B-12 - The Hidden Story

brenda

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Thanks velha508 and Sunday

I have acutally been working on my gut issues for 6 months now, and have seen a significant improvement.

This has been down to excluding wheat then gluten, cows milk products then all dairy products, coffee alcohol and sugar. The lastest is lectins. I also take digestive enzymes, juice green vegetables and eat a lot of vegetables testing everything with self kinesiology. I tend to agree with Hyppocratise who said that all disease starts in the gut.

The only problem I have had was when I tried Fredd's protocol and had an extreme reaction, and even felt suicidal. I agree with dreambirdie that what happened was due to mercury being mobilised, and she proved it for herself by having a test done. I rememeber Andy Cutler's site where people are chelating mercury and reading of others who got suicidal at times so I am not an unusual case at all, I just should not have taken methyl b12 in such a high dose.

The improvement has been general, and also I have some days when my clarity of thought is better than has been for a long time. It has been a very bumpy ride psychologically though and I have had mood swings and bad days but then I feel better than ever for a day. My bowel function is much better, my skin is better and my joints have less pain.

I am having a DSA done to fine tune things and think that I can probably start on the simplified protocol soon once I have a methylation test done.
 
I

imgeha

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overmethylation


The major difference was the relative severity with the rapidly induced neurological deterioration startup I experienced and it's long duration after the discontinuance of the precursors, 6 months, until I increased the methylfolate to 4800mcg daily from 800mcg. Then it was 75% gone in 3 days and the balance cleared quite suddenly about 2 months following that. Nobody else had such a prolonged experience after discontinuance. Possibly nobody else waited six months to increase the methylfolate, which came from somebody on this board I beleive, or another one. That was the uniqueness. I'm still at 3200mcg.


Hey freddd/rich and all, I was just reading about "overmethylation" it says that some people are "folate deficient" with overmethylation. I'm interested is raising my does of methylfolate as freddd describes. I assume that would that be considered addressing the "folate deficiency" they are talking about in overethylation?

Another point. I am doing 2400 mcg a day of methylfolate and it does't seem to effect me, maybe I still need more as you reccommended fredd..... I'm just curious if anybody you know has tried a product called deplin http://www.deplin.com/ used for depression. I guessing this the same methylfolate we use here?
Hi Mark

I'm interested in this too. Does what you read suggest that you can be overmethylated if you take too little folate and too much B12? So if you get a better balance between folate and B12 you won't be overmethylated? If so, then the balance may be trickier than we thought to achieve. Interested in Freddd's / Rich's replies.

thanks

Nicola
 
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Hi Mark

I'm interested in this too. Does what you read suggest that you can be overmethylated if you take too little folate and too much B12? So if you get a better balance between folate and B12 you won't be overmethylated? If so, then the balance may be trickier than we thought to achieve. Interested in Freddd's / Rich's replies.

thanks

Nicola
hi nicola,

I started a new thread overmethylation, under methylation, and prescursers in this same forum section, I'm a brain fogged reader though so please try and understand on your own, but from what I can tell certain people respond to the "precursers" and "B-vits" differently. The article is very easy to read, and is very easy to understand compared to some of the research artciles. you can p me if you can't find it, but it is pretty new at the moment and is found near the top of the heap. please let us know of any empirical findings or obervations you ay have! thanks!
 

winston

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Hi Freddd, I am doing OK and have reached 3 1/2 pills of the MB12 1000 mcg. It is possible that I have Autoimmune Atrophic Gastritis due to the fact that it is most common to develop in patients with Graves disease who have bee treated with radioiodine or it can be triggered by having H-pylori. Eighteen years ago I had the treatment for Graves and 10 years ago I was treated for H-pylori and that is when the CFS started. Will this B12 protocol help me? Where do I begin to sort this out? Be tested with a biopsy for Autoimmune Atrophic Gastritis? Research for treatment for this disease is B12 and control inflammation. Freddd, what would you do? Thanks.Lena
 

Freddd

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Is the cyancobalamin form always bad or is that dependent on the person ? Do some people's bodies break down this form and thus can take it??
Hi Nanciswell,

Cyanocobalamin only causes blindness in people with Leber's heriditary optic neuropathy. Cyanob12 is completely ineffective in 1/3 of people. In the other 2/3s it helps a few of the 300 or so symptoms and signs. Compared to a combination of mb12 and adb12 it has about 1/100 to 1/10,000 the effectiveness. It is normally a waste form after detoxifying cyanide in a persons body. You might say it is the salvaged from sewage form that the body prefers to excrete though when starved for active b12 can be reconverted to small amounts of the active forms in some people. Does that make it "bad"? You tell me. For me it is worse than useless and makes me sick. It doesn't work well or completely for anyone. Taking cyanob12 gives the illusion of doing something without the effectiveness of the real thing. It is the result of a lab mistake.
 

Freddd

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Hi Mark

I'm interested in this too. Does what you read suggest that you can be overmethylated if you take too little folate and too much B12? So if you get a better balance between folate and B12 you won't be overmethylated? If so, then the balance may be trickier than we thought to achieve. Interested in Freddd's / Rich's replies.

thanks

Nicola
Hi Nicola,

The thing that gets me as I look deeper into this under/over methylation thing is that I had almost all the symptoms of both groups that basically all went away with active b12s and methylfolate. For "overmethylation" to be a reality rather than a hypotheitical genetic trait requires all the biochemical prerequisits for overmethylation to in fact occur. What if it is one of the many malfunctions and hyper-responsive attributes triggerred by active b12 and active folate deficiencies? Like hyper responsiveness to allergens, physical stimulation, brisk reflexes, chemical hypersensitivity, odor hypersensitivity, food hypersensitivity, autoimmune as immune hypersensitivity, cold hypersensitivity, heat hypersensitivity, nervous system hypersensitivity and so on.

I currently do not find the idea that it relates to "too much b12", at least not active b12s, generally believable as it looks like an appears to respond like another bunch of deficiency symptoms. A lot more research is needed, including actual trials with active b12s and folates. As a dose of SAM-e supplies 1000 times or more as much available methyl groups compared to methylb12 I just have difficulty making those assumptions. Trials would tell much. And remember, 3-6 times as many people are "under methylators" depending upon what set of numbers one looks at. However, that does not mean that finding an optimum balance between mb12 and methylfolate and SAM-e and TMG isn't a worthy ideal and that the balances may individually vary between a variety of extremes.
 
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I currently live in the UK and as I am sure others on this forum are finding it a bit of a struggle to get methylcobalamin injections in the UK. At the moment the ones I get are through a very helpful GP, which he orders directly from the US, but I personally do not think the quality is great. I am looking into approaching various other US compounding companies and see what I can come up with. I see that a lot of people on this thread use University College Pharmacy, but I am not sure if i have got the right one, as there are currently two listed on the web:

1. http://www.universitypharmacy.com/index.htm

and

2.https://www.ucprx.com/

Could someone tell me, which one is the better one to approach on behalf of my GP.

Does anybody know of any good quality US compounding pharmacies which are willing to ship to a UK GP?

Thanking you in advance.
 

Freddd

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I currently live in the UK and as I am sure others on this forum are finding it a bit of a struggle to get methylcobalamin injections in the UK. At the moment the ones I get are through a very helpful GP, which he orders directly from the US, but I personally do not think the quality is great. I am looking into approaching various other US compounding companies and see what I can come up with. I see that a lot of people on this thread use University College Pharmacy, but I am not sure if i have got the right one, as there are currently two listed on the web:

1. http://www.universitypharmacy.com/index.htm

and

2.https://www.ucprx.com/

Could someone tell me, which one is the better one to approach on behalf of my GP.

Does anybody know of any good quality US compounding pharmacies which are willing to ship to a UK GP?

Thanking you in advance.
Hi Bluezone,

1. http://www.universitypharmacy.com/index.htm

This is the premier local compounding pharmacy. I have no idea what the other one is. You or your doc would have to ask them about overseas shipments. I'm just not sure. I know they ship all over the USA to the states that have reciprocity of prescription fullfillment.

If you come over to http://forums.wrongdiagnosis.com/showthread.php?p=214385#post214385 and ask people from the UK that post there were they obtain theirs I would expect that some helpful folks will speak up.
 

Freddd

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Symptoms and characteristics of Over and Under methylation

Here is a collection of symtoms, signs and chracteristics of overmethylators and undermethylators from several sources. A few specific items are footnoted. I found the specific interesting. The consensus as to which is what is a bit fuzzy. Some things like depression show up on both lists according to different people. Many of the symptoms on BOTH lists are active b12 and folate deficiency symptoms. As far as response to b12 and folates are concerned, I'm just including what the sources say, not what I think. The ONLY thing they are all (sources) in full agreement on is response to SAM-e.


UNDER METHYLATORS

Depression
High salivary flow
High tear flow
Never dry eyes
Good tolerance of cold
Poor tolerance of heat
Unexplained nausea
Hyperactivity
Frequent colds and flu
Phobias
Highly motivated
Hard driving personality
Poor pain tolerance
Joint pain
Joint swelling
Joint stiffness
Excess perspiration
Addictive tendencies
bipolar disorder
OCD
Schizophrenia
Insomnia
Muscle pains
Abundant or excess saliva in mouth
Obsessive compulsive
Slenderness
Do worse on b12 and folates (4)
Shopping/gambling disorders
Oppositional –defiant
Seasonal depression
Inhalant allergies
Frequent headaches,
Perfectionism
Competitiveness
Asthma
Vasomotor rhinitis
Allergic skin disorders
Pruritis
Excess stomach acid
Fatigue
High libido
Sparse body hair
Elevated absolute basophils
Extreme internal anxiety despite outwardly calm
Delusion thinking rather than hallucinations
Respond well to SAM-e, methionine, avoid folic acid (1)
Anorexia/bulimia
Low serotonin
Low dopamine
Low norepinephrine
Psychosis
Prone to hives
High motivation



OVER METHYLATORS

Elevated serotonin
Elevated dopamine

Elevated norepinephrine
High religiosity
High artistic/musical ability
Self injury
Auditory hallucinations
Absence of seasonal inhalant allergies
Frequent dry eyes
Multitude of chemical sensitivities
Multitude of food sensitivities
High anxiety evident to all
Low libido
Obsessions but not compulsions
Paranoia
Auditory hallucinations
Underachievement as child
Heavy body hair
Hyperactivity
Nervous legs
Grandiosity
Respond well to b12 but avoid SAM-e, inositol, methionine TMG and DMG (1)
Treatment revolves around folic acid, niacin, B12, and a high protein diet. (2)
Depression
Despair
Panic attacks
Upper body pain
Head pain
Nervous
Low salivary
Low tears
High pain tolerance
Low motivation
“space cadet”
Learning disabilities
Intolerance to SSRI drugs
Low perspiration


1 http://www.dr-bob.org/babble/20030525/msgs/229704.html
2 http://www.favoritedr.com/anxiety.html
3 http://www.digitalnaturopath.com/cond/C446553.html
4 http://www.latitudes.org/forums/index.php?showtopic=837
 

richvank

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Hi Mark

I'm interested in this too. Does what you read suggest that you can be overmethylated if you take too little folate and too much B12? So if you get a better balance between folate and B12 you won't be overmethylated? If so, then the balance may be trickier than we thought to achieve. Interested in Freddd's / Rich's replies.

thanks

Nicola
Hi, Nicola.

I have not been able to make sense of Pfeiffer's over and undermethylation concepts in terms of actual measurement of the methylation cycle status using the Vitamin Diagnostics methylation pathways panel. As I understand it, Carl Pfeiffer came up with these concepts several years ago, before it was possible to do direct measurements of the metabolites in the methylation cycle and folate metabolism, and he used indirect measures, such as measurement of histamine level. Histamine actually requires methylation to break it down, so it's difficult for me to understand how someone with high histamine would be overmethylated.

Now that a test panel is available to do direct measurements of SAMe and SAH, I think it makes more sense to base one's thinking on these measurements, rather than the indirect markers that Pfeiffer and others suggested.

Best regards,

Rich
 

xlynx

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For the last two months I have been taking sublingual B12 5mg from Jarrow. The first three weeks of taking this I did not notice anything, however for the last five weeks I've noticed dizziness when taking the B12 and shortly after. I also had periods of dizziness throughout the day which I never had previous to taking the B12. I can't be 100% that the B12 is causing the dizziness later in the day as I only take one in the morning. However I am sure that the morning dizziness is due to it.

what is the current thinking on this, I have purchased SAMe and Methylfolate but have not started to take them yet as I was waiting for this dizziness to subside. Would be interested to hear some thoughts on what I should be doing as I'm really not well-informed enough on this topic to take a sensible thought out decision. Any advice is appreciated.

Many thanks Jerry
 

Dreambirdie

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Hi Jerry--

For many of us with heavy metal toxicity, the B12 can initiate a detox reaction. That's what happened to me. I have stopped taking the B12 until I can handle that level of detoxification. This may, or may not be, what's causing your dizziness.

Several people I know, Sushi being one of them, have commented that they had to take only tiny smidges of B12 to avoid overwhelming detox reactions. As they eliminated more of the heavy metals it became easier for them to handle more normal higher doses of it.

So that's my 2 cents. Good luck figuring it out.
 

Jenny

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Hi Jerry

I assume this is methyl B12. Some say that those with high levels of mercury in their bodies shouldn't take this as it may mobilise mercury into the brain and other organs. I guess this could cause dizziness.

I don't know if there's any evidence for this though and I would have thought that if it did this it would have done it when you first started it. I avoided it for years until I had my amalgams out - I take it now every other day and haven't noticed anything good or bad. I haven't done any chelation so presumably still have mercury if I had it before.

Like so many things much of what is said seems pure speculation, often one researcher's ideas get repeated until they become acknowledged 'fact' when there is actually very little evidence to support them.

Jenny
 

xlynx

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Hi Dreambirdie andand Jenny,

Thank you for the replies, is there any way to find out with a reliable test whether I have a high level of mercury or heavy metal?

thanks Jerry
 

Dreambirdie

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Hi Jerry--

For me there was CLEAR EVIDENCE of heavy metals that was proven by the fecal metals test... which I did right in the midst of a very intense detoxification reaction, that was provoked by the B12. (I posted the results on this thread MANY pages back...
if you want to look for it, it's here.)

The fecal metals test, like the one that tests for the presence of heavy metals in urine, will be most effective if done when "provoked" by some kind of mobilizing/chelating agent. For me the B12 DEFINITELY acted as a mobilizer, pulling the metals out of my cells and into my bloodstream. The lab that did the test was Doctor's Data, and I got the test online thru a company that contracts with them. You don't need a doctor's prescription and they will send the results to your house. Check out the link below.

http://www.detoxamin.com/catalog/index.php?main_page=product_info&cPath=8&products_id=75
 

Jenny

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Dreambirdie's suggestion makes sense - how did the metal levels compare with the levels normally there (ie without any chelation) Dreambirdie?

Like so much else there is huge controversy about how to test for metals. I read up about it for months, found that every method was rubbished by someone or other and decided just to go ahead and have my amalgams replaced without testing.

There are lots of message boards that cover this (eg Cutler's Frequent Dose Chelation).

Jenny
 

Freddd

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For the last two months I have been taking sublingual B12 5mg from Jarrow. The first three weeks of taking this I did not notice anything, however for the last five weeks I've noticed dizziness when taking the B12 and shortly after. I also had periods of dizziness throughout the day which I never had previous to taking the B12. I can't be 100% that the B12 is causing the dizziness later in the day as I only take one in the morning. However I am sure that the morning dizziness is due to it.

what is the current thinking on this, I have purchased SAMe and Methylfolate but have not started to take them yet as I was waiting for this dizziness to subside. Would be interested to hear some thoughts on what I should be doing as I'm really not well-informed enough on this topic to take a sensible thought out decision. Any advice is appreciated.

Many thanks Jerry
Hi Jerry,

That dizziness is certainly "normal" in the sense that it happens almost universally to people taking the mb12 effectively. As it happens to vitually everybody wityh any degree of neurological damage and malfunctioning I doubt sincerely that it has anything at all to do with "detox" unless the detox is allowing healing to take place. You are not used to your nervous system having the mb12 it needs for better functioning. It is something that appears to happen as the neurology is starting to be affected and goes away after a while. Methylfolate and other cofactors may will aid the healing and may or may not intensify various other startup symptoms. The SAM-e and methylfolate are bnotyh potentially key players in this. I would suggest the methylfolate first and b-complex is critical, calcium/magnesium, C, E, A, D, omega3 oils are critical for nervous system healing. The SAM-e should wait until after the basics are on board including adenosylb12 (Country Life Dibencozide). Establishing a new balance of nutrients is important. Everybody that heals goes through things like this. This is a common signpost on the road to healing. I have been through that and a whole lot more. If I hadn't continued and let any of 100 startup and neurological symptoms changes scare me off I would be in a wheelchair with a diaper or dead now. I have walked this path. It is the way through this stuff, whatever the temporary cause. When you have to go through 1000 changes to heal, 999 of them are just different ways to feel wrong. They pass and change to something else as progress is made.
 

Dreambirdie

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Jenny--

Without the chelation there was only VERY LOW levels of arsenic and uranium that showed up. With the chelation there was moderate levels of many metals (too many to remember off the top of my head), and VERY HIGH levels of thallium. I did the test to provide proof for others. At this point I know my body well enough to be able to discern just from my symptoms, that I am having a heavy metal detox reaction. That's the best way to go--to tune in and trust your body. It's also A LOT less expensive!
 

Freddd

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Hi Jerry--

For me there was CLEAR EVIDENCE of heavy metals that was proven by the fecal metals test... which I did right in the midst of a very intense detoxification reaction, that was provoked by the B12. (I posted the results on this thread MANY pages back...
if you want to look for it, it's here.)

The fecal metals test, like the one that tests for the presence of heavy metals in urine, will be most effective if done when "provoked" by some kind of mobilizing/chelating agent. For me the B12 DEFINITELY acted as a mobilizer, pulling the metals out of my cells and into my bloodstream. The lab that did the test was Doctor's Data, and I got the test online thru a company that contracts with them. You don't need a doctor's prescription and they will send the results to your house. Check out the link below.

http://www.detoxamin.com/catalog/index.php?main_page=product_info&cPath=8&products_id=75
And once they show up in fecal and urine tests they are permanently out of your body and no longer a problem and causing illness.