• 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 (FM), 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.

Simplified Methylation Protocol Revised as of Today

Messages
471
Is the basic protocol listed by Rich on the first page of this thread still up-to-date? I thought I remembered Rich later agreeing with Fredd that folic acid and folinic acid should not be used? I'm sorry, I don't have the ability right now to read through all 32 pages of this tread to find the answer.

Here is a link to his most recent methylation protocol. Rich does still recommend folinic acid although I assume he acknowledges from Fredd's findings that some people cannot tolerate folinic acid.
http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/

I didn't find any arguments for taking the folinic together with the folate instead of taking just the 400 mcg of folate, are there (according to Rich's theory)?

I'm taking 200 mcg of both now and seem to tolerate the folinic but it would be a lot easier to take just one 400 mcg folate tablet (instead of splitting the 800 mcg of folinic in four and the 400 mcg of folate in two).

This would make this simplified protocol even more simplified.

I am taking hB12 now instead of mB12 and aB12, this feels better so far, I will try again later.
 
Last edited:
Messages
471
I didn't find any arguments for taking the folinic together with the folate instead of taking just the 400 mcg of folate, are there (according to Rich's theory)?

I'm taking 200 mcg of both now and seem to tolerate the folinic but it would be a lot easier to take just one 400 mcg folate tablet (instead of splitting the 800 mcg of folinic in four and the 400 mcg of folate in two).

This would make this simplified protocol even more simplified.

I am taking hB12 now instead of mB12 and aB12, this feels better so far, I will try again later.


To answer my own question, I found what Rich said about it:

Folinic acid: This is a buffer form of folate that most people can readily convert to other active forms of folate. Its role in the protocol is to supply these other forms while the methionine synthase reaction has still not come up to normal. This is particularly important for making new DNA and RNA for replacing cells. In the early versions of the protocol, Actifolate was used to supply folinic acid. However, it also contains some folic acid, which I would prefer to minimize. Folinic acid can be obtained either in tablet or capsule form.

So I will continue the folinic for the time being, I will just start taking them separately, morning and evening.
Will try folinic morning and folate evening and the other way around to see with which one I can sleep best.
 
Messages
471
After almost two months on the SMP I do have some benefits, brain fog lifted for the most part, less feeling of heaviness in the head and eyes.

The bad thing is that I seem much more vulnerable to "doing things" either social or physical, after this I can not sleep well (other nights sleep can be fine). In this case my body and brain feel like trembling at a very high frequency (like putting your fingers in a socket outlet but without the pain ;) ) I stay awake for hours or sleep short periods and very lightly.
After sleeping bad I feel worse and also pick up flues more easily.

1. is the trembling experience I describe above the same as people on this forum describe as feeling wired? If not do others also experience this?

2. does anybody have any suggestions of what to take additionally that would help me for this?

3. can this be the result of doing a methylation protocol?
 

xrunner

Senior Member
Messages
843
Location
Surrey
After almost two months on the SMP I do have some benefits, brain fog lifted for the most part, less feeling of heaviness in the head and eyes.

1. is the trembling experience I describe above the same as people on this forum describe as feeling wired? If not do others also experience this?

2. does anybody have any suggestions of what to take additionally that would help me for this?

3. can this be the result of doing a methylation protocol?
I'm glad you seem to have found some benefits from the smp. My own views
1. No. You seem to describe neurological symptoms more than feeling wired as a state of mind similar to an anxiety state or feeling full of adrenaline. But shaking and feeling wired could be related.
2. I wouldn't take anything else, instead I'd try reducing dosages of supplements e.g. half dose and see if those symptoms and sleep got better. If you slept better, you'd be able to make much more progress. For sure I would take supplements only in the morning, sleep may improve as a result (it did in my case).
3. you could find out by taking a holiday, eg. a week without any supplements.
Best wishes.
 
Messages
471
@xrunner thanks for your ideas

Good I asked than since English is not my first language, I see many posts here about anxiety and I got a totally different idea about it's meaning.

I'm not sure about reducing since I'm already at low dosages like Rich suggested and the "anxiety" is also not completely new, I just think it got a bit worse.

Reading a bit further I bumped in things like Gaba, Lithium Orotate and Magnesium that seem to help with this kind of symptoms, what do you think?
 

xrunner

Senior Member
Messages
843
Location
Surrey
@xrunner
Reading a bit further I bumped in things like Gaba, Lithium Orotate and Magnesium that seem to help with this kind of symptoms, what do you think?
You're welcome.
They're just band-aids. I'd try and rule out first if the underlying symptoms may be due to over dosing or sensitivity to some supplements you're taking...
 
Messages
471
Thanks, I will stay with Rich's advise for a while and "hang in" since before these two months on the SMP I already had a few months of experimenting with dosages and different supplements (I no longer take the methylB12 now).
This seems the best balance with the supplements I am taking now.

At the moment it is:

Morning:
0,8g NT Factor
2x All in One Multi
200 mcg Solgar Metafolin
2 mg hB12
2x Omega 3 Fish Oil

Afternoon
2x All in One Multi
200 mcg Megafolinic
1 mg hB12
2x Omega 3 Fish Oil

Now looking for two adjustments
1. something to add to become less "jittery"
2. does anybody know a good replacement for Yasko's All In One which is less expensive?

Any tips are appreciated.
 
Messages
471
Does anybody have any suggestions about my above two questions?

I would like to order some "Multi" that goes well with Rich's protocol, or maybe somebody can point me to an other thread where this has been discussed, I couldn't find it.

Are people even still following this SMP?
 
Messages
8
I, too, would like to know if people are following this protocol. I haven't read the entire thread yet, but do most people find relief from brain fog using this protocol? Thanks!
 
Messages
75
Location
London
Hi,

Yeah, I find some relief from this protocol. I use to get headaches 24/7 but, after doing the protocol for about 6 weeks, I then noticed that the constant headaches stopped being constant. I still have brain fog but, I guess it improved it a bit. An important note though, I only used methylcobalamin, folate, and lecithin. I did not use the other supplements, such as the All-in-one, etc.
 
Messages
11
I think you may be barking up the wrong tree. After 4 weeks, surely there is nothing left of the FolaPro in your system. It usually takes me 3-4 days to calm down if I overdo methylation. If you still after all this time have problems, I do not believe you having taken FolaPro has anything to do with it. In short, I would look for another cause of your problems. Something else in going on.

Theanine has a nasty rebound effect for me (it inhibits COMT) and actually make my anxiety worse after a while. I do not tolerate high doses of taurine also.

Hi may I ask what happens when you take taurine?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I see the problems a lot of you are having. As what we all pretty much have is non healing of carious things, and that is caused by deficiencies induced by attempting to heal, here is a list of symptoms. I have included copper and boron to some extent here. The things that change in the first 1-48 hours is the effect on the deficiency symptoms. By day three or 4 if healing is going along then a new set of recurring or fresh symptoms will come up to notice. Those are the refeeding syndrome deficiencies, from 3rd day and onwards. So if folic acid or folinic acid give the deficiency symptoms for you as for me, they isolated folate deficiency symptoms are listed. With methylfolate generally some compartments will improve and some will cause deficiency symptoms in some compartments, looking very paradoxical.

Figuring these things out for how your symptoms match up is a game of skill. Good luck.

Version 2.21 12/06/2016 A work in process, incomplete, limited testing, people come in many variations, use at your own risk.
INDUCED DEFICIENCY SYMPTOMS FROM REFEEDING SYNDROME. This can follow 5 days of food deprivation, anorexia, or sort of a pinpoint starvation via vitamin or mineral or amino acid deficiencies. Whatever the “most needed” item is will often cause a strong response. The first usual notable symptoms occur on typically the third day of starting a previously insufficient nutrient. For instance it was noted in the 50s with injections of B12 with potassium deficiency (hypokalemia) as a side effect. It is dangerous and can be unpredictably fatal if not corrected and the cause is continued. When they say people are dying in Syria after they have been starved and given food, they are often sufferring REFEEDING SYNDROME. When previous symptoms return

Group 1 – Hypokalemia onset. Often called “detox”. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both hypokalemia and l-methylfolate deficiency
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation

Group 2b – Either or both hypokalemia and l-methylfolate deficiency
Headache, Increased malaise, Fatigue

Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels. Frequently called “NAC DETOX” or “GLUTATHIONE DETOX”. Can be caused by folic acid, folinic acid and for some people, like me and quite a few others, excess vegetable folates. Further excess B1, B2, B3 and/or inositol can increase methylfolate deficiency symptoms.

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.
Old symptoms returning in a general sense, a person may have had onset of these hundreds of time if they are on the borderline
Edema
Angular Cheilitis, Canker sores,
Skin rashes, increased acne, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips, painful cracks in the skin at the corner of fingernails at approximate right angles to nails, can take months to occur and it may be only non mood or neurological symptoms.
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue
Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,
Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,
Longer term, very serious:
Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily.

Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.
Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.

Group 5 – Copper deficiency after methylation startup has been achieved which often starts refeeding syndrome. 50mg or more of zinc has been indicated as a possible cause. 200-400 mg of zinc has been linked to copper deficiency. Excess supplemental or environmental manganese is linked to copper deficiency. Any or all symptoms can occur at “low normal range” copper tests.

Demyelination of nerves similar to Sub Acute Combined Degeneration except that methylation and ATP startup has occurred, and copper deficiency favors damage to the upper motor neurons with perceived muscle weakness. Brittle nails. Sleep disorders. Mood (especially depression perhaps) and personality changes. Connective tissue breakdown. Spider veins. Varicose veins. Shrinking gums. Gum disease not responsive to usual measures. Unstoppable tooth decay on exposed areas without enamel. Low testosterone

Group 6 – Excess P-5-P, an active form of B6 that appears to drive hematocrit.
High hematocrit. The blood thickens and doesn’t pump as easily. Deep vein thrombosis can result. Other suspected circulatory hazards. Sometimes linked to high testosterone when lowering P-5-P might reduce it.

Group 7 – Excess B-vitamins affecting methylation
When taking the active B12/folate deadlock quartet (AdoCbl, MeCbl, Metafolin, L-methylfolate) Excess B1 - Thiamin, Excess B2 – Riboflavin, Excess B3 – Niacin and/or Excess Inositol can all produce an excess need for potassium to deal with Groups 1, 2a and 2b symptoms and/or produce an excess need for l-methylfolate to reduce groups 2a, 2b and 3 symptoms. A person might not be able to correct by taking potassium or folate and may need to reduce B1 <= 15mg/day, B2<= 10.2mg/day, B3 <=50mg, and inositol below an unknown quantity.

Group 8 – Boron insufficiency.
Arthritis swelling and pain, can be reduced by Boron
Contribution to fatigue, neurological effects.
Runaway tooth decay
Loss of calcium in bones and teeth

https://www.organicfacts.net/health-benefits/minerals/boron.html

Although all of the deficiency symptoms of boron are not fully understood, it is known that boron deficiency might result in the abnormal metabolism of calcium and magnesium. Some of the other symptoms include hyperthyroidism, sex hormone imbalance, osteoporosis, arthritis and neural malfunction.
 
Messages
22
Location
UK
@Freddd

Thanks for the simplified update!
My main symptoms from protocol startup so far are Headache, diarrhea, and occasional nausea and stomach ache. These fall in the group 3 category so I'd presume folate deficiency. However from what I've read they would also be the same as from taking too much potassium (when body not used to it)? Trying to decide wether to keep upping the folate (currently on 1500 spaced over 5 point in the day) or reducing the potassium (currently taking 1800 powder in 300mcg doses throughout the day). Any thoughts? Im 5 days in and taking 1000 methyl B12 and took my first crumb (approx 300mcg) of adeno today.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have, problems with the potassium and other minerals. Part of it is that "unstable electrolytes" is part of my genetics it appears. On 1500mg of potassium one is not going to be taking too much except in terms of irritating the stomach. I find it easiest to drink potassium gluconate powder in water. When I corrected my copper deficiency for example my potassium need went up 600mg daily. If I miss to much during the day, the next day I have spasms, painful spasms. I drink the K-water and in 15 minutes they loosen up. For me and a lot of people, there is often a lot of back and forth on the potassium and methylfolate. I had a series of symptoms that were very clearly folate like the angular cheilitis. Then there is the cracks on my fingers at the nail corners. That happened for folate, and copper, and one of the other micro nutrients. With folate there were until near the end, more symptoms from the folate shortage where as the ones from copper were nasty but fewer and after it can't be folate because the folate is taken care of, Many of us have polymorphisms that affect the folates and how our bodies can use them. The 400 mcg was to keep people out of trouble of taking it without B12 and causing nerve damage by induced b12 deficiency. Sound familiar type of problem?

Watch out for the potassium deficiency. That is REAL trouble. The folate deficiency isn't short term dangerous, so always balance out the potassium and then increase the folate which will then require more potassium. When that stay stable. AdoCbl can be felt a couple of times and then it reaches equilibrium. I find that one dose of 10mg a week works great, and once a month a 50mg dose for the brain and cord penetration.I felt the 50mg once and the 3mg once. The real kicker is usually the carnitine. Most of us appear to do best with L-carnitine fumarate (90%) but about 10% need ALCAR. A mix doesn't work for either kind. The liquid capsule freebase or the flavored Jarrow liquid freebase carnitine seems to work for most people but needs 2 doses a day. Also if you have unusual anxiety - caution, a microtitration starting at a 100 mcg of the liquid which is 1/33 of 1 stock drop. I found that 500 mg kicked be through the ceiling. 64 mg was a good dose for starting for me. And in 6 months I was up to 500mg and more made no difference. Good luck.
 
Messages
22
Location
UK
@Freddd
Thanks for the reply - that all makes sense and I'm definitely being cautious in watching for the potassium deficiency. Been reading my way through all your advice over the years on here (the 44 page "a guide to Freddd's protocol" with lots of your forum quotes, and the "How I was healed summary article" are particularly helpful). Feeling really excited about having more control over my own healing even if it will take a lot of trial and error along the way.

On the decision tree my symptoms are 2b/3 with intense headaches being the most noticeable. On that basis I am increasing folate each day (started at 400 and 6 days later I am now trying 2800mcg). One question I have, excuse me if this is a foolish one, is it possible to have induced deficiency symptoms without the healing/startup or does the one indicate the other must have begun? I haven't identified any of the "brightening" symptoms you or others describe. I do have a noticeable increase in noise sensitivity (more than usual!) and I wondered if that could possibly be a start up sign or if it was just a by product of the folate deficiency headaches? Also a minor thing - tingling inside cheeks and increased saliva at times - could that be a signifier?

The reason I ask is because I'm wondering if I haven't properly triggered start up, if I should add in L-Carnitine Fumarate now or if I should wait to do that (as I had intended) until subduing the folate def symptoms?

As well as 1000mcg Enzy B12, 700mcg adeno, 2800mcg folate, I am still taking TMG, SAMe, Lithium, slow release niacinamide, Co-Q10, probiotic, B-right, Vit C, liquorice root, ribose and MCT oil (from the protocol my nutritionist recommended). I removed his NAC and anything that had folic acid in based on what I read on here. Still slowly weening myself of the prozac the doctors prescibled for years too. Down to 20mg fluoreoxetine now :)

I am also homozygous for MTHFR A1298C, MTRR A66G and MAO-A r297R (and heterozygous for a bunch of others - MTHFR 03 P39P, COMPT V158M, COMPTH62H, COMP P199P, VDR Bsm, VDR Taq, BHMT-02, BHMT-08, CBS A36OA).
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
Thanks for the reply - that all makes sense and I'm definitely being cautious in watching for the potassium deficiency. Been reading my way through all your advice over the years on here (the 44 page "a guide to Freddd's protocol" with lots of your forum quotes, and the "How I was healed summary article" are particularly helpful). Feeling really excited about having more control over my own healing even if it will take a lot of trial and error along the way.

On the decision tree my symptoms are 2b/3 with intense headaches being the most noticeable. On that basis I am increasing folate each day (started at 400 and 6 days later I am now trying 2800mcg). One question I have, excuse me if this is a foolish one, is it possible to have induced deficiency symptoms without the healing/startup or does the one indicate the other must have begun? I haven't identified any of the "brightening" symptoms you or others describe. I do have a noticeable increase in noise sensitivity (more than usual!) and I wondered if that could possibly be a start up sign or if it was just a by product of the folate deficiency headaches? Also a minor thing - tingling inside cheeks and increased saliva at times - could that be a signifier?

The reason I ask is because I'm wondering if I haven't properly triggered start up, if I should add in L-Carnitine Fumarate now or if I should wait to do that (as I had intended) until subduing the folate def symptoms?

As well as 1000mcg Enzy B12, 700mcg adeno, 2800mcg folate, I am still taking TMG, SAMe, Lithium, slow release niacinamide, Co-Q10, probiotic, B-right, Vit C, liquorice root, ribose and MCT oil (from the protocol my nutritionist recommended). I removed his NAC and anything that had folic acid in based on what I read on here. Still slowly weening myself of the prozac the doctors prescibled for years too. Down to 20mg fluoreoxetine now :)

I am also homozygous for MTHFR A1298C, MTRR A66G and MAO-A r297R (and heterozygous for a bunch of others - MTHFR 03 P39P, COMPT V158M, COMPTH62H, COMP P199P, VDR Bsm, VDR Taq, BHMT-02, BHMT-08, CBS A36OA).

On the potassium balanced before adding LCF question sounds like a good idea to me. Adding LCF will start more healing and another round of potassium and first a reduction and then an increase in folate deficiency symptoms.. THis can happen with each thing added that was holding up healing.

hyper sound sensitivity is usually a methylfolate deficiency along with all sorts of hyper reactions. However, a "dimming" of senses, hearing and seeing is a longer term deficiency, so a literal visual brightening or hearing "brightening" and "mood brightening" and "pain brightening" and so on. However, you can only sense what was first reduced slowly to come back quickly, often in steps. And not all people have the same quick acting symptoms. However, the potassium decrease are the flag that cells are being made at an increased rate as various different tissues start healing. The increased deficiency symptoms for ANY items, and usually a person will have a lot of different sets along the way. FOPr me as the folate deficiency symptoms faded one a t a time would go away and not come back or not until the next shortage.
 
Messages
22
Location
UK
On the potassium balanced before adding LCF question sounds like a good idea to me. Adding LCF will start more healing and another round of potassium and first a reduction and then an increase in folate deficiency symptoms.. THis can happen with each thing added that was holding up healing.

hyper sound sensitivity is usually a methylfolate deficiency along with all sorts of hyper reactions. However, a "dimming" of senses, hearing and seeing is a longer term deficiency, so a literal visual brightening or hearing "brightening" and "mood brightening" and "pain brightening" and so on. However, you can only sense what was first reduced slowly to come back quickly, often in steps. And not all people have the same quick acting symptoms. However, the potassium decrease are the flag that cells are being made at an increased rate as various different tissues start healing. The increased deficiency symptoms for ANY items, and usually a person will have a lot of different sets along the way. FOPr me as the folate deficiency symptoms faded one a t a time would go away and not come back or not until the next shortage.


Thanks Freddd! I shall keep ramping up the folate!
 

grapes

Senior Member
Messages
362
Freddd, is it possible that moving up to 3200 mg folate is the reason my blood pressure (especially the diastolic) and heartrate have gone up?? I went up because a headache would reveal that I needed more each time. 3200 mg is where I got no more headaches.

I also experimented with being off methyl B12 entirely since my serum B12 was so high...thinking the higher folate would help break down that high serum for use...

And yes, I do take CoQ10--I remember you stating that it caused your BP to go way up. But the thing is---I can't go without high dose CoQ10. My body has apparently stopped making or breaking down CoQ10 and I have to have it.
 

grapes

Senior Member
Messages
362
I have been having a pounding and fast heartrate in the upper 90's for over three weeks now. I assumed it was due to a bad reaction to an antibiotic I had to take just under a month ago....but I now wonder if it has to do with the rising doses of folate. Anybody have an idea?