Voracious need for B12

[pogoman]

I took lithium orotate for a while last year and didn't notice any effect, but I plan to start it up again soon.

I take plenty of riboflavin but none of the others you mentioned.


I take 500mg/day of magnesium oxide, citrate, aspartate, taurinate, alpha-ketoglutarate (in Country Life Cal/Mag).

I just sent in a hair metals test so I should have a better idea of my lithium and magnesium levels soon.

if you decide to try them, coq10 works with riboflavin
choline and L-carnitine worik together also.

with that many mthfr mutations, have you had your homocysteine level tested?
and are you under a doctor's care?
its possible your mineral/electrolytes/vitamins levels are unbalanced and contributing to your what sounds like to me are neuro issues or another underlying medical condition.

 

[Sherpa]

@garyfritz

From what I understand oral magnesium isn't nearly enough for some of us CFS/SEID folk. Dr. Myhill says B12 and magnesium injections are so helpful it's pointless trying other things before that. She also says that magnesium enemas and a neublizer can work as well as injections for many but not all.

I have been trying Epsom salt in enema the past couple days and it's amazing, kind of like trying B12 oil vs a low quality sublingual brand. Much, Much more effective. Gives relief of symptoms and near instant effects - serotonin rush, ATP startup. It must be weighed and dosed carefully as too much can cause imbalance.

 

[garyfritz]

with that many mthfr mutations, have you had your homocysteine level tested?
and are you under a doctor's care?

I had my homocysteine tested 2 years ago (just before starting B12) and it was 11.0. That's considered mid-high normal, but values under 7.0 are preferable according to LEF and others. I just had a blood draw a few days ago so I'll get an update on my homocysteine and other things. It would be nice if the B12 and 5-MTHF supplementation helps to lower it. My last cholesterol test was a year ago and it was 20% higher than I've ever had before, so I'm hoping the things I'm doing now help that too.

I'm not seeing an MD at the moment but I have a health professional directing this testing and my supplementation.

From what I understand oral magnesium isn't nearly enough for some of us CFS/SEID folk. Dr. Myhill says B12 and magnesium injections are so helpful it's pointless trying other things before that. She also says that magnesium enemas and a neublizer can work as well as injections for many but not all.

Magnesium is like B12, it's very hard to get large amounts into your body. Significant oral dosages tend to cause diarrhea (think Milk of Magnesia) so it's hard to hang onto it. Transdermal pathways of various types (gels, Epsom salt baths, etc) work better for large infusions. I'm not eager to try Epsom enemas but I suppose I could give it a go if the gels/baths don't do anything for me... How long do the benefits last? How often do you have to do it? I apply B12 oil 2-3 times a day, and I wouldn't want to do enemas that often!!

 

[Sherpa]

@garyfritz The recommended treatment is daily Mg injections for at least 8 weeks which are reported to be particularly burning and painful. That is clinically guaranteed to get Intracellular levels up, unlike tablets. The Enema is not painful or uncomfortable. Works as well as injections for 6 out of 10 patients. Full dose is 5g of Epsom salts (500 - 600mg elemental Mg ) dissolved in 20ml of clean, warm water. I have only done it for 2 days now - and I'm only up to 2g - but I can tell it actually getting magnesium into me.

I am not recommending anyone try this, disclaimer I'm not a doctor, but I believe that Mg deficiency is a bigger deal for many CFS/SEID folksthan potassium deficiency.

 

[garyfritz]

BTW I tried an experiment this morning. I woke up with slight fasciculations (subcutaneous muscle twitch/tremor) in my calves. I took 200mg of Mg and didn't notice any change. After half an hour I tried 200mg of potassium and that seemed to help a bit.

Of course, 200mg of either may be too little to do any good.

I wonder how much of the 500-600mg Mg in the 5g enema is absorbed? Vs. how much of the 500mg of Mg in my Country Life tablets?

Were you taking oral Mg before (oh right, you were taking & liking the Jigsaw), and you feel a big difference with the enemas?

Do you expect to have to do this permanently, like I probably will with B12, or is this a temporary measure? (8 weeks?)

 

[Gondwanaland]

I had my homocysteine tested 2 years ago (just before starting B12) and it was 11.0. That's considered mid-high normal, but values under 7.0 are preferable according to LEF and others.

I read somewhere (sorry don't remember where) that the ideal Hcy level is 6.3 for any person.

I think P-5-P would help you to better metabolize the B12 and lower Hcy. There is a nice chart in my sig under "Uric acid" (and any methylation chart will show this relationship between B12, Hcy and B6). B6 also helps better metabolization of magnesium.

 

[ahmo]

"primary" sleep problems?

Hi Gary. I just meant that I understand you have very disturbing RLS, but was unclear whether you have trouble getting to sleep, staying asleep. But the answers you're getting here re mg, etc. seem to be addressing your symptoms. Here's some interesting re nebulizing magnesium, + other mg info listed in rt sidebar:

http://drsircus.com/medicine/magnesium/nebulizing-magnesium-and-other-medicinals

 

[garyfritz]

Actually the RLS is *usually* just a daytime problem. The extreme agitation and twitching/thrashing are nighttime symptoms. I generally have no trouble getting to sleep, but then at 2-3am I wake up with the heebie-jeebies.

@Gondwanaland, according to LEF, Hcy levels > 6.3 are associated with higher levels of atherosclerosis, heart attack, and stroke.

 

[Gondwanaland]

but then at 2-3am I wake up with the heebie-jeebies.

That is the MAO-A pattern out of control. I got it under control several times, but it always escapes again
Edit - my next strategy is a low tyramine diet

according to LEF, Hcy levels > 6.3 are associated with higher levels of atherosclerosis, heart attack, and stroke.

Thanks for refreshing my memory

 

[garyfritz]

That is the MAO-A pattern out of control. I got it under control several times, but it always escapes again

Oh? How did you tame it at least temporarily?

 

[Gondwanaland]

Oh? How did you tame it at least temporarily?

Got Mag?
Bicarb shower scrub
CaCO3+MgO tooth brushing

Alkalizing, I have pH strips to test the urine, when the pH is too low in the evening (< or = 5.5), I take a full bicarb bath.

Lately I have been realizing that my dinner plays a huge role in that

Taking T3 also helped immensely, also something that supports adrenals (I take the homeopathy for my patient profile which is wonderful)

A low dose multimineral helped for a long while

The problem with supplementation is the saturation point. I can't take magnesium anymore without disturbing calcium. I do not supplement with calcium. Also felt saturation from the other minerals (Zn, Cu, Mn, B, Si). But silicon helped a lot, since it is a synergist of sodium - adrenals loved it. I took ocean Si very low dose, compounded with potato starch to protect the gut mucosa, only 2x weekely, for about 6 months.

My adrenals hate potassium

 

[Sherpa]

BTW I tried an experiment this morning. I woke up with slight fasciculations (subcutaneous muscle twitch/tremor) in my calves. I took 200mg of Mg and didn't notice any change. After half an hour I tried 200mg of potassium and that seemed to help a bit.

Of course, 200mg of either may be too little to do any good.

Yes, I think especially with Magnesium... 200mg oral barely gets enough into the cells where it is needed. At least for me. 500mg is not enough. 1000mg is not enough, etc.

I wonder how much of the 500-600mg Mg in the 5g enema is absorbed? Vs. how much of the 500mg of Mg in my Country Life tablets?

It If I could do a completely unscientific wild guess... I would guestimate I absorb 10 - 15% through the mouth, and 80% through the bottom.

Were you taking oral Mg before (oh right, you were taking & liking the Jigsaw), and you feel a big difference with the enemas?

Yes, a big difference. An immediate effect that comes on within 30 seconds. And it seems better absorbed than the "Transdermal Magnesium Oil" I have tried, too.

Do you expect to have to do this permanently, like I probably will with B12, or is this a temporary measure? (8 weeks?)

I hope not. But supposedly either INJECTABLE or RECTAL or NEUBLIZER forms of Magnesium supplemetation are effective enough to restore levels after you do them for "long enough." Some people need weekly maintenance top ups. Some people only need it to break out of a crash. Oral supplementation is usually not enough to correct the depths of deficiency found in CFS/SEID. It's kind of like taking 500mg Cyanocobalmin in an multivitamin, good enough for Average Joe - but not nearly enough for guys like you and me with Trainwreck SNPs that have depleted our nutrient levels for decades.

But it's not a huge deal. The volume of liquid is very small (20ml) - it's not a terribly messy or complicated procedure. Takes just few seconds.

I would like to try the Mg injections - as those are clinically proven and 100% guaranteed to raise magnesium levels- but I don't have a SEID-literate doctor - so I am trying the enema procedure recommended by Dr. Myhill.

 

[Sherpa]

Oh? How did you tame it at least temporarily?

That is the MAO-A pattern out of control. I got it under control several times, but it always escapes again
Edit - my next strategy is a low tyramine diet

Yeah I have had the wake up in the middle of the night in panic before. I associate it with MAO-A. I tamed it, so far, by restoring my Riboflavin levels up from depletion with 3x daily, long term supplementation.

 

[Gondwanaland]

Yeah I have had the wake up in the middle of the night in panic before. I associate it with MAO-A. I tamed it, so far, by restoring my Riboflavin levels up from depletion with 3x daily, long term supplementation.

I recently tried giving B2 to my husband, but he got the same "6 PM Blues" (depression at sunset) I had when I tried it one year ago

 

[aturtles]

if you are also taking P5P be aware that large amounts can cause neurological issues.

I'd like to see some citations on this. I'm not saying you're wrong, but my research indicates that this is not the case, that most people running into problems with high dose P5P are really experiencing deficits in something else, most likely other methyl donors, like methylcobalamin AKA B12s. Could you post your sources?

My understanding is that P5P (AKA Pyridoxal-phosphate, PLP, pyridoxal-5'-phosphate, P5P, active or coenzyme form of vitamin B-6) is a water-soluble vitamin that the body has no trouble disposing of past the needed amount.

From http://www.netwellness.org/question.cfm/81287.htm:

"You are correct that vitamin B6 is a water-soluble vitamin and that its half-life is 15 to 20 days. You are also correct that excess water-soluble vitamins are quickly removed from the body by the kidneys. Vitamin B6, also known as pyridoxine, is metabolized in the liver after it is ingested to its active form called pyridoxal-5'-phosphate or P5P. P5P is highly bound to protein in the blood, and drug that is bound to protein cannot be excreted by the kidney. So when your body gets the dose that it needs, it converts almost all that dose to P5P which is then tightly held onto by protein resulting in a half life of 15 to 20 days. Eventually, P5P is again metabolized in the liver to 4-pyridoxic acid which is then eliminated by the kidneys. It is when you take pyridoxine in excess that it is quickly eliminated. If the liver receives more pyridoxine than it can handle, additional drug reaches the blood without being converted to P5P. Pyridoxine is not as highly bound to protein and can then be more easily eliminated by the kidneys. Also, if there is too much P5P in the blood, more P5P will be unbound and also able to be metabolized and then eliminated until your body again reaches equilibrium."
​

 

[pogoman]

I'd like to see some citations on this. I'm not saying you're wrong, but my research indicates that this is not the case, that most people running into problems with high dose P5P are really experiencing deficits in something else, most likely other methyl donors, like methylcobalamin AKA B12s. Could you post your sources?

​

http://emedicine.medscape.com/article/124947-overview

Background
Pyridoxine 5'-phosphate, vitamin B-6, is an essential cofactor in various transamination, decarboxylation, glycogen hydrolysis, and synthesis pathways involving carbohydrate, sphingolipid, amino acid, heme, and neurotransmitter metabolism. Pyridoxine deficiency causes blood, skin, and nerve changes. This vitamin is unique in that either deficiency or excess can cause peripheral neuropathy.[1, 2, 3, 4, 5]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798481/

Pyridoxine toxicity courtesy of your local health food store

C D Silva and D P D'Cruz

Author information ► Article notes ► Copyright and License information ►

This article has been cited by other articles in PMC.

Pyridoxine or vitamin B6 is a highly water‐soluble vitamin that plays an important part in the functioning of many enzymes, especially those involved in amino acid metabolism. A normal adult will require 1–2 mg of pyridoxine per day. This is adequately supplied by a normal diet. Requirements are increased in pregnancy, in malnourished patients and in patients who are taking drugs that cause a depletion of pyridoxine— for example, isoniazid, theophyllines and penicillamine.

Pyridoxine toxicity is a recognised cause of sensory neuropathy. Schaumburg et al described sensory neuropathy after pyridoxine misuse in 1983.1 It can occur with chronic use of pyridoxine supplementation over several years, and also with acute over‐dosage with parenteral pyridoxine.2 It is used to produce an animal model of sensory neuropathy, because unlike drugs such as cisplatin, which also cause sensory neuropathy, it does not cause systemic toxicity.....

 

[aturtles]

http://emedicine.medscape.com/article/124947-overview
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798481/

Thank you for the citations. Interesting stuff that propelled me to do more research.

This all brought up three more immediate questions for me:

1. What substance are we talking about? B6 or P5P? They are not the same thing and do not affect at lease some people the same way. This is something to keep in mind when looking at the results of studies.

"Based on my initial review of the medical literature, it appears that P5P supplements may not be needed by most individuals since regular vitamin B6 supplementation raises levels of P5P. However, there may be rare individuals who have a deficiency in enzymes that convert pyridoxine into pyridoxal 5 phosphate, and hence may benefit from P5P supplementation." http://www.raysahelian.com/pyridoxal5phophatep5p.html

(But perhaps it's not so rare; I'm reminded of the evolution of research around active versus artificial B12s.)

2. What exactly is too much? Toxicity occurs at what dose?

1,000mg/day, and that at long-term use. For a smaller set of people, 500/mg day.

"Although vitamin B6 is a water-soluble vitamin and is excreted in the urine, long-term supplementation with very high doses of pyridoxine may result in painful neurological symptoms known as sensory neuropathy. Symptoms include pain and numbness of the extremities and in severe cases, difficulty walking. Sensory neuropathy typically develops at doses of pyridoxine in excess of 1,000 mg per day. However, there have been a few case reports of individuals who developed sensory neuropathies at doses of less than 500 mg daily over a period of months. Yet, none of the studies in which an objective neurological examination was performed reported evidence of sensory nerve damage at intakes below 200 mg pyridoxine daily" http://lpi.oregonstate.edu/mic/vitamins/vitamin-B6

NOTE: that this does not address the question of whether the reported neuropathy at this high dose might have been caused in part or in whole by some other co-factor, like not enough methylgroups to support a changing biochemical system.

However it does help outline the range of safety, which I find useful.

3. What is the goal? Studies are showing improvement on everything from immune system disfunction to cardiovascular disease to kidney stones to CTS at daily doses anywhere up to 500mg/day, for some period of time (probably not "long-term".) For some people, the risk of (apparently reversible) neuropathy is probably worthwhile.

"Growing evidence from experimental and clinical studies suggests that systemic inflammation underlying most chronic diseases may impair vitamin B6 metabolism"

Interesting stuff.

My summary conclusions are that I'm glad for the information; it tells me that my current short-term 100mg/day experiment is unlikely to be a problem.

My favorite site on the subject: http://lpi.oregonstate.edu/mic/vitamins/vitamin-B6

 

[adreno]

I'd like to see some citations on this. I'm not saying you're wrong, but my research indicates that this is not the case, that most people running into problems with high dose P5P are really experiencing deficits in something else, most likely other methyl donors, like methylcobalamin AKA B12s.

I agree with this. In my experience, B6/P5P drains folate, and the two need to be in balance. Whenever I have gotten tingling, burning, etc from taking too much P5P, taking more folate sets it straight.

 

[Gondwanaland]

I agree with this. In my experience, B6/P5P drains folate, and the two need to be in balance. Whenever I have gotten tingling, burning, etc from taking too much P5P, taking more folate sets it straight.

Yes, have I overlooked it or none of the references provided explains HOW B6 causes neuropathy?

Of course that an excess of it might sit unmetabolized on your nerves (?), but people who were taking much smaller doses reported neuropathy and adreno's explanation seems to describe the likely mechanism.

 

[adreno]

Of course that an excess of it might sit unmetabolized on your nerves (?), but people who were taking much smaller doses reported neuropathy and adreno's explanation seems to describe the likely mechanism.

I want to be clear that I don't think super high doses of B6 are safe, but people have reported "neuropathy" from doses not much higher than 10mg. That just can't be right, and I think it could simply be that they are folate deficient. Of course, I could be completely wrong about this.

The extra drain on folate would probably also mean that more B12 is being used, if I understand things correctly.