Poll: Freddd's B-12 Treatment Plan

[Freddd]

HI Leopardtail,

Rich was in the process of moving to mixed Cobalamins (B12) and mixed Folates (B9) when he sadly passed away and his protocol was op top, of other improvements (anti oxidants etc)..

Yes. Rich and I were in ongoing private discussions. He had already posted that 1mg of MeCbl was a "reasonable" dose to change to if the SMP wasn't producing good results within 3 months. He was also giving much consideration to AdoCbl but hadn't reached a dose conclusion as of the last time I spoke with him. He was however moving away from folinic acid until a person had gotten things going and then testing if folinic acid improved, worsened or made no difference.

You could need both Folinic Acid and Methylfolate.

Rich found the pathway that allowed only Methylfolate to be used, since it obviously worked for a lot of us, if enough MeCbl was present. He posted that on the forum here somewhere. So folinic acid is not necessary or sufficient. He was moving away from any suggestion of folinic acid, especially to start with, as it introduces ambiguity in what is occurring since there may be two conflicting reasons why one was having folate insufficiency results with it; either it was working well and was causing donut hole folate insufficiency OR it was blocking methylfolate and causing methylfolate insufficiency symptoms. We were working on a migration pathway from the SMP to a much more complex modified Active B12/folate protocol.


Rich was also looking into BH4 (as am I) and large amounts of Methyl-B9 could indicate the need for BH4. That would mean the need either for BH4 supplementation OR high doses of MethylFolate along with either hydroxocobalamin or very low dose MethylB12 once a day

We hadn't started talking about BH4 at that time. However, low dose MeCbl is an impossibility for any length of time for everybody with low CSF cobalamin, elevated CSF-HCY and elevated CSF-MMA; which is to say FMS, CFS, Parkinson's, ALS, Supra Nuclear Palsy, Autism, Alzheimer's and no doubt a few more; until the problem of transport of cobalamins into the CSF and/or retaining cobalamin in the CSF. With low dose MeCbl I would be in a wheelchair, incontinent, and rapidly deteriorating cognitive abilities, mood and personality. I know. I was there 6 years ago and was able to claw my way back form the precipice. Right now much of the SACD is in remission, holding back at perhaps 6 months from that edge. If anything goes wrong with my MeCbl, my fault, manufacturers fault, nobody's fault, game over for me and quite a few others here, hiding quietly among us. I'm 3 days of high dose high quality MeCbl away from having trouble with word finding and other cognitive issues. If I sip up even a little I know about it fast., I hate it when my bleeding edge symptoms are my brain rotting out. I would rather it be something relatively harmless like IBS or Cheilitis or edema. I need 3 CNS penetrating doses of MeCbl/AdoCbl a day, or at least maintain my serum cobalamin level at an estimated 1000,000 to 200,000 pg/ml. I don't think it is the dose. There are others whose indicators is foot drop, or toe tripping. For me that comes a few days after the cognitive.

Rich was only working on methylation and CFS/FMS/ME. He said that he knew nothing about these other more severe problems and made no pretense of the SMP being suitable for such. SMP makes things dangerously worse for people like me very rapidly. I don't have to take 3 doses if the two are even bigger and longer lasting. But then that probably would defeat the thinking behind a small dose. I have to get 30mg a day absorbed or I have deterioration. I've validated that amount with injections as have others. This is what the Japanese research points at with their 50mg trials.

And the problem is there are a lot more people here in my boat than you, and even they, have any idea about. I wish I could have headed this off in 1978 when I first found the beginning of the answer.


So, do you have suggestions for a workaround.

What would BH4 do for me and those like me, and I am not that unusual here though I was one of the sickest 11 years ago.

 

[zzz0r]

BH4 might worth a try. However the daily ammount of folate needed to be healthy needs to be considered. Also we need to know why we had potassium deffeciency symptoms before cfs kicked in? Did low potassium induced deffeciencies at the other elements of the quartet by disrupting the cycle, or is it the other way arround?

 

[Leopardtail]

HI Leopardtail,

Rich was in the process of moving to mixed Cobalamins (B12) and mixed Folates (B9) when he sadly passed away and his protocol was op top, of other improvements (anti oxidants etc)..

Yes. Rich and I were in ongoing private discussions. He had already posted that 1mg of MeCbl was a "reasonable" dose to change to if the SMP wasn't producing good results within 3 months. He was also giving much consideration to AdoCbl but hadn't reached a dose conclusion as of the last time I spoke with him. He was however moving away from folinic acid until a person had gotten things going and then testing if folinic acid improved, worsened or made no difference.

Given the body use more AdoCbl than MeCbl (and that it requires ATP that is in short supply) I agree completely that Dibencozide is a must for people with ME.

You could need both Folinic Acid and Methylfolate.

Rich found the pathway that allowed only Methylfolate to be used, since it obviously worked for a lot of us, if enough MeCbl was present. He posted that on the forum here somewhere. So folinic acid is not necessary or sufficient. He was moving away from any suggestion of folinic acid, especially to start with, as it introduces ambiguity in what is occurring since there may be two conflicting reasons why one was having folate insufficiency results with it; either it was working well and was causing donut hole folate insufficiency OR it was blocking methylfolate and causing methylfolate insufficiency symptoms. We were working on a migration pathway from the SMP to a much more complex modified Active B12/folate protocol.

Freddd,

with respect to Folinic
Rich assumed that the core problem was Glutathione, and he improved levels substantially thus producing improvements. The core problem in ME may well be many links back in a biochemical chain. The way in which it buggers up Insulin strongly suggests this to be true in at least 20% of ME sufferers.

Bearing in mind this is a CFS/ME site my focus like his is on ME. I did however indicate that you could help more greatly with testing since done we would then know if the core problem is

I agree completely that a more active protocol is needed and know he posted information to that effect. With respect to ME in particular it is about the balance.

Folate Cycle (& Methylation).
While yes Rich's focus was mainly on Methylation (because of Glutathione) the whole Folate cycle matters to good health for other reasons. I am increasingly aware that many people on this site have methylation as a core problem and may required advice tailored to that.

A very small amount of Folinic supports the other pathways that use earlier forms of folate, it also allows native production of 5-MTHF to prevent boom and bust. I would however dose it at seperate times (e.g. when the BH is being increase and in amount at or below 200mcg).

Rich was also looking into BH4 (as am I) and large amounts of Methyl-B9 could indicate the need for BH4. That would mean the need either for BH4 supplementation OR high doses of MethylFolate along with either hydroxocobalamin or very low dose MethylB12 once a day

We hadn't started talking about BH4 at that time. However, low dose MeCbl is an impossibility for any length of time for everybody with low CSF cobalamin, With low dose MeCbl I would be in a wheelchair, incontinent, and rapidly deteriorating cognitive abilities, mood and personality.

with respect to BH4
If deficient this can seriously bugger up Neurotransmitter synthesis cause disruption to NO and high levels of both Superoxide and Peroxynitrate with all the damage and Methyl demands they create.

Rich has discussed BH4 and the intent to investigate this with others (including here on Phoenix).

BH4 can be supplemented (or produced) once daily, it's not a constant requirement as per methylation. Hence if one has both problems using high dose Folate + minimal cobalamin x1 daily bumps up the BH4. This process is preferred only with very high MethylFolate or low MeCbl.
The other recommendations (Vit C etc) are to better sustain the BH4.

Rich was only working on methylation and CFS/FMS/ME. He said that he knew nothing about these other more severe problems and made no pretense of the SMP being suitable for such. SMP makes things dangerously worse for people like me very rapidly. I don't have to take 3 doses if the two are even bigger and longer lasting. But then that probably would defeat the thinking behind a small dose. I have to get 30mg a day absorbed or I have deterioration. I've validated that amount with injections as have others. This is what the Japanese research points at with their 50mg trials.

So, do you have suggestions for a workaround.

What would BH4 do for me and those like me, and I am not that unusual here though I was one of the sickest 11 years ago.

with respect to Cobalamin

It's being reduced only once daily. I agree that sustaining a tiny amount of Cobalamin all day every day not permit increased methylation.
I agree also that MeFolate + MeCbl is needed to produce methylation and that its important.

Doing for BH4 at one time, and methylation at one or more others is a possibly workaround (a number of people on Phoenix have done this successfully).

I understand also that form some people very high doses of MeCbl are needed. I also understand that you are an authority on Mercury Poisoning.

 

[Freddd]

Given the body use more AdoCbl than MeCbl (and that it requires ATP that is in short supply) I agree completely that Dibencozide is a must for people with ME.


Freddd,

with respect to Folinic
Rich assumed that the core problem was Glutathione, and he improved levels substantially producing improvements. The core problem in ME may well be many links back in a biochemical chain. The way in which it buggers up Insulin strongly suggests this to be true in at least 20% of ME sufferers.

Bearing in mind this is a CFS/ME site my focus like his is on ME. I did however indicate that you could help more greatly with testing since done we would then know if the core problem is

I agree completely that a more active protocol is needed and know he posted information to that effect. With respect to ME in particular it is about the balance.

Folate Cycle (& Methylation).
While yes Rich's focus was mainly on Methylation (because of Glutathione) the whole Folate cycle matters to good health for other reasons. I am increasingly aware that many people on this site have methylation as their core problem

A very small amount of Folinic supports the other pathways that use earlier forms of folate, it also allows native production of 5-MTHF to prevent boom and bust. I would however dose it at seperate times (e.g. when the BH is being increase and in amount at or below 200mcg).



with respect to BH4
If deficient this can seriously bugger up Neurotransmitter synthesis cause disruption to NO and high levels of both Superoxide and Peroxynitrate with all the damage and Methyl demands they create.

Rich has discussed BH4 and the intent to investigate this with others (including here on Phoenix).

BH4 can be supplemented (or produced) once daily, it's not a constant requirement as per methylation. Hence if one has both problems using high dose Folate + minimal cobalamin x1 daily bumps up the BH4. This process is preferred only with very high MethylFolate or low MeCbl.
The other recommendations (Vit C etc) are to better sustain the BH4.




with respect to Cobalamin

It's being reduced only once daily. I agree that sustaining a tiny amount of Cobalamin all day every day not permit increased methylation.
I agree also that MeFolate + MeCbl is needed to produce methylation and that its important.

Doing for BH4 at one time, and methylation at one or more others is a possibly workaround (a number of people on Phoenix have done this successfully).

I understand also that form some people very high doses of MeCbl are needed. I also understand that you are an authority on Mercury Poisoning.

with respect to BH4If deficient this can seriously bugger up Neurotransmitter synthesis cause disruption to NO and high levels of both Superoxide and Peroxynitrate with all the damage and Methyl demands they create.
Carmen Wheatley speaks of this, "Superoxide and Peroxynitrate " in the Gorilla paper, that HyCbl doesn't deal with these and that AdoCbl does and shows how BH4 fits in.

I also understand that you are an authority on Mercury Poisoning

I wouldn't say that. I read all the papers I could find that were relevant and built a pharmacodynamics model. With my background of exposure I was concerned. My father is in advanced Alzheimer's care and was a dentist when they kneaded the amalgam by hand after the initial machine mix and when just the right texture put it in place. I played with it as a kid and he was no doubt contaminated every night coming home from work. It was a favorite theory of dozens of the more than 100 practitioners I went to try to get a diagnosis over a couple of decades. I was told all sorts of completely non-predictive of any results theories. 100% of them of all types failed completely to diagnose of treat me. at an out of pocket cost of about $200,000 as I was a self pay etc. since the car wreck injuries made be "uninsurable". The model was based on monomethylmercury and it's excretion of the body on one end and the input end was the methylation by MeCbl on the other.

There is an example of rapid forced "methyl stealing" by arsenic. Somebody with arsenic who takes some quantity of MeCbl will be exhaling any of several polymethyl arsenates within an hour with a smell like garlic, just like moldy old Paris Green wallpaper and arsenic treated lumber. While mercury, a rapid reactor with methylcobalamin in vitro, is at most a poor and slow reactor in vivo. As 98-99% of B12 is excreted unchanged by the kidneys within 1-2 days there is a upper limit to how much MeCbl could have reacted with mercury. Further with the vast difference in molecular mass, it takes 7mg of MeCbl to provide methyl groups to 1 mg of mercury (approx). It is estimated that the total mass of MeCbl in the human body is 2.5 to 5 mg. The nonsupplementing person has about 5 to 10 mcg of MeCbl circulation in their serum at any given time. It takes approximately 30mg of monomethylmercury in a body to cause the beginning of perceptible symptoms (accidental poisonings). Hooking those two together indicates a topping out of monomethylmercury on the order of 1mg after 2 years (10 serum halflifes of monomethylmercury) as it is excreted at about 1% per day in the bile.

I was hearing all sorts of nonsense from these mercury practitioners. . If the mythological rate of, 100% to 1000% of injected MeCbl actually did react at that rate the person would basically go into methyltrap in hours, just as glutathione, N2O and cyanide and arsenic could do if the person lived long enough. N2O doesn't react as quickly as the others. Instead, people with lots of mercury contamination have lots of symptoms with 80% of the symptoms being those of b12 deficiency, partial methylation block, not methyltrap. Mercury likely would be as quickly fatal as arsenic and cyanide. There would also be a whole lot more monomethylmercury in the feces. I agree with Dr. Cutler, mercury, if it is reactive at all with MeCbl in vivo, it is at a very slow rate. If it was so terribly reactive giving MeCbl would not be able to quickly remove the partial methylation block. It would put a person into methyltrap just about upon contamination. It doesn't. Monomethylmercury has distinct symptoms different from mercury poisoning. There is not a dentist at practice in that would survived very long prior to recent times. Secondhand N2O on the other hand can cause considerable damage to the dentist and staff. I spent decades consulting with these folks and had an uncle who was a dentist who developed Parkinson's in his 70s and died at 80 something, another uncle who was an attorney who developed early onset Alzheimer's and Parkinson's at 60 and died by 65 and a father (dentist until early 70s) who has Alzheimer's in his mid 80s. They were brothers and died in birth order. Dentists commit suicide (depression) a lot more than some other medical fields and that is constant with partial methylation block.

 

[Leopardtail]

with respect to BH4If deficient this can seriously bugger up Neurotransmitter synthesis cause disruption to NO and high levels of both Superoxide and Peroxynitrate with all the damage and Methyl demands they create.
Carmen Wheatley speaks of this, "Superoxide and Peroxynitrate " in the Gorilla paper, that HyCbl doesn't deal with these and that AdoCbl does and shows how BH4 fits in.

Yes I am aware of the paper Freddd, I am compiling some questions for Carmen about it. AdoCbl would not (to my knowledge) interfere with that backward reaction hence the AdoCbl we both use is not likely to prevent BH4 generation where it's needed.

Thanks for the tip though, as every you are right on the ball with AdoCbl.

 

[Little Bluestem]

Be sure of your sources. There are useful and useless forms of MethylFolate make sure you are taking pure active ones.

@Leopardtail
Argh! I thought all MethylFolate was good. What are the useful and useless forms?

 

[ahmo]

@Little Bluestem, Here you go. I was just reviewing this yesterday. From Dr. Ben Lynch.
http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/
"L-Methylfolate, Methylfolate, 5-MTHF, L-5-MTHF. What is the Difference!?"

You know, you don't throw a whole life away just 'cause he's banged up a little.

 

[edwinl]

Dear Fredd and all contributors to this forum. (forgive me if this is the wrong way to post, I am new here)

I came here trough a simple Google search: Tongue and Leg Burning ….. started reading and reading learning about the illness that a lot of us share.

My story is similar to a lot of others on this blog:

I have horrible burning sensations on my back, legs, left arm, neck, tongue and dizziness since more than a year. Woke up one morning and "It" was there, no prior injuries or illnesses. I have no numbness, some fatigue.

Had every test done there is incl. MRIs (Brain, CV Spine, Spine), CTs, EEG, EMG, Ultra Sounds (Brain Blood Flow), Lumbar Puncture, 100+ Blood Tests etc. etc. Saw 2 different Neurologists, a Neurosurgeon, Allergy Doctor and doctors practicing alternative medicine. All of them spend a lot of time with me but found nothing. I am 49 year old male. Clean Bill of health other than this. Neurologist gave me Gabapentin to smooth the symptoms. Didn’t work but helped me sleep.

Reading Fredd’s dossiers I started immediately on 5g Jarrow Methyl B12, 3g Country Life Active B12 and Solgar Folate 800 mcg. I had no side effects from the beginning, good news. Doubled my dose after one week. 3 weeks later I feel my symptoms getting weaker for the first time. 5 months down the road my symptoms weakened by 80%. Some ups and downs but mainly getting better.

I had 2 questions:

A) My face, neck and left arm are still burning, therefor I want to add Carnitine as well. Is there a particular brand I should get?


B) What would be the maximum daily dose of:

1. Methyl B12

2. Active B12 Dibencozide

3. Folate

4. Carnitine

….. considering that I had no side effects so far on high dosages.

Any comment is highly appreciated. Thank you so much in advance.

 

[Freddd]

Dear Fredd and all contributors to this forum. (forgive me if this is the wrong way to post, I am new here)

I came here trough a simple Google search: Tongue and Leg Burning ….. started reading and reading learning about the illness that a lot of us share.

My story is similar to a lot of others on this blog:

I have horrible burning sensations on my back, legs, left arm, neck, tongue and dizziness since more than a year. Woke up one morning and "It" was there, no prior injuries or illnesses. I have no numbness, some fatigue.

Had every test done there is incl. MRIs (Brain, CV Spine, Spine), CTs, EEG, EMG, Ultra Sounds (Brain Blood Flow), Lumbar Puncture, 100+ Blood Tests etc. etc. Saw 2 different Neurologists, a Neurosurgeon, Allergy Doctor and doctors practicing alternative medicine. All of them spend a lot of time with me but found nothing. I am 49 year old male. Clean Bill of health other than this. Neurologist gave me Gabapentin to smooth the symptoms. Didn’t work but helped me sleep.

Reading Fredd’s dossiers I started immediately on 5g Jarrow Methyl B12, 3g Country Life Active B12 and Solgar Folate 800 mcg. I had no side effects from the beginning, good news. Doubled my dose after one week. 3 weeks later I feel my symptoms getting weaker for the first time. 5 months down the road my symptoms weakened by 80%. Some ups and downs but mainly getting better.

I had 2 questions:

A) My face, neck and left arm are still burning, therefor I want to add Carnitine as well. Is there a particular brand I should get?


B) What would be the maximum daily dose of:

1. Methyl B12

2. Active B12 Dibencozide

3. Folate

4. Carnitine

….. considering that I had no side effects so far on high dosages.

Any comment is highly appreciated. Thank you so much in advance.

Hi Edwinl,

Welcome aboard. Sounds like you are off to a decent start with a lot of reduction of symptoms. Let's continue that and improve. I would like to offer some suggestions for getting the most bang for your buck out of the supplements which also amounts to getting better results.

First, I would like to say so much of this is about a balance of nutrients. Every single vitamin and mineral is a critical factor in all sorts of processes in out body. To actually be able to heal, everything necessary must be present when needed. I had been on the basics for decades before finding the active vitamins. But I strongly feel that these basics are foundational to being able to heal. I like to see people get everything needed all lined up and ready to go. So a low dose B-complex suitable for twice a day use without folic or folinic acid and without CyCbl is needed. A, C, D, E, magnesium, zinc, calcium, selenium, chromium, trace minerals, lecithin (or variants), omega3 oils are all needed before starting the active b12 and folate. Any one or 10 or all of them can prevent them from being effective.

A maximum of 30-40mg a day of B1 and B2, 100mg/day of B3 appears quite sufficient for most,. More can cause all sorts of problems in potassium and methylfolate usage.

Then there are different forms of things; carnitine is a good example of that. In the general world ALCAR is the hot form. However, for those of us with a specific (genetic? cause) have to have l-carnitine fumarate (the actual fat transporting form, about 90%) or ALCAR (about 10%) and the other doesn't work well. A combination of 4 forms, of 2 forms or the wrong form didn't work at all for me. The Jarrow freebase liquid carnitine seems to work well for most. The one thing about the various effective brands is that they tend to be the Sigma Tau manufactured carnitine regardless of the marketing brand. If anxiety is present the Jarro Liquid carnitine is the easiest to do a precise microtitration with.

In this world where brands and generics are supposed to be the same, I find tremendous difference in many things. Some generic prescriptions I take are superior to other generics or brands, for me. There are some everybody complains about.. The vitamins are just like that. So it was a real surprise to me that there was so much difference between brands of nutrients. SO pay attention for yourself as well.

Methylcobalamin, MeCbl. I find two brands are a lot more effective than any other brands I have tested. Currently these two 5 star brands are Enzymatic Therapy B12 infusion and Country Life Methyl B12 5mg product 6304 (not their other similar products). Unfortunately the Jarrow brand of MeCbl ceased being effective about 18 months ago for me and many others. I had a major setback caught unawares by the changed Jarrow and could only recover by changing brands to entirely ENZY.

Right now I would consider the Anabols Natural Dibencoplex to be the best AdoCbl I have tried to date. It's in the middle of a transition from capsule to tablet but is still fine according to the reports I've had so far.

The Country Life 3 mg I can't suggest at all since it has folic acid in it that visibly decreases the b12 serum halflife and appears to block methylfolate.

The Jarrow and Country life b12 suggestions are years old and out of date and have fallen by the way side as far better products are currently available.

Taking more of these inferior products doesn't make up the difference.

So, The question is what to do now. My answer is to start over. The doses you took of the previous items are not predictive of what will be effective of these more effective products.


I have started over many times when I think products have changed or because of lack of effectiveness or something changes.

A good start over point that I might use in your situation looks something like this.

1 - 1mg of ENZY or 1/4 of a Country Life 5mg MeCbl, and 1/4 of an Anabol Naturals Dibencoplex Capsule or tablet, both held between cheek and gum for up to two hours to maximize absorption. It takes some practice. Longer contact to skin means more absorbed.

2 - L-methylfolate, Metafolin is the one I've used and tested. I will be testing the new variety, Quatrefolic soon and have heard only good things about it. For starters, 400mcg twice a day (half a tablet twice a day) is a good place to start for many.

For getting started, in order to have a standardized situation which limits the variations and allows more definite ideas about what it is going on, I would suggest getting rid of all folic acid and folinic acid, NAC and glutathione from my diet (energy drinks, vitamin bars, vitamin cereals, other supplements with folic and folinic acid). That limits the number of things that might happen. Later after healing is going well is the time to experiment if you want to add these things in, then you can know if they help or hinder or do nothing noticeable.

After starting the basics and then the 3 active b12/folate items frequently, on the third day a person feels worse. There are a whole lot of low potassium symptoms that may occur and need correction with potassium. Some of these can be dangerous and even fatal. People have gotten in trouble by calling them "detox" and ending up in the ER. The other very frequent item called "detox" is an induced "donut hole" paradoxical folate deficiency. The body starts healing with b12/folate by layers. One payer can be supplied very well and others can have deficiency symptoms all at the same time. The speak of the bodies ability to triage the areas and apply enough of these scarce resources to heal while depriving other areas so as to be able to do so. A person than can increase the l-methylfolate to the point that all the folate insufficiency symptoms go away. Timing, ie 4 doses a day for both L-methylfolate and potassium can work far better than 1 or 2 doses per day. Also, potassium interferes with methylfolate being absorbed so they need to be taken separately.

In addition, the B12s start up neurological processes in damaged nerves. At it's simplest, there is an artifact of all sensory things brightening. One is more aware of light, color, hearing, taste, smelling, damaged nerves, pains, tight muscles, everything, as if new all over again and not fatigued into oblivion. Write down all this stuff. It's a lot of the things that have room for healing and improvement. It too will fade and become less obvious again. People with no deficiency symptoms have no change. In people with certain types of nerve damage in the brain there are strong emotional and personality changes. These usually are even more profoundly affected by carnitine.

After potassium and methylfolate get balanced out, then carnitine can be titrated. If anxiety is present and especially if worsened by the initial "brightening", then a very careful microtitration would likely be in order. There are more and more reports of success from people doing this, that they have gotten through the micro part without out of control and intolerable anxiety and other mood changes and are able to titrate to body effective levels of carnitine, still more slowly than many need. I didn't have that anxiety effect. Instead I had depression start lifting in hours and felt reasonably euphoric despite the increased pain. Having 50 years of biological depression lift off is really quite wonderful. As the nerves remyelinate , they can be painful. They tend to go through all the pains and feelings they had breaking down in reverse order and 10-100 times faster. These are all flags of healing, not things to be avoided as then healing of the nerves is prevented.

Then comes the next chapter, adding the other critical cofactors and balancing things out on a targeted basis.

 

[SJB944]

Fred,

As you know I have had some success titrating l-carnitine in micro amounts. When I first tried the protocol over 3 years ago I had start up with MB12 and ADB12 and Methylfolate but hit all sorts of all walls very quickly. I was taking most of the basics but this seemed to muddy the picture somewhat -- I spent close to 3 years chasing dead ends, but in the process have learnt useful information about what causes what in my body.

The body changes however, and it seems once you get the Quartet in it's like you are starting from scratch again, to some extent.

So this time, I have started with only very limited basics -- those things that I know what impact they have on my body -- and I am slowly introducing them after getting in the quartet. I should note, I am still in the early stages of micro titration of l-carnitine, but this is the first time I have been able to get it in and get any benefit.

This time I stopped taking everything, and then just started MB12 until I induced methylfolate insufficiency, because I needed to see a clear picture, to be certain my symptoms fitted the right analysis, then I have taken it from there.

So I would so go for the general first -- get all the basics in before the quartet -- but if the picture is so muddied that you can't move forward then it gets more complicated and you have to try and simplify,

I speak as someone very much in the process, not at the end!

 

[Freddd]

Fred,

As you know I have had some success titrating l-carnitine in micro amounts. When I first tried the protocol over 3 years ago I had start up with MB12 and ADB12 and Methylfolate but hit all sorts of all walls very quickly. I was taking most of the basics but this seemed to muddy the picture somewhat -- I spent close to 3 years chasing dead ends, but in the process have learnt useful information about what causes what in my body.

The body changes however, and it seems once you get the Quartet in it's like you are starting from scratch again, to some extent.

So this time, I have started with only very limited basics -- those things that I know what impact they have on my body -- and I am slowly introducing them after getting in the quartet. I should note, I am still in the early stages of micro titration of l-carnitine, but this is the first time I have been able to get it in and get any benefit.

This time I stopped taking everything, and then just started MB12 until I induced methylfolate insufficiency, because I needed to see a clear picture, to be certain my symptoms fitted the right an analysis, then I have taken it form there.

So I would so go for the general first -- get all the basics in before the quartet -- but if the picture is so muddied that you can't move forward then it gets more complicated and you have to try and simplify,

I speak as someone very much in the process, not at the end!

Hi SJB,

Excellent. It's difficult, It's complex It is very much a learning experience; learning ones own responses to dozens of things in mutual response to each other. Every time it got too complex to figure out, I had to make it simpler until getting it under control and then rebuild from the base again, and again, and again ...


You know, 6 years ago I thought it was largely CyCbl problems and I had it pragmatically, except for still missing "x". Then "x" turned out to be the whole set of paradoxical folate deficiency complications, and B1 and B2 and B3 and now the difficulties and complications of managing potassium that "should" be so simple and automatic but so clearly isn't. My working hypothesis has changed and changed again, the pragmatically learned remains predictive and workable and expanded upon with several more layers. You are so right; the deadlock quartet, the base, was the easy part, then it got complicated. There are dozens of wrong and/or misleading hypotheses for each one that will prove to be correct in the end. Eliminate the hypotheses who's predications don't match what happens, no matter how attractive they otherwise appear. They lead to dead ends and leave one dangling in the wind.

It is a process.

 

[Leopardtail]

@Leopardtail
Argh! I thought all MethylFolate was good. What are the useful and useless forms?

It's kinda nuts, but it's about how the chemicals in it are 'joined together'. If done right it's all usable, if done wrong only partially effective.

There are only two companies that make 'the good stuff' they both use several names. You have to look in the ingredients to see which form they use.

Good Forms
Names starting L-5-
Names starting 6(S)-L-
L-Methylfolate Calcium
Metafolin
Levomefolic Acid

 

[mgd1972]

First, I would like to say so much of this is about a balance of nutrients. Every single vitamin and mineral is a critical factor in all sorts of processes in out body. To actually be able to heal, everything necessary must be present when needed. I had been on the basics for decades before finding the active vitamins. But I strongly feel that these basics are foundational to being able to heal. I like to see people get everything needed all lined up and ready to go. So a low dose B-complex suitable for twice a day use without folic or folinic acid and without CyCbl is needed. A, C, D, E, magnesium, zinc, calcium, selenium, chromium, trace minerals, lecithin (or variants), omega3 oils are all needed before starting the active b12 and folate. Any one or 10 or all of them can prevent them from being effective.

A maximum of 30-40mg a day of B1 and B2, 100mg/day of B3 appears quite sufficient for most,. More can cause all sorts of problems in potassium and methylfolate usage.

Then there are different forms of things; carnitine is a good example of that. In the general world ALCAR is the hot form. However, for those of us with a specific (genetic? cause) have to have l-carnitine fumarate (the actual fat transporting form, about 90%) or ALCAR (about 10%) and the other doesn't work well. A combination of 4 forms, of 2 forms or the wrong form didn't work at all for me. The Jarrow freebase liquid carnitine seems to work well for most. The one thing about the various effective brands is that they tend to be the Sigma Tau manufactured carnitine regardless of the marketing brand. If anxiety is present the Jarro Liquid carnitine is the easiest to do a precise microtitration with.

In this world where brands and generics are supposed to be the same, I find tremendous difference in many things. Some generic prescriptions I take are superior to other generics or brands, for me. There are some everybody complains about.. The vitamins are just like that. So it was a real surprise to me that there was so much difference between brands of nutrients. SO pay attention for yourself as well.

Methylcobalamin, MeCbl. I find two brands are a lot more effective than any other brands I have tested. Currently these two 5 star brands are Enzymatic Therapy B12 infusion and Country Life Methyl B12 5mg product 6304 (not their other similar products). Unfortunately the Jarrow brand of MeCbl ceased being effective about 18 months ago for me and many others. I had a major setback caught unawares by the changed Jarrow and could only recover by changing brands to entirely ENZY.

Right now I would consider the Anabols Natural Dibencoplex to be the best AdoCbl I have tried to date. It's in the middle of a transition from capsule to tablet but is still fine according to the reports I've had so far.

...

1 - 1mg of ENZY or 1/4 of a Country Life 5mg MeCbl, and 1/4 of an Anabol Naturals Dibencoplex Capsule or tablet, both held between cheek and gum for up to two hours to maximize absorption. It takes some practice. Longer contact to skin means more absorbed.

2 - L-methylfolate, Metafolin is the one I've used and tested. I will be testing the new variety, Quatrefolic soon and have heard only good things about it. For starters, 400mcg twice a day (half a tablet twice a day) is a good place to start for many.

For getting started, in order to have a standardized situation which limits the variations and allows more definite ideas about what it is going on, I would suggest getting rid of all folic acid and folinic acid, NAC and glutathione from my diet (energy drinks, vitamin bars, vitamin cereals, other supplements with folic and folinic acid). That limits the number of things that might happen. Later after healing is going well is the time to experiment if you want to add these things in, then you can know if they help or hinder or do nothing noticeable.

After starting the basics and then the 3 active b12/folate items frequently, on the third day a person feels worse. There are a whole lot of low potassium symptoms that may occur and need correction with potassium. Some of these can be dangerous and even fatal. People have gotten in trouble by calling them "detox" and ending up in the ER. The other very frequent item called "detox" is an induced "donut hole" paradoxical folate deficiency. The body starts healing with b12/folate by layers. One payer can be supplied very well and others can have deficiency symptoms all at the same time. The speak of the bodies ability to triage the areas and apply enough of these scarce resources to heal while depriving other areas so as to be able to do so. A person than can increase the l-methylfolate to the point that all the folate insufficiency symptoms go away. Timing, ie 4 doses a day for both L-methylfolate and potassium can work far better than 1 or 2 doses per day. Also, potassium interferes with methylfolate being absorbed so they need to be taken separately.

In addition, the B12s start up neurological processes in damaged nerves. At it's simplest, there is an artifact of all sensory things brightening. One is more aware of light, color, hearing, taste, smelling, damaged nerves, pains, tight muscles, everything, as if new all over again and not fatigued into oblivion. Write down all this stuff. It's a lot of the things that have room for healing and improvement. It too will fade and become less obvious again. People with no deficiency symptoms have no change. In people with certain types of nerve damage in the brain there are strong emotional and personality changes. These usually are even more profoundly affected by carnitine.

After potassium and methylfolate get balanced out, then carnitine can be titrated. If anxiety is present and especially if worsened by the initial "brightening", then a very careful microtitration would likely be in order. There are more and more reports of success from people doing this, that they have gotten through the micro part without out of control and intolerable anxiety and other mood changes and are able to titrate to body effective levels of carnitine, still more slowly than many need. I didn't have that anxiety effect. Instead I had depression start lifting in hours and felt reasonably euphoric despite the increased pain. Having 50 years of biological depression lift off is really quite wonderful. As the nerves remyelinate , they can be painful. They tend to go through all the pains and feelings they had breaking down in reverse order and 10-100 times faster. These are all flags of healing, not things to be avoided as then healing of the nerves is prevented.

Then comes the next chapter, adding the other critical cofactors and balancing things out on a targeted basis.

This is a useful, up to date summary of Freddd's protocol for us newbies. thanks! Can anyone tell me how I post this to the Active b12 Basics thread?

 

[mgd1972]

@Freddd another newbie question... can you take too much Methylfolate at the beginning? I.e. is it okay to start at 800 mcg twice a day or will that lead to misery? I guess I'm not keen on experiencing the donut hole so hoping to head it off at the pass. Is that unrealistic? Same question goes for potassium, really. Thanks again.

 

[Meggie]

@Freddd
Hi Freddd. This is my first post although I have been lurking for an unconscionable amount of time. I am sincerely hoping you might provide your insight on my situation. I'm not certain what may be of significance so I've included what may seemingly be of importance.
BACKGROUND
. Rickets as a child
. Very ill when pregnant. Progressively worse with each of 3 successful pregnancies. Had I had a 4th child bed rest
for entire pregnancy likely. No diagnosis as to cause.
. Bruise very easily
. Developed an allergy to the sun apx 10 years ago. After 1-2 days of exposure to heat from sun I develop itchy
hives.
. High stress career
. Husband died suddenly in 1998
. It is worth noting I have almost no physical symptoms/pain
. Loss of orgasmic ability/intensity
ILLNESS
. I started to get ill in 2002. Morning nausea, anxiety, fatigue, exercise intolerance, brain fog.
. At first I thought it was hormones, then thyroid, then adrenal fatigue, then food sensitivities. I followed up with
each doctor recommended course of action, without improvement.
. In 2010 I did urine/blood tests which showed my MMA (methamalonic acid) was extremely high. My health care
provider immediately ordered a fecal test for gluten sensitivity. This fecal test demonstrated an extreme gluten
sensitivity. I immediately stopped consuming gluten and began taking methylcobalamin sublingually. Within 1
Week I felt better than I had in years. The nausea disappeared, excess weight simply fell off, I was clear minded
and had a tremendous amount of energy. I though I had it figured out!!! After 9 months of health my symptoms
gradually returned and began to worsen.
. In 2012 I had to leave my career. Although I had a desk
job I, like you, earned my living with my mind. At the time I left my employment I was constantly exhausted
and my cognitive abilities were impaired to the point where I felt like I had Alzheimer's- it was like a veil
between my thoughts and my processing- the word or thought would be there but just out of my reach.
My short term memory and organizational abilities were severely effected. I'd lost my executive functions and
lived in constant fear I would forget or overlook something critical.
. All standard tests (with the exception of MMA) have been unremarkable. Blood work, including B12 fine.
H pylori breath test fine. Gastroscopy fine. Stomach ultrasound fine. Brain scan fine.
. It has been almost 2 years since I left my job. I live a "small", unstressful life.
. 1 year after leaving my job I was worse than the day I left. In an effort to give credence to the way I was (am)
feeling I began to research with the only thing I knew for certain-that at one point my MMA was extraordinarily
high. This research lead to CFS and the work of Rich Van Konynenburg. For 8 months I religiously followed
Rich's SMP. I saw gradual but steady improvement in energy but no noticeable improvement in my cognitive
functions. After 8 months, and really overdoing it over Christmas, I started to deteriorate and the fatigue
returned to pre-SMP levels. I then added SAM-e thinking perhaps that was the crucial co-factor I was missing.
Apparently it isn't.
. I am now back to extreme fatigue, exertion intolerance, nausea, cognitive dysfunction, anxiety and weight gain.
Luckily I still do not have any significant physical symptoms.
ASSISTANCE
. I have studied your methylation protocol and have ordered the recommended "Deadlock Quartet" supplements.
I was wondering and hoping, based on the information provided above, whether you might be able to offer any insight. I am particularly interested in which of the Deadlock Quartet you think might be in play and which co-factors you think might need to be addressed. Anything you can comment on would be greatly appreciated. Thank you so much Freddd.

 

[Meggie]

Sorry, my previous post was meant to be addressed not exclusively to Freddd, but to anyone who might have anything to offer.

 

[knackers323]

Sorry, my previous post was meant to be addressed not exclusively to Freddd, but to anyone who might have anything to offer.

Hi Meggie what is the relationship between gluten intolerance and B12 levels? Thanks

 

[Meggie]

B12 is one of the common nutrient deficiencies associated with gluten intolerance. Gluten intolerance can slow down the ability for your body to transport B12 to your intestines. Absorption thus becomes an issue. At the high of my Gluten intolerance I was suffering many B12 deficiency symtopms including electrical "zaps" in my extremities.

 

[Meggie]

@Freddd
I started protocol yesterday. As per your advice I am holding off on introducing LCF. Within 15 hours of taking 100 mcg of Adocbl, 100 mcg of Mecbl and 200 mcg of L-methylfolate I had symptoms of potassium deficiency ( quite severe cramping in calves. It is a strange feeling- not like a normal cramp!). I had taken 300mg of potassium about 3 hours before cramping started. I did get up from bed and took additional 300 mg of potassium which calmed cramping. I am wondering whether it is unusual to get a reaction so quickly and if, in your experience, the quickness of it is indicative of any thing in particular?

 

[Radio]

This is one of missing links in the chain to recovery...


How-I-Recovered-From-CFS-part-2
http://forums.phoenixrising.me/index.php?threads/how-i-recovered-from-cfs-part-2.28684/