B-12 - The Hidden Story

[jeffrez]

Hi, I hope that Fred might be able to weigh in as it seems you're already doing a lot of things that should be helping.

Tell me about it! Wondering when/if any of this is going to kick in and actually do something.

I don't know much about hashimoto's but Dr L Wilson feels that kelp is benficial because it contains iodine along with other trace minerals which are very important. I'm currently waiting for thyroid tests to come back for my mum and if it seems she's even slightly hypo I'm going to get her on Nature's Way kelp. I have found these links informative:-

http://www.drlwilson.com/ARTICLES/HASHIMOTO.htm
http://www.drlwilson.com/articles/KELP.HTM
http://www.drlwilson.com/articles/thyroid.htm

Re: fish oils. Do you eat any fish? Dr Wilson feels that the best fish to eat are sardines as they are low in mercury yet very high in important nutrients.

Re: magnesium. Have you tried different forms? According to George Eby, magnesium glutamate and magnesium aspartate are bad for depression.

thnx, have oxide now, citrate was hard on the stomach, will try glycinate again.

No fish, as n3 causes me to have increase in liver enzymes. Started taking lecithin, so add that to the list. Was afraid of kelp b/c of hashimoto's, but with increasing the selenium maybe I can tolerate some. Had some around & took a small amount today, but haven't noticed anything from it.

thx for links, informative.

 

[goldiland]

Rich and the Group

I just wanted to let you know that N. Klimas is looking at your protocol and told me that she reads a lot of what you send her. She thinks there is definitely some relevance to the theory although she also mentioned to me that methylation occurs in all of our cells and she thinks the yasko version is a very simplistic intervention. She is doing a lot of genetic tracking in one of her grants and is looking at what genes get turned on after exercise that shouldn't be turned on. Her belief at this point is that the oxidative stress (virus, infection) over time creates a pro-inflammatory cascade of cytokines and genetic changes and we need to figure out how to turn this stuff off. She also did say that she would only recommend taking methyl B-12.

I also wanted to ask you about just indicriminatly taking potassium supplements.... I will say that I have crashed twice on protocol... fatigue, nausea, headaches, shakiness, feeling faint. I don't typicallly have a lot of those symptoms usually and wonder if the deplin plus B-12 might have unearthed potassium or other co-factor problem. Klimas did mention that B-1 can become easily depleted on this type of protocol but never mentioned potassium. Thoughts or experiences from anyone?

 

[aprilk1869]

Tell me about it! Wondering when/if any of this is going to kick in and actually do something.




thnx, have oxide now, citrate was hard on the stomach, will try glycinate again.

No fish, as n3 causes me to have increase in liver enzymes. Started taking lecithin, so add that to the list. Was afraid of kelp b/c of hashimoto's, but with increasing the selenium maybe I can tolerate some. Had some around & took a small amount today, but haven't noticed anything from it.

thx for links, informative.

Was wondering if you might need more potassium as it seems a lot of people around here are needing to take more and more of it. I've read that licorice can deplete potassium.

 

[therron]

Hi goldiland,
I think that I am an outlier when it comes to potassium. I tried taking it to address symptoms similar to yours (fatigue, headaches, shakiness, edema, muscle weakness and pain) and it just made things worse. Then I tried sodium since it is recommended for weak adrenals. This worked much better for me. I am now trying to figure out how to balance sodium, potassium, calcium, magnesium, and zinc.

 

[richvank]

Rich and the Group

I just wanted to let you know that N. Klimas is looking at your protocol and told me that she reads a lot of what you send her. She thinks there is definitely some relevance to the theory although she also mentioned to me that methylation occurs in all of our cells and she thinks the yasko version is a very simplistic intervention. She is doing a lot of genetic tracking in one of her grants and is looking at what genes get turned on after exercise that shouldn't be turned on. Her belief at this point is that the oxidative stress (virus, infection) over time creates a pro-inflammatory cascade of cytokines and genetic changes and we need to figure out how to turn this stuff off. She also did say that she would only recommend taking methyl B-12.

I also wanted to ask you about just indicriminatly taking potassium supplements.... I will say that I have crashed twice on protocol... fatigue, nausea, headaches, shakiness, feeling faint. I don't typicallly have a lot of those symptoms usually and wonder if the deplin plus B-12 might have unearthed potassium or other co-factor problem. Klimas did mention that B-1 can become easily depleted on this type of protocol but never mentioned potassium. Thoughts or experiences from anyone?

Hi, goldiland.

Thanks for the input from Dr. Klimas. I'm glad to hear that she is developing some interest in methylation, at least at the level of its control of gene expression.

I hope that some day soon she will try a combination of B12 and folate together on her patients, as in the methylation treatments. If she would do that, I think she would find that it would help the function of the immune system a great deal. I have communicated this to her many times over the past few years.

I can't recall what version of methylation treatment you were trying. You mentioned Deplin. That has a pretty high dosage of 5L-methyl tetrahydrofolate. You also mentioned methyl B12. If you have been taking a combination of high dosages of both, I think it is possible that you might have developed a potassium deficiency. Potassium is included in the standard complete metabolic panel that physicians order routinely, and I favor measuring to see what the potassium level in the blood is, if in doubt about this. Low potassium is hazardous because of the importance of potassium in controlling heartbeat. However, high potassium can also cause problems, so measuring it and keeping it in the normal range is important.

As you may know, I favor a more "gentle" approach to lifting the partial methylation cycle block, which allows the cells to stay in control, rather than overriding cellular control by giving these two supplements in high dosages. This seems to work well for most people who have ME/CFS. I think that the likelihood of going low in potassium is mimimized if this is done. The latest revision of the protocol I have suggested is pasted below. I acknowledge that this protocol is not effective for everyone, particularly those who have inborn errors of metabolism involving the intracellular B12 processing enzymes. However, this does not appear to be an issue with most people who have ME/CFS.

Best regards,

Rich

March 30. 2011

SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROMEMarch 30, 2011 Revision
Rich Van Konynenburg. Ph.D.
(Based on the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. General Vitamin Neurological Health Formula [2]: Start with tablet and increase dosage as tolerated to 2 tablets daily
2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
3. MethylMate B [4]: 3 drops under the tongue daily
4. Folinic acid [5]: capsule daily
5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

All these supplements can be obtained from http://www.holisticheal.com.
The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
For those allergic to soy, lecithin from other sources is available.
GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

[1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
[2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
[4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
[5] Folinic acid is 5-formyltetrahydrofolate. capsule is a dosage of 200 mcg.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
[7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.

 

[Freddd]

Rich and the Group

I just wanted to let you know that N. Klimas is looking at your protocol and told me that she reads a lot of what you send her. She thinks there is definitely some relevance to the theory although she also mentioned to me that methylation occurs in all of our cells and she thinks the yasko version is a very simplistic intervention. She is doing a lot of genetic tracking in one of her grants and is looking at what genes get turned on after exercise that shouldn't be turned on. Her belief at this point is that the oxidative stress (virus, infection) over time creates a pro-inflammatory cascade of cytokines and genetic changes and we need to figure out how to turn this stuff off. She also did say that she would only recommend taking methyl B-12.

I also wanted to ask you about just indicriminatly taking potassium supplements.... I will say that I have crashed twice on protocol... fatigue, nausea, headaches, shakiness, feeling faint. I don't typicallly have a lot of those symptoms usually and wonder if the deplin plus B-12 might have unearthed potassium or other co-factor problem. Klimas did mention that B-1 can become easily depleted on this type of protocol but never mentioned potassium. Thoughts or experiences from anyone?

Hi Goldiland,

I also wanted to ask you about just indicriminatly taking potassium supplements....

I wouldn't call taking potassium when starting mb12/Metafolin indiscriminate. There is an approximately 100% probability that when methylation starts up, usually within hours unless there is something else blocking it, that potassium is going to drop. It is a signal flag that NORMAL cell formation has started up again, with a backlog. Low potassium can rapidly cause heart irregularities and death if continued. It is the genuinely most dangerous most likely occurrence when starting up methylation and healing.

I will say that I have crashed twice on protocol... fatigue, nausea, headaches, shakiness, feeling faint. I don't typicallly have a lot of those symptoms usually

These are classic low potassium symptoms and can be relieved in 30 minutes by 500mg of potassium episodically. They are also a good signal that healing has started. It's a good time to increase your daily potassium input so you don't need an episodic dose more than once a week or so.

and wonder if the deplin plus B-12 might have unearthed potassium or other co-factor problem

"Unearthed" is NOT the situation here. Potassium depletion along with perhaps a dozen or more other cofactor deficiencies can be caused by the general healing started up. Almost any vitamin or mineral or other item that is sufficient as tissue is breaking down can go deficient when healing and cell formation start up and continue. The most frequent ones are potassium, methylfolate, various other b-complex components, magnesium, vit A, D, C, E, zinc, l-carnitine fumarate, SAM-e, TMG and others from time to time.

time creates a pro-inflammatory cascade of cytokines and genetic changes

Lack of mb12 and methylfolate causing tissue to not form properly creates inflammatory changes throughout the body in all kinds of tissues. It is suspected that lack of mb12/methylfolate cause any numbers of cancer through faulty DNA transcription. Cell changes in the PAP smear are one obvious effect of that.

 

[Freddd]

Hi goldiland,
I think that I am an outlier when it comes to potassium. I tried taking it to address symptoms similar to yours (fatigue, headaches, shakiness, edema, muscle weakness and pain) and it just made things worse. Then I tried sodium since it is recommended for weak adrenals. This worked much better for me. I am now trying to figure out how to balance sodium, potassium, calcium, magnesium, and zinc.

Hi Therron,

While potassium is very likely a limiting factor for most, just about anything else can become depleted and a problem as well. Most folks eat plenty of salt but not everybody. Attaining a good mineral balance can be dificult. Too much calcium can cause similar symptoms as too little potassium.

 

[Sallysblooms]

Don't you have to be careful with potassium? I am supposed to take it, K Dur prescription, to keep my kidney stones away. I talked to a pharmacist and too much is really bad and problems can be permanent. I am going to try to take part of the pills my Urologist wants me to take, but it is a bit scary. My potassium levels are normal and I wish that wasn't the best way to keep stone away. I do other things, but this is the most effective.

 

[Freddd]

Don't you have to be careful with potassium? I am supposed to take it, K Dur prescription, to keep my kidney stones away. I talked to a pharmacist and too much is really bad and problems can be permanent. I am going to try to take part of the pills my Urologist wants me to take, but it is a bit scary. My potassium levels are normal and I wish that wasn't the best way to keep stone away. I do other things, but this is the most effective.

Hi Sallyblooms,


too much is really bad

And too little can be fatal. That is really really bad. For people trying to start methylation and succeeding, their potassium will drop and become symptomatic. Titrating for effectiveness and watching for returning symptoms of deficiency for extra doses is required for safety and comfort and effectiveness.

"Normal" levels of potassium do not mean asymptomatic. Various labs call 4.0 down to 3.5 the low limit. I have middle of the night screaming spasms at 4.2 as do others. Too much needs to be watched out for. However, probability of LOW potassium with mb12/Metafolin is near 100%. The probability of actually dangerously high potassium is a minute fraction of that, perhaps 1:100,000 or less, while cell formation is going on without taking huge huge doses. I don't try to take enough to never have low potassium responses. I just try to keep the episodes down to once a week and adjust my dose to achieve that.

 

[tealady]

yep, I agree re the B1 and not taking potassium indiscriminately..at least for me and some others. I had to inject B1 after I started on B12 for a while. others have recovered from fatigue also this way..but it does seem far rarer than B12 deficiency, and it wasnt the full answer for me either. I think keeping a check on potassium levels is something that should be doen at elast every 3 mths , and I agree that levels under 3.9 or so are too low for me and Freddd and others, ie you will feel the effects from being too low. But I have also gone high too, ands low on sodium, so all the elctrolytes need to be checked at least every 3 mths when on a high B12 protocol IMHO. I haven't heard fom many who needed to take B1 though.
edited to add: sorry I didnt see freddd had already replied.

I have to add that too much potassium is also fatal, and with little warning(my understanding only as I dont know anyone who has got there!) , which is why the concern some docs have over too much. then again you usually have to take a lot to get there..but it isnt something I would feel safe over taking as much as I wanted without thinking about it.
The lethal injection they give to prisoners happens to be potassium I have heard(the fatal one). It also depends on what other meds/herbs you are taking as usually they seem to deplete potassium, but some are potassium sparing ..and that would cause a faster buildup..so you do need to be a bit careful,
which is why I try bananas(eat as many as your body wants you to-that way your body can sometimes guide you,at least for the fine tuning), and Moretons salt or Lite salt (the salt that is half potassium/half sodium)..coffee too..my body craves a good brewed coffee(lots of, when short on potassium., and oranges etc, and perhaps just a couple of tablets to help get there if you still are short(I have some potassium in a multi mineral I take on occasion)?

When I hear or read of people in the twenties dying of overdose of supplements(last month was a young man taking (I think? but not sure)magnesium and tulsi tea apparently for relaxation, I just tend to get a little concerned with potassium as it IS a possibility if you just take it and take it and take it..which is what this 23yr old must have done with magnesium and Tulsi tea I think it was?(sorry I have a poor memory, just the thought of indiscriminately taking something that in a typical dose would be harmless enough and not mixed with other things. Just giving your docs perspective as I'm sure she has probably heard similar stories at times too... I've actually been on a forum where someone has died, (not from potassium or Mg ), so I am a little over cautious maybe

 

[Sasha]

Since starting the ab12 and mb12 twelve days ago, I've had markedly more energy (sometimes immediately discernible on taking ab12) and some headache/faceache symptoms almost each time I take or increase the dose of mb12 (which I take to be start-up symptoms and a good sign).

For the last three days, though, I've felt very tired, and I don't know why that would be. I'm having to lie down more than usual. I don't have muscle weakness, soreness or cramping - just muscular & general fatigue.

Any ideas? Should I be increasing the dose of something?

I haven't taken any calcium since the Ca/Mg tablet gave me diarrhoea but I'm now taking Mg in spray form - could this be due to lack of calcium?

 

[Freddd]

Since starting the ab12 and mb12 twelve days ago, I've had markedly more energy (sometimes immediately discernible on taking ab12) and some headache/faceache symptoms almost each time I take or increase the dose of mb12 (which I take to be start-up symptoms and a good sign).

For the last three days, though, I've felt very tired, and I don't know why that would be. I'm having to lie down more than usual. I don't have muscle weakness, soreness or cramping - just muscular & general fatigue.

Any ideas? Should I be increasing the dose of something?

I haven't taken any calcium since the Ca/Mg tablet gave me diarrhoea but I'm now taking Mg in spray form - could this be due to lack of calcium?

Hi Sasha,

The number one candidate is potassium. A single 500mg dose (nowhere near any possibility of fatality) will tell you in 30 minutes. Number two probability is Metafolin deficiency, then b-complex, magnesium, zinc, SAM-e, TMG, L-carnitine fumarate etc.

A side note on B1, that is one of those b-vits I take additional of. It is vital. If a person is taking b-complex twice a day it reduces the probability that B1 is the limiting factor.

I also take Pantethine, p-5-p and Biotin. The Pantethine makes me feel sick but only when in folate deficiency. Combinations are critical.

 

[penny]

I've tried some of the methylation supplements three different times. Basically mb12, methylfolate and once adb12.

I've never lasted longer than three days because of immediate noticeable (and unpleasant) increase in muscle cramping/tightness/pain. I've also haven't had any improvement in energy (or anything else I noticed).

So this time, I haven't had any gluthathione precursors in about a week (then only glycine) and no folic acid supplements for months. Today I tried again: 500mcg of mb13 (jarrow), 800mcg of metafolin, 50mg b-6 and 99mg of potassium. These is all in addition to my normal supps (including serine, c, lysine and magnesium, salt tabs) and meds (LDN, ambien, aleve).

What I'm wondering is if anyone else gets the muscle cramping/tightness/pain when trying this protocol, and if you have any ideas about what the cause of this is?

I realize there's no one size fits all plan and that there are other supplements that I can try, but I'm hoping the experience of the community can help get me closer. Between all the different supplements, dosages, rations, timings, it feels a bit like I'm shooting in the dark.

 

[maddietod]

Penny, I see in the post above yours that Freddd is recommending 500mg of potassium to alleviate symptoms. I don't know anything about dosing on Freddd's protocol and so can make no recommendation.........but that's a lot more than you're taking.

Madie

 

[Freddd]

I've tried some of the methylation supplements three different times. Basically mb12, methylfolate and once adb12.

I've never lasted longer than three days because of immediate noticeable (and unpleasant) increase in muscle cramping/tightness/pain. I've also haven't had any improvement in energy (or anything else I noticed).

So this time, I haven't had any gluthathione precursors in about a week (then only glycine) and no folic acid supplements for months. Today I tried again: 500mcg of mb13 (jarrow), 800mcg of metafolin, 50mg b-6 and 99mg of potassium. These is all in addition to my normal supps (including serine, c, lysine and magnesium, salt tabs) and meds (LDN, ambien, aleve).

What I'm wondering is if anyone else gets the muscle cramping/tightness/pain when trying this protocol, and if you have any ideas about what the cause of this is?

I realize there's no one size fits all plan and that there are other supplements that I can try, but I'm hoping the experience of the community can help get me closer. Between all the different supplements, dosages, rations, timings, it feels a bit like I'm shooting in the dark.

Hi Penny,

I've never lasted longer than three days because of immediate noticeable (and unpleasant) increase in muscle cramping/tightness/pain... What I'm wondering is if anyone else gets the muscle cramping/tightness/pain when trying this protocol, and if you have any ideas about what the cause of this is?

I get muscle cramping/tightness/pain 3 days after starting mb12, adb12, Metafolin and a few other things. It is relieved in 30 minutes with 500mg of potassium and can be generally prevented by some amount of daily potassium which for me is about 1200mg a day plus occasional additional doses. 99mg isn't likely to stop it.

I've also haven't had any improvement in energy (or anything else I noticed).

The healing is just starting in 3 days and you stop. Of course you don't notice any improvement. You don't continue long enough and you don't have a chance to add the other things that might help bring that about.

These are all the things that have given me a pronounced improvement in energy; mb12, adb12, Metafolin, l-carnitine fumarate, zinc, TMG, SAM-e. As each one was added my energy improved. I also have some minor improvement with D-Ribose. Without mb12/adb12 nothing at all ever helped. The COMBINATION is everything. Also, without enough potassium fatigue can be major.

 

[penny]

My impression from reading parts of this thread is that muscle fatigue and weakness are more symptomatic of low potassium than muscle cramping and tension. But I certainly could be wrong about that...it's a LONG thread and I have my share of brain fog!

 

[penny]

Oops! I was just replying to madietodd and missed your response fredd.

Ok, so that's good to know I'm wrong about the symptoms of low potassium, and that it can cause cramping. I'll give a larger dose a try!

And I know three days isn't long enough, it just seems like most folks mention some kind of noticeable reaction immediately. I quit my earlier trials b/c of muscle pain, not b/c of lack of improvement. Maybe as they say, third times the charm.

Thanks guys

 

[Freddd]

My impression from reading parts of this thread is that muscle fatigue and weakness are more symptomatic of low potassium than muscle cramping and tension. But I certainly could be wrong about that...it's a LONG thread and I have my share of brain fog!

Hi Penny,

There are about 30 symptoms that might pop up but some are more common than others or take longer. The one that is my first indicator is incredibly screaming intense cramps in my legs (thighs and calves and front of lower leg) and feet when I am relaxed, in bed or sitting in a chair. Too much potassium typically causes cramps when contracting muscles and then not being able to stop. Low potassium can also cause inability to contract muscle resulting in a paralysis.

However, this is part of a pattern. For me 3 days after starting up methylation the cramps start, or the first 2-3 days coming out of folate deficiency as I start dumping a lot of water. These are two different patterns. Also, when I started muscle formation with adb12 and increased it with l-carnitine fumarate I got the same spasms. So, a person starts certain supplements and then about day 3 the spasms start. That's a pattern that says "low potassium".

Incidentally I also had very painful spasms in the muscles over my ribs from turning or twisting for decades. As I have come out of folate deficiency and increased my potassium these have faded a lot but not yet disappeared.

 

[penny]

Hi Penny,
a person starts certain supplements and then about day 3 the spasms start. That's a pattern that says "low potassium".

So is it possible my increased muscle tension can be caused by low potassium on day 1 (I've just started again, with muscle pain starting to increase about 4hr's after my first mb12 dose)? I wouldn't have even raised this except I had the same reaction the last two times as well.

I just took 400mg (well, 396mg) of potassium, so I guess I'll find out the practical answer to this pretty soon!

 

[Freddd]

So is it possible my increased muscle tension can be caused by low potassium on day 1 (I've just started again, with muscle pain starting to increase about 4hr's after my first mb12 dose)? I wouldn't have even raised this except I had the same reaction the last two times as well.

I just took 400mg (well, 396mg) of potassium, so I guess I'll find out the practical answer to this pretty soon!

Hi Penny,

With it happening in 4 hours I would be more inclined to say "neurological". That is hardly time for cells to do much of anything. Have you seen the post with the 10 or 11 types of muscle pains described?