• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Methylation protocol or Mito cocktail

pattismith

Senior Member
Messages
3,941
The methylation protocol is supposed to

• Create glutathione (the body's 'master' antioxidant and detoxifier),

• Produce energy,

• Impact brain chemistry,

• Repair DNA,

• And make melatonin from serotonin.

http://www.prohealth.com/library/showarticle.cfm?libid=16138

Methylation protocol is Multivitamine + B12 + MethylFolate + Folinic acid + Lecithine

By the way, I observed on PR that most patients take many other suplements from the mito cocktail too....

Maybe time to do a synthesis?

This doctor's Mito Cocktail in 2017. They keep tweaking it and making it better. But then again, each patient is different.

View attachment 23451
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@pattismith Excellent observation. This is exactly what my doctor has me doing.

Once a week, I get an IV with methylation and mitochondrial nutrients and I'm on a daily oral protocol of them, too. The list includes:

NT Factor
PolyMVA
CoQ10
L-carnitine
D-ribose
Creatine
Magnesium malate
5-MTHF
Folinic acid
Methyl B12
P5P
R5P
High Potency B complex
L-methionine
Glycine
Phosphatidyl serine
NAC
Glutathione
Molybdenum
Citrulline
NADH

It helps me function better than I would otherwise and people comment on how well I look... It's keeping me going while I go after my immune problems, which are many.
 
Last edited:

pattismith

Senior Member
Messages
3,941
@pattismith Excellent observation. This is exactly what my doctor has me doing.

Once a week, I get an IV with methylation and mitochondrial nutrients and I'm on a daily oral protocol of them, too. The list includes:

It helps me function better than I would otherwise and people comment on how well I look... It's keeping me going while I go after my immune problems, which are many.

very interesting!:)

While I am experimenting suplements on my own and monitoring my blood lactates at the same time (hopefully I have got that blood parameter I can follow to study my condition), I observed that big doses of Methyl folate and Thiamine are critical to keep my lactates low. (I am MTHFR homozygous mutated)
What is your daily intake of Thiamine in your protocol?

I also observed that Methylfolate 2000 µg/day helps a lot to lower my lactates, but gives me a very strong headache...So I wonder if I should switch to folinic acid.
I checked my Potassium (3.9 mmol/l so it is fine), and I consider I may be deficient in some other thing, maybe Methionine.
 

pattismith

Senior Member
Messages
3,941
@Learner1 ,

just one more question about your protocol, why taking Gluthation? isn't the methylation protocol itself supposed to raise the gluthation level?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I don't take oral glutathione.

In my IV sequence, PolyMVA, an alpha lipoic acid polymer, can pull toxins out of mitochondria, which need to get out of me quickly. I get IV glutathione and molybdenum together to help this, while the remainder of the IV, B vitamins, minerals, and aminos, keeps me going for the week.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
very interesting!:)

While I am experimenting suplements on my own and monitoring my blood lactates at the same time (hopefully I have got that blood parameter I can follow to study my condition), I observed that big doses of Methyl folate and Thiamine are critical to keep my lactates low. (I am MTHFR homozygous mutated)
What is your daily intake of Thiamine in your protocol?
Interesting about the lactate. Hadn't thought to track that and not something my docs, who do a lot of labs, have been interested in. I had low pyruvate and low normal lactic acid on my NutrEval, though.

Thiamine is important. It gets used a lot of places. Its in the IV and injectible high potency B complex in some proportional amount and I take 500mg Life Extension benfotiamine.

I also observed that Methylfolate 2000 µg/day helps a lot to lower my lactates, but gives me a very strong headache...So I wonder if I should switch to folinic acid.
I checked my Potassium (3.9 mmol/l so it is fine), and I consider I may be deficient in some other thing, maybe Methionine.
Methionine is NOT for everyone. I am only on it as my homocysteine has been 3-4 and its low on a NutrEval. Playing with it and SAMe can screw up your mood, so be careful. My doctors try to avoid methionine.

I'd bet if you load up on MTHF that you don't have enough stuff to get through the methionine cycle.

You need to work backwards, with enough B1, taurine and molybdenum for transsulfuration. Enough B6, glycine, glutamine and cysteine to make glutathione, enough magnesium, potassium, B6, riboflavin and ATP to run the methionine cycle. And maybe TMG, depending on BHMT.

Then you dose up on folate. You'd likely do best with 5-MTHF, not folinic acid, so its the other stuff.

If you DO luckily have enough ingredients already, you may be mobilizing something toxic, so you need enough glutathione, ability to recycle it, working transsulfuration. If you're still overwhelmed, taking 2-3g of curcumin, like Meriva, will help.

But, from your comments, sounds like you need transsulfuration support.

If you haven't done a NutrEval, you might find it quite helpful in balancing everything.
 

Mary

Moderator Resource
Messages
17,373
Location
Southern California
I also observed that Methylfolate 2000 µg/day helps a lot to lower my lactates, but gives me a very strong headache...So I wonder if I should switch to folinic acid.
I checked my Potassium (3.9 mmol/l so it is fine), and I consider I may be deficient in some other thing, maybe Methionine.

Even though your blood levels of potassium may be fine, you could still be low in intracellular potassium. Former PR member Richvank (who unfortunately died suddenly a few years ago) did a very good post explaining how persons with ME/CFS can tend to have low potassium in the cells, while their blood levels are normal. I'm one of those people. My blood work on potassium was always in the normal range, although on the low side. But I experienced symptoms of low potassium (the worst was severe fatigue) a day or two after starting methylfolate. Here's Rich's post: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

I found I had to titrate up to 1000 mg potassium, in divided doses, for my symptoms of low potassium to abate. And have kept taking it ever since (some 7 years now). I also drink low-sodium V8, which is high in potassium.
Interestingly, I realized I had had that severe fatigue before I even started the methylfolate, though I never knew what it was, but it doesn't happen any more since I stay on top of my potassium levels.

An easy way to see if potassium would help you would be to try something like low-sodium V8 (900 mg potassium in an 8 ounce glass) or coconut water, or whatever your prefer. I like the low-sodium V8 because it's low in calories and sugar. I don't think one banana would be enough if low potassium was part of the problem for you.
 

pattismith

Senior Member
Messages
3,941
Methionine is NOT for everyone. I am only on it as my homocysteine has been 3-4 and its low on a NutrEval. Playing with it and SAMe can screw up your mood, so be careful. My doctors try to avoid methionine.

I'd bet if you load up on MTHF that you don't have enough stuff to get through the methionine cycle.

You need to work backwards, with enough B1, taurine and molybdenum for transsulfuration. Enough B6, glycine, glutamine and cysteine to make glutathione, enough magnesium, potassium, B6, riboflavin and ATP to run the methionine cycle. And maybe TMG, depending on BHMT.

@Learner1 , than you! I am conscious I am not yet at the top for supplementing, but I try to learn from PR, I do my best :lol:
I already take B6, riboflavine,magnesium, vitD, also Biotine, Nicotinamide.
I just wait my second order of Dymatize 100 Iso (whey isolate) to arrive, I hope all the amino acids I need are in it.
I had stopped NAC for a while but will take it again, and I already ordered Molybdenum

I tested my homocystein in 2011, it was 6 µmol/l which is low.
Do you mean that I shouldn't take Methionine because my homocystein is low?


Even though your blood levels of potassium may be fine, you could still be low in intracellular potassium. Former PR member Richvank (who unfortunately died suddenly a few years ago) did a very good post explaining how persons with ME/CFS can tend to have low potassium in the cells, while their blood levels are normal. I'm one of those people. My blood work on potassium was always in the normal range, although on the low side. But I experienced symptoms of low potassium (the worst was severe fatigue) a day or two after starting methylfolate. Here's Rich's post: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

@Mary , thank you for your experience. I eat a lot of grated coconut , but I will try to increase my potassium supplementation: headache can clearly be a sign of deficiency, it makes sense to me!:thumbsup:
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I already take B6, riboflavine,magnesium, vitD, also Biotine, Nicotinamide.
You may need more B6 and B2 than you think. B6 is used on a lot of steps, plus in making sphingolipids which the metabalomics study says we may have issues with. P5P is the best version.
I just wait my second order of Dymatize 100 Iso (whey isolate) to arrive, I hope all the amino acids I need are in it.
I hope so. My needs don't match up well with most powders so I have to supplement with capsules of what l need. You might have your doc run your amino acids to see.
I had stopped NAC for a while but will take it again, and I already ordered Molybdenum

I tested my homocystein in 2011, it was 6 µmol/l which is low.
Do you mean that I shouldn't take Methionine because my homocystein is low?
The situation where you may need methionine is when homocysteine is low, as you can't recycle back to homocysteine then back to methionine and make SAMe if it goes too low. 6 is ok, but below may mean you need to supplement. Mood symptoms and an amino acid test may guide you.
 

pattismith

Senior Member
Messages
3,941
I felt my brain was going to explode (very difficult to functionnate when you have it), and I also had pain in my fingers joints (left and right index) so I had to do something quickly. I switched to folinic acid but I was still with a head like a baloon after taking it. Hopefully I found in my drawer some essential amino acids that I had left there because the taste was very bad. I felt better very quickly hopefully!
It seems that my brain is very sensitive to missing amino acids. I suffered from this kind of head pressure already years ago but wasn't supplementing me at that time like I do now.

Our fragile balance can be very easily disrupted!

You may need more B6 and B2 than you think. B6 is used on a lot of steps, plus in making sphingolipids which the metabalomics study says we may have issues with. P5P is the best version.

I take B2 = 400 mg/day and B6 = 250 mg/day
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You might be interested in this book:

https://www.google.com/url?q=https:...ghFMA0&usg=AFQjCNHqwl3QhB_AG8uLHrjeVJZsX4sEZg

I'd seen it recommended by various people. Its about 30 years old, but I was impressed reading it as we had amino acid test results for 4 family members and they aligned pretty well with the health issues he matches up with amino deficiencies/supplementation.

Sounds like you ARE taking plenty of B2 and B6. You might find some insight in this article or the companion articles mentioned in it:

http://mthfr.net/methylfolate-side-effects/2012/03/01/
 

pattismith

Senior Member
Messages
3,941
You might be interested in this book:

https://www.google.com/url?q=https:...ghFMA0&usg=AFQjCNHqwl3QhB_AG8uLHrjeVJZsX4sEZg

I'd seen it recommended by various people. Its about 30 years old, but I was impressed reading it as we had amino acid test results for 4 family members and they aligned pretty well with the health issues he matches up with amino deficiencies/supplementation.

Sounds like you ARE taking plenty of B2 and B6. You might find some insight in this article or the companion articles mentioned in it:

http://mthfr.net/methylfolate-side-effects/2012/03/01/

thank you @Learner, it sounds like I got many of the side effects, including my acne flaring...:D

I am going to read it carefully!:thumbsup:
 

pattismith

Senior Member
Messages
3,941
I've already tryed some things advised to fight the side effects, for example I took 500 mg of Nicotinamide (much more than what is advised here)...

Usually it gives me a sudden flushing, which is supposed to do...But this time it didn't, so I supposed it was all broken by excessive SAMe...:thumbsup:

Interesting that they doesn't suggest amino acids in that case, but it helps for me...

I'm really thinking about buying Glutathion supplement, I may be a good candidate for it as well :love:
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Having adequate aminos is important make the entire system work, so upping amino intake through food or supplements may help.

Glutathione is a short term fix. It doesn't stay long in the body, so its better to be consistently making it.

I've had good results with taking curcumin, too. One possibility is that adding folate could be making the entire system work and you could be mobilizing somectoxin, giving you your symptoms. In this case, curcumin can help, as well as ensuring you have sdeqyluate water, fiber, and transsulfuration pathway nutrients, like B1 and molybdenum.

Did you mean niacinamide? Or nicotinamide riboside?
 

pattismith

Senior Member
Messages
3,941
Having adequate aminos is important make the entire system work, so upping amino intake through food or supplements may help.

Glutathione is a short term fix. It doesn't stay long in the body, so its better to be consistently making it.

I've had good results with taking curcumin, too. One possibility is that adding folate could be making the entire system work and you could be mobilizing somectoxin, giving you your symptoms. In this case, curcumin can help, as well as ensuring you have sdeqyluate water, fiber, and transsulfuration pathway nutrients, like B1 and molybdenum.

Did you mean niacinamide? Or nicotinamide riboside?

niacinamide/nicotinamide/niacin are several name for the same vitamine (closed forms if I understood it well).

I take high B1 doses because it helps a lot with my hyperlactatemia, and I will start molybdenum soon.

The other thing that I stopped a few days before I got major side effects (because I thought it won't be harmful to stop it) is also NADH, so I will soon go back on it + amino acids.:love:
 

pattismith

Senior Member
Messages
3,941
Update:

I went back on NADH 50 mg twice a day (is it the dose you take @Learner1 ?), amino acid, and I also took at the same time Ubiquinol 200 mg twice a day (same dose as @BeautifulDay was given by her doc) , and definitly felt better.
From a non functioning mode, I switched to a functional mode, with my pressure in head, my joints pain, my muscles stiffness and burns all going away....
oups, next time, I will think twice before stopping any supplement!

The thing is that I had to stop folates and strangely my lactates are rising again and I don't know why...:thumbdown:
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I take 200mg CoQ10 also.

For NADH, I use the Enada sublingual, supposed to be more bioavailable. I take 10-20mg just before I exercise or if I need to function for a social event (which isn't often).

Do you take pantothenic acid (B5) and how are your amino acid levels?
 

pattismith

Senior Member
Messages
3,941
I take 200mg CoQ10 also.

For NADH, I use the Enada sublingual, supposed to be more bioavailable. I take 10-20mg just before I exercise or if I need to function for a social event (which isn't often).

Do you take pantothenic acid (B5) and how are your amino acid levels?

I was on Ubiquinone 360 mg/day, but feel much better with Ubiquinol 200 mg twice a day.
 

pattismith

Senior Member
Messages
3,941
I was on Ubiquinone 360 mg/day, but feel much better with Ubiquinol 200 mg twice a day.

Update on my experiments:

although I was better on energy levels with Ubiquinol, I had strong side effects (headache+digestive issues)
And my lactates levels went back to higher levels (with peaks up to 2.9 mmol/l)...which was not expected at all!
So I had to stop this supplement...

This evening, I went back on Ubiquinone (I was taking it for several weeks before the Ubiquinol trial)...

Immediatly my lactates were back to low levels, that's amazing! (below 0.8 mmol/l 90 min after a meal).

(My levels never went below 1 mmol/l since I had started Ubiquinol)

I still struggle with the methylation protocol (very bad and quick reaction to methylfolate), finding the optimal supplementation protocol is a full time job!:lol: