B-12 - The Hidden Story

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michaeldfaulkner

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Rich: Also noted with interest some threads on inability to gain weight (my issue as well), and possible heavy metal toxicity complicating all of this (also a possibility for me). Might not have CFS, but seems like some of the symptoms.

Rich: Thanks for the quick reply. I'm floundering a bit, as I'm not sure what questions to ask. I'm not a CFS patient, althogh my wife struggled with symptoms for many years and is doing well. I did have a bone marrow bioposy a year ago as the hematologist was trying to determine why there were high levels of nutrients in the serum (besides, B12, folate, and iron), and low in the red blood cells. Also slightly elevated MCV for a few years prior. Not too much else abnormal in the blood work that I know of. It's a year later, with constantly rising MCV, and I'm waiting for a B12 blood test to come back this week (some kind of involved testing -- two weeks worth -- where I think they look at the entire cycle of B12 production).

If the hematologist has no answers after receiving the test back, and the B12 is getting lower in the red blood cells, I was trying to determine and get suggestions as to what to do next on my own or with an alternative doc. If you can make any suggestions, much appreciated.
 

richvank

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Rich: Also noted with interest some threads on inability to gain weight (my issue as well), and possible heavy metal toxicity complicating all of this (also a possibility for me). Might not have CFS, but seems like some of the symptoms.
Hi, Michael.

In view of the things you've reported, I think you would benefit from getting the Vitamin Diagnostics methylation pathways panel. It will tell you if you have a partial methylation cycle block, draining of folate metabolites from your cells, and glutathione depletion. If you do, together with your doctor, you could consider the Simplified Treatment Approach for lifting the methylation cycle block. The protocol is given below. The lab that runs this test is still getting set up from moving to a different building, but the test should be available again soon. Here is the contact information:

Methylation Pathways Panel

This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.


Available from:

Vitamin Diagnostics, Inc.
540 Bordentown Avenue
South Amboy, NJ 08879
USA
Phone:+1 (732) 721-1234


Lab Director: Tapan Audhya, Ph.D.
(usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)


April 18, 2009


SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME (Revised)

(Extracted from the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. FolaPro [2]: ¼ tablet (200mcg) daily
2. Actifolate [3]: ¼ tablet daily
3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
5. Activated B12 Guard [6]: 1 sublingual lozenge daily

All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


[1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
[2] FolaPro is a registered trademark of Metagenics, Inc.
[3] Actifolate is a registered trademark of Metagenics, Inc.
[4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
[6] Activated B12 Guard is a registered trademark of Perque LLC.


Best regards,

Rich
 
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michaeldfaulkner

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Rich: I will bring this to the attention of both my current "standard" doc and my alternative doc. I'm interested in what the B12 cycle blood test results coming this week will show (a bit anxious too). I didnt' realize cell folates could be depleted at the same time (well, I read they are certainly related to any B12 deficiency symptoms-- and as you describe above, can be the source of the problem). Homocysteine, not surprisingly, also more than doubled over this time. Input much appreciated.


Hi, Michael.

In view of the things you've reported, I think you would benefit from getting the Vitamin Diagnostics methylation pathways panel. It will tell you if you have a partial methylation cycle block, draining of folate metabolites from your cells, and glutathione depletion. If you do, together with your doctor, you could consider the Simplified Treatment Approach for lifting the methylation cycle block. The protocol is given below. The lab that runs this test is still getting set up from moving to a different building, but the test should be aivailable again soon. Here is the contact information:

......Best regards,

Rich
 

aquariusgirl

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For what it's worth, In the past couple of months, I had my blood B12 measured & also ran a Metabolic Acid Profile, which measured MMA.
Blood B12 was >2000 (from memory). IN other words, high.
MMA was 19.9 showing clear B12 deficiency.
My UK GP .....who...to be fair.... only saw the blood B12 told me the "milk bottle was overflowing" and refused to prescribe B12.

It makes you want to SCREAM. The milk bottle is overflowing. WTF?
 

Freddd

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For what it's worth, In the past couple of months, I had my blood B12 measured & also ran a Metabolic Acid Profile, which measured MMA.
Blood B12 was >2000 (from memory). IN other words, high.
MMA was 19.9 showing clear B12 deficiency.
My UK GP .....who...to be fair.... only saw the blood B12 told me the "milk bottle was overflowing" and refused to prescribe B12.

It makes you want to SCREAM. The milk bottle is overflowing. WTF?
Hi Aquariusgirl,

let's look at the meaning of those two tests, taken together. Remember, there are probably several possible explanations. First, serum cobalamin includes all cobalamins, active and inactive. For instance it is possible to be completely adequate in one of the two active b12s and yet have a deficiency in the other. In this case the MMA indicates a probable lack of adenosylb12 specifically which could come about even if you take a lot of methylb12 and can't convert to adb12. it definitely indicates a breakdown in the production of ATP in a very specific place. If you are taking hydroxyb12, cyanob12 or methylb12 and lack the enzyme to convert to adb12 that could account for your results. You could also have liver problems if you do not take any supplemental b12 of any kind. Then in additon to this you could have a hidden b12 deficiency in your CSF/CNS of either or both active varieties. The blood tests can't indicate a CNS/CSF deficiency of either kind. If you have a body shgortage you will usually also havve a CNS shortage of the same kind. The catch is that asmounts that take care of the body may not do so in the nevervous system. In CFS/FMS/Alzheimer's depressed cobalamin levels in the CNS/CSF have been found by research that have no relation to serum level, at least below 500pg/ml. In your case with you specifcally low on adb12 it likely affects your CNS/CSF regardless of serum cobalamin. Specifcally a 3mg Country Life adb12 daily will correct that in short order. Also methylfolate, l-carnitine fumarate, Alpha Lipoic Acid and all the basics should get your mitochondria firing on all cylinders again. Methylb12 would be a good idea too as a balance is important. After a month on the adb12 you could try the 51mg adb12 one time trial and see if that makes a difference. If it makes a difference you have separate CNS/CSF issues not corrected by regular body level doses. You can also try the 50mg mb12 dose to make the same check for CSF/CNS mb12 issues after a month on 5mg/day of methylb12.


The problem is not the tests but in the lack of understanding them and interpreting them. It is this kind of ignorance that can cause me and you and others like us a good deal of damage or death.
 

Freddd

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Rich: Thanks for the quick reply. I'm floundering a bit, as I'm not sure what questions to ask. I'm not a CFS patient, althogh my wife struggled with symptoms for many years and is doing well. I did have a bone marrow bioposy a year ago as the hematologist was trying to determine why there were high levels of nutrients in the serum (besides, B12, folate, and iron), and low in the red blood cells. Also slightly elevated MCV for a few years prior. Not too much else abnormal in the blood work that I know of. It's a year later, with constantly rising MCV, and I'm waiting for a B12 blood test to come back this week (some kind of involved testing -- two weeks worth -- where I think they look at the entire cycle of B12 production).

If the hematologist has no answers after receiving the test back, and the B12 is getting lower in the red blood cells, I was trying to determine and get suggestions as to what to do next on my own or with an alternative doc. If you can make any suggestions, much appreciated.
Hi Michael,

A rising MCV could very well be a shortage of mb12 and or methylfolate. Usually those along with the basics will correct the MCV and other indicators. Also potassium is a much becasue the active forms of b12, methylb12 and adb12 can often cause hypokalemia very rapidly. methylb12 with adb12 works for almost everybody with methylfoalte and doesn't leave 1/3 of the people out in the coold as hydroxyb12 does. Also it works more quickly, hence the increased danger of hypokalemia. Further they work on about 300 symptoms of b12 deficiencies instead of about 1/3 of them. Further the basics like b-complex, magnesium, calcium, a,d e, etc should also be taken as healing puts a strain on the entire range of nutrents often causing temporary shortages that cause improvment to come to a grinding halt.
 

richvank

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Rich:I didnt' realize cell folates could be depleted at the same time (well, I read they are certainly related to any B12 deficiency symptoms-- and as you describe above, can be the source of the problem). Homocysteine, not surprisingly, also more than doubled over this time. Input much appreciated.
Hi, Michael.

When a partial block develops at methionine synthase in the methylation cycle, 5-methyl tetrahydrofolate is not converted to tetrahydrofolate at a normal rate, so it builds up as other forms of folate in the cell are converted to it. Since it does not have a glutamate tail, as do other forms of folate in the cells, it is able to leak out of the cells into the blood plasma. Over the course of time, this process drains folates out of the cells. This is called the "methyl trap" mechanism. In CFS, it is likely that some 5-methyl THF also reacts with peroxynitrite, a reaction reported in a paper by Antoniades et al. This and other loss mechanisms will often cause the level of 5-methyltetrahydrofolate to be lower than normal in the blood plasma of a person with CFS, but those who supplement folates can have high plasma folate levels. By looking at the levels of the various forms of folate in the blood plasma, as in the Vitamin Diagnostics panel, one can infer what the folate metabolite levels inside the cells are like.

Best regards,

Rich
 

aquariusgirl

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Yes, Fredd, that's what I am saying: that the GP misinterpreted the blood B12 reading.
I don't get how you can infer that there is a shortage of adenosyl B12? Although you may have put your finger on it because that is the one type of B12 that I am not supplementing.
But anyhow if you could explain your reasoning, I would appreciate it. Links would suffice.
I have no problem supplementing the adenosyl B12, but I don't like the country life brand, because it includes a fair bit of regular old folic acid, and as I mentioned before I am trying to avoid that so as not to interfere with the uptake/or transport of the bioactive folates.
What about the source naturals brand? Would that work?
thanks
aquariusgirl
 
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Yes, Fredd, that's what I am saying: that the GP misinterpreted the blood B12 reading.
I don't get how you can infer that there is a shortage of adenosyl B12? Although you may have put your finger on it because that is the one type of B12 that I am not supplementing.
But anyhow if you could explain your reasoning, I would appreciate it. Links would suffice.
I have no problem supplementing the adenosyl B12, but I don't like the country life brand, because it includes a fair bit of regular old folic acid, and as I mentioned before I am trying to avoid that so as not to interfere with the uptake/or transport of the bioactive folates.
What about the source naturals brand? Would that work?
thanks
aquariusgirl
cobalamin turns into either deoxyadenosylcobalamin or methylcobalamin. Adeno is the one that coverted methylmalonic acid into succinic acid and it is used in the kreb cycle. That is why Freddd said you might benefit from adeno as your MMA was elevated. :)
 
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michaeldfaulkner

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Clarification

First, I want to thank everyone for their in-depth and obviously expert contributions.

Fred: Assume you are recommending the supplements below from the first page of this looong post (-:

Are these complementary to the list of supplements that Rich recommended in a previous post to me yesterday?

Actually, for the last six weeks or so, I have been taking L-Methylfolate (1000 mcg) from Life Extension. and 25 mcg of B12 as dibenoxide (hard to read on the bottle). MCV continued to rise with this regimen.

•Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness

•Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness

•Solgar Metafolin 800mcg

•Jarrow B-Right b-complex, 1 capsule twice a day

•Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.

•Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.

Hi Michael,

A rising MCV could very well be a shortage of mb12 and or methylfolate. Usually those along with the basics will correct the MCV and other indicators. Also potassium is a much becasue the active forms of b12, methylb12 and adb12 can often cause hypokalemia very rapidly. methylb12 with adb12 works for almost everybody with methylfoalte and doesn't leave 1/3 of the people out in the coold as hydroxyb12 does. Also it works more quickly, hence the increased danger of hypokalemia. Further they work on about 300 symptoms of b12 deficiencies instead of about 1/3 of them. Further the basics like b-complex, magnesium, calcium, a,d e, etc should also be taken as healing puts a strain on the entire range of nutrents often causing temporary shortages that cause improvment to come to a grinding halt.
 

xlynx

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Hi Winston and Sunday,

Thank you for the inspiration, its definitely needed to push through the startup symptoms :).

My Dr is surprised at my reaction, I know he sees alot of cfs patients and he says that I am the first he has seen with such a heavy reaction from mb12. He has asked me to stop taking it as I have just done a detox profile test and wants me to await the results. I spoke to him about the results I have heard on this forum and asked if I should try to push on, he wasnt so keen until the results come back. Overall he said as soon as the results come in he is going to come up with a plan. He was speaking about possibly needing to treat another detoxification pathway at the same time to reduce the effects?

I have to say though I am currently on Fluconazole and am about to start reflaxamin and I am feeling a bit similar to how I was on the b12, more dizziness and light headed etc. I am starting to wander if my b12 symptoms were largely detox. Hard to be sure of.
 

Freddd

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First, I want to thank everyone for their in-depth and obviously expert contributions.

Fred: Assume you are recommending the supplements below from the first page of this looong post (-:

Are these complementary to the list of supplements that Rich recommended in a previous post to me yesterday?

Actually, for the last six weeks or so, I have been taking L-Methylfolate (1000 mcg) from Life Extension. and 25 mcg of B12 as dibenoxide (hard to read on the bottle). MCV continued to rise with this regimen.

•Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness

•Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness

•Solgar Metafolin 800mcg

•Jarrow B-Right b-complex, 1 capsule twice a day

•Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.

•Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.

Hi Michael.

Fred: Assume you are recommending the supplements below from the first page of this looong post (-:

Are these complementary to the list of supplements that Rich recommended in a previous post to me yesterday?


Yes, the supplements from the first part of this thread. As regards how it relates to those Rich suggests let me say this. Rich is suggesting the "simplified" form of the supplement program, and there is a complete form. This keeps the supplements to a minimum. The whole is much more complicated. I have divided the supplements used into 3 groups. The "absolute minimums" which will identify about 95% of those who would respond to the whole program if used as a several month trial. That leaves about 5% unidentified because they are lacking something else that is acting as a limiting factor. This minimum is a simplified approach. Then there are the basics which are essential becasue once a person starts healing they will become deficient, if they are not already deficient as there are lots of gastro problems with these deficiencies, of some number of the basics that are not adequate for accelerated healing from the diet alone and their lack can bring healing to a crashing halt. And then there are the "critical" showstopper supplements. These are a few other supplements that in their lack either singly or in any of every possible combination have the capability of totally preventing healing and correction of problems. I have to admit there are days when it is difficult to face another handfull of tablets and capsules and it would be so nice to have it all in a single magic capsule. Unfortuantely it would need to be the size of a jumbo egg. And some things need to be taken with food and some without.

I include potassium in the absolute minimum becasue with the active b12s and to a lesser extent with the inactive b12s, there is a risk of hypokalemia (potassium deficiency in serum) that can hit so fast and hard that there is no time to get to the doctor to have it corrected, if recognized, and can have severe consequences before lab tests can be back. It can hit so hard in as few as 3-4 days after starting active b12s that one is incapable of driving ones self to the store to buy potassium. Hypokalemia can be fatal. That is why I have it in the basics. I have experienced it, several times as I added items that started a new round of healing and one item that triggered increased excretion. While I don't place nearly as much credence in the tests as Rich does, potassium is one of those that must be monitored if you are to stay out of trouble.

The actual supplements suggested overall between complete programs (not simplified) are all essentially the same with one major exception. He is suggesting one brand of Metafolin and I'm suggesting a different brand of Metafolin at half the price but the quality standards for Metafolin (a specific brand of methylfolate from Merck) are the same for all retail brands. Pay attention to brands because many things that are supposed to be the same don't work the same in all this.

The major exception is a very important one, the actual form(s) of b12 suggested. He suggests hydroxycobalamin, a non active cobalamin that must be converted in the body to both methylb12 and adenosylb12, the only two active in humans forms of b12. Ignore minor name and spelling differences as most of these things are referred to many ways internationally.

Rich is a researcher operating on a theoretical basis and knows far more about biochemistry than I do. I'm a systems analyst in the health care field and know far more about utilization review and data mining than he does. I have also walked the road back from 200 or so of the symptoms on the list of symptoms to healed and recovered except for some 25 or so long term physical and neurological damage. If you haven't looked at the list of symptoms and co-correlates it would be helpful for you. B12/folate deficiencies are so interrelated that it is pretty pointless most of the time to try to separate them. Most people with these deficiencies have a lot of symptoms across many systems of the body. They rarely have only one or two pinpoint symptoms or signs such as high MCV. In fact the widespread symptoms across all bodily systems is such an outstanding characteristic of b12/folate deficiencies that it makes picking people who are likely to respond from a database very easy. While most of the symptoms are non-specific, that is they have other causes too, the summation of all the symptoms are usually very specific and point to the b12/folate deficiencies. As there are 4 separately definable and describable b12 deficiencies, adb12 body, mb12 body, adb12 CNS/CSF and mb12 CNS/CSF plus each in variation with and without folate deficiency it can get a little complicated.

The thing is NOBODY IS DEFICIENT OF HYDROXYB12/CYANOB12 and NOBODY IS DEFICIENT OF FOLIC ACID. The body doesn't directly use any of them. While a "statistically significant percentage of people have a statistically significant response" to all of those substances they all leave 33-66% of the population out in the cold. Further, while they may work to some extent, they don't generally work well. I'm one of those for whom none of those 3 substances work well enough to keep me from nearly dying of deficiencies while taking them. I investigated the situation reading hundreds of studies before I put the first active B12 in my mouth. I saw all the many underlying assumptions needed for the inactive substances to work. B12 has the most complicated absorbtion and transport system of any vital nutrient. There are more places for it to go wrong than for any other vitamin. I wanted something to work for me after 55 years of spinning my wheels and being misdiagnosed and mistreated because of all the underlying assumptions of the researchers and doctors. To eliminate the many assumptions I had to go directly to all three active substances, and they worked like gangbusters.

Further, I have seen many people trying the inactive cobalamins having not enough benefit to actually heal and after years are still sick, even if their test results look good. I have not come across anybody at all who after years on inactive cobalamins have no response to active cobalamins as people without any trace of deficiency have. They don't have sufficiency even after years. The thing about the active b12s, and I suggest a combination of adb12 and mb12, both active ones, because so many people have separate responses to each, is that they can cause so much response so quickly that many people find these startup symptoms decidely unpleasant and even fearful. It appears that the greater and deeper/wider the deficiency the larger the startup responses. Also, the things with the most pronounced startup responses also appear to be the things that heal the most rapidly. Things intensify and change starting often within 15 minutes and continue to change until they are gone, often appearing to go backwards through 50 or 100 steps that were gone through over a period of decades in a period of months. People with CNS damage find themselves undergoing mood and personality changes very rapidly and intensly as the neurology itself appears to be changing. This is entirely unresearchged because none of the protcols the doctors usually use with inactive b12s causes this kind of rapid neurological healing.

Now in the process of healing that which heals with these programs, many other problems are uncovered. When 150 symptoms recede but 30 are not touched this is a hint that there is something else wrong. At another forum http://forums.wrongdiagnosis.com/showthread.php?p=218405#post218405 with a couple of years of history a million more reads and 10,000 more posts, hundreds of people have been through this process. One man, Bill, has just recently described how these things have helped a lot of his symptoms, but not some of his most troubling and significant ones which we were able to tell him up front were not likely to be helped as they did not appear related to b12/folate. Many folks have come, healed and gone on their way. Some have found very little help with the active b12/folate but most have a lot of results. So far, all of those who stick it out through the unpleasant startup responses have had significant healing. These startup responses appear quite predictive of healing. People with no symptoms or signs of b12 deficiency have no startup responses.

So please, do some reading here and there and whereever. In this game of "You Bet Your Life" it pays to educate yourself and make informed choices.

What are all the other symptoms besides increasing MCV? Those can tell a lot. Increasing MCV is usually just the tip of the iceberg.

Actually, for the last six weeks or so, I have been taking L-Methylfolate (1000 mcg) from Life Extension. and 25 mcg of B12 as dibenoxide (hard to read on the bottle). MCV continued to rise with this regimen.

That would be 25mcg of dibencozide , another name for adenosylb12. Taking oral b12 might limit it's absorbtion to only 1% in amounts beyond 10mcg. The Country Life 3mg Dibencozide sublingual is much more effective. This then wokrs also on the many assumptions. To bypass the assumptions one must have an unbound surplus of active b12s in the blood. Further adb12 works in the mitochondria and is not involved in making blood and if the person can't convert to methylb12 is useless for that purpose. Further, Life Extension l-methylfolate is NOT Metafolin by brand name. I have not tested it personally and can't verify that it works the same. The Jarrow and Country Life brands have been tested by me and other hypersentitives compared to 9 other brands and these are the most effective along with Enzymatic Therapy methylb12 sublinguals.

If you take the brands of vitamins as specified and in the manner specified and with the basics, because it might not be folate or b12 but something else or in combination you will likely have better results though no results can be guaranteed. For me the mb12 didn't bring my MCV down but Metafolin did very quickly (90 days) with hypokalemia starting on the 4th day. Hypokalemia is confirmation that healing is happening and is no problem if you prevent it by taking some potassium supplement and have it on hand in case a sudden increase is needed. Taken on an empty stomach relief with potassium can occur in 30 minutes.

Also, I have just recently found Metafolin to be more effective taken on an empty stomach taken multiple times per day. I've walked this path. Good luck.
 

Freddd

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Hi Winston and Sunday,

Thank you for the inspiration, its definitely needed to push through the startup symptoms :).

My Dr is surprised at my reaction, I know he sees alot of cfs patients and he says that I am the first he has seen with such a heavy reaction from mb12. He has asked me to stop taking it as I have just done a detox profile test and wants me to await the results. I spoke to him about the results I have heard on this forum and asked if I should try to push on, he wasnt so keen until the results come back. Overall he said as soon as the results come in he is going to come up with a plan. He was speaking about possibly needing to treat another detoxification pathway at the same time to reduce the effects?

I have to say though I am currently on Fluconazole and am about to start reflaxamin and I am feeling a bit similar to how I was on the b12, more dizziness and light headed etc. I am starting to wander if my b12 symptoms were largely detox. Hard to be sure of.
Hi Xlynx,

I would be very surprised if your reaction to mb12 is mostly due to detox. It has such immediate and profound impact on the metabolism and neurology that detox is usually a terribly minor part of it. The reason your doc doesn't see it is that most brands don't work and/or are not taken in a manner to allow them to work. If everybody he saw took the jarrow 5mg with cofactors for 45 minutes under lip he would see the same reactions from almost everybody. You should tell him what makes these startup responses completely predictable. I worked hard to find what made these reactions predictable instead of a rare one in one hundred accident. Dizzyness and lightheadedness can be caused by hundeds of different causes and are not specific to anything. They are pronounced in b12 deficiencies and aggravated by startup of active b12s/folate. They can be caused by hundreds of drugs of many completely different mechanisms including marihuana and morphine or low blood pressure.
 

Freddd

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Yes, Fredd, that's what I am saying: that the GP misinterpreted the blood B12 reading.
I don't get how you can infer that there is a shortage of adenosyl B12? Although you may have put your finger on it because that is the one type of B12 that I am not supplementing.
But anyhow if you could explain your reasoning, I would appreciate it. Links would suffice.
I have no problem supplementing the adenosyl B12, but I don't like the country life brand, because it includes a fair bit of regular old folic acid, and as I mentioned before I am trying to avoid that so as not to interfere with the uptake/or transport of the bioactive folates.
What about the source naturals brand? Would that work?
thanks
aquariusgirl
Hi Aquariusgirl,

Elevated MMA occurs from a breakdown of the Krebs cycle for lack of adb12. It is very specific for adb12, just as Hcy is very specific for mb12/folate/p-5-p. The 200mcg of folic acid has no apparant effect on Metafolin uptake. Source Naturals was the only methylb12 sublingual that rated an absolute zero stars, totally ineffective in all ways in our 10 brand test. I have never tested their adb12 product. Why don't you get a bottle of each and conduct a side by side test for yourself. I'll help you set it up to demonstrate a difference if there is one.

There are 4 separate b12 deficiencies, adb12 CNS/CSF, mb12 CNS/CSF, adb12 body and mb12 body. Doctors tend to lump them together, the two they recognize, as all one thing and yet there is a separate treatment possible for each. A significant percentage of people have quite separate responses to the two forms of active b12. Further, while Hcy and MMA can indicate a severe breakdown in biochemistry their lack doesn't indicate sufficiency of b12. They only indicate a particularly bad trainwreck but their lack can't tell you there isn't a wreck of some kind.
 

Jenny

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Hi Xlynx,

I would be very surprised if your reaction to mb12 is mostly due to detox. It has such immediate and profound impact on the metabolism and neurology that detox is usually a terribly minor part of it. The reason your doc doesn't see it is that most brands don't work and/or are not taken in a manner to allow them to work. If everybody he saw took the jarrow 5mg with cofactors for 45 minutes under lip he would see the same reactions from almost everybody. .
I'm interested in what you say about people's reactions to mb12, Freddd. I'm on Jarrow 5mg one a day, after working up from half over the last 3 months, and also take the adb12 and half a Folapro. I get no reaction at at all.

Jenny
 

xlynx

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My Dr put me on 5mb mb12 sublingual from AOR and it wasn't bad, I mean it made me feel just as unwell as the Jarrow. One thing that definitely had an effect though was how long I kept it under the tongue. The first week I only had it under the tongue about 10 mins as no one had given me any instruction and then when I read your post stating 45 mins I started doing it for longer and then I could really see the difference in absorption as I felt about 3 times worse.
 

richvank

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I'm interested in what you say about people's reactions to mb12, Freddd. I'm on Jarrow 5mg one a day, after working up from half over the last 3 months, and also take the adb12 and half a Folapro. I get no reaction at at all.

Jenny
Hi, Jenny.

I realize that you addressed your post to freddd, but I'm very interested in PWCs whose bodies don't respond to combined B12 and chemically-reduced folate. In the few cases I've had a chance to study so far, it looks as though there have been deficiencies either in the amino acids needed to feed the methylation cycle and related pathways, or in the vitamin and mineral cofactors needed by the enzymes in this part of the biochemistry. Have you had any testing done on your plasma or urine amino acids, or on your red blood cell elements or urine essential elements? Those are the types of tests I would consider. Of course, up front I would like to see a Vitamin Diagnostics methylation pathways panel run to see if there is indeed a partial methylation cycle block and glutathione depletion.

Best regards,

Rich
 
M

michaeldfaulkner

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Fred: Whether this protocol helps me or, not many thanks for your description, time and effort laying things out for me based on your hard earned experience.

I guess I could summarize your response by saying so long as you take care to supplement (especially potassium), no harm can come from trying out this protocol (well, some discomfort). I also like that you should be able to tell very soon if there is an issue.

Wish I could summarize this in a few sentences, but not to be. As far as my symptoms, a year ago, when my RBC folate and B12 were tested, the hematologist said they would not cause my symptoms. The symptoms had been fairly vague and generalized for a few years prior to that -- not feeling well, little energy, feeling unstable in terms of focusing, lighteheadedness of sorts, bad memory. Had some stomach discomfort for three or four months which I had checked out thoroughly which seemed to resolve after a scan that determined no problem. I had a lot of fear not knowing what was going on. MRI of the head showed nothing. Recently, the fatigue has been a bit worse, and at times, much worse. Other times, I've felt more energy and positivity than ever before.

What I saw in working with the hematologist last year, was that the nutrients didn't seem to be getting into the red blood cells, while having high levels in the serum. My hunch is that this is a global issue for all nutrients, as my D levels were also very high in the blood (about 85) while only taking a modest amount (5,000 units a day).

When these experiences of unsettledness stated about three years ago, the MCV went up a point or so over what he it had been (97.8 which I think is about 1.5 points above high normal). It had been stable for a few years until, I believe, I started to take some natural metal chelators (grapefruit seed extract and some concentrated greens). The more I took of these supplements and others (detoxamin), the MCV continued to rise. Only question is that is has continued to go up even after stopping these supplements for 3 months. Last measurement I took three weeks ago it was about 103. I do exercise, which is a new thing, which I guess could redistribute metals and continue whatever process was causing the increasing MCV. No other large "abnormal" blood work. Blood pressure not well controlled with three meds. High pulse rate at times.

Have you heard of Andy Cutler and his frequent low dose chelation using DMSA and ALA? He does talk about mercury causing mineral transport derangement (I interpret that to mean they don't get absorbed properly due to the mercury in the system). Also elevated MCV and MCH. Interestingly, after trying that protocol recently, a few days after stopping I had tingling and little pains in my feet. Then some wild emotinoal roller coaster days.

Based on this experience, and several alternative MD's telling me after some alternative and traditional tests that metals could be my main isssue, I tend of think metals may be the cause of my abnormal blood work and the other symptoms.

Also took a low radiation calcium heart scan for heart disease. I have a problem, and I do recommend this test for everyone to determine whether they have plaque or not. http://www.trackyourplaque.com is a site where the group is trying to come up with new treatments for heart disease. Very bright people there too. My Transcendental Meditation program also saves my psychology by giving me a terrific pick me up and head clearing. Fabulous technique. Been doing since I was a kid.

All this seems to me to be uncharted territory, so hard to say if I'm on to the thing that is my problem (metals). Perhaps somewhat similar to your experimentation with the different forms of B12 and folate and findout out yourself what worked, instead of relying on the "professionals".

Thank you again!

Hi Michael.

Fred: Assume you are recommending the supplements below from the first page of this looong post (-:

Are these complementary to the list of supplements that Rich recommended in a previous post to me yesterday?


Yes, the supplements from the first part of this thread. As regards how it relates to those Rich suggests let me say this. Rich is suggesting the "simplified" form of the supplement program, and there is a complete form. This keeps the supplements to a minimum. The whole is much more complicated. I have divided the supplements used into 3 groups. The "absolute minimums" which will identify about 95% of those who would respond to the whole program if used as a several month trial. That leaves about 5% unidentified because they are lacking something else that is acting as a limiting factor. This minimum is a simplified approach. Then there are the basics which are essential becasue once a person starts healing they will become deficient, if they are not already deficient as there are lots of gastro problems with these deficiencies, of some number of the basics that are not adequate for accelerated healing from the diet alone and their lack can bring healing to a crashing halt. And then there are the "critical" showstopper supplements. These are a few other supplements that in their lack either singly or in any of every possible combination have the capability of totally preventing healing and correction of problems. I have to admit there are days when it is difficult to face another handfull of tablets and capsules and it would be so nice to have it all in a single magic capsule. Unfortuantely it would need to be the size of a jumbo egg. And some things need to be taken with food and some without.
 

Jenny

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Hi, Jenny.

I realize that you addressed your post to freddd, but I'm very interested in PWCs whose bodies don't respond to combined B12 and chemically-reduced folate. In the few cases I've had a chance to study so far, it looks as though there have been deficiencies either in the amino acids needed to feed the methylation cycle and related pathways, or in the vitamin and mineral cofactors needed by the enzymes in this part of the biochemistry. Have you had any testing done on your plasma or urine amino acids, or on your red blood cell elements or urine essential elements? Those are the types of tests I would consider. Of course, up front I would like to see a Vitamin Diagnostics methylation pathways panel run to see if there is indeed a partial methylation cycle block and glutathione depletion.

Best regards,

Rich
Thanks very much for these suggestions Rich - you've made some helpful comments on my treatments on other boards. Are you saying that if we don't experience any effect from the Methyl B12 it may not be doing anything?

No I haven't had any of these tests. In in the UK so its difficult to organise these at the best of times, and I've been bedridden for nearly 5 months now so can't even get anywhere to get my blood taken.

I did have a Spectracell test a couple of years ago when I was almost as ill as I am now - serine, glutamine and asparagine were all very high, at the top of the reference range.

Jenny
 

Freddd

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Hi, Jenny.

I'm interested in what you say about people's reactions to mb12, Freddd. I'm on Jarrow 5mg one a day, after working up from half over the last 3 months, and also take the adb12 and half a Folapro. I get no reaction at at all.

Jenny


I realize that you addressed your post to freddd, but I'm very interested in PWCs whose bodies don't respond to combined B12 and chemically-reduced folate. In the few cases I've had a chance to study so far, it looks as though there have been deficiencies either in the amino acids needed to feed the methylation cycle and related pathways, or in the vitamin and mineral cofactors needed by the enzymes in this part of the biochemistry. Have you had any testing done on your plasma or urine amino acids, or on your red blood cell elements or urine essential elements? Those are the types of tests I would consider. Of course, up front I would like to see a Vitamin Diagnostics methylation pathways panel run to see if there is indeed a partial methylation cycle block and glutathione depletion.

Best regards,

Rich
Hi Jenny,

Rich took the words right out of my mouth, cofactors. There is some percentage of folks who have plenty of symptoms that indicate these things are wrong and don't respond in the expected fashion. In my observations in the past, in all the ones that I have seen resolve, it has been cofactors. The tricky part of that is to come up with the right cofactor or more often cofactors. The testing Rich suggests might help finding those. In general, I have never suggested taking these items, active b12 and folate, in isolation. Instead that they be taken with all the basics and critical cofactors, as a lack of certain minerals or other vitamins or amino acids etc can be the limiting factor(s).

Also, just to confirm, the Jarrow 5mg and Country Life Adb12 are being taken under your upper lip and retained for a duration of 45-120 minutes? If they are chewed and swallowed immediately, their absorbtion and activity is severely limited. Also, you might consider increasing the methylfolate to a whole tablet or even several tablets at various times of day. As folate has a short halflife this may be a problem. If you haven't tried the folate on an empty stomach and then put the mb12 and adb12 under your lip so serum peaks are reached at the same time for all of them. The methylfolate can be essential for the ability to utilize the the b12s and you just may not have enough of it at the right time.

A question I have is if you ever had any hint of a reaction, maybe even only the first day. It doesn't have to be earth shaking, even just a little energy or brightening of mood or something. The things that have specifically "turned on" the active b12s and methylfolate for people have included B-complex, p-5-p, l-carnitine fumarate, Alpha Lipoic acid, zinc, magnesium, calcium, vit D, Omega3 oils, SAM-e, TMG. If your issues are lack of tissue healing and formation that can also include vitamins A, C, E which should be presnt as a basic anyway. And I'm sure there are other things that are involved for some.

Also discontinuance of NAC & glutamine, MAXGL, whey, other glutathione precursors or glutathione can allow the the active b12s and folate to do their job as these appear to be able to block the active vitamins virtually 100% in some people. Arginine may inhibit them to a lesser extent.

Good luck. I will say that most folks who do work their way through this maze do find the needed cofactors. Also, for some people, the things that heal do so slowly over time and hardly noticable. Not everybody has significant startup responses though many do. When I first started this I wondered why everybody didn't have the extreme startup responses I and my family had. It turned out that the first dozen or so people I shared the mb12 with were all hypersensitives. Later as I've watched many hundreds go through various stages of responses and healing that I was able to see that like so many things, there was a pretty much a standard distribution curve of immediate responses.