a view to the whole BH4 theory.

2. I'm going to slow down my B12 intake and try to increase methylfolate, I'm currently only on 100mcg of this. I'm investigating where the side effects of B12 are coming from and the two obvious choices are not enough folate or not enough potassium. Either way I will need to slow B12 down to try to get enough of either.

I'm also starting to look into amino acids. I tried a protein shake yesterday and had terrible chest pain. Possibly the tryptophan or phenylalanine. Possibly coincidence.

Would love to try BH4 but the price is a no go. Will try to increase this indirectly.

3. I don't really have a reliable level I can return to. If I stop everything I can usually get better after a few days and then worse in a week. When I get worse in a week, a dab of B12 makes me feel great.

My biggest issue at the moment is needing to sleep 10-12 hours. It is such a pain in the ass. Haven't been able to make headway with it.
 

Wishful

Senior Member
Messages
5,854
Location
Alberta
I'm presently supplement-less (except for occasional VitC to prevent scurvy), since the few supplements that did help eventually stopped working because the symptoms they treated had gone away. Hopefully permanently. :thumbsup:

I'm also starting to look into amino acids.

For a simple, cheap test of amino acids, try gelatin. It seems to be fairly pure amino acids. It's not rich in all AAs, but it's a cheap way of testing the ones that it is rich in.

If I stop everything I can usually get better after a few days and then worse in a week.

Maybe stop everything, and after a week, test each component one at a time, with several days between. Cofactors are possible, so if you can't find one factor that is responsible for "everything's" benefits, you can test multiple components. Maybe half of 'everything' at once, to narrow things down.
 

xebex

Senior Member
Messages
840
Niacin - 25-50mg 3x a day
Vit d - 3000mg
Vit C+ quercetin 500mg 3xday
Zinc - 15mg
Selenium - 50mcg

I have been doing Dr Wetzels Covid protocol for 2 weeks ( I am not a long hauler I’ve had ME for 11 years) as I decided to assume they are the same thing.

Most importantly the niacin has improved my muscle fatiguability, resilience, and circulation. I’m back to baseline faster. I had a pretty bad crash last night for instance and am surprised I’m mopping the floor for the first time in a year today! I take 25-50mg 3x a day. I enjoy the mild flush it gives! Lol

The quercetin and vit C seem helpful for my mild mcas. I also take h1 and h2 blockers as needed (maybe 2x a week I’m not sure I should take it daily)

Have not noticed much from the zinc I’ve tried it before and it didn’t do anything but I take it as it’s part of the protocol.

Am also taking selenium in the form of 1 Brazil nut a day - haven’t noticed anything.

I’ve been taking the vit D for years and dont notice much other than if I stop it I do get mild hand cramps.

I attribute my improvement to the niacin but will take the other supps for general immune health.

On top of this protocol I’ve been treating for COMT ++ with SAMe which helps mood but triggers herpes outbreak so I cycle on and off it.

I take b6, 12, 1 and 2 (I divide the pills into 25mg otherwise they give me headaches ) I have not noticed anything, though I take them to support the SAMe.

I take magnesium malate for restless legs which works great and melatonin for sleep which is sort of helpful- I think it makes what little sleep I do get more restorative.

I also take NAC as needed to deal with toxic feeling, interestingly I’ve not needed to take it as much since doing wetzels protocol.

In the last 4 years where I dropped from
Mild to moderate, the niacin is the only thing that has made an impact on the actual PEM/crash side of things. I think it’s moved me from 40% to 50% not sure if it can do much more than that but it’s only been 2 weeks.
 
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Wishful

Senior Member
Messages
5,854
Location
Alberta
So are you in remission? Which supplements were you taking?

Remission from specific symptoms; I still feel brainfogged and overall 'not well'.

LDN blocked my neuropathic pains, and those stopped after a bit over a year of taking LDN. They still can return when my ME is particularly severe.

Cumin (cuminum cyminum) effectively blocked my physically-induced PEM, and after a year or so of that, I stopped having PEM even without the cumin. I haven't noticed cerebrally-induced PEM for a long time, so maybe that's gone too.

T2 (3-5 diiodothyronine: one dose every 21 days) blocked a worsening of my general ME symptoms. I took that, or iodine, which was just as effective (but T4 and T3 were ineffective) for several years, and when I stopped getting PEM, I no longer needed the T2 or iodine.

Meat (apparently the fatty acids) gave me problems at one point, but supplemental carnitine treated that, and after a few months, I no longer needed the supplement. I discovered that supplement by noticing that the carnitine content of beef, pork and chicken were proportional to the amount of each I could safely eat.

I consider myself lucky to have found four supplements or drugs that actually made a difference, and even luckier in that their effects became permanent.


I'm still waiting for a supplement that treats my brainfog. :xeyes:
 

seamyb

Senior Member
Messages
560
I'm still waiting for a supplement that treats my brainfog.

Well I imagine you've been around here long enough to have tried B12. But that's what sorted my brain fog.

I might try cumin actually. I'm toying with the whole BH4 deficiency side of things and it's meant to help with that.
 

Aspen

Senior Member
Messages
145
Good idea, @seamyb ! I’ve only been ill for a little over 1.5 years and need more supplement education, looking forward to reading the thread as it develops. I’m cautious to try new things because of cost and because I don’t know enough about co-factors or my own specific biological makeup yet.

I’ve continued taking the following, as I’ve been on them for 20 years in my healthy life and they seem to help ME/CFS folks in general too:
- Magnesium 900 mg/day (I’ve had to double up from 500 mg/day due to a recent mg deficiency from an MCAS flare). I took it for migraines and sleep in my pre-illness life, and I feel noticeably more tense now if I don’t take it. Side effects are looser stool, but I have constipation without it so I’m all in for that.
- Calcium 1000 mg/day (I have dairy intolerance, so it goes with the magnesium)
- Omega 3 3000 mg/day. No side effects. It helps me immensely with PMS symptoms.
- Vit B Cyano 1ml injection/month (switched from sublingual to injection when I got sick). No side effects for me. It noticeably boosts my mood, and maybe helps a bit with brain fog.
- Vit C 1000-4000 mg/day. This one has been tricky, since I have MCAS reactions to oranges. I’ve been on and off different types of Vit C several times during my illness, looking for something that doesn’t make me react with respiratory symptoms, headache and acne (anyone else get acne with MCAS?). I’ve been taking a powdered form for a few weeks now and it seems to be ok but I still take it intermittently, not feeling super confident about it. I do sleep better and have less rashes when I use it. 🤷🏼‍♀️

I take an H1 antihistamine when I have a big MCAS flare, although I can’t take it more than 1 day at a time since I’m intolerant to the binding agent in the pill (corn) and it counteracts the benefits after 1 dose. Go figure.

I also take 100-200 mg of Ubiquinol during a crash, gives me a nice boost to settle my heart rate and general mental health/energy while I recover. It reduces my sleep too much for regular use, plus I’m not confident about co-factors if I was to use it more.

Current supplement goals:
I’m working with Quercetin and Curcumin this week for the first time, since I got my first Pfizer on Friday and have been worried about a big flare. They’ve been extremely effective for me - mild reaction to the shot for the first 4 days with taking Q & C, and then I had a massive scary flare on day 6 (yesterday) after they wore out of my system. Took an antihistamine and Quercetin and feeling mostly ok today, but I haven’t taken Curcumin again yet because my sleep was badly affected the first few days I was on it. I’d like to figure out how to use it permanently, I have a feeling my high inflammation would respond well to a regular Curcumin dose. I did a deep dive search here for Curcumin experiences (sorry, not enough brain to find the links): lots of folks say they get bad sleep on Curcumin, and one woman said it chelated her iron... which amazingly makes sense since my dad has recently had remission of 45 years of terrible Restless Legs Syndrome by high dose iron infusion. This will be the topic of my next visit with my doc. If I can figure it out, I may not need to take the troublesome antihistamines anymore.

@Wishful, I’m very interested in your Cumin experience. Will put that on my list of things to look into. I also have increased energy and appetite with collagen powder in smoothies (helpful since I’m severe and have bouts of extreme weight loss) so I want to try a regular amino acid supplement when I’m a little more stable - tried it for 2 days once and didn’t feel great, but it could have been a different trigger.
 

xploit316

Senior Member
Messages
158
Meat (apparently the fatty acids) gave me problems at one point, but supplemental carnitine treated that, and after a few months, I no longer needed the supplement. I discovered that supplement by noticing that the carnitine content of beef, pork and chicken were proportional to the amount of each I could safely eat.
:xeyes:

@Wishful Which carnitine did you use (Acetyl, Fumurate or just L carnitine)? I read carnitine is not good for people with thyroid conditions (Im hypothyroid myself), but I really I want to try it since I dont digest proteins or fats well. Taurine, Oxbile, Betaine HCL/pepsin had no effect on my digestion.
 

Wishful

Senior Member
Messages
5,854
Location
Alberta
Which carnitine did you use (Acetyl, Fumurate or just L carnitine)?

Acetyl L-carnitine. I'm not sure whether it affects digestion directly. It's vital for transporting long-chain fatty acids across the mitochondrial membrane. Digestion does use ATP, so I suppose carnitine might help cells in the digestive system. For me it made the difference between feeling really lousy after a meat meal, or enjoying some BBQ chicken or other meats with no problems. I think I took about half a tsp with the meal.
 

Nacht Segler

ME/CFS Since Early 2000s
Messages
238
Location
Eastern PA
It would possibly be of benefit if we had a thread where people posted:

  1. What they are currently taking for treatment (and current level of relief and side effects).
  2. The direction they are considering taking their treatment.
  3. Their reliable go-to supplements/medicines for when things go wrong and they need a guaranteed baseline.
This is what I use.

IMG_2023-05-26-07-19-09-546.jpg

IMG_2023-05-26-07-21-01-675.jpg


(I take the Ginseng complex as needed. I probably won't make the Hawthorne tincture again - I made it initially due to this inner work really being hard on my heart area. All the tinctures except for the Bitters also have an essence blend which I matched to the tincture.)

IMG_2023-05-26-07-22-07-214.jpg


I take one of these in the morning as well with 1/2 tsp of coffee.

That's all my morning stuff *just* to get me through simply getting through the day.

At night I take anywhere from 2-3 Turmeric capsules and a Magnesium L- Threonate.

My Testosterone injections also help me considerably. I take 1cc every other week. Anything less than that 1cc and I would be back to spending most of my time in bed as years ago, a former endo. reduced it and it. was. not. good. So I had my current dr put me back to where I was originally.

No side effects from anything here, it's my own concoction. Tinctures I make myself.

Side Note: I have also been on an anti-inflammatory diet for a year now which has helped immensely and I think helps my supplements work better since they don't have to work "through" all that inflammation. I went from a size 36 to 33 waist. Keep in mind I am 43 and my waist size when I was in my early 30s, was 30. The diet has also helped my oral health as my gums don't bleed as much - not as sore, irritated, and inflamed.

I think the direction I am looking at going is cutting down on "irritants" - things that cause irritation, inflammation, etc. Beyond that, I am not sure. I am, however, looking at collagen powders right now.

All that's shown/mentioned is my baseline.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,138
Location
australia (brisbane)
My current vitamin stack -
Melatonin 10-20mg to regulate sleep pattern and its antioxidant effects especially in the brain.

Dhea 25mg/day, I test low so the replace low dhea levels. It can help balance the negative effects of cortisol. Also a neurosteroid so is used by the brain for proper brain function. It can help make down stream hormones like estrogen and testosterone.

B-Right with activated B vitamins and folate, help methylation and to help keep Homocysteine down.

B6 100mg daily, extra b6 helpful for immune system.

NAC 600mg twice a day for its ability to make glutathione and its general antioxidant effects and its ability to protect the liver.

Vitamin K2 for heart health as it helps direct calcium away from blood vessels where it can get calcified and to the bones. So it can be great for increasing bone density along with vitamin D and Magnesium.

Benfotiamine 150mg daily, fat soluble form of vitamin b1 which can help with nerve pain and can help regenerate the nerves. Specifically using it to help with reoccurring shingles on my head.

Vitamin E/mixed tocerophils is a good fat soluble antioxidant, great for heart health and great for reduces platelet aggregation, similar to daily aspirin but more other positive effects with vitE.

Immune Support supplement 1-2 a day, because it has 4 supps in 1 with a good dose of all of them and basically a good antioxidant and good for immune system. Vit C 500mg, vitD 1000iu, zinc 10mg, selenium 50mcg.

Lipoic acid 300mg twice a day. Helps recycle other antioxidants. Improves insulin sensitivity and can reduce the pain of neurophysiology.

Q10 200mg per day, another great antioxidant that also helps with mitochondrial function. I'm also on a statin for cholesterol which depletes our natural Q10 levels so I also take it to replace what stations ma be depleting.

Astragalus 1000mg twice a day. I mostly take this to improve kidney health. It improved my below normal eGFR, a marker for kidney health to well above the normal range. I think it works mostly by lowering creatinine levels. Astragalus also is used fir increasing immune function. In the past I haven't seen increases in natural killer cell number or my low neutrophil numbers increase.

Fish oil 3000mg twice a day for omega 3 fatty acids to help improve the ratio of omega 3s to omega 6s which can improve cholesterol and also may reduce inflammation.

Magnesium glycinate 100mg twice a day for general health and because most people are said to be low in Magnesium. I take some at night to help sleep and another dose sometime during the day. Also hoping it helps reduce headaches as its one of the most common nutrients recommended for migraines.

HMB a derivative of the amino acid leucine and I take 1000mg 3 times a day if I remember but atleast twice. I find when I do weight training it helps muscle recovery alot quicker, much less next day soreness but doesn't help joint soreness if joints are an issues but definitely I've found helps muscle recovery. Some research that it may slow down and even reserve sarcopenia ie the loss of muscle tissue as we age.

Pregnenolone 50mg a day when I can get it. It's a neurosteroid like dhea. I've found it can help raise my low morning cortisol levels to the midrange of normal and help energy. It may help other down stream hormones in the hormone cascade, especially since Pregnenolone is at the top of the stream. It does seem to help those with adrenal fatigue/dysfunction.

Vitamin D 50000iu capsules, I take one once a week or maybe a fortnight for general health etc.

Nothing new supplement wise I'm looking to add to my stack. Most of them I've been using for years. Most don't really help directly with cfs but may treat a defiency or several of them are good antioxidants that work well together and lower oxidation can have a knock on effect with lowering inflammation as they are closely related.

That's enough. I try to buy them on special. Mostly from iherb, Swansons or Vitacost and work out the best deal. Swansons seem to be the best of late.

Cheers
 

Nacht Segler

ME/CFS Since Early 2000s
Messages
238
Location
Eastern PA
NAC 600mg twice a day for its ability to make glutathione and its general antioxidant effects and its ability to protect the liver.

Benfotiamine 150mg daily, fat soluble form of vitamin b1 which can help with nerve pain and can help regenerate the nerves. Specifically using it to help with reoccurring shingles on my head.

These two interest me in particular -

The NAC, I wonder if it would help alongside the Glutathione that I am taking.

The Benfotiamine I wonder if it would help the damage my nerves went through (years ago) with sciatica, but also help the damage that happened to my brain.
 

L'engle

moogle
Messages
3,257
Location
Canada
Currently my daily supplements are methylb12 and reishi extract.

Additionally I usually take at least one other of:

Benfotiamine or regular b1
Riboflavin (on same days as bft/b1)
l-carnitine fumarate
luteolin/rutin
vit a, k2(mk-4), d

As needed:
zinc, magnesium, potassium (citrate, bisglycinate forms)
(please no replies about how nobody actually needs one/any of these, I won't answer)

Next planning to try lion's mane.
 

L'engle

moogle
Messages
3,257
Location
Canada
Dhea 25mg/day

I'm pretty sure I need a small amount of this but can't buy it here and supplement companies won't even ship it.
Would have to find a doctor to prescribe which they generally won't.
I took it a long time ago and it did help with exercise tolerance.
 
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