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Gnosis's Extrafolate products (Thorne): misinformation and mislabeling.

Lotus97

Senior Member
Messages
2,041
Location
United States
I found a chart comparing potency of methylfolate brands. I don't know if it's accurate or not, but the person who created it explains their reasoning in the link below:
http://www.methyl-life.com/methylfolate-types.html
1359316652.jpg


One thing I should mention is that the person who created the chart is selling Quatrefolic and yet they still say Metafolin is more potent. They do provide a chart at the bottom claiming that their Quatrefolic product is still the best value due to the lower price. Their chart (the one about prices and not the one I posted here about potency) is inaccurate however. First, Solgar's Metafolin is $1.00 less than the price they say it is. On top of that, Pureformulas, Swanson, iHerb, and Vitacost have a lot of sales and/or free shipping offers so buying Solgar's Metafolin there would be the most cost effective. Right now Pureformulas would be the best place to order it. They have free shipping in the US for any size order and a 10% off offer if you use NEXT10. You can also check retailmenot.com for a referral code to use when you sign up for pureformulas that will give you an additional $5.00 in points that can be redeemed at any time. The other stores also have a lot of coupons and sales that can be found at retailmenot. Pureformulas is selling a b complex with Metafolin from Douglas Labs. Swanson is also selling an active B complex with Quatrefolic that is a better deal because it higher dosages of B vitamins including 50 mg of both P5P and R5P (this dosage might be too high for some people though). Even the Douglas Labs with 400 mcg of methylfolate and less P5P and R5P might be too much for some people.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Thorne actually doesn't use Extrafolate-S in their b complexes, multis, or Methyl Guard. It just says this: L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt)

As I said before, I don't know if that chart's accurate, but I've been taking Thorne's b complex for the past 5 days and now I'm switching to Quatrefolic to compare them. This is what Quatrefolic says: 400 mcg (6S)-5-MethylTetraHydroFolate (MTHF) (elemental, as 800 mcg (6S)-5-methyltetrahydrofolic acid, a glucosamine salt)

They're both glucosamine salt, but that doesn't mean they're the same, does it? The person who created the chart says that if it simply says L-MTHF then it could be a generic or racemic mixture, but that article from Dr. Ben says that L-MTHF is ok:confused:

Also, what does it mean where Quatrefolic says that 400 mcg = 800 mcg? With minerals they list the elemental value in the product, but with this they say the elemental is twice as much as what they sell it as. I plan on switching to Solgar's Metafolin when I run out of what I have, but I'd still like to know what potency I'm taking. It would also be good to know about Quatrefolic for anyone planning to take that active B complex from Swanson since it is a good deal for those wanting to take a higher dose of P5P and R5P.
 

adreno

PR activist
Messages
4,841
Lotus97,

Well, if Thorne uses the glucosamine salt version in their multis, that must mean it's quatrefolic, since this is the only glucosamine salt version.

From the link you posted above I read that quatrefolic is less potent than metafolin, but absorbed faster. So this might be why there is a difference in effects.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Lotus97,

Well, if Thorne uses the glucosamine salt version in their multis, that must mean it's quatrefolic, since this is the only glucosamine salt version.

From the link you posted above I read that quatrefolic is less potent than metafolin, but absorbed faster. So this might be why there is a difference in effects.

That's what I initially assumed, but with their standalone methylfolate they specifically say it's Extrafolate-S. It seems like they would specify the same thing in b complexes/multis that it's Quatrefolic. Methylmate also uses glucosamine salt and I don't think they say Quatrefolic either. You understand this more than me so maybe there aren't any other possibilities.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I found another company who has a multi in which they don't specify the brand, but did specify the brand in their standalone methylfolate product (the same way Thorne did). But they simply say L-MTHF in their description. I guess there's no way of knowing without contacting them since they don't specify glucosamine salt (even though their standalone is Quatrefolic). It looks like a good multi for people who are interested in a multi with a low dose of methylfolate, but a higher dose of b vitamins (including some coenzymated ones)
http://www.integratedhealth.com/hpdspec/mighty.html

I guess people will have to contact them to find out for sure what kind it is. Dr. Ben says L-MTHF is OK, but I'm not sure what the other possibilities are unless there's a difference between racemic and generic, but the chart lists both as having 6R so that can't be it. Or Dr. Ben is wrong. Or the person who created the chart is wrong.
 
Messages
70
Had an experience just recently where taking the Thorne product suddenly brought on the familiar and absolutely vile feeling that is identical to the one calcium folinate has created in me in the past--I regret only learning today that both of these are racemic mixes (I knew about the Thorne, but thought I could ignore it--plus I was desparate and didn't know of another affordable way to bump up my mthf levels quickly).

Interestingly, very very high doses of methylcobalamin seem to temper the feeling somewhat.

I've heard of people describing going on anti-depressants as like 'flicking a switch', which is what the onset of this feeling reminds me of--it is much like flicking off a switch. I feel like the body only alerts you to being in dire straights sometimes only when you're right on the knife's edge.

Ironically the vile feeling I mentioned is also identical to being folate deficient. I identified this deficiency when the feeling went away after taking 8mg of metafolin at once (10 tablets) and feeling fantastic--only to have the vile feeling return a few hours later. This is when I ordered next-day delivery on the Thorne mthf to restore my body's stores. Now I have quatrofolic in my possession I'll stick to that, although I might just stick to leaving folate out entirely for the time being and let my body reach an equilibrium by itself or just taking the other b-vitamins...

I wonder if any legitimate folate can displace the racemic folates in the liver and cause a temporary setback as it is ushered into the bloodstream.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Had an experience just recently where taking the Thorne product suddenly brought on the familiar and absolutely vile feeling that is identical to the one calcium folinate has created in me in the past--I regret only learning today that both of these are racemic mixes (I knew about the Thorne, but thought I could ignore it--plus I was desparate and didn't know of another affordable way to bump up my mthf levels quickly).

Interestingly, very very high doses of methylcobalamin seem to temper the feeling somewhat.

I've heard of people describing going on anti-depressants as like 'flicking a switch', which is what the onset of this feeling reminds me of--it is much like flicking off a switch. I feel like the body only alerts you to being in dire straights sometimes only when you're right on the knife's edge.

Ironically the vile feeling I mentioned is also identical to being folate deficient. I identified this deficiency when the feeling went away after taking 8mg of metafolin at once (10 tablets) and feeling fantastic--only to have the vile feeling return a few hours later. This is when I ordered next-day delivery on the Thorne mthf to restore my body's stores. Now I have quatrofolic in my possession I'll stick to that, although I might just stick to leaving folate out entirely for the time being and let my body reach an equilibrium by itself or just taking the other b-vitamins...

I wonder if any legitimate folate can displace the racemic folates in the liver and cause a temporary setback as it is ushered into the bloodstream.

Hi Forbius,

Most of the people here experience a form of paradoxical folate deficiency when taking smaller doses of l-methylfolate, below the level they need to bring all the "triage" levels out of deficiency at the same time. It is a manifestation of "partial methylation block" where some "levels" are working and some are still blocked. Taking the pure l-methylfolate gives the entire dose in an effective form. One can titrate to the level of l-methylfolate that leaves no deficiency symptoms. Also, if one is taking too high a dose of B1, B2 and/or B3 it can overdrive the need for methylfolate and/or potassium to insatiable levels.
 
Messages
70
Hi Forbius,

Most of the people here experience a form of paradoxical folate deficiency when taking smaller doses of l-methylfolate, below the level they need to bring all the "triage" levels out of deficiency at the same time. It is a manifestation of "partial methylation block" where some "levels" are working and some are still blocked. Taking the pure l-methylfolate gives the entire dose in an effective form. One can titrate to the level of l-methylfolate that leaves no deficiency symptoms. Also, if one is taking too high a dose of B1, B2 and/or B3 it can overdrive the need for methylfolate and/or potassium to insatiable levels.

Interesting, and makes sense, although I'm not sure it applies to my circumstances given the patterns I've observed. Are you saying that B's 1-3 do not merely get excreted as waste when in excess but that the body tries to use it all up?

I've noticed you only ever recall one set of patterns, like you're recalling your own experiences (I've read many of your posts, which have a lot of reoccurring themes, and -literally nothing- aligns with my own experiences), although I know you say you have data on other people. Perhaps other people on this forum can back you up, but not me.

I recognise the overdriving you are talking about: I've depleted stores of several different nutrients myself due to overdriving (or normalising) certain metabolic processes, although potassium is one of the few I haven't.

I'm not eager to make a shoe fit, and I'm not convinced your physical profile matches my own, although I wouldn't be unwelcome to any opposing evidence. If you could point out why exactly you think the paradoxical folate deficiency is something I've experienced then be my guest, or if you were just throwing it out there, say that too. :) I could point out why it doesn't fit, but that would feel too much like proving a negative...

*EDIT
1. I would like to quiz you on whether you actually have anything to offer on racemic mixtures beyond that it's not the dose you are getting on the label? Then again you would have already said it if you had. I personally find it alarming that this inert folate can get trapped in the liver.
2. Perhaps you were implying that I went from too little to too much folate with the (racemic) 5mg mthf mixture and strained the other stages of folate metabolism? It would seem possible if I hadn't felt fine for a week and a half and consumed ... let me check my logs... well, it was probably about 200mg, it's hard to tally up since some was in a powdered b-vitamin blend I make. I would expect to feel the sting of a crisis sooner if I had increased my stores so rapidly and to that degree. Unless you could say my backlog of other folates was fine and then became strained?

*FURTHER EDIT
I'm a bit more humble now, as I made a formulation of b's 1, 2, 3, 5, 6, and 7 and I do feel subtly worse after some of it, I think. If it is what you suggest, then the question is how to restore my other folates now, as I don't dare take calcium folinate which in the past has made me feel the exact same horrid feeling I have right now. I've still not tossed the theory away that it is the racemic folate that is causing the problem. Also ordered some folic acid which is on the way-- I may just nibble on a tablet and then never touch it again if I get the reaction I'm expecting to have.

Is it right that 5-mthf cannot be converted back into other folates?
 
Last edited:

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Forbius,

I don't dare take calcium folinate which in the past has made me feel the exact same horrid feeling I have right now

Calcium folinate, for some people, percentage unknown, acts in such a way as to compete with or block l-methylfolate. The same thing happens for a sizable percentage of the population with folic acid and some probably small percentage with vegetable folates. I get all sorts of "horrid feelings" with folic acid, folinic acid and vegetable folates. There have been all sorts of people noticing these things since the early 60s. It is voiced in folic acid research of the period, that some people appear to accumulate (location and how unspecified) the unconverted or partially converted folic acid and that it somehow for some reason interferes with the folates the body actually uses (l-methylfolate). I don't see any reason the wrong isomers might not also block the active one. I suppose that depends upon the actual mechanism(s). Right now you and I and maybe a million or two others are noticing these things that used to be called aberrations. Statistically they were relegated to the "tails" out past 2 standard deviations and of no importance.

What has changed is that now you or I ore anybody can go out and buy at vitamin prices what was once available at very high expense for research only. IN 1970 a 10mg vial of MeCbl was $1000. I bet methylfolate was similar in price. No person can run A-B trials at those prices. So back then if a person complained that folic acid made them sick, eat more veggies and if those made a person sick, "It's All In Your Head" or "eat your liver". I got much sicker when my mother took away eggs and bacon and said "You have to eat Special K to get your vitamins and make you healthier". Then she blamed me for getting sicker and took away more meat and eggs and gave me more vitaminized foods that made me even sicker. You get the picture.

About 6-7 years ago the first vitamin batch of Metafolin became available on the market for one batch that was remaindered before it was even advertised. I tried it and knew in 1 day that I had to have it and bought every bottle I could locate. It got me through 2 years until it became easily available.


1. I would like to quiz you on whether you actually have anything to offer on racemic mixtures beyond that it's not the dose you are getting on the label? Then again you would have already said it if you had. I personally find it alarming that this inert folate can get trapped in the liver.


I don't know if it gets stuck in the liver or not however I can certainly conceive of it interfering with the active form as other inactive folates do. I had never heard that hypothesis before. I just didn't separate them out of all the other forms of inactive folates.

2. Perhaps you were implying that I went from too little to too much folate with the (racemic) 5mg mthf mixture and strained the other stages of folate metabolism? It would seem possible if I hadn't felt fine for a week and a half and consumed ... let me check my logs... well, it was probably about 200mg, it's hard to tally up since some was in a powdered b-vitamin blend I make. I would expect to feel the sting of a crisis sooner if I had increased my stores so rapidly and to that degree. Unless you could say my backlog of other folates was fine and then became strained?

It takes a couple of days for folinic acid to clear sufficiently from the body for Metafolin to become effective at relatively lower doses. Nothing I have ever seen indicates any real "storage" of folates or cobalamins in the body though there is a large mythology grown up about that.

Is it right that 5-mthf cannot be converted back into other folates?

L-methylfolate is necessary and sufficient all by its self. It needs no other folates to be taken, not that they can be avoided in the diet. Rich looked for and found the biochemical pathway for the one place I believe you mentioned. He posted it, though I couldn't tell you where, it was one of his later posts to me before his death. He did comment that it needed enough MeCbl to work. So again, the other pathway from folinic acid appears to be a starvation workaround when not enough MeCbl/Mfolate is available and the body is in "recycle" mode for b12 and folates.

I've been working on this whole b12-folate problem actively since 1978. After a few days at the library (a big building with lots of books and journals on paper and microfilm) in Cleveland, I came to the conclusion that my biological problems were caused by lack of sufficient real b12 and real folate. I did a two year trial of desiccated liver, 100 tablets of 350mg a day. That is equivalent to about a pound of liver a day. It worked but not quite well enough. My grandfather (not biologically related) survived ALS for 30+ years with the extract from 5 pounds of liver daily.

I spent 5 years at two other forums coming up with the deadlock quartet finding how to make methylation and ATP startup occur. Things changed at those forums and I moved here largely because of Rich VK and his partial methylation block (paradoxical folate deficiency described slightly differently). Instead of most people just getting going easily and having a lot of healing, here most people were stalled on "detox" and suffering horribly for years. That set up the perfect situation for a differential analysis between the Active B12/folate Protocol and the Simplified Methylation Protocol, the full (not simplified) Yasko, and other variants. It made for a near perfect Monte Carlo simulation.

All these patterns of feeling lousy on folic acid, folinic acid and variants and even veggie folates for some people, revealed themselves as soon as people could actually trial l-methylfolate. The difference is night and day for lots of people. It turns out that there was another variant of paradoxical folate deficiency; low dose mfolate could turn on one or more triage layers as the researchers called it and also intensify deficiency symptoms on other layers. This was a perfect demonstration of how partial methylation block is partial.

So yes, I experienced all this stuff. I nearly died from it all, several times. That is how I came up with the list of "95% reasons why B12 and folate therapies don't work". It's not theoretical at all. It is based on my experiences because I ran into every one of them and then verified by thousands of people. I also ran a lot of trials, N=5 brand comparisons, N=1000 questionnaire development study with single dose MeCbl (and later some variants), N=2 longitudinal injection studies in the ranges 1mg to 500mg between the two of us, thousands of repetitions. Thousands of repetitions of oral mucosal absorption trials compared to injections, the effect of light in spoiling injectable MeCbl and AdoCbl. I've spoiled thousands of mgs of MeCbl, at first unintentionally, then intentionally.

We, a voluntary group of active b12/folate protocol, N=10, ran a glutathione/NAC/whey trial. It last 6 weeks before we all bailed because of neurological damage (SACD) recognizably occurring. So far I have not succeeded in reversing all that damage and getting back to where I was before that trial and that was 5 years ago.

Then you add the very typical potassium response and 95% or so of the "detox" comes down to some form of folate difficulties and/or induced low potassium, which is documented going back to the earliest b12 research in the 50s.

So you add all this to the research showing that we with CFS/FMS all have low Cerebral Spinal Fluid cobalamin levels and are in the company of people with ALS, MS, Parkinson's, Supra Nuclear Palsy, Autism and Alzheimer's,. the pathways mapped so far make a lot of sense. There are several pathways through. Two are pretty clear now, the SACD- MS and the Parkinson's direction. The other pathways are not yet so clear.

So now perhaps you have the hooks into your folate responses and can see how this incomplete map might have some information of use to you.

Also how B1, B2 and B3 affect l-methylfolate and potassium usage is just beginning to be applied. It's complicated, but then if it wasn't it would have been long solved by now and none of us would be sick. I have been healed of CFS/FMS/ME for 6 years now and of Congestive Heart Failure for about a year. My SACD is in about 70% remission and still working on it.

The folate understandings of the last 6 years is what has allowed the healing of CHF. It leaves me with hope that the remaining neurological damage might be correctable.
 
Messages
70
Completely mangled the quoting here, just editing it now

Hi Forbius,

I don't dare take calcium folinate which in the past has made me feel the exact same horrid feeling I have right now

Calcium folinate, for some people, percentage unknown, acts in such a way as to compete with or block l-methylfolate. The same thing happens for a sizable percentage of the population with folic acid and some probably small percentage with vegetable folates. I get all sorts of "horrid feelings" with folic acid, folinic acid and vegetable folates. There have been all sorts of people noticing these things since the early 60s. It is voiced in folic acid research of the period, that some people appear to accumulate (location and how unspecified) the unconverted or partially converted folic acid and that it somehow for some reason interferes with the folates the body actually uses (l-methylfolate).

Just to clarify, you're saying that all other forms of folate have no biological use except to become folate?

Do you have any citations for that?

What i'm curious about is that an excess of folate consumption seems to produce the same effect as a diminished consumption (as initially, taking 5-mthf made the nasty feeling go away; now it provokes it, along with the other b-vitamins except b12).

By your understanding would a high folate:b12 ratio cause the same feeling and if so why?

I don't see any reason the wrong isomers might not also block the active one. I suppose that depends upon the actual mechanism(s). Right now you and I and maybe a million or two others are noticing these things that used to be called aberrations. Statistically they were relegated to the "tails" out past 2 standard deviations and of no importance.

What has changed is that now you or I ore anybody can go out and buy at vitamin prices what was once available at very high expense for research only. IN 1970 a 10mg vial of MeCbl was $1000. I bet methylfolate was similar in price. No person can run A-B trials at those prices. So back then if a person complained that folic acid made them sick, eat more veggies and if those made a person sick, "It's All In Your Head" or "eat your liver".

I'm pretty sure I'd die if I ate my liver. We have moved on haven't we?

I got much sicker when my mother took away eggs and bacon and said "You have to eat Special K to get your vitamins and make you healthier". Then she blamed me for getting sicker and took away more meat and eggs and gave me more vitaminized foods that made me even sicker. You get the picture.

About 6-7 years ago the first vitamin batch of Metafolin became available on the market for one batch that was remaindered before it was even advertised. I tried it and knew in 1 day that I had to have it and bought every bottle I could locate. It got me through 2 years until it became easily available.

1. I would like to quiz you on whether you actually have anything to offer on racemic mixtures beyond that it's not the dose you are getting on the label? Then again you would have already said it if you had. I personally find it alarming that this inert folate can get trapped in the liver.

I don't know if it gets stuck in the liver or not however I can certainly conceive of it interfering with the active form as other inactive folates do. I had never heard that hypothesis before. I just didn't separate them out of all the other forms of inactive folates.

The hypothesis is linked to in the OP, which is why I spoke of it as if it were understood.

2. Perhaps you were implying that I went from too little to too much folate with the (racemic) 5mg mthf mixture and strained the other stages of folate metabolism? It would seem possible if I hadn't felt fine for a week and a half and consumed ... let me check my logs... well, it was probably about 200mg, it's hard to tally up since some was in a powdered b-vitamin blend I make. I would expect to feel the sting of a crisis sooner if I had increased my stores so rapidly and to that degree. Unless you could say my backlog of other folates was fine and then became strained?
It takes a couple of days for folinic acid to clear sufficiently from the body for Metafolin to become effective at relatively lower doses. Nothing I have ever seen indicates any real "storage" of folates or cobalamins in the body though there is a large mythology grown up about that.

Speaking of eating your liver, I'm pretty sure if I ate some liver I'd find folate 'stored' there. I'm not sure what definition of storage you are using that qualifies this as a myth. Metabolism occurs over a finite time-frame and certain particles are held in stasis until they can react with something and be transported or altered. If metabolism slows, the time-frame increases. Is this just a question of what time-frame we are talking about when we are speaking of 'storage'?

Is it right that 5-mthf cannot be converted back into other folates?
L-methylfolate is necessary and sufficient all by its self. It needs no other folates to be taken, not that they can be avoided in the diet.

I read a post that referred to it as being unrecommended by itself as it was a 'dead-end' folate. I assumed this meant that it couldn't be recycled back into other folates, and another that asserted that dibencozide and methylcobalamin could be converted back and forth as needed, but did not say the same about methylfolate. I'll try and find the links and edit them in. Do you know what was actually meant?

Rich looked for and found the biochemical pathway for the one place I believe you mentioned. He posted it, though I couldn't tell you where, it was one of his later posts to me before his death. He did comment that it needed enough MeCbl to work. So again, the other pathway from folinic acid appears to be a starvation workaround when not enough MeCbl/Mfolate is available and the body is in "recycle" mode for b12 and folates.

You speak of things I know nothing of, but it all sounds like something I should check out sometime.

Another question occured to me: is there an alternative way to drive up the consumption of folate (if, indeed, that is the problem at hand, here--I don't want to pour oil on the fire by getting the diagnosis wrong) without methylcobalamin? Not that I'm unable to supply it if that's the only way.

I've been working on this whole b12-folate problem actively since 1978. After a few days at the library (a big building with lots of books and journals on paper and microfilm) in Cleveland, I came to the conclusion that my biological problems were caused by lack of sufficient real b12 and real folate. I did a two year trial of desiccated liver, 100 tablets of 350mg a day. That is equivalent to about a pound of liver a day. It worked but not quite well enough. My grandfather (not biologically related) survived ALS for 30+ years with the extract from 5 pounds of liver daily.

Funny, that. I tried to buy dessicated liver but every product I found had the cholesterol removed and whole lot of other nutrients along with it. I'm in the UK, though, so that was only 2 products.

I spent 5 years at two other forums coming up with the deadlock quartet finding how to make methylation and ATP startup occur. Things changed at those forums and I moved here largely because of Rich VK and his partial methylation block (paradoxical folate deficiency described slightly differently). Instead of most people just getting going easily and having a lot of healing, here most people were stalled on "detox" and suffering horribly for years. That set up the perfect situation for a differential analysis between the Active B12/folate Protocol and the Simplified Methylation Protocol, the full (not simplified) Yasko, and other variants. It made for a near perfect Monte Carlo simulation.

Incidentally, you never did get back to me about 'detox'. I remember you took a glance at my inaugural forum post and automatically assumed the 'detox' I spoke of was what you refer to by it, just because I happened to use the same word even though the symptoms I described by it are totally different (i've since advanced my knowledge a lot and am 100% certain I have a mercury issue, as well as why I experienced that reaction, but I won't go into that at this moment).

For what it's worth, I do suspect inorganic mercury to be a potent methyl stealer, although I have no evidence other than my note-taking and observing patterns.

All these patterns of feeling lousy on folic acid, folinic acid and variants and even veggie folates for some people, revealed themselves as soon as people could actually trial l-methylfolate. The difference is night and day for lots of people. It turns out that there was another variant of paradoxical folate deficiency; low dose mfolate could turn on one or more triage layers as the researchers called it and also intensify deficiency symptoms on other layers. This was a perfect demonstration of how partial methylation block is partial.

So yes, I experienced all this stuff. I nearly died from it all, several times. That is how I came up with the list of "95% reasons why B12 and folate therapies don't work". It's not theoretical at all. It is based on my experiences because I ran into every one of them and then verified by thousands of people. I also ran a lot of trials, N=5 brand comparisons, N=1000 questionnaire development study with single dose MeCbl (and later some variants), N=2 longitudinal injection studies in the ranges 1mg to 500mg between the two of us, thousands of repetitions. Thousands of repetitions of oral mucosal absorption trials compared to injections, the effect of light in spoiling injectable MeCbl and AdoCbl. I've spoiled thousands of mgs of MeCbl, at first unintentionally, then intentionally.

Was this a personal project, or a professional one? If it's not a personal question, how did you afford it all? :)

We, a voluntary group of active b12/folate protocol, N=10, ran a glutathione/NAC/whey trial. It last 6 weeks before we all bailed because of neurological damage (SACD) recognizably occurring. So far I have not succeeded in reversing all that damage and getting back to where I was before that trial and that was 5 years ago.

Then you add the very typical potassium response and 95% or so of the "detox" comes down to some form of folate difficulties and/or induced low potassium, which is documented going back to the earliest b12 research in the 50s.

So you add all this to the research showing that we with CFS/FMS all have low Cerebral Spinal Fluid cobalamin levels and are in the company of people with ALS, MS, Parkinson's, Supra Nuclear Palsy, Autism and Alzheimer's,. the pathways mapped so far make a lot of sense. There are several pathways through. Two are pretty clear now, the SACD- MS and the Parkinson's direction. The other pathways are not yet so clear.

So now perhaps you have the hooks into your folate responses and can see how this incomplete map might have some information of use to you.

Also how B1, B2 and B3 affect l-methylfolate and potassium usage is just beginning to be applied. It's complicated, but then if it wasn't it would have been long solved by now and none of us would be sick. I have been healed of CFS/FMS/ME for 6 years now and of Congestive Heart Failure for about a year. My SACD is in about 70% remission and still working on it.

The folate understandings of the last 6 years is what has allowed the healing of CHF. It leaves me with hope that the remaining neurological damage might be correctable.

Thank you for the thorough answer.
 
Messages
70
I'm also wondering what data you have on the relationship between the b-vitamins you mentioned and folate and whether there is a certain ratio to be maintained.

Up until now, I thought I could just unthinkingly take a modest-sized megadose of the b-vitamins 1 through to 7 and my body would just excrete the unneeded stuff, not try to metabolise it. But today has provided evidence that those vitamins in isolation exacerbate the feeling I've been having (thanks to you pointing out that this is a possibility). Even a few small sips on a Red Bull set me off--although that could also be the taurine having a folate-sparing effect?

Does it only try to metabolise it in the presence of a surplus of folate? And if it's not too much trouble to explain, what supports your answer? Can you provide any more detail about this?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I'm also wondering what data you have on the relationship between the b-vitamins you mentioned and folate and whether there is a certain ratio to be maintained.

Up until now, I thought I could just unthinkingly take a modest-sized megadose of the b-vitamins 1 through to 7 and my body would just excrete the unneeded stuff, not try to metabolise it. But today has provided evidence that those vitamins in isolation exacerbate the feeling I've been having (thanks to you pointing out that this is a possibility). Even a few small sips on a Red Bull set me off--although that could also be the taurine having a folate-sparing effect?

Does it only try to metabolise it in the presence of a surplus of folate? And if it's not too much trouble to explain, what supports your answer? Can you provide any more detail about this?

Hi Forbius,

I'm going to answer this first because it is a short one.

I'm also wondering what data you have on the relationship between the b-vitamins you mentioned and folate and whether there is a certain ratio to be maintained.

I'll get to the daily doses in a minute of B1, B2 and B3. If there is a ratio of any kind it isn't obvious and there is no way enough data for calculating any ratios if there is one. At the moment this is the most recent pattern to emerge, the range is unknown and variations amongst people are unknown. This is bleeding edge information, and a lot of us have been doing the bleeding for years in many cases. Physics theory may change with the funeral of each physicist. In the case of nutrition and medicine it's the patients' funerals.

Right now the amounts I am taking:
B1 - 30mg/day, going up to 55mg threw me into Methylfolate deficiency at 8mg/day in hours after the first additional 25 mg judged by the onset of edema, my quickest immediate symptom of even mild deficiency.
B2 - 20.4mg/day, I haven't trialed more yet, and after the severity of the B1 trial I would only increment at 5mg a day maximum.
B3 - 100mg/day. Again, I haven't trialed more since getting off of an additional 100mg/day.

Next week I'm going to cut the b-complex in half and cut all these amounts by 50%. I take p5p, biotin, pantithine, lecithin (choline) with no effect at all on mfolate and potassium.

Does it only try to metabolise it in the presence of a surplus of folate?

No. I have never had a surplus of folate because of this effect. It is only very recently that I have been able to reach sufficiency for more than a week or two at a time.

And if it's not too much trouble to explain, what supports your answer?

A lifetime of folate deficiency that got worse and worse as I had more and more vitamins.

Can you provide any more detail about this.

Read my posts in date order from when I started. The whole 5-6 year history is here.

Even a few small sips on a Red Bull set me off--although that could also be the taurine having a folate-sparing effect?

I have no idea about taurine.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Just to clarify, you're saying that all other forms of folate have no biological use except to become folate? Do you have any citations for that?

I'm not saying that. Many people appear able to use at least some of the vegetable folates. I'm sure that they are of use to the organisms in which they are found. There are at least 18 plant cobalamins for instance useless to all animals which use MeCbl and AdoCbl but not the plant cobalamins. Animals concentrate the animal useful folate and cobalamins in their flesh which we then eat. They get MeCbl from bacteria, insects, insect eggs and so on. Manure contains MeCbl generated by bacteria in the lower intestine whereas the B12 absorption zone is in the small intestine. Fermented manure contains more MeCbl than fresh.


What i'm curious about is that an excess of folate consumption seems to produce the same effect as a diminished consumption (as initially, taking 5-mthf made the nasty feeling go away; now it provokes it, along with the other b-vitamins except b12).

In a lot of research they speak of "triage" zones for B12 and folate and that these nutrients can be directed to certain zones and not to other zones. So when there isn't enough folate for all zones, some get the folate and some don't. So some zones can be healing and some have deficiency symptoms at the same time. Rich called it "partial methylation block" for a good reason. A complete methylation block is called methyltrap, he proposed it ought to be called methylfolate trap for clarity. That hits like a ton of bricks.

By your understanding would a high folate:b12 ratio cause the same feeling and if so why? No. There is no ratio relationship between MeCbl or AdoCbl and l-methylfolate as far as I can tell. It appears that perhaps 100mcg absorbed daily of MeCbl-AdoCbl is adequate for startup of all levels except CNS in people with low CSF cobalamin levels due to unknown causes, apparently genetic. More active b12 allows for deeper tissue penetration and somewhat faster healing but folate requirements don't appear affected by b12 quantities once that necessary minimum level is reached with it distributed by diffusion directly in the active form (mucosal absorption or injection) and not involved with TC2.

The hypothesis is linked to in the OP, which is why I spoke of it as if it were understood.

What is "OP"? In any case I have spent 38 years doing massive reading on the subject of B12 and folate, and as most of it is based on folic acid and CyCbl research and on a norming population that is chronically consuming them it is almost all wrong with ridiculous hypotheses to explain that which is unexplainable in terms of folic acid and CyCbl.

Funny, that. I tried to buy dessicated liver but every product I found had the cholesterol removed and whole lot of other nutrients along with it. I'm in the UK, though, so that was only 2 products.

All the desiccated liver products I am aware of are defatted and all connective tissue removed leaving the water soluble vitamins and the proteins, otherwise they would all be dripping fat and getting rancid very quickly.

Incidentally, you never did get back to me about 'detox'. I remember you took a glance at my inaugural forum post and automatically assumed the 'detox' I spoke of was what you refer to by it, just because I happened to use the same word even though the symptoms I described by it are totally different (i've since advanced my knowledge a lot and am 100% certain I have a mercury issue, as well as why I experienced that reaction, but I won't go into that at this moment).

As I said, the descriptions I give are the 95% answers. However, the mercury business is as poorly understood in it's effect and has as much mythology about it as everything else. 80% of mercury caused symptoms are identical with B12/folate deficiency symptoms. That comes from research

For what it's worth, I do suspect inorganic mercury to be a potent methyl stealer, although I have no evidence other than my note-taking and observing patterns.

Actually the evidence is that in vivo mercury is a very weak methyl stealer. If it were a potent one it would cause methyltrap as does bismuth (for those unfortunate enough to get it intro serum) and arsenic do, in minutes to hours. Also glutathione and cyanide do it the opposite way around and "steal" the cobalamin and also produce methyltrap in minutes to hours. If it were a potent methyl stealer 1mg could destroy all the active b12 in the body and all that a person would be likely to eat over the next 2-5 years. Instead, much larger doses of mercury than 1mg produces the symptoms of partial methylation block, the 80% of symptoms that are identical to b12 and folate deficiency. As injected or supplemented MeCbl is excreted from the body at 99% over the next 2 days unchanged, as MeCbl, mercury is NOT stealing much in the way of methyl from MeCbl. The upper limit of methyl stealing is <1% of supplemented MeCbl. Only about 10-20mcg a day can be recycled to MeCbl. That would allow 1-3 mcg of mercury a day to be supplied with methyl groups via MeCbl to be consistent with much research. These are measurements of effects rather than various theories and hypotheses about b12 and folate.

Was this a personal project, or a professional one? If it's not a personal question, how did you afford it all?

It was a personal project. I bought 250 grams of MeCbl wholesale. Prior to that I went to over 100 doctors/practitioners trying to get a useful diagnosis and effective treatment at a cost of about $10,000 per year for over 20 years. The sum total of effectiveness of all the practitioners, from mercury docs to specialists of every variety was absolute zero. 100% of them were 100% wrong. Having cured myself of these things sure does give good 20/20 hindsight why none of the treatments were at all effective. Every theory was wrong. Every diagnosis was wrong. I was working for much of that time. I was uninsurable because of a guy who t-boned me in 1972 when he ran a red light.
 
Messages
70
Ok, before I respond I just want to say that I seem to have cracked something: intercepting bile folates with methylcobalamin seems to cause an interaction that 'switches me back on'. I wonder if they interact directly on contact. Doing a methylcobalamin suppository doesn't achieve this. Much like when I corrected a metafolin deficiency, my digestion suddenly picked up as well and my brain fog went away.

Just something to ponder on.

Hi Forbius,

I'm going to answer this first because it is a short one.

I'm also wondering what data you have on the relationship between the b-vitamins you mentioned and folate and whether there is a certain ratio to be maintained.

I'll get to the daily doses in a minute of B1, B2 and B3. If there is a ratio of any kind it isn't obvious and there is no way enough data for calculating any ratios if there is one. At the moment this is the most recent pattern to emerge, the range is unknown and variations amongst people are unknown. This is bleeding edge information, and a lot of us have been doing the bleeding for years in many cases. Physics theory may change with the funeral of each physicist. In the case of nutrition and medicine it's the patients' funerals.

Right now the amounts I am taking:
B1 - 30mg/day, going up to 55mg threw me into Methylfolate deficiency at 8mg/day in hours after the first additional 25 mg judged by the onset of edema, my quickest immediate symptom of even mild deficiency.
B2 - 20.4mg/day, I haven't trialed more yet, and after the severity of the B1 trial I would only increment at 5mg a day maximum.
B3 - 100mg/day. Again, I haven't trialed more since getting off of an additional 100mg/day.

Next week I'm going to cut the b-complex in half and cut all these amounts by 50%. I take p5p, biotin, pantithine, lecithin (choline) with no effect at all on mfolate and potassium.

For the longest time I was able to have no respect at all for the amount of b-vitamins sans 9 and 12 (except 6, which I stayed below a certain amount with). It is only when I started 'playing' with either methylated folate in large doses or unmethylated folate in trivial doses that I experienced this issue.

Does it only try to metabolise it in the presence of a surplus of folate?
No. I have never had a surplus of folate because of this effect. It is only very recently that I have been able to reach sufficiency for more than a week or two at a time.

And if it's not too much trouble to explain, what supports your answer?

A lifetime of folate deficiency that got worse and worse as I had more and more vitamins.

Can you provide any more detail about this.

Read my posts in date order from when I started. The whole 5-6 year history is here.

Even a few small sips on a Red Bull set me off--although that could also be the taurine having a folate-sparing effect?

I have no idea about taurine.

Ok, well as I understand it, methionine synthase drives up taurine production--so taking taurine perhaps would slow down the metabolism of my excess folate.


Just to clarify, you're saying that all other forms of folate have no biological use except to become folate? Do you have any citations for that?

I'm not saying that. Many people appear able to use at least some of the vegetable folates.

Ok, I thought it was implied when you said 5-mthf is all that is needed. As I said, I read a post on here saying it was a 'dead-end' folate that couldn't be converted back into others. Is that incorrect?

What i'm curious about is that an excess of folate consumption seems to produce the same effect as a diminished consumption (as initially, taking 5-mthf made the nasty feeling go away; now it provokes it, along with the other b-vitamins except b12).
In a lot of research they speak of "triage" zones for B12 and folate and that these nutrients can be directed to certain zones and not to other zones. So when there isn't enough folate for all zones, some get the folate and some don't. So some zones can be healing and some have deficiency symptoms at the same time. Rich called it "partial methylation block" for a good reason. A complete methylation block is called methyltrap, he proposed it ought to be called methylfolate trap for clarity. That hits like a ton of bricks.

By your understanding would a high folate:b12 ratio cause the same feeling and if so why? No. There is no ratio relationship between MeCbl or AdoCbl and l-methylfolate as far as I can tell. It appears that perhaps 100mcg absorbed daily of MeCbl-AdoCbl is adequate for startup of all levels except CNS in people with low CSF cobalamin levels due to unknown causes, apparently genetic. More active b12 allows for deeper tissue penetration and somewhat faster healing but folate requirements don't appear affected by b12 quantities once that necessary minimum level is reached with it distributed by diffusion directly in the active form (mucosal absorption or injection) and not involved with TC2.

I wasn't suggesting that b12 would affect folate requirements but rather the opposite. Anyway, our experiences don't align here.

The hypothesis is linked to in the OP, which is why I spoke of it as if it were understood.
What is "OP"?

Original post (of the thread).

In any case I have spent 38 years doing massive reading on the subject of B12 and folate, and as most of it is based on folic acid and CyCbl research and on a norming population that is chronically consuming them it is almost all wrong with ridiculous hypotheses to explain that which is unexplainable in terms of folic acid and CyCbl.

I get that you know a lot. I wouldn't be talking to you otherwise.

Funny, that. I tried to buy dessicated liver but every product I found had the cholesterol removed and whole lot of other nutrients along with it. I'm in the UK, though, so that was only 2 products.
All the desiccated liver products I am aware of are defatted and all connective tissue removed leaving the water soluble vitamins and the proteins, otherwise they would all be dripping fat and getting rancid very quickly.

Alright then. Although certainly some minerals get lost in this process as well. I read a review of one product implying that they didn't used to remove these components from the product.

Incidentally, you never did get back to me about 'detox'. I remember you took a glance at my inaugural forum post and automatically assumed the 'detox' I spoke of was what you refer to by it, just because I happened to use the same word even though the symptoms I described by it are totally different (i've since advanced my knowledge a lot and am 100% certain I have a mercury issue, as well as why I experienced that reaction, but I won't go into that at this moment).
As I said, the descriptions I give are the 95% answers. However, the mercury business is as poorly understood in it's effect and has as much mythology about it as everything else. 80% of mercury caused symptoms are identical with B12/folate deficiency symptoms. That comes from research

That would make sense.

For what it's worth, I do suspect inorganic mercury to be a potent methyl stealer, although I have no evidence other than my note-taking and observing patterns.
Actually the evidence is that in vivo mercury is a very weak methyl stealer. If it were a potent one it would cause methyltrap as does bismuth (for those unfortunate enough to get it intro serum) and arsenic do, in minutes to hours. Also glutathione and cyanide do it the opposite way around and "steal" the cobalamin and also produce methyltrap in minutes to hours. If it were a potent methyl stealer 1mg could destroy all the active b12 in the body and all that a person would be likely to eat over the next 2-5 years.

Aren't we assuming a lot here? For instance where the mercury is, and if the body has control over where it goes. 1mg of mercury in the body doesn't mean 1mg of mercury making contact with 1mg of methlcobalamin.

Keep in mind that we have seen mercury exposure throughout our evolution: I think the body is more equipped to deal with it than we give it credit for.

Instead, much larger doses of mercury than 1mg produces the symptoms of partial methylation block, the 80% of symptoms that are identical to b12 and folate deficiency. As injected or supplemented MeCbl is excreted from the body at 99% over the next 2 days unchanged, as MeCbl, mercury is NOT stealing much in the way of methyl from MeCbl. The upper limit of methyl stealing is <1% of supplemented MeCbl. Only about 10-20mcg a day can be recycled to MeCbl. That would allow 1-3 mcg of mercury a day to be supplied with methyl groups via MeCbl to be consistent with much research. These are measurements of effects rather than various theories and hypotheses about b12 and folate.

Freddd, I can know where you're coming from if you're fed up with doubters, but please give me some credit. This is not just 'hypothesis and theory', I'm going by my own experience. Then again I'm unwilling to support any of the theories I'm advancing at present--if I were you I'd say 'read my posting history' but in this case it's 'wait until I'm fully cured and I then post something'.

I don't doubt that you go by evidence when you make your claims, so please give me the same consideration.

You also seem to be a believer in 'the proof is in the pudding' when you cite your having overcome your chronic fatigue. I myself have seen a 70% remission in not only my chronic fatigue, but my symptoms of autism and dyspraxia as well, and I've done it by following a very different path to the one you've taken.

Was this a personal project, or a professional one? If it's not a personal question, how did you afford it all?
It was a personal project. I bought 250 grams of MeCbl wholesale. Prior to that I went to over 100 doctors/practitioners trying to get a useful diagnosis and effective treatment at a cost of about $10,000 per year for over 20 years. The sum total of effectiveness of all the practitioners, from mercury docs to specialists of every variety was absolute zero. 100% of them were 100% wrong. Having cured myself of these things sure does give good 20/20 hindsight why none of the treatments were at all effective. Every theory was wrong. Every diagnosis was wrong. I was working for much of that time. I was uninsurable because of a guy who t-boned me in 1972 when he ran a red light.

So how far out of the woods are you with it all? Do you come back here only to help others, or what is left for improvement in your own health?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Forbius,

So how far out of the woods are you with it all? Do you come back here only to help others, or what is left for improvement in your own health?

I don't have fibromyalgia or chronic fatigue any more, or IBS, or asthma, or allergies, or constant nausea or daily vomiting, if IBS, or neuropathic bladder, or any of a couple of hundred symptoms and not for the past 6 years. I don't have muscle atrophy except for my feet. and in some specific areas of neurological damage in my back I don't have congestive heart failure. What I do have is Sub Acute Combined Degeneration, a type of central nerve damage, brain and cord. I have about 70% regression of that and holding. I have the things I started with as a child, problems maintaining adequate folate and an inability to use a lot of veggie folates, low potassium problems that appear to tie into the cyclical paradoxical folate deficiency. I have the same problems getting cobalamin into my brain and keeping it there as is found in CFS, FMS, MS, Parkinson's, ALS, Supra Nuclear Palsy, Autism, Alzheimer's. I have the same need for carnitine I appear to always have had.


So I have all the root causes in place that would bring back all the symptoms and illnesses if I let myself get deficient in them again but I don't have the diseases these deficiencies cause except SACD as that is difficult to heal. It is similar to MS except it is bi-lateral and has a body b12 deficiency.

I was exposed to lots of mercury as a child. I played with it. My father came home after working with it every day as a dentist. How much it caused is difficult to say. For all I know it is an unknown factor in causing SACD as opposed to other things.

It has taken the last 6 years to at least pragmatically solve the paradoxical folate deficiency varieties many of us have. Then the last 6 months there has been more focus on B1, B2 and B3 and how that drives folate and potassium use/loss. It affects me that way too.


You also seem to be a believer in 'the proof is in the pudding' when you cite your having overcome your chronic fatigue. I myself have seen a 70% remission in not only my chronic fatigue, but my symptoms of autism and dyspraxia as well, and I've done it by following a very different path to the one you've taken.

I wouldn't be surprised as you have some very different disorders. I've also personally observed some very large changes for some with autism when they utilize all for of the deadlock quartet. I've also watched people very painstakingly undo a few of the hundreds of biochemical problems caused by the deadlock quartet by finding other pathways and undoing specific portions of the problems. Then when the underlying problems are changed some of these come undone. At a very basic level I have had to re-titrate all sorts of vitamins and things at different stages of healing because the things they were based on changed under their feet, as it were.



The whole "theory of vitamins" many people are working on is based on folic acid and HyCbl/CyCbl and works differently with MeCbl-AdoCbl and l-methylfolate.

So while I am largely over with what got me started, and the healthiest of my entire life, what remains is far from solved, for me and for others. I like many here found the doctors quite worthless. They wanted to treat symptoms. I wanted to get well. Now I am in need of "the fountain of youth". The last question is asked yet again, "Can entropy be reversed?". Or as the Stones put it "What a drag it is getting old".

Watching the Olympics reminds me of when I used to go blasting off into the air off a mogul on a steep slope. I had a great time.


Aren't we assuming a lot here? For instance where the mercury is, and if the body has control over where it goes. 1mg of mercury in the body doesn't mean 1mg of mercury making contact with 1mg of methlcobalamin.

Keep in mind that we have seen mercury exposure throughout our evolution: I think the body is more equipped to deal with it than we give it credit for.

I make no assumptions about how the body handles mercury versus bismuth or arsenic. I was just comparing two metals that aggressively steal methyl groups to mercury. We have had some very limited exposure to every metal through our evolution and many of them are poisonous. Cobalt is wrapped in a very complex molecular wrapper keeping it from any but very limited contact to our bodies through a very narrowly defined interface. When a person with arsenic in their body is given MeCbl get them out into fresh air as they are exhaling a poison gas, tetramethylarsenate and other poly methyl arsenate gases. It just takes minutes. Bismuth causes damages characteristic of methyltrap and reacts reasonably quickly. Mercury is the one which sits around for years unreacted. As far as other items interacting with it too, sure. Every one of these CSF low cobalamin diseases does somewhat different damage in different parts of the brain and cord and may be dependent up on genes, types of toxins, mix of toxins and multiple deficiency situations in addition to lacking MeCbl and/or AdoCbl. B12 deficiency is not a single thing. Instead there are at least 6 compartments, maybe more that have to be considered just for the two types of active b12s. They together cause over 600 biochemical reactions to go wrong. When those first 600 go wrong, how many others go wrong because of those? This lack affects every part of the body in multiple ways. Mercury doesn't kill or sterilize fast enough in a primitive environment to affect evolution. Mercury is rare in primitive environments and even rarer in enough quantity to kill millions before reproducing. I would like to see any evidence of an evolutionary effect of mercury. None of my inborn folate, carnitine, b12 problems made any difference to my reproductive abilities though in earlier times I might have died for lack of antibiotics. 50% of children die before 5 in very primitive conditions. Life expectancy after that went along very much better. It was a tough culling. That affects evolution. At 66 I'm well past any evolutionary OEM warrantee. That expired for me at age 39, after my 3 children were born.

I wasn't suggesting that b12 would affect folate requirements but rather the opposite. Anyway, our experiences don't align here.

L-methylfolate requires enough b12 or it can cause neurological damage. However, what constitutes enough depends upon what part of the body and whether or not the person in question has a problem getting enough b12 for healing into the CSF. I have to absorb about 30mg a day one way or another to prevent further degeneration of my central neurology. I take 120-150mg a day with mucosal absorption to get enough. I know others that have to do the same. This is based on the Japanese research which turned out to be a pretty good guide with their hypothesis of "upregulation" of CNS neurological healing with high enough doses. Running a series of injection trials with a number of people we verified that there is a threshold of increased CNS healing.

Going from 3mg absorbed a day to 30mg absorbed required no change in l-methylfolate in any of us. Going from 400mcg to 30,000mcg of l-methylfolate did not require any more MeCbl or AdoCbl. SO I am quite unsure of what you are referring to as to requirements. The linkage between quantities of b12 and folate are very loose. If you have something you would like to state explicitly we could certainly discuss it and see what wrinkles can be ironed out.

Original post (of the thread).

I've been called "old school". I don't text. I can't thumb type because of neurological damage.

Ok, I thought it was implied when you said 5-mthf is all that is needed. As I said, I read a post on here saying it was a 'dead-end' folate that couldn't be converted back into others. Is that incorrect?

5-MTHR is all that is needed. It can handle 100% of the body's need for folate. No vegetable folates are needed. So yes, that thing you read is incorrect. You put words into my mouth I did not agree with "you're saying that all other forms of folate have no biological use except to become folate? " Obviously many folks can use them in good health. And of course many other forms of life can use them. I'm sure they are of biological use to the plants that formed them. We are not speaking of an exclusive OR situation here.

You also seem to be a believer in 'the proof is in the pudding' when you cite your having overcome your chronic fatigue.

I have demonstrated in myself and others have demonstrated things in their selves that many pronouncers of theories have declared impossible or just plain wrong. Clearly their theory - hypothesis - model is just plain wrong. And "proofing the pudding" is an ample demonstration that the recipe used works and was done correctly. I have also succeeded in teaching others the recipe. At least in Yoga and science that is a requirement for claiming something new. That I am alive at all much less healthy and recovered from FMS and CFS is ample demonstration. Anybody who doesn't believe me is welcome to come walk 5 miles a day with 2000 feet of vertical drop (around 7200 ft elevation) in each direction 7 days in a row with me. I wouldn't believe that they have CFS/FMS either I suspect that is an impossible task for somebody with CFS and/or FMS. I don't have any of the symptoms left and certainly couldn't be diagnosed with them. I also don't have the symptoms of Congestive Heart Failure any more either. So anybody sufficiently recovered from CHF is also invited. And I haven't had any prescriptions or bought OTC asthma or allergy medications. I don't take 2400mg ibuprofen for out of control inflammation. I don't take Provigil for sleep disorders any more. I don't take Dilantin any more. There are a whole lot of meds I don't take any more and haven't for 10-11 years. Some things didn't heal. I still have pain from being broken in half sideways when a guy ran a red light and t-boned my car. That has been with me for 42 years so far and is likely to stay. Are you recovered enough to walk with me? I'm sure we could have some interesting discussions.
 
Last edited:

shah78

Senior Member
Messages
168
Location
st pete , florida
@Freddd. Thank you for doing what you do!...... I'm not sure I really know what you do(LOL) , but I ( and hundreds of "listeners" out here) TRULY THANK YOU ! It's not said enough. thank you Freddd!....thank you freddd!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Freddd, this conversation inspires me to ask what you've done for metal detox? I've avoided cilantro, DMPS, EDTA, as I may have some amalgam under my crowns. I've been using clay, diatomaceous earth, chlorella. Earlier I took high doses of minerals to help pull toxic metals, but now use theraputic doses only. Thanks, ahmo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd, this conversation inspires me to ask what you've done for metal detox? I've avoided cilantro, DMPS, EDTA, as I may have some amalgam under my crowns. I've been using clay, diatomaceous earth, chlorella. Earlier I took high doses of minerals to help pull toxic metals, but now use theraputic doses only. Thanks, ahmo

Hi Ahmo,

I started selenium about 40 years ago. I started Alpha Lipoic Acid 6 years ago to improve the carnitine/AdoCbl efficiency and later found out some used it for metal "detox". That is it as far as I know. I have a couple of amalgams left They will be replaced in the scheme of things when tooth erosion occurs at the edge. I worked for 20 years with the top dental consultants in the country, the watchers of the watchers as it were, and was getting rid of docs out of plans for doing what they wanted to do to me. I also found the "mercury" docs I saw during my searching for diagnosis years quite unconvincing and couldn't offer anything that could be modeled. I was horridly sick and couldn't take on the burden of more side effects. Not one of them, maybe 6 or 8 in all, was convincing. Also, every DDS mercury doc raised all the red flags of fraud and/or "poor practices", not knowing I was in that business. Some of their offices wouldn't have passed our usual evaluations for professional practices. There wasn't one I found believable. or passed my own "stink" test. I couldn't even convince myself to try any of them while holding my figurative nose. The risk:benefit ratios were all wrong. Most of them wouldn't have treated me anyway by the time I was done asking questions. They were more likely running away from me because I knew all the questions they didn't want to hear..

I was personally more concerned about lead, growing up in the era of lead pain, old houses, lot's of unprotected sanding of lead paint and lot's of painting with lead paints, tetraethyl lead in gasoline. In the absence of specific neurological effects there was no justification for treating it . Now also remember I could see 100% of the data on people so "treated" within the plans I was part of the evaluation team for. It was part of my job to examine anything and everything, and to develop data mining patterns to improve care. There was no significant evidence to be seen of any improvement by secondary measures and in most cases there was no evidence in advance that such treatment could be of help. There was a very high complaint rate. What it did do was very much increase the dollars per hour of chair time. What I didn't know at that time was what that much nitrous oxide exposure would have done to the MeCbl in my brain, oxidized all of it with almost no chance of replacing it. It could have caused even more brain damage. By that time I had already had multiple near death experiences.
 
Messages
70
Hi Forbius,

So how far out of the woods are you with it all? Do you come back here only to help others, or what is left for improvement in your own health?

I don't have fibromyalgia or chronic fatigue any more, or IBS, or asthma, or allergies, or constant nausea or daily vomiting, if IBS, or neuropathic bladder, or any of a couple of hundred symptoms and not for the past 6 years. I don't have muscle atrophy except for my feet. and in some specific areas of neurological damage in my back I don't have congestive heart failure. What I do have is Sub Acute Combined Degeneration, a type of central nerve damage, brain and cord. I have about 70% regression of that and holding. I have the things I started with as a child, problems maintaining adequate folate and an inability to use a lot of veggie folates, low potassium problems that appear to tie into the cyclical paradoxical folate deficiency. I have the same problems getting cobalamin into my brain and keeping it there as is found in CFS, FMS, MS, Parkinson's, ALS, Supra Nuclear Palsy, Autism, Alzheimer's. I have the same need for carnitine I appear to always have had.


So I have all the root causes in place that would bring back all the symptoms and illnesses if I let myself get deficient in them again but I don't have the diseases these deficiencies cause except SACD as that is difficult to heal. It is similar to MS except it is bi-lateral and has a body b12 deficiency.

I was exposed to lots of mercury as a child. I played with it. My father came home after working with it every day as a dentist. How much it caused is difficult to say. For all I know it is an unknown factor in causing SACD as opposed to other things.

It has taken the last 6 years to at least pragmatically solve the paradoxical folate deficiency varieties many of us have. Then the last 6 months there has been more focus on B1, B2 and B3 and how that drives folate and potassium use/loss. It affects me that way too.

Keep at it. I'd be lying if I said I hadn't extracted something useful from the information you've put out.

In a way, we're doing what man did in medicine for most if his history, as 'folk' medicine, the father of modern medicine--self-experimentation and experimentation on others without all the red tape. Sometimes to make strides forward we need to be cut loose from all those rules, ethics--and dogmas.

You also seem to be a believer in 'the proof is in the pudding' when you cite your having overcome your chronic fatigue. I myself have seen a 70% remission in not only my chronic fatigue, but my symptoms of autism and dyspraxia as well, and I've done it by following a very different path to the one you've taken.
I wouldn't be surprised as you have some very different disorders. I've also personally observed some very large changes for some with autism when they utilize all for of the deadlock quartet. I've also watched people very painstakingly undo a few of the hundreds of biochemical problems caused by the deadlock quartet by finding other pathways and undoing specific portions of the problems. Then when the underlying problems are changed some of these come undone. At a very basic level I have had to re-titrate all sorts of vitamins and things at different stages of healing because the things they were based on changed under their feet, as it were.

Is 'deadlock quartet' something you've already covered under a different name, or can you explain it?

I like the 're-titratation' concept, as a way of finding a sweet spot. I've done the same with my own efforts without consciously calling it that.

The whole "theory of vitamins" many people are working on is based on folic acid and HyCbl/CyCbl and works differently with MeCbl-AdoCbl and l-methylfolate.

So while I am largely over with what got me started, and the healthiest of my entire life, what remains is far from solved, for me and for others. I like many here found the doctors quite worthless. They wanted to treat symptoms. I wanted to get well. Now I am in need of "the fountain of youth". The last question is asked yet again, "Can entropy be reversed?". Or as the Stones put it "What a drag it is getting old".

Watching the Olympics reminds me of when I used to go blasting off into the air off a mogul on a steep slope. I had a great time.

I have a mixture of disdain and empathy for doctors. I understand the position they're in, and have gotten over readjusting to the fact that being able to trust them is an illusion. They just don't have the training. It's not in the culture of medicine, although you can find the occasional exceptional doctor who is usually an exceptional human being as well, to help you. Not sure if my current one qualifies.

I'm not sure you'll turn back the clock, but I think you have left a legacy already. Probably not what you wanted to hear though. :p

Aren't we assuming a lot here? For instance where the mercury is, and if the body has control over where it goes. 1mg of mercury in the body doesn't mean 1mg of mercury making contact with 1mg of methlcobalamin.

Keep in mind that we have seen mercury exposure throughout our evolution: I think the body is more equipped to deal with it than we give it credit for.
I make no assumptions about how the body handles mercury versus bismuth or arsenic. I was just comparing two metals that aggressively steal methyl groups to mercury. We have had some very limited exposure to every metal through our evolution and many of them are poisonous.

I think if you trace our evolution to before we left the sea, you'll see (ahem) that the exposure was rather chronic.

Or if that's too far back, we were still a fish-eating apex predator for all the time afterward.

Cobalt is wrapped in a very complex molecular wrapper keeping it from any but very limited contact to our bodies through a very narrowly defined interface. When a person with arsenic in their body is given MeCbl get them out into fresh air as they are exhaling a poison gas, tetramethylarsenate and other poly methyl arsenate gases. It just takes minutes. Bismuth causes damages characteristic of methyltrap and reacts reasonably quickly. Mercury is the one which sits around for years unreacted. As far as other items interacting with it too, sure. Every one of these CSF low cobalamin diseases does somewhat different damage in different parts of the brain and cord and may be dependent up on genes, types of toxins, mix of toxins and multiple deficiency situations in addition to lacking MeCbl and/or AdoCbl.

The gist of what you're saying here seems to be that it's pretty chaotic as there are so many variables to track, rather than having identified some order in the chaos?

B12 deficiency is not a single thing. Instead there are at least 6 compartments, maybe more that have to be considered just for the two types of active b12s. They together cause over 600 biochemical reactions to go wrong. When those first 600 go wrong, how many others go wrong because of those? This lack affects every part of the body in multiple ways.

I think the key to finding order in the chaos is to figure out which are the hubs around which the wheel of metabolism (or metabolic cycles) turn.

Mercury doesn't kill or sterilize fast enough in a primitive environment to affect evolution.

I think you need to use your imagination a bit more. Mercury doesn't have to kill you to remove you from the gene pool--it just has to reduce your mating prospects.

Mercury is rare in primitive environments and even rarer in enough quantity to kill millions before reproducing. I would like to see any evidence of an evolutionary effect of mercury. None of my inborn folate, carnitine, b12 problems made any difference to my reproductive abilities though in earlier times I might have died for lack of antibiotics. 50% of children die before 5 in very primitive conditions. Life expectancy after that went along very much better. It was a tough culling. That affects evolution. At 66 I'm well past any evolutionary OEM warrantee. That expired for me at age 39, after my 3 children were born.

How are your children with all this? Do they exhibit any of your problems? Have you tried helping them with your knowledge? If so, how did they welcome this or not do so?

I should sire a few kids myself sometime. Need to find a woman first, I hear that's how it works...

I wasn't suggesting that b12 would affect folate requirements but rather the opposite. Anyway, our experiences don't align here.
L-methylfolate requires enough b12 or it can cause neurological damage. However, what constitutes enough depends upon what part of the body and whether or not the person in question has a problem getting enough b12 for healing into the CSF. I have to absorb about 30mg a day one way or another to prevent further degeneration of my central neurology. I take 120-150mg a day with mucosal absorption to get enough. I know others that have to do the same. This is based on the Japanese research which turned out to be a pretty good guide with their hypothesis of "upregulation" of CNS neurological healing with high enough doses. Running a series of injection trials with a number of people we verified that there is a threshold of increased CNS healing.

Going from 3mg absorbed a day to 30mg absorbed required no change in l-methylfolate in any of us. Going from 400mcg to 30,000mcg of l-methylfolate did not require any more MeCbl or AdoCbl. SO I am quite unsure of what you are referring to as to requirements. The linkage between quantities of b12 and folate are very loose. If you have something you would like to state explicitly we could certainly discuss it and see what wrinkles can be ironed out.

This is where I close up a bit. I am a sniffer dog on the trail of something crucial, but I want to keep it private for the time being. I am racing very quickly to a full recovery, though, after which I'll be able to say more.


Original post (of the thread).
I've been called "old school". I don't text. I can't thumb type because of neurological damage.

I'm pretty sure abbreviations pre-date texting (certainly a lot of internet-isms, like 'lol' pre-date the kids who are prolific texters). Can old dogs learn new tricks?

Speaking of new tricks--is it possible for you to write shorter paragraphs? I know you don't want to leave any detail out, but it's undigested information that I have to take time to extract the essential point(s) from.

I do have the presence of mind, energy and interest to do it myself though for the time being.

Ok, I thought it was implied when you said 5-mthf is all that is needed. As I said, I read a post on here saying it was a 'dead-end' folate that couldn't be converted back into others. Is that incorrect?
5-MTHR is all that is needed. It can handle 100% of the body's need for folate. No vegetable folates are needed. So yes, that thing you read is incorrect. You put words into my mouth I did not agree with

It's not 'putting words in your mouth' if phrased in the form of a question.

"you're saying that all other forms of folate have no biological use except to become folate? " Obviously many folks can use them in good health. And of course many other forms of life can use them. I'm sure they are of biological use to the plants that formed them. We are not speaking of an exclusive OR situation here.

Ok, so you didn't infer from context that I wanted to know if any of the other sundry forms of folate had a biological role in humans.

You also seem to be a believer in 'the proof is in the pudding' when you cite your having overcome your chronic fatigue.
I have demonstrated in myself and others have demonstrated things in their selves that many pronouncers of theories have declared impossible or just plain wrong. Clearly their theory - hypothesis - model is just plain wrong. And "proofing the pudding" is an ample demonstration that the recipe used works and was done correctly. I have also succeeded in teaching others the recipe. At least in Yoga and science that is a requirement for claiming something new. That I am alive at all much less healthy and recovered from FMS and CFS is ample demonstration. Anybody who doesn't believe me is welcome to come walk 5 miles a day with 2000 feet of vertical drop (around 7200 ft elevation) in each direction 7 days in a row with me. I wouldn't believe that they have CFS/FMS either I suspect that is an impossible task for somebody with CFS and/or FMS. I don't have any of the symptoms left and certainly couldn't be diagnosed with them. I also don't have the symptoms of Congestive Heart Failure any more either. So anybody sufficiently recovered from CHF is also invited. And I haven't had any prescriptions or bought OTC asthma or allergy medications. I don't take 2400mg ibuprofen for out of control inflammation. I don't take Provigil for sleep disorders any more. I don't take Dilantin any more. There are a whole lot of meds I don't take any more and haven't for 10-11 years. Some things didn't heal. I still have pain from being broken in half sideways when a guy ran a red light and t-boned my car. That has been with me for 42 years so far and is likely to stay. Are you recovered enough to walk with me? I'm sure we could have some interesting discussions.

That seems to be what we're doing.
 
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