B-12 - The Hidden Story

[Freddd]

I have an update on my post glutathione precursor experience. I am now about 1 year post glut trial. I tried to reduce to 3200mcg of methylfolate as 800mcg had previously been effective. I moved that back up to 4000mcg but not enough in time to stop the development of angular chelitis which is my hallmark folate deficiency symptom that is always on the pivot point. I have gone back to 4800mcg daily but in a slightly different configuation. I am now taking 800mcg with my morning premeal items such as SAM-e and l-carnitine fumarate. I'm also taking 800mcg at bedtime with my bedtime injection. The rest I am still taking in 2 batches with mealtime vitamins.

I have found another apparant frequency or halflife effect. The angular chelitis is again in full retreat and suddenly my feet are regaining feeling by leaps and bounds. They are now, a full year downstream from the glut trial, back to where they were before the trial with the numbness retreating rapidly. Taking the two additional doses daily but to the same total appears much more effective and appears to make the mb12 more effective. The serum half life of Metafolin is about 3 hours. So even 6 hour intervals allows 2 half life periods between doses. So maybe this is the next step I've been looking for, to notch the healing up another step.

If anybody else tries this I would really like to hear about it.

 

[Sunday]

I was very interested to hear this as I'd just decided to split my mb12 dose; I've just gone from 5mg to 10mg and noticed I was much less hard hit if I took the mb12s sequentially, instead of all at once. I'd also say that for me your theory of decreasing effects holds true: the little increases I did at first affected me much more than this big increase does at this point. Not to say that the big increase has not affected me: I'm wavering on my feet and in my mind. I've been pretty much bedbound for the last 4 days, since I started it. But I've known a lot worse than this on mb12 and off.

Maybe for my next dose increase I will not increase the metafolin, but try splitting the dosage and see what the effects are. If I do this, I'll report back. I'll have to get stabilized from the mb12 dose uppage first, though, or I don't think I'll be able to tell what's going on.

Interesting to hear about metafolin half-life and even better to hear about the gains for your feet, which seem to be one of your most persistent problems. Congratulations! Progress! We all like to hear about that.

 

[Freddd]

I was very interested to hear this as I'd just decided to split my mb12 dose; I've just gone from 5mg to 10mg and noticed I was much less hard hit if I took the mb12s sequentially, instead of all at once. I'd also say that for me your theory of decreasing effects holds true: the little increases I did at first affected me much more than this big increase does at this point. Not to say that the big increase has not affected me: I'm wavering on my feet and in my mind. I've been pretty much bedbound for the last 4 days, since I started it. But I've known a lot worse than this on mb12 and off.

Maybe for my next dose increase I will not increase the metafolin, but try splitting the dosage and see what the effects are. If I do this, I'll report back. I'll have to get stabilized from the mb12 dose uppage first, though, or I don't think I'll be able to tell what's going on.

Interesting to hear about metafolin half-life and even better to hear about the gains for your feet, which seem to be one of your most persistent problems. Congratulations! Progress! We all like to hear about that.

Hi Sunday,

Interesting to hear about metafolin half-life and even better to hear about the gains for your feet, which seem to be one of your most persistent problems.

There are now times when my left foot feels almost normal. Both feet started going numb around 1992 with my right foot always a little ahead of my left foot in that. Now both feet are about back to where they were in 1995. The numbness hit about 4-5 years into the total crash. As it is deep damage, in the spinal cord, it gets less b12 less easily. If there is some "permanent" damage, this is likely it. This damage has been present for many years longer than the "6 months" often spoken of in the literature. How permanent this damge is may be dose related. It was certainly permanent on any amount of cyanob12. It is very interesting that taking the methylfolate concurrent with the injections increases the effectiveness of the mb12, each having a 1 hour or longer delay until being absorbed or starting to be absorbed. This may make the most difference with my morning injection because that is usually at least 13 hours after my dinner dose of methylfolate. Also, the numbness that used to extend from heal to toe now starts around the arch and forward. The back third of each foot is virtually normal. The stocking neuropathy effect has retreated from mid thigh a couple of years ago to just my foot. During the glut trial it was back up to my knees. It's really just the past week that I can't feel it anywhere in my lower legs any more.

That is one of the things I've found over and over, sometimes how or when something is taken makes a sizable difference in results.

 

[powertool4]

Is anyone here good with biochem and confirm what i just found?


http://www.veganhealth.org/b12/cycle
Here is a picture of the cycles in the body regarding b12 and folate. Now the MTHFR gene mutation causes the body to NOT be able to methylate the folate, which can lead to a variety of problems involving folate (DNA, RNA, cellular growth, nervous system issues, etc.) and of course b12 as it is involved in the pathway.

Assuming the absorption of b12 is unaffected (atrophic gastritis, intrinsic factor, etc.) and there is sufficient b12 and folate IN the blood... if you have a MTHFR mutation, based on the cycles above, you would have an accumulation of inactive folates in the blood (not being able to be methylated but constant intake from diet, etc) and also an accumulation of inactive cobalamin (and lack of methylcobalamin) because there is no methylfolate to donate its methyl group to methylate cobalamin. So, you will have a folate AND b12 deficiency. And also high serum folate and cobalamin levels.

Am i correct here? Any input?

 

[Freddd]

Is anyone here good with biochem and confirm what i just found?


http://www.veganhealth.org/b12/cycle
Here is a picture of the cycles in the body regarding b12 and folate. Now the MTHFR gene mutation causes the body to NOT be able to methylate the folate, which can lead to a variety of problems involving folate (DNA, RNA, cellular growth, nervous system issues, etc.) and of course b12 as it is involved in the pathway.

Assuming the absorption of b12 is unaffected (atrophic gastritis, intrinsic factor, etc.) and there is sufficient b12 and folate IN the blood... if you have a MTHFR mutation, based on the cycles above, you would have an accumulation of inactive folates in the blood (not being able to be methylated but constant intake from diet, etc) and also an accumulation of inactive cobalamin (and lack of methylcobalamin) because there is no methylfolate to donate its methyl group to methylate cobalamin. So, you will have a folate AND b12 deficiency. And also high serum folate and cobalamin levels.

Am i correct here? Any input?

Hi Powertool,

As far as my understanding of it goes is that the loop to methylate the folate is only necessary when folic acid is taken, not methylfolate. Again, only when hydroxyb12 or cyanob12 is taken do you need to methylate the cobalamin. When the active forms are taken that entire process is unneeded. As far as I can tell the whole situation can't exist if the active forms are taken in the first place. Further, inactive cobalmins are not retained and are promptly removed by both the kidneys and the liver via HTCIII transporting the inactive cobalamins to the liver for excretion.

This is an artifact of inactive forms, of pseudo vitamins. It is an example how the inactive forms force an alteration in biochemistry and understanding to try to salvage the situation somehow.

 

[richvank]

Is anyone here good with biochem and confirm what i just found?


http://www.veganhealth.org/b12/cycle
Here is a picture of the cycles in the body regarding b12 and folate. Now the MTHFR gene mutation causes the body to NOT be able to methylate the folate, which can lead to a variety of problems involving folate (DNA, RNA, cellular growth, nervous system issues, etc.) and of course b12 as it is involved in the pathway.

Assuming the absorption of b12 is unaffected (atrophic gastritis, intrinsic factor, etc.) and there is sufficient b12 and folate IN the blood... if you have a MTHFR mutation, based on the cycles above, you would have an accumulation of inactive folates in the blood (not being able to be methylated but constant intake from diet, etc) and also an accumulation of inactive cobalamin (and lack of methylcobalamin) because there is no methylfolate to donate its methyl group to methylate cobalamin. So, you will have a folate AND b12 deficiency. And also high serum folate and cobalamin levels.

Am i correct here? Any input?

Hi, powertool4.

That's an accurate diagram for the parts of the metabolism it's depicting.

It's true that the MTHFR C677T polymorphism slows the reaction that produces 5-methyl tetrahydrofolate, but it doesn't shut it off completely. Also, many people who have this polymorphism have only one copy, i.e. they are heterozygous for it, and their other copy of the gene is the normal "wild" type. So, yes, having this polymorphism will likely slow the methylation cycle, but it won't completely shut it down.

Note also in the diagram that you posted that there is an alternate way to convert cobalamin to methylcobalamin, making use of SAMe. This is done by the enzyme methionine synthase reductase, which is not specifically shown on the diagram. Note also that the liver (and the kidneys, though it isn't stated on the diagram) also have an alternate pathway from homocysteine to methionine, called the BHMT pathway, which uses betaine, and it does not require folate or B12. This enables the methionine synthase pathway to continue to operate, but more slowly, when the B12/folate part is not functioning well.

So I would say that yes, what you have suggested is essentially correct, but that there are compensating factors that keep the effects from being as severe as they might be. This polymorphism, as well as others, certainly is a factor in helping to make people vulnerable to developing either autism or CFS, though. If you aren't familiar with Dr. Amy Yasko's work, you might find it interesting to check into it. She has based her treatment of autism, CFS, and adult neurological diseases on the pattern of polymorphisms that each person has, including this one. Another thing you might be interested to hear is that Dr. Richard Kunin in San Francisco, who is president of the Orthomolecular Health-Medicine Society, has had a longstanding interest in methylation, and has reported that the frequency of this polymorphism is much higher in his patient population than in the general population. So you are definitely pointing at something significant.

Best regards,

Rich

 

[nanciswell]

I seem to have somewhat improved energy but cant do anything with it for being bedbound through dizziness.

Maybe you are sensitive to the fillers or what they use to make the supplements. I am just remided how one of my symptoms was bad dizziness from a sensitivity.. For example the Jarrow methyl b12 has some sort of fruit flavour in it.> Do you know if you have any sensititivities???

nanci

 

[nanciswell]

Does anyone now the strength of the methyl b12 made my Natural Factors.. It is the only I have found so far without any added chemicals like sorbital and fruit flavour..

thanks nancy

 

[lebowski]

the puzzle

hi fredd ,

For the last nearly 7 years I have been looking for the next piece of the puzzle that will keep the healing progressing, one at a time mostly. Now I'm looking for that next piece above and beyond what I am already doing that will carry my neurological healing the rest of the way to recovered if possible.

i know u r the expert of details and very probably ruled out infectious probabilities of ur neurological problems but i would feel not very good if i didnt posted this one , so these r the links ;

http://www.nature.com/sc/journal/v41/n10/full/3101479a.html
http://www.informaworld.com/smpp/content~content=a902981759&db=all

the first one says , brucellosis makes some kind of problem like urs if i dont get ur case wrong .. and the second says nicholson found %10.6 brucella at pwcs which is too much for an infection thought not to be happening in north America anymore more than 100-200 cases each year .. so it is probably unchecked at neurological cases but the real situation might be different .. have a look at the abstracts of the links if u have time .. and lets hope this is the last piece of puzzle .. the patient authors tell about at the first link could benefit ur protocol too maybe if so ur response to b12s do not rule out the infectious causes ..

 

[powertool4]

thank you for the response!

this subject fascinates me a lot, and i did see amy yasko's work and presentations (not extensively though). I have been curious to find out why my serum folate and b12 were high (Even though deficient) and this was one of the options that i came up with. but later in the night proven false.

 

[Freddd]

Does anyone now the strength of the methyl b12 made my Natural Factors.. It is the only I have found so far without any added chemicals like sorbital and fruit flavour..

thanks nancy

Hi Nancy,

About 6 years ago I and 4 other hypersensitives completed a set of comparative tests of 10 brands of metrhylb12 sublinguals, of 1-5mg strength. The Jarrow 1 and 5mg and Enzymatic Therapy were 5 stars. They worked excellently on most all symptoms in the short test of a week and the longer tests. These became the standard against which all others were compared. Natural Factors, at that time, turned out to be 2-3 stars. The 3 star items made very little or no progress against the symtoms in the short and long term tests but they also were able to hold onto most of the gains made by the 5 star brands. They had no advantage except of the zero and 1 star brands that were incapable of preventing the return oif symptoms in both short and long term tests. The zero star brand had no effect what so ever in the short term test and was identical with taking nothing at all. The testers 100% refused to do a long term test with the zero and 1 star brands and all would not continue beyond 1 week they were so bad. Natural factors was somewhat better than that but was unable to make any sustained headway against the symptoms but did prevent a complete slide back.

The effectiveness testing we did then gives every appearance of still being descriptive of at least the 5 star brands as they still work as well as ever with the testers.

Natural cherry juice in the 5mg and lemon in the 1mg Jarrows are not usually a source of problems. And for most people, the minute amount of sorbitol is not usually a factor either unless hypersensitivity exists to any of the ingrediants. Hypersensitivity to all sorts of things is often a b12 deficiency symptom that clears up with the use of the supplements.

 

[powertool4]

i have that and be warned, it has lactose in it. The pill tastes a bit creamy as well. But overall, it seems to be very potent i get a lot of reactions from it. I haven't tried jarrow and can't until i finish this bottle so i cant make a comparison but def very effective for me.

 

[Freddd]

Maybe you are sensitive to the fillers or what they use to make the supplements. I am just remided how one of my symptoms was bad dizziness from a sensitivity.. For example the Jarrow methyl b12 has some sort of fruit flavour in it.> Do you know if you have any sensititivities???

nanci

Hi Nanci,

A lot of people who have healed extensively with these supplements found dizziness to be a temporary effect while going through certain stages of neurological healing. When I was hit the first day of a 16 year crash, overwhelming dizziness was one of the symptoms. It faded a bit over the years and when I started healing flared up again for a while until it healed and went away never to return. People will often progress backwards though a whole series of symptoms as they heal. Methylb12 directly affects the neurology very quickly and causes a whole lot of symptom shakeup as the healing progresses. A person doesn't want to get off the bus right in the middle of severe dizziness and stay there. Many people have experienced this while healing and found it to be temporary as long as they continued.

 

[Freddd]

i have that and be warned, it has lactose in it. The pill tastes a bit creamy as well. But overall, it seems to be very potent i get a lot of reactions from it. I haven't tried jarrow and can't until i finish this bottle so i cant make a comparison but def very effective for me.

Hi Powertool,

I would suggsest a different method of comparitive testing of the Jarrow and these other ones you have. If you alternate weeks with each brabd, you will after 2 periods on each have a very good idea of their relative strengths. You need to be able to take the first brand again after taking the second to be able to see if it holds on to the gains or if there is slideback. A simple 1 -2 pattern won't do that while a 1 - 2 - 1 - 2 will let you see that.

Also I am sensitive to lactose but at the time hadn't healed enough to be able to tell if I had a sensitivity to the minute amount in such a tablet. Normally the amount of lactose in a small tablet like that won't bother me at all.

 

[Freddd]

hi fredd ,

For the last nearly 7 years I have been looking for the next piece of the puzzle that will keep the healing progressing, one at a time mostly. Now I'm looking for that next piece above and beyond what I am already doing that will carry my neurological healing the rest of the way to recovered if possible.

i know u r the expert of details and very probably ruled out infectious probabilities of ur neurological problems but i would feel not very good if i didnt posted this one , so these r the links ;

http://www.nature.com/sc/journal/v41/n10/full/3101479a.html
http://www.informaworld.com/smpp/content~content=a902981759&db=all

the first one says , brucellosis makes some kind of problem like urs if i dont get ur case wrong .. and the second says nicholson found %10.6 brucella at pwcs which is too much for an infection thought not to be happening in north America anymore more than 100-200 cases each year .. so it is probably unchecked at neurological cases but the real situation might be different .. have a look at the abstracts of the links if u have time .. and lets hope this is the last piece of puzzle .. the patient authors tell about at the first link could benefit ur protocol too maybe if so ur response to b12s do not rule out the infectious causes ..

Hi Lebowski,

Interesting. I read the case history and other abstract. Thankyou. There is no indication at all that I might have this. The case history doesn't even match at all. I have had lots of antibiotic therapies all during my sickest years, my entire life in fact, because I used to get a lot of infectious things. Up until 6.5 years ago I had antibiotics 6-8 times per year since birth. I have not needed even a single antibiotic course since then. Basically I have had no reason to take the last 45 rounds of antibiotics I would have previously needed in that period. My neuropathies, both peripheral and central, match very well b12 deficiency neuropathies in all ways as do essentially 100% of my other former symptoms match b12 deficiency symptoms. Except for a few things caused by a sudden 40mph 4 tons of steel overdose and some other old injuries all my symptoms responded to mb12 and cofactors. I have no mystery symptoms left and actually very few symptoms comparatively.



The only significant symptoms I have left is the partial numbness in my feet that has been yielding slowly to the mb12. The "stocking" neuropathy that use to extend to my upper thighs now barely makes it to my ankle. The numbess that used to include my entire foot and part of my ankle only includes from the arch forward and I have regained feeling and control of all my toes.

 

[xlynx]

Well after stopping the mb12 sublingual I improved alot and after stopping the b complex my dizziness is 10% of what is what last week, just to have this break is like heaven. Of course its too early to say if this is a freak occurrence although I doubt it. This leaves me in an awkward position as what to do next when even the b complex bothers me. Whats strange is that prior to the mb12 the b complex never effected me, why would that change? Trying to get my head around this just hurts I am not aware of allergies to any of the fillers all I know is I feel so much better right now.

I was thinking to leave it all for a week and then come back to it slowly. To give you an idea on the days I take the b12 I loose about 60% functionality.

I stuck to the plan for two months and really suffered with it hoping it would reduce in intensity but it just wont let up. Either Ive got to really slow it down this time and really ease into it as I cant go head first again as its literally torture.

The real concern I have is accepting that I am making the right move, even though it makes sense that I would get a reaction from healing I cant help but feel suffering with it is sensible either.

 

[Freddd]

Well after stopping the mb12 sublingual I improved alot and after stopping the b complex my dizziness is 10% of what is what last week, just to have this break is like heaven. Of course its too early to say if this is a freak occurrence although I doubt it. This leaves me in an awkward position as what to do next when even the b complex bothers me. Whats strange is that prior to the mb12 the b complex never effected me, why would that change? Trying to get my head around this just hurts I am not aware of allergies to any of the fillers all I know is I feel so much better right now.

I was thinking to leave it all for a week and then come back to it slowly. To give you an idea on the days I take the b12 I loose about 60% functionality.

I stuck to the plan for two months and really suffered with it hoping it would reduce in intensity but it just wont let up. Either Ive got to really slow it down this time and really ease into it as I cant go head first again as its literally torture.

The real concern I have is accepting that I am making the right move, even though it makes sense that I would get a reaction from healing I cant help but feel suffering with it is sensible either.

Hi Xlnx,

When I started mb12 it was like that except that I was already non-functional so I was just differently non-functional. Are you taking adb12? Were you taking b12 twice a day? Were you taking methylfolate? What about TMG? L-carnitine-fumarate? Zinc? Magnesium? The first month was constantly energetic. The second month was a crash with a zero star brand. Then the next several months stayed very energetic until I increased the amount of mb12 and the neurological changes appear to have come off the peak. It didn't stop completely until I took the adb12 and then that feeling disappeared in a few days after 1 day of higher intensity like the first days of mb12 all over again.

I also experienced things that made no difference before mb12 suddenly made a lot of difference. For me all that triggered the "Ahhhh, at last it is healing" feeling.

 

[Sunday]

xlynx, I have been on this protocol for coming up on 4 months now. For the first couple of weeks I felt good (one week even really good). Then I crashed for 2 months, exacerbation of all symptoms including dizziness, PEM, nausea, the lot. It was awful. I was discouraged. I thought it might never, ever end.

The thing is, when I came out of that LONG crash (probably partly helped by acupuncture), I took the first (very slow) 20-minute walk I had taken in half a year. I was able to do other things I haven't been able to do, too.

Every time I up my dosage on this (I'm titrating very slowly) I crash again. But I keep noticing the reduction of symptoms (using Freddd's list helps keep track). It doesn't happen all at once; it doesn't even have a linear progression. It's a gradual, spiral effect. I'm willing to pay the price of the crashes because now I'm crashing to get better. Before I was crashing and felt as if I was just getting worse.

 

[xlynx]

Hi Xlnx,

When I started mb12 it was like that except that I was already non-functional so I was just differently non-functional. Are you taking adb12? Were you taking b12 twice a day? Were you taking methylfolate? What about TMG? L-carnitine-fumarate? Zinc? Magnesium? The first month was constantly energetic. The second month was a crash with a zero star brand. Then the next several months stayed very energetic until I increased the amount of mb12 and the neurological changes appear to have come off the peak. It didn't stop completely until I took the adb12 and then that feeling disappeared in a few days after 1 day of higher intensity like the first days of mb12 all over again.

I also experienced things that made no difference before mb12 suddenly made a lot of difference. For me all that triggered the "Ahhhh, at last it is healing" feeling.

Hi Freddd,

I bought the adb12 and it arrived a couple of days ago I haven't tried it yet, I only added in methyl folate the last week and it didn't make any noticeable difference. I am taking Acetyl L Carnitine 2g, ribose 10g, zinc 30g, magnesium 600g. I was thinking about starting the b complex tomorrow again and then adding in the adb12 1/4 tablet, you think thats a good start? With your experience what you recommend, I would like to take it slightly slower just to keep my sanity.

Thank you

 

[xlynx]

xlynx, I have been on this protocol for coming up on 4 months now. For the first couple of weeks I felt good (one week even really good). Then I crashed for 2 months, exacerbation of all symptoms including dizziness, PEM, nausea, the lot. It was awful. I was discouraged. I thought it might never, ever end.

The thing is, when I came out of that LONG crash (probably partly helped by acupuncture), I took the first (very slow) 20-minute walk I had taken in half a year. I was able to do other things I haven't been able to do, too.

Every time I up my dosage on this (I'm titrating very slowly) I crash again. But I keep noticing the reduction of symptoms (using Freddd's list helps keep track). It doesn't happen all at once; it doesn't even have a linear progression. It's a gradual, spiral effect. I'm willing to pay the price of the crashes because now I'm crashing to get better. Before I was crashing and felt as if I was just getting worse.

Hi Sunday,

I am really excited to hear that you are progressing on the protocol, can I ask you what you mean by Freddds list?

What sort of dosage did you start on and work up to? I have to say that I am feeling very good today since stopping. It remarkable the difference. It is possible this is the best I have felt even prior to taking mb12, I have even noticed that I dont have any gland pain in the neck for the first time in ages.