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

seamyb

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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

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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

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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

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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

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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

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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

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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.
 
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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

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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.