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Sherpa's Methylation Journal

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
I came to Phoenix Rising looking for help with my CFS. I found the concept of "methylation protocols" to be fascinating but incredibly complex. If I were still experiencing the terrible brain fog, it would be impossible to understand.

It was especially difficult to find detailed personal experiences that explained exactly which supplements someone took and how it affected them.

Therefore, I am going to keep a journal of what I take and how it affects me, and what I learn in the process.

Hopefully, maybe, this journal will be helpful to others who embark on a methylation protocol.


----

What is a Methylation Protocol? It's basically a vitamin program where you take active forms of Vitamin B12 and folate. A percentage of the population can't convert the common synthetic forms of B12 and folate (found in multivitamins and processed food) into usable nutrients. Some people have genetic mutations that make them susceptible to poor conversion. Some of these "poor converters" are those who suffer from CFS. Taking bioavailable forms of B12 and folate (methylfolate) can, in some cases, restart the processes the body needs to generate energy and improve CFS symptoms.


About Me:
I am a 37 year old male who has been stressed most of my life and battling chronic illness for 3 years. I collapsed in Fall 2011 with a severe case of AFS (adrenal fatigue syndrome) with terrible brain fog, fibromyalgia, muscle & collagen wasting, etc.

After 2 years of self-navigating Dr. Lam's vitamin protocol, careful diet and yoga... most of my worst symptoms went away.

I "partially recovered" and I now suffer from a milder case CFS. I can do full-time office work but it takes a lot out of me. I am very sensitive to sunlight & high humidity - afternoon sun can cause crashes. When stress or activity levels rise beyond the limited normal range, I experience the following symptoms:
  • Delayed onset fatigue
  • PEM (post exertional malaise) - flu-like feeling minus sniffles
  • diffuse muscle pain
  • sleep disturbances
  • peripheral neuropathy - tingling in the arms

I am "mostly" functional, but require lots of rest and pacing... often feel like I'm on "house arrest" apart from work or shopping. Being reliable enough to make friends and date is difficult.

I also suffer from OCD, which I am hoping to address on the methylation program.
 
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Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
Daily Current Supplement Regime (Pre-methylation protocol):


This protocol, which took years to refine, has been blessing me with energy to work and do activities until about 9 p.m. on most days... but at that point I quickly "run out of steam" and can't go to evening or nighttime events that are very common for people of my age.

Freddd discourages folic acid and cyanoB12 due to possibility of blocking nutrient absorbtion and causing a paradoxical deficiency in some people.. so I am going to try getting off my multivitamin that contains it.

Diet:

I follow the Primal Blueprint diet - a high fat, moderate protein, low carb "paleo" type diet. Plenty of organic (sometimes grass fed) beef. Tons of steamed veggies. Grass fed butter. Eggs. No starches or grains except for a little sweet potato with dinner. Limited fruit (small piece after dinner). This diet has been key in improving my health (damaged by years of high carb stress eating), raising my energy, healing my gut. I am NEVER hungry and never craving sugar on junk on it. :)
 
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Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
For the past 5 days I have taken 1/4 tablet Enzymatic Therapy B12 Infusion (250 mcg MethylB12) under my lip. I intended to try it out once just to "test the waters" and see if a methylation protocol was for me, but I liked the effect so much I continued.

It has given me this subtle euphoria and a "eureka!" feeling. It feels like "exactly the stuff my body needs."

Positive effects include:
  • Neurological "brightening" - brighter colors, increased visual clarity
  • improved mood, less subtle depression
  • more stamina and energy
  • less fear and anxiety, possible soothing of limbic / amygdala
  • significant increase in libido and intensity of sexual sensations
  • possible increased tolerance to sun & humidity (but not 100% sure its the b12)
Possible "startup" effects include:
  • Light insomnia - slightly a harder time falling asleep
  • slightly increased pherpehial neuropathy (tingling in arms) - with no increase in activity
  • Have wanted or needed an afternoon nap around 4 p.m. most days, although energy is overall higher.
Yesterday I received a sample vial, and mailed off my sample for the 23andme genetic test. Hopefully this will provide insight onto any mutations causing nutrition or methylation problems that need to be address.
 
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deleder2k

Senior Member
Messages
1,129
Thank you so much for sharing.

Isn't 250 mcg Methyl B12 way too low? I take Jarrow's 5,000 mcg sublingual. Went to my doctor last week, and she told me that I needed high dose injections of hydroxocobalamine if I wanted an effect from the B12. She prescribed me 10 mg Sterop hydroxocobalamin for injection 1 time every week.
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
Thank you so much for sharing.

Isn't 250 mcg Methyl B12 way too low? I take Jarrow's 5,000 mcg sublingual. Went to my doctor last week, and she told me that I needed high dose injections of hydroxocobalamine if I wanted an effect from the B12.

@deleder2k I think it depends on how sick you are, how deficient in B12 you are, etc. I work nearly full-time and am closer to recovery than I was a few years ago. You mentioned being mostly housebound and feeling terrible, maybe you need higher sublingual dose and injections? Or... on the other hand... maybe a B12 deficiency is not a primary factor in your CFS?

I am very new to this and don't know how to advise you.

I interpret my response to a small dose to mean I am deficient in b12 and that this protocol MAY work in my case.
 
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deleder2k

Senior Member
Messages
1,129
It is wonderful to hear you're feeling better.

Why do you split the pills in 4? Is your plan to gradually increase the dose? I am as you said housebound, so it may be that I need a much higher dose. But do you got anything to loose by upping yours? From my understanding you simply can't take too much of it.
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
Why do you split the pills in 4? Is your plan to gradually increase the dose?

I navigated the maze of my my chronic illness so far by very carefully adjusting the doses of my supplements - the "start low and go slow" philosophy.

I find it's best to see how things affect you before taking more. Many times I have experienced terrible crashes or reactions from taking the "normal" dose of a vitamin or herb recommend (30mg of CoQ10 fills me with anxiety & paranoia.. and some CFS books say to take 200mg!) Also, at first I could not tolerate d-ribose.. but by going slow from 750mg to 5000mg... my body accepted it.

It's also economical to get the maximum "mileage" out of a low dose, before your body adjusts to it and wants more.

I have a feeling my body may develop a tolerance to 250mcg of Mb12 and soon want more to keep up the same effect. Yes, I will probably increase the dose - if I need to in order to sustain the good effect. But for now I am riding the wave slow.
 
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Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
I have successfully tapered off of the Energy Revitalization System and 650mg of NAC that I have taken daily for 6 months. This means no more folic acid, as I eat no processed food. The first couple days were rough: I felt emotionally volatile and easily irritated by rude customers at work. I attribute this to a sudden drop in boosted glutathione production (?).

I slowly switched over to Doctor's Best Fully Optimized Multiple - a multivitamin containing 400mcg methylfolate and 1000mcg methylb12 at the full dose (3 tablets), and moderate-high doses of B vitamins.

I took 1 capsule for 3 days, then 2 capsules for 3 days, then bumped it up to 2.5 capsules for the past 3 days.

At the 2.5 tablet (300 mcg methylfolate, 750mcg oral methylB12) dose, I could definitely feel something working. I felt:
  • a little euphoria
  • more emotionally "solid" and calm,
  • more energy - I did not run out in late afternoon and evenings like usual.
  • return of dream activity, remembering dreams (from the B6 + p-5-p?)

I wonder if I am producing more methyl groups - making more glutatione and SAMe - this early on???

The noticeable negative effects to the new basic nutrition platform are:

  • Feeling a little mentally foggy or "off" for some moments
  • Waking up at 5 a.m. - (previously my sleep was excellent and I was able to sleep to 7:30 am).
  • Stabbing pain / muscle cramp in my right calf this morning when I awoke early this morning
I am a believer in supplements through food whenever possible, so I have been consuming a normal amount of coconut water & avocados for potassium.

Is 300mcg methylfolate and 750mcg oral (not sublingual) MethylB12 enough to induce potassium deficiency? Do I need to be taking K tablets?
 
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Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@Sherpa ,

My guess is that your "emotionally volatile and easily irritated" state were due to lower serotonin (and maybe dopamine?) produced in the biopterin cycle. Did you post that you have the MTHFR A1298C mutation, or did I just assume that from your OCD and other biopterin symptoms (paranoia with CoQ10, and do I remember right that you've had migraines)? And your little euphoria/more emotionally solid - that would be from the methylfolate turning the biopterin cycle to give you more serotonin, not from more glutathione (my opinion only.)

Muscle cramps are sometimes potassium, and I don't think anyone can say how much methylation is needed to produce potassium deficiency in a given person (meaning you ;).) Coconut water is mostly sugar and potassium - mine has 620 mg K and 15 g sugar per single serving - it's one of the best ways to get potassium from food, (also my opinion.) I don't know what a normal amount is, but one serving is more K than 6 potassium tablets. Muscle cramps have other causes, too: underuse, overuse, low calcium...there are more, but these are the most common. I think that one muscle cramp is not enough to make a conclusion of low potassium, particularly if you are having coconut water on a daily basis. Same with other symptoms like passing brain fog: once occurrence is not enough to spot a trend. But I like it that you are watchful and taking notes. It will end up giving you some very useful information.

About your sleep: the question is not when do you wake up, but whether your sleep is restful and enough. Personally, I get up around 4:15, but I live in the desert and if I'm going to be outside getting physical exercise, I want to do it before it gets too warm, and mostly before the sun rises. So I get to bed between 8:15 and 9:30 most nights, and I sleep well when I am asleep. You are going to have to expect some changes. If you're sleeping better, you may not need as much sleep. If you're not running out of energy in the late afternoons, maybe it's enough. :rolleyes:

Ok, those are my thoughts. You seem to be making progress. Going slow and taking notes - great practices!

Critterina
 

Gondwanaland

Senior Member
Messages
5,092
Hi @Sherpa

I am the last person here likely to give advice, but want to share my experience with you regarding potassium.

When I found out about methylation I was already taking mB12, having immense gains alternated with fatigue 2-3x a week. I didn't have CFS but had a ton of B12 defficiency symptoms.

I didn' t have potassium on hand when I decided to take mFolate as well (huge mistake). I thought I would be able to manage it drinking coconut water and eating bananas and avocados (another huge mistake). When the leg cramps came I overdid with coconut water and became salicylate and mB12 intolerant, loosing all the gains.

Also I had been struggling to find a form of magnesium I could tolerate. I do not tolerate aminoacid chelated minerals (glycinate, aspartate, citrate etc) probably due to high ammonia/CBS upregulation (I don't have a genetic test), and for sure due to high uric acid.

When my potassium order was delivered (KCl and K gluconate in powder form) I found out I didn't tolerated these either (they caused pituitary electricity). So it took me another while reseraching a tolerable form and waiting for a new delivery.

Just now I have found tolerable forms of K and Mg and have them on hand (MgO and K bicarbonate). These are helping me to alkalinize my system in order to tolerate food and supplements again. Sodium bicarbonate in the bath tub has helped as well. I still do not tolerate vitamin C supplementation though.

  • Stabbing pain / muscle cramp in my right calf
This could be Mg deficiency. I have learned the hard way that taking a B complex will exacerbate one's need for minerals. So I dare to advise you to find a form of Mg and K that you are comfortable with and stock them up. Zn might be needed too. I've already had vitamin E and Omega 3 on board for longer time.

Wishing you all the best,

izzy
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
I thought I would be able to manage it drinking coconut water and eating bananas and avocados (another huge mistake). When the leg cramps came I overdid with coconut water and became salicylate and mB12 intolerant, loosing all the gains...

...(KCl and K gluconate in powder form) I found out I didn't tolerated these either (they caused pituitary electricity)....

Just now I have found tolerable forms of K and Mg and have them on hand (MgO and K bicarbonate). These are helping me to alkalinize my system in order to tolerate food and supplements again.
Izzy,

I'm curious (about several things in your post). How much coconut water were you drinking? And how much K (bicarbonate) did you need to overcome the leg cramps?

How did you know what pituitary electricity felt like or that this is what the alternate forms of K caused?

Mg oxide is used as a laxative, as it isn't absorbed well. How do you get it to absorb and keep it from giving you the runs?

Thanks. I'm often confused as to how people know the things that the write. Your clearing this up for me will help.

Critterina
 

Gondwanaland

Senior Member
Messages
5,092
Izzy,

I'm curious (about several things in your post). How much coconut water were you drinking?
About 1 liter daily

And how much K (bicarbonate) did you need to overcome the leg cramps?
I haven't yet resumed methylation since the delivery of the K bicarb. The slight leg cramps I was having from the B complex disappeared once I could tolerate Mg. Also the Na bicarb baths and the MgO supplementation apparently resolved my frequent, high volume urination. Now I will be able to revert my mild dehydration and hopefully will tolerate vit C soon. The Mg will also help me to retain potassium.

How did you know what pituitary electricity felt like or that this is what the alternate forms of K caused?
I assumed the electricity I feel is in the pituitary after searching for possible reasons I was reacting to vitamin C. My reaction to vit C ist that strange electricity feeling behind the eyes probably due to electrolyte imbalances. Since adrenals and pituitary are the main vit C storing glands in the body, I made the connection. When I took Mg glycinate and citrate and KCl and K gluconate I had that same unpleasant sensation.

Mg oxide is used as a laxative, as it isn't absorbed well. How do you get it to absorb and keep it from giving you the runs?
I take 600mg of MgO at bedtime with no benefits regarding my chronic constipation. Since I started tolerating Mg, I have been experiencing tooth remineralization, to my amazement and pleasure!

Thanks for asking!

izzy
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
@Critterina
I have never had migraines (thankfully) and my genetic tests won't be in for a couple more weeks. I suspect I have stress-induced mitochondrial damage (CFS) and some sort of purely-obsessive OCD.

@Gondwanaland Thanks for your detailed experiences on a methylation protocol. It sounds like your body was extremely sensitive about the forms of mineral supplements. 1 liter of coconut water is a lot. What doses of mB12 and mFolate were you taking when you started to experience mineral deficiency symptoms?

I was hoping I could avoid them at first by sticking to low dosages (< 400mcg methylfolate) at first.
 
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Gondwanaland

Senior Member
Messages
5,092
1 liter of coconut water is a lot. What doses of mB12 and mFolate were you taking when you started to experience mineral deficiency symptoms?

I was hoping I could avoid them at first by sticking to low dosages (< 400mcg methylfolate) at first.

I started mB12 in late January at 500mcg. As I begun to have fatigue 2-3x a week after the 1st week (the honeymoon period), I increased the dosage slowly up to 1.5mg. It didn't help. So for a month I experimented with different doages between 500mcg and 1.5mg.

Then in early March I introduced mFolate at 200mcg and felt no difference. After one week I increased it to 400mcg and on the following day I took 800mcg by mistake. A terrible congestion set in (liver congestion) and a couple of days after that I had terrible cramps at the yoga class. Since then I bacame unable to exercise due to cramps, PEM and breathing difficulties (and later also glottis edema).

Breathing difficulties took me to the ER 3x in late March and early April. Of course at the ER they were at no help since my acidity hasn't been measured at all. They thought I was "only" having a panick attack (not wrong, but not a full diagnosis). The last time the doctor who saw me called my glottis edema a "goiter".

It was summer and I had been drinking 0.5 liter of coconut water 2-3x a week. When the congestion set in and my potassium order hadn't been delivered yet, I increased the coconut water intake to 1L daily for a few days to see it would help with the congestion/anxiety.

What I didn't know is that the congestion and the cramps were two different issues. The congestion was the salicylate sensitivity setting in. To worsen everything, I took 150mg silymarin to help with the congestion and then crashed. Then a series of mistakes followed and I also became sensitive to amines.

Now I am following clues to biotinidase defficiency that could be causing high acidity in my system. I've had symptoms of biotin defficiency for a long time (hairfall, facial rash...) which are made considerably worse from eating egg whites (even cooked). (raw egg whites contain avidin which binds to biotin making it unavailable).

So yes, it can be a snowball.

izzy
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
I am experiencing side effects that I feel are most likely caused by the methylfolate & mB12 in my new multivitamin. :(

I rather quickly worked up to 400 mcg methylfolate + 1000mcg mB12 oral + 250mcg Enzymatic mB12 sublingual - all taken first thing in the A.M.. I felt some good effects: more mental clarity and physical energy, less fatigue. But I also got some mild-to-moderate negatives:
  • Hoarse voice - a symptom also described by @Victronix .
  • Increased muscle tension / inflammation (?) - which has been blissfully minimal the past few months
  • More irritable, talkative - a.k.a. "excitotoxicity"
  • Insomnia
Friday night I had all-over muscle tension that made me wanna take a muscle relaxant for the first time in ages.

Saturday afternoon I did a few hours of house cleaning and yard work. At 6 pm, I was supposed to go to my mom's birthday dinner. But I felt achy all over. Normally this means my muscles / mitos have run low on ATP and a little d-ribose can quickly get me on track. So I took an additional 2.5 grams of ribose beyond my regular 5g/2x daily dose. It affected me much stronger than it usually would. At 11pm I was crawling the walls with energy, wide eyed and wide awake in my bed. I tossed and turned all night and didn't get more than 2 hours sleep.

My body seems to "love" mB12 sublingual with few issues, but combining it with the methylfolate in the multivitamin makes me feel edgy.

Dr. Lynch suggests that some people may only need 300mcg methylfolate and it can be useful to space out the doses to minimize side effects.

Therefore... today I cut back to just 2 Doctor's Best Multiple tablets (264mcg methylfolate, 666mcg mB12) - one tablet at breakfast and one at lunch. No sublinguals.

Do my side effects suggest a biological need for methylfolate? Does this sound like healing startups... or is it my body saying "no thanks!" to these nutrients?

23andme informed me my saliva sample had errors and it will be a few more weeks before I get my genetic data.
 
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ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Sherpa, excitotoxicity and insomnia could be the increased methylfolate. this might be temporary. When I got this sort of thing when increasing Mfolate dosage, I Immediately took 1 mg ET B12 in my gum, and the symptoms were relieved. the ribose might have increased the reaction. Muscle tension/inflammation could be start-up, ie. nerves waking up???

ETA: Others combat the excitotoxicty or histamine responses to increased Mfolate by taking niacin to dampen the response, per Ben Lynch advice. It's not the way I've gone.
 
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Victronix

Senior Member
Messages
418
Location
California
Yeah, I space my B-12 out through out the day. Its not always easy to find an amount that can work for you at the start, and then stopping and starting causes more symptoms, but its worth it to do the slow and low thing and build up. I had no choice since my body went nuts both with b-12 and mfolate.

The hoarse voice was surprisingly consistent with the mfolate. It would be interesting to know what causes that. The one condition I know of is vagal nerve stimulation. But also a drop in estrogen, I've discovered, will apparently also cause that, but not as powerfully.
 

Lisons

[banned as spam]
Messages
3
Yeah, I space my B-12 out through out the day. Its not always easy to find an amount that can work for you at the start, and then stopping and starting causes more symptoms, but its worth it to do the slow and low thing and build up. I had no choice since my body went nuts both with b-12 and mfolate.

The hoarse voice was surprisingly consistent with the mfolate. It would be interesting to know what causes that. The one condition I know of is vagal nerve stimulation. But also a drop in estrogen, I've discovered, will apparently also cause that, but not as powerfully.
Ill have to space it out better thanks for the advice.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
I get a hoarse voice from dietary histamine. I never knew there were so many causes of hoarseness.

For muscle tension, I use GABA, 500 mg, and I open the capsule and dump it under my tongue to take it sublingually. Not suggestion that you add one more thing, but it's something to consider.