B-12 - The Hidden Story

[winston]

B12

Sunday, I am having severe nausea, thought it was adb12 so stopped that but the nausea continued so I am stopping everything and maybe wait 3 months and try again. I can not deal with the extreme nausea, my husband got some prescription for nausea for chemo patients and it did nothing to help. Also the anxiety with the B12s has been extreme with shaking legs I would take xanax all day to help. I am so disappointed and pretty scared. Fredd I wish there was something you could say or do but I don't think there is at this point.

Lena

 

[Freddd]

Sunday, I am having severe nausea, thought it was adb12 so stopped that but the nausea continued so I am stopping everything and maybe wait 3 months and try again. I can not deal with the extreme nausea, my husband got some prescription for nausea for chemo patients and it did nothing to help. Also the anxiety with the B12s has been extreme with shaking legs I would take xanax all day to help. I am so disappointed and pretty scared. Fredd I wish there was something you could say or do but I don't think there is at this point.

Lena

Hi Lena,

Sorry to hear of your difficulties. I have no idea of the cause of the nauesa. I had nausea for years as a result of deficiency and it is a common symptom, and vomited daily. Compazine suppositories was one of the prescriptions I was able to discontinue. I can't think of any reason these supplements would actually cause nausea unless it is an intermediate step towards healing either the epithelial tissue or the neurology. And of course it may be completely coincidental and not really related or may be caused by the anxiety. It might also be caused by a sensitivity to one of the fillers or binders or something other than an active ingrediant. Jenbooks and some others are much more experienced with that aspect than I am. If you could pin it down to one specific product that might be indicative of something. Hypersensitivity to all sorts of things is also a deficiency symptom that took me more than to 2 years to get past. When you restart, I would suggest you do it very cautiously one item at a time. Good luck.

 

[Sunday]

Lena, I'm sorry to hear about your problems with this protocol. I myself have nausea - so steady I don't even bother to mention it most of the time, it's just a fact of life. It's part of the illness for me. The adb12 actually helped it, for me, but the mb12 and the methylfolate are definitely kicking it in again. I think starting small and not bumping up my dosages too quickly are keeping it manageable. Also, I use ginger a lot (very effective for nausea; even chemotherapy patients find it useful). I put it in my smoothies (major food group for me when nauseated), drink it as a tea, use it in cooking. It does help, though I pretty much always have at least low-grade nausea.

Freddd's advice sounds good to me: you seem extremely sensitive to these supplements. I hope you can start up again, a little at a time, in a way that's more manageable to you. Have you tried things such as breathing exercises, visualization, subliminal tapes, acupressure, massage, aromatherapy, or other such things for your anxiety? Even a simple hot bath can really step it down a notch for me, or focusing on something beautiful. (Actually I realize now, this helps for nausea, too.)

Anxiety is an awful feeling; I hope you find some good tools for dealing with it. I find it really helps to have a bag of tools all ready for when anxiety strikes. And I hope when you have relaxed and recuperated some you can successfully try this protocol again. At least you have identified what you're most sensitive to, that information will be really helpful: you'll know which things need to be started in teeny tiny doses and dealt with very gently.

 

[imgeha]

mB12 and orthostatic tachycardia

I want to report some huge progress for me. For the past 2 days the orthostatic tachycardia has hugely improved, if not gone completely. When I stand my heart no longer races away, leaving me feeling that I need to sit all the time, or making me feel panicky and anxious and in a rush all the time. My heart beats normally. I can walk around normally. This is great progress for me after 3 1/2 years of OT.

I have been doing the active B12 protocol for about 2 month, and it has been a bumpy ride so far. Lots of detoxing (including Herxheimer reactions to toxin dumps), big metal mouth, and lots of feeling lousy. I have been taking 3mg of mB12 / day, 2 B-right, and 1 adenosyl B12 as well as all the other supporting vitamins / minerals. In the last few days I have upped the adenosyl B12 to 2/day, increased the methyl folate to 1/2 tab / day, introduced acetyl carnitine, and increased the mB12 to 4mg / day.

I know it is early days, and I have a long way to go. But significant improvement of the orthostatic tachycardia is a big sign to me that I am finally doing the right thing, and that healing is possible. OT is something that doctors haven't got a clue about treating. It seems the answer is very simple indeed.

Thanks to Freddd and Rich for sharing their knowledge and experience here. I am deeply grateful.

Nicola

 

[brenda]

Too much too soon

I just wonder how many people are doing this protocol far too soon in their recovery, and their bodies cannot cope with the detoxing so they need to prepare through improving the terrain first, otherwise they end up in trouble and who knows, cause serious damage.

 

[Cece]

For those people with nausea

I've read several posts about people experiencing nausea. This is a symptom I am VERY familiar with. However, in the past couple of years it has been much, much better. I think I require alot of salt. I start my day with celtic sea salt in water. Also, I drink salted water at other times throughout the day or when I am feeling weak or "out of it".

Another thing that might have contributed to my nausea getting better is taking amino acids. I do the www.neuroassist.com protocol. It is after I started the aminos and salt that I noticed improvement.

I would say I got most of my improvement with the aminos, then I started the salt after that and got further improvement. I'm not sure how salt and aminos fit into the whole methylation protocol, but it helps me. Deb

 

[Freddd]

I've read several posts about people experiencing nausea. This is a symptom I am VERY familiar with. However, in the past couple of years it has been much, much better. I think I require alot of salt. I start my day with celtic sea salt in water. Also, I drink salted water at other times throughout the day or when I am feeling weak or "out of it".

Another thing that might have contributed to my nausea getting better is taking amino acids. I do the www.neuroassist.com protocol. It is after I started the aminos and salt that I noticed improvement.

I would say I got most of my improvement with the aminos, then I started the salt after that and got further improvement. I'm not sure how salt and aminos fit into the whole methylation protocol, but it helps me. Deb

Hi CeCe,

I've heard others talk about sufficient salt being important. Also that it was important that it was sea salt. Redmond Real Salt is an old mined sea salt from before man made polution often sold as a gourmet salt. It has a multitude of minerals and really enhances the flavor. It does cake as it has nothing added. http://www.realsalt.com/

 

[Freddd]

I want to report some huge progress for me. For the past 2 days the orthostatic tachycardia has hugely improved, if not gone completely. When I stand my heart no longer races away, leaving me feeling that I need to sit all the time, or making me feel panicky and anxious and in a rush all the time. My heart beats normally. I can walk around normally. This is great progress for me after 3 1/2 years of OT.

I have been doing the active B12 protocol for about 2 month, and it has been a bumpy ride so far. Lots of detoxing (including Herxheimer reactions to toxin dumps), big metal mouth, and lots of feeling lousy. I have been taking 3mg of mB12 / day, 2 B-right, and 1 adenosyl B12 as well as all the other supporting vitamins / minerals. In the last few days I have upped the adenosyl B12 to 2/day, increased the methyl folate to 1/2 tab / day, introduced acetyl carnitine, and increased the mB12 to 4mg / day.

I know it is early days, and I have a long way to go. But significant improvement of the orthostatic tachycardia is a big sign to me that I am finally doing the right thing, and that healing is possible. OT is something that doctors haven't got a clue about treating. It seems the answer is very simple indeed.

Thanks to Freddd and Rich for sharing their knowledge and experience here. I am deeply grateful.

Nicola

Hi Nicola,

It's good to hear of your results like this so early in the course of things. Make sure you keep track of exactly what you are doing and what you further change. Sometimes results are from a difficult to achieve balance. It took me a couple of years, until after I had added in the critical cofactors except for methylfolate. It was shortly after I added the l-carnitine fumarate that the OT faded away as it became less severe and less frequent. I never could put my finger on any given day and say here! is when it ceased.

 

[Freddd]

I just wonder how many people are doing this protocol far too soon in their recovery, and their bodies cannot cope with the detoxing so they need to prepare through improving the terrain first, otherwise they end up in trouble and who knows, cause serious damage.

Hi Brenda,

I wonder how many people wait far to long to begin their recovery with this protocol. If the intensity is too much with 1000mcg sublingual (150mcg or so into the blood) a person can do a crumb, or just the b-right which puts about 10mcg of methylb12 into the body. If it does more than hydroxyb12 that just demonstrates that not even 10mcg of methylb12 is being converted from hydroxyb12 no matter what theory says about that. For 1/3 of people hydroxyb12 doesn't work. For most of the rest it works poorly.

 

[imgeha]

Hi Nicola,

It's good to hear of your results like this so early in the course of things. Make sure you keep track of exactly what you are doing and what you further change. Sometimes results are from a difficult to achieve balance. It took me a couple of years, until after I had added in the critical cofactors except for methylfolate. It was shortly after I added the l-carnitine fumarate that the OT faded away as it became less severe and less frequent. I never could put my finger on any given day and say here! is when it ceased.

Hi Freddd

will I need to take these supplements for the rest of my life to keep these symptoms at bay, or is it a case of building up the levels of vitamins until the body has enough to draw on? I know that you need to continue taking the b12s because of your metabolism error, but does that apply to the rest of us?

thanks

Nicola

 

[Freddd]

Hi Freddd

will I need to take these supplements for the rest of my life to keep these symptoms at bay, or is it a case of building up the levels of vitamins until the body has enough to draw on? I know that you need to continue taking the b12s because of your metabolism error, but does that apply to the rest of us?

thanks

Nicola

Hi Nicola,

First there are water soluable vitamins which generally wash out of the body quickly, a few hours to a few days, which reflect mostly current intake. Then there are the fat soluable vitamins that stay in the body longer and reflect more of the average intake. On the average the body relies on daily intake of vitamins and other nutrients to maintain health. There is no savings bank as such.

Then there is the consideration that the body appears to need more during healing than for maintaining a body. Then there is the consideration of whether one is taking enough for optimum usage as opposed to the minimum amount need to prevent gross deficiency diseases. With vitamin C the amount needed to prevent scurvy appears to be 30-50mg/day or so. However the amount needed for good health, preventing strep and urinary tract infections and tissue formation may be 100 times as much, 3000-5000mg or so.

There is absolutely no research done with active b12s and active folate and other active vitamins trying to determine the levels for optimum health for all the vitramins and minerals. There is NO research done to determine how the usage of active b12s and folate affect the usage and needs for other vitamins.

I think that you make too much of my inborn errors of metabolism. For instance, I share the inability to adequately convert folic acid to methylfolate with at least 50% of the population. I share the inability to convert adequate amounts of hydroxyb12 and cyanob12 to active vitamins with somewhere from 30% who can't do it at all to near 100% that can't do it to sufficient extent to alleviate all related symptoms. I share the inability to adequately interconvert adb12 to methylb12 in the body with at least 30%. I share the inability to adequately convert methylb12 to adenosylb12 with at least 30%.

By the standards of having no active b12 responsive symptoms on a socalled "normal diet" there are probably 30% of folks my age who have that characteristic. It gets worse as humans age.

What about P-5-P and Pantetine as opposed to b6 and pantathenic acid? What percentage are impaired at converting these. There are defiinitely some or B-Right and other similar coenzyme b complexes wouldn't make a noticable difference for a lot of people as compared to many other b-complexes.

Then there are the people who have a CNS/CSF cobalamin deficiency as found in CFS/FMS/Alzheimer's with an unknown mechanism. Since these people appear to get ill because of it in the first place, this does not appear to go away. We are probably 50 years away from having an answer on that one, and the best therapy might be in intrathecal b12 injection once per week to once per 3 months depending upon the form of the problem.

My feet start degenerating again when I don't get at least one 10mg SC injection of mb12 daily and that has nothing at all to do with lack of interconversion. It appears to have everything to do with not being able to get mb12 into the CSF/CNS such as those with FMS/CFS/Alzheimer's have.


Then there are the unanswered questions. There is no evidence that the entero-hepatic b12 recirculation system becomes functional again after it is depleted.

Taking b12 in no way repairs the causes of having become deficienct in the first place. One of the most widespread causes of becoming deficient is decreased stomach acid as we age. A simple rejuvenation process would fix that for those over 50. Do you know of anywhere to get a rejuvenation process that restores one to the body of a 25 year old? I don't. How about all the folks under 50 who demonstrate deficiency by having a response to mb12/adb12/methylfolate etc. How do we fix all their problems?

The way I see it, supplementing can repair many of the damages caused by deficiency over time. However, there is no indication that it repairs the original causes, whatever they may be. Some can be found. Bacterial overgrowth and parasites can be repaired. No other causes including aging can be repaired.

I know that you need to continue taking the b12s because of your metabolism error, but does that apply to the rest of us?

I suppose then that the answer to your question is unless one can identify the actual cause and repair that actual original cause and all subsequent damage then active b12s and methylfolate need to be taken for a lifetime though maintenance dose may not need to be as high as healing doses but that is entirely unknown and may depend on how well certain damages are repaired and how functional one's entero-hepatic b12 reciruclating loop is. I would love to heal to the point that a single sublingual a day is sufficient, if it is possible. And the IMEs have nothing to do with that situation. Those things all healed years ago on sublingual quantities.

 

[imgeha]

Hi Freddd

Interesting, thanks. I guess the answer's yes, that we do need to continue supplementing once we are healed, albeit possibly it at lower levels. Many thanks for all your work and input here. It is giving me hope.

I am sure I will have more questions along the way...

Nicola

 

[Sunday]

Brenda, believe me, I did everything I could think of to build terrain - but I just kept losing ground. If I hadn't found this B12 protocol, I truly believe I would have sunk *into* the ground, because everything else either didn't work or was a temporary fix soon overwhelmed by actually doing something like a regular human being. Obviously it requires care and attention to follow this protocol, but if someone had discouraged me from trying it I might still be lying down dizzy, nauseated, and brainfogged, wondering how I was going to make a living and whether it was worth having a life.

 

[Sunday]

Freddd, thanks for your thoughtful and informative reply on B12 and other supplements and their actions. I'm still so new into the process that I'm concentrating on the healing part, but my brain has recovered enough that I can think into the future sometimes and I had started to wonder about this.

 

[Sunday]

Nicola, very encouraging to hear about your progress. As a person only one month into this, I look to you as a leader! Or at least a fellow traveler...

 

[imgeha]

Nicola, very encouraging to hear about your progress. As a person only one month into this, I look to you as a leader! Or at least a fellow traveler...

Not a leader. I'm feeling my way through this, having a bumpy ride and making mistakes, inevitably. Fellow traveller, for sure!!

My progress may be because we are at different stages of our recovery. I had my amalgams out 3 years ago, and have completed 100 rounds of frequent low-dose chelation a la Cutler protocol. This has significantly reduced my body burden of mercury, and has prepared my body for getting methylation going. I am continuing to chelate whilst doing the active B12 protocol, and believe I have at least another 2 years of ALA chelation ahead.

Just to report my observations on my journey so far. I have found that each 1mg increase in the mb12 will bring pronounced detox, mostly with a Herx reaction (nausea, pounding heart, diarrhea) followed by feeling much better and an improvement in symptoms. Had another Herx day yesterday, 2 days after increasing the mb12 from 4mg to 5mg. Today, my head is clear, the OT improved, and I am feeling more 'normal'. Sleep is also improving and the depression is lifting, but this may simply be from feeling better and getting some improvement. Anyway, I shall carry on. Currently taking 2 B-right, 2 adenosyl B12 and 5mg mb12 a day, along with the supporting supplements, and my usual adrenal and thyroid support.

It's not an easy ride, and fortunately I work from home while the kids are at school, so if I can't function well some days, it doesn't matter so much. But the fact that my symptoms are aggravated and then improved while doing taking the active B12s suggests that I am doing the right thing, How far it will take me to full recovery I don't know, but I am going to review after six months, and I suspect I will be continuing beyond that.

I'll share my journey and questions here.

Best

Nicola

 

[jenbooks]

b12 and folic acid supplements tied to higher incidence of cancer

I have seen other research on folic acid in particular. It looked to me from that research that prevention was impt but once cancer was underway folic acid could stimulate it. Who knows. I know one possible answer is that the forms used were not ideal but I think this bears considering--a cautionary aspect.
---

Heart patients in Norway were more likely to die from cancer if they took folic acid and vitamin B12 supplements compared with those who did not take them, Norwegian researchers said on Tuesday.

The team found lung cancer rates were 25 per cent higher among those who took the supplements compared with the general population, but overall cancer deaths and deaths from other causes were also higher in the supplement group.

They said folic acid given over a period of more than three years may feed the growth of cancers that were too small to be detected otherwise, and raises new questions about the benefits of fortifying foods with folic acid.

"Our results need confirmation in other populations and underline the call for safety monitoring following the widespread consumption of folic acid from dietary supplements and fortified foods," Dr Marta Ebbing of Haukeland University Hospital in Bergen, Norway, and colleagues wrote in the Journal of the American Medical Association.

Folic acid, a B vitamin, helps the body make healthy new cells, and getting enough of it is crucial for women before pregnancy to prevent serious birth defects like spina bifida.

FORTIFIED FLOUR

For this reason, many countries, including Australia, fortify flour and grains with folic acid. But recent studies have raised concern that folic acid may raise the risk of cancer.

Because there is no folic acid fortification of foods in Norway, the study population offered a good way to test for the effects of folic acid on cancer risk.

Ebbing and colleagues analysed data from two large trials involving people with heart disease who took folic acid and vitamin B12 supplements to try to lower levels of the amino acid homocysteine, which has been linked with heart attacks and strokes.

The three-year studies failed to show a heart benefit, but the team continued to follow patients for over three years to see if the supplements had any effect on cancer risk.

When they combined the findings from the two trials for a total of more than 6800 patients, they found those who got folic acid and vitamin B12 supplements had a higher risk of being diagnosed with cancer, of dying from cancer and of dying from any other cause.

"These findings were mainly driven by increased lung cancer incidence," the team wrote.

They said since the study took place in a population that is normally not exposed to folic acid, the findings raise concerns about the long-term effects of folic acid supplements.

The study is not the first to suggest folic acid may increase a person's risk for cancer. A study in March suggested that folic acid supplements raise the risk of prostate cancer. And a study in April suggested that fortifying foods with folic acid raised the risk of colon cancer.

In animal studies, the effects of folic acid have been inconsistent, with some studies suggesting the supplements protect normal colon tissue while enhancing the growth of abnormal tissue.

The team found no link between colon cancer risk and folic acid and said this may suggest the dual effects of the supplements on this cancer cancel each other out.

http://www.smh.com.au/lifestyle/wellbeing/supplements-tied-to-cancer-20091118-il9j.html

 

[Freddd]

I have seen other research on folic acid in particular. It looked to me from that research that prevention was impt but once cancer was underway folic acid could stimulate it. Who knows. I know one possible answer is that the forms used were not ideal but I think this bears considering--a cautionary aspect.
---

Heart patients in Norway were more likely to die from cancer if they took folic acid and vitamin B12 supplements compared with those who did not take them, Norwegian researchers said on Tuesday.

The team found lung cancer rates were 25 per cent higher among those who took the supplements compared with the general population, but overall cancer deaths and deaths from other causes were also higher in the supplement group.

They said folic acid given over a period of more than three years may feed the growth of cancers that were too small to be detected otherwise, and raises new questions about the benefits of fortifying foods with folic acid.

"Our results need confirmation in other populations and underline the call for safety monitoring following the widespread consumption of folic acid from dietary supplements and fortified foods," Dr Marta Ebbing of Haukeland University Hospital in Bergen, Norway, and colleagues wrote in the Journal of the American Medical Association.

Folic acid, a B vitamin, helps the body make healthy new cells, and getting enough of it is crucial for women before pregnancy to prevent serious birth defects like spina bifida.

FORTIFIED FLOUR

For this reason, many countries, including Australia, fortify flour and grains with folic acid. But recent studies have raised concern that folic acid may raise the risk of cancer.

Because there is no folic acid fortification of foods in Norway, the study population offered a good way to test for the effects of folic acid on cancer risk.

Ebbing and colleagues analysed data from two large trials involving people with heart disease who took folic acid and vitamin B12 supplements to try to lower levels of the amino acid homocysteine, which has been linked with heart attacks and strokes.

The three-year studies failed to show a heart benefit, but the team continued to follow patients for over three years to see if the supplements had any effect on cancer risk.

When they combined the findings from the two trials for a total of more than 6800 patients, they found those who got folic acid and vitamin B12 supplements had a higher risk of being diagnosed with cancer, of dying from cancer and of dying from any other cause.

"These findings were mainly driven by increased lung cancer incidence," the team wrote.

They said since the study took place in a population that is normally not exposed to folic acid, the findings raise concerns about the long-term effects of folic acid supplements.

The study is not the first to suggest folic acid may increase a person's risk for cancer. A study in March suggested that folic acid supplements raise the risk of prostate cancer. And a study in April suggested that fortifying foods with folic acid raised the risk of colon cancer.

In animal studies, the effects of folic acid have been inconsistent, with some studies suggesting the supplements protect normal colon tissue while enhancing the growth of abnormal tissue.

The team found no link between colon cancer risk and folic acid and said this may suggest the dual effects of the supplements on this cancer cancel each other out.

http://www.smh.com.au/lifestyle/wellbeing/supplements-tied-to-cancer-20091118-il9j.html

Hi Jenbooks,

The study on which this article is based used Cyanob12, folic acid and b6 if it's the one I'm thinking of that was studying heart disease and found some cancer variations; all inactive forms of the the vitamins in question. The cyanob12 can actually block active b12s from functioning according to some research and certainly does not function as active b12. Because of all the factors involved I can't give it any credibility at all as saying anything at all about active b12s and methylfolate. Cyanob12 can make many deficiency based symptoms worse over time. As methylb12 deficiency is being invesatigated as a cause of cancer in at least half a dozen varieties due to faulty DNA transcription many questions are raised. Cyanob12 can be dangerous and is totally different in effect from methylb12/adenosylb12 and folic acid is at best of limited utility.

 

[jenbooks]

Hi Freddd. Maybe so. But I think there have been a few studies that indicate to me that supplements may have a dark side. When I looked at the last one I concluded that probably these supplements are good for prevention, but can stimulate a malignant process once it is underway (it might be somewhat indolent or in early stages, and then growth stimulated). These are cells, too, after all, and they have nutrient requirements, too.

 

[Freddd]

Hi Freddd. Maybe so. But I think there have been a few studies that indicate to me that supplements may have a dark side. When I looked at the last one I concluded that probably these supplements are good for prevention, but can stimulate a malignant process once it is underway (it might be somewhat indolent or in early stages, and then growth stimulated). These are cells, too, after all, and they have nutrient requirements, too.

Hi Jenbooks,

But I think there have been a few studies that indicate to me that supplements may have a dark side

There have been such studies. So far 100% of them are based on inactive cobalamins and inactive folate and inactive b6 etc. I would very much like to know myself what the story is based on the active vitamins. Millions of people are damaged by the inactive vitamins instead of the active ones in hundreds of ways. Maybe increase in certain cancers is one of those ways. This unfortuantely is unknown until the studies are repeated with active vitamins. It's possible that Alzheimer's is caused or contributed to by inactive vitamins but that will never be known until the right research is done.

but can stimulate a malignant process once it is underway (it might be somewhat indolent or in early stages, and then growth stimulated). These are cells, too, after all, and they have nutrient requirements, too

There are potential problems and unintended consequences of virtually everything. The problem is that data produced by cyanob12 based studies may in many cases be opposite from mb12 based studies. The cb12 may cause the very cellular mutations needed for cancer. Colon cancer for instance may be caused by deficiency. There are studies going on currently of the cancer fighting properties of mb12.

All I am trying to say is that any study based on cyanob12 is totally suspect in it's results as being in any way predictive of mb12/adb12 results. They are radically different in effect. They are so different as to be worse than useless in that in many cases they will be outright misleading. For instance, cyanob12 decreases SAM-e and methylation capacity leading to a methylation depletion, methylb12 increases SAM-e and methylation capacity. That by itself has a vast number of effects. Methylb12 is neuro-protective to quit a few toxins, cyanob12 is not so protective and can even be damaging in certain instances. Methylb12 detoxifies and removes the cyanide in bodies of smokers and others. Cyanob12 increases the cyanide load.

Cyanob12 is the waste version for preferred rapid excretion of b12. It's a post detox version.

Accumulated folic acid is suspect in a number of things as well as NOT functioning as methylfolate. Methylfolate does not cause an accumulation of unprocessed folic acid leading to whatever problems that leads too.

In both these cases you have negative effects casued by the inactive substances themselves as well as a lack of proper functionality. There is a double whammy there. And since inactive cobalamins may even block actiove ones in some ways, a potential triple whammy.

Fermented manure has a much higher b12 level then fresh manure. However I do not suggest eating manure. It has a lot of concentrated toxins being removed from the body. It's the waste version of food. It has more negative effects than positive ones.