B-12 - The Hidden Story

[arx]

topghetto:

http://forums.phoenixrising.me/index.php?threads/jarrow-did-it-change.18154/

 

[topghetto]

Thank you arx,

What I noticed in the thread which you posted was people were talking about not getting cotton wool in their bottles, and their bottles were made of plastic. In my case, my bottle did include the cotton wool, and it was also made of glassy type material. I maybe lucky?

Farouk

 

[arx]

Can't say, Farouk. I've tried only one bottle of Jarrow, and that seemed like a plastic bottle to me. Maybe you have one of the older batches..

 

[topghetto]

Hi Ark,

I am guessing you have also had a bad experience with using the Jarrow b12?

 

[arx]

Hi Ark,

I am guessing you have also had a bad experience with using the Jarrow b12?

Hi topghetto,

I started off with the 1 mg NOW Foods MB12. After finishing one bottle of NOW, I tried Jarrow as it was highly recommended by almost everyone on all B12 related forums. I did not experience the neurological activity and startup with Jarrow as I did from the NOW brand.I got to know that the more intense symptoms one gets from MB12, the more potent it is. I just got a bad headache from Jarrow. So I went ahead with NOW. Meanwhile the thread about Jarrow had started and I didn't try it again.

 

[topghetto]

Ah, I see. Hopefully the Jarrow will do me some justice but, if not, I will definitely give the NOW b12.
I was wondering, have you done any of the B12 protocols? If so, which one? And was it beneficial? I ask this because I suffer from major brainfog and it is totally annoying. Derealisation sums it up


Farouk

 

[greenshots]

This is only my opinion but I wouldn't start all of them at once anyway, its a hard hit on the pathway. My doc is all about low and slow so I would start them one at a time and after some time goes by see how you do. If you are still not progressing like you want, then maybe buy the neurological vits. I'm on way more stuff then what you listed above but never even started the neuro vit at HHI and I'm at 90-95% so I don't think its a deal killer. The SMP is a guideline of what you might want to start but not necessarily all at once. I think its smarter to layer stuff in one by one instead of having a hellatious detox.

 

[greenshots]

this is why my doc likes having the actual defect panel done instead of the serum test. The test below changes based on life stressors, illness, and more but the genes don't. She said she only orders this test if the person isn't responding to treatment as expected but otherwise, doesn't use the resources up. I guess she used to order all of them but it really didn't make much of a difference for 90% of her patients. I guess this is where scientists differ from the clinicians. They're looking for the proof but when you see something all the time clinically instead of in theory, you don't need the reassurance as much.

Alright folks... So I finally got my methylation pathways panel results back... And, as per usual for me, no sounding alarms with anything. Fantastic news. Ha. Does any of the following shed any light on anything, or am I just out another $325? Thanks.

MTHFR: Heterozygous A1298C

AMINO ACIDS IN PLASMA

Glutathione(oxidised) 0.47

ref. range: 0.16 - 0 . 5

Glutathione(reduced) 3.4

ref. range: 3.8 - 5.5

Derivates

S-Adenosylmethionine (RBC) 214

ref. range: 221 - 256

S-Adenosylhomosysteine (RBC) 48.1

ref. range: 38.0 - 49.0

FOLIC ACID DERIVATES

5-CH3-THF 10.0

ref. range: 8.4 - 1 2 . 6

10-Formyl-THF 2.5

ref. range: 1.5 - 8 . 2

5-Formyl-THF 1.20

ref. range: 1.20 - 1 1 . 7 0

THF .45

ref. range: 0.60 - 6,80

Folic Acid 9.9

ref. range: 8.9 - 24.6

Fo l i n i c A c i d( WB) 8.7

ref. range: 9.0 - 35.5

Folic Acid, active (RBC) 396

ref. range: 400 - 1500
NUCLEOSIDE
Adenosine 23.6
ref. range: 16.8 - 21.4

 

[topghetto]

Angela,

Thank you so much for the detailed information. I will definitely start slowly (which I have been). So far, I have been taking only the Methyl B12, and sometimes the Lecithin, but soon, I will introduce the folinic acid. I am kind of scared haha. If I get ill, that means it is working, right? due to the detox, and toxins being released into the bloodstream.

Farouk

 

[topghetto]

Angela,

One more thing, how long did it take you to notice some improvements? Like, how long did it take you to get 90%?

Thanks,

Farouk

 

[greenshots]

My story is entirely different, I was in the ICU for almost a month in a near comatose status so it took 3 years to fight my way back. of course, I wasted alotta time with other docs so that soaked up my time and money too. The final year was with a different doc and thats when I made most of my progress.

 

[topghetto]

I'm really sorry to hear that. I am glad you are alright now though.
Thank you for the information.

Farouk

 

[SanDiego#1]

I moved Freddd's spectacular post on B-12 from the story section to here in order to focus on it more fully. Many, many people try B12 for ME/CFS but few are cured. Freddd was actually cured when he stumbled upon the right type of B12 for him. This sparked an extensive examination of why one brand of B12 could have such strikingly different results than another.

He started in on why B12 doesn't always produce good results in ME/CFS.

Reasons B12 doesn't work for a person

• They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
• They take an inactive b12, either cyanob12 or hydroxyb12. The research “validating” their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing.
  
  They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesn’t work, oh well, that’s the accepted therapy. There is no “dose proportionate” healing with these inactive b12s because it all has to go through this keyhole.
• Some people are totally incapable of converting these to active forms because they lack the enzyme.
• They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtionback to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry. (EDITOR - let your sublingual B-12 dissolve in your mouth!)
• Wrong Brand - Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
• For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesn’t work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosyl12from sublinguals can ride along with injected methylb12.
• They don’t take BOTH active b12s.
• They don’t take enough active b12s for the purpose, espcially amounts needed to penetrate CSF by diffusion.
• Lack of methylfolate.
• Lack of other critical cofactors.
• Lack of basic cofactors.
• Taking glutathione or glutathione generating cofactors that induce an active b12 deficiency.

So why is this the case? First, most people consider b12 deficiency to be a unitary thing. it isn't. There are 4 distinct and different b12 deficiencieseach with it's own set of characteristics, and a person can have any combination of the 4. In addition is the definition of "deficiency" itself.

In CFS/ME/FMS it has been shown that people in some studies had a specific kind of b12 deficiency, they had a cobalamin deficiency in the cerebral spinal fluid, the same as found in Alzheimer's. As it was "cobalamin" specified, there is no definition as to whether it is methylb12 deficiency, adenosylb12 deficiency or some combination of both. Each type of active b12 has it's own deficiency symptoms. The results of shutting down the neuronal mitochondria are different from loosing myelin or slowing down impulses or lacking a wide variety of neural transmitters or who knows what other effects. Unless a CSF draw is done, there is no way to detect these deficiencies. There are no standards of what is "deficient" even if a draw is done. Pragmatically these deficiencies can both be detected and differentiated. For a variety of reasons I won't go into now, I could make a case for ME being a CSF deficiency of largely methylb12 specifically for instance.

It is not known what mechanism reduces coblamins in CSF to significantly lower levels compared to blood serum levels, in some people, from 50% to 75% lower compared to various control groups in different studies. As all 3 of my children have all the same problems I do chances appear good that it is genetic. Producing healing in this sector is sometimes the most challanging depending upon the other, mostly genetic, challenges a person has.

Basic Challanges, some causes unknown

• Can't absorb b12 for a wide variety of reasons including IF insufficiency (Pernicious Anemia) of either genetic or autoimmune causality.
• Can't bind b12s for transport
• Genetic Challanges
• Decreased CSF cobalamin levels - hypothetical cause, confirmed problem
• Lacking Enzyme to convert methylb12 to adenosylb12 - confimed, named cobalamin letter disease
• Lacking Enzyme to convert adenosylb12 to methylb12 - confimed, named cobalamin letter disease
• Lacking Enzyme to convert cyanocobalamin to methylb12 or adenosylb12 - confimed, named cobalamin letter disease
• Lacking Enzyme to convert hydroxycobalamin to methylb12 or adenosylb12 - confimed, named cobalamin letter disease
• Lacking Enzyme to convert glutathionylcobalamin to methylb12 or adenosylb12 - hypothetical cause, some evidence for problem
• Lacking enough enzyme(s) to convert folic acid to sufficient methylfolate, - confirmed cause

Each of those can be overcome. On top of the genetic reasons, the methylb12 generated by bacteria is not all the same and some bacteria breeds may generate superior methylb12. This is totally unexplored but may account for some brand differences.

Of 10 brands of methylb12 systematically tested, 2 rated 5 stars with 5 hypersensitive testers. They were Enzymatic Therapy 1mg, and Jarrow Formulas 1 mg and 5mg. In addition Country Life Dibencozide
(adenosylb12) also rated 5 stars. One brand of 5mg methylb12 rated ZERO stars, completely ineffective in all testers. The other 7 brands rated 1-3 stars.

The sublingual b12s must be retained under the upper lip or tongue for 45 minutes to two hours for effectiveness with verified absorbtion ranging from 15% to 25% with urine colorimetry and by effect.

Solgar Metafolin (methylfolate) is one of two brands available and is superior to folic acid in every way.

Jody, I spent more of the years learning what didn't work than what did. I had some serendipidous events and some outright incredible luck and some terrible setbacks. I don't do things by halves. I personally appear to lack all of those enzymes for interconversion of forms of b12 and folic acid for instance and had all four b12 deficiencies. When I find something that works 5% of the time I find out why it doesn't work 100% of the time. That's engineering. Because my body is hypersensitive to these changes it's very much like debugging software and I can know sometimes in hours or less what takes others weeks or months to find out. Sometimes I'm just too bullheaded to get the message and keep on past all reason until it is clear. The information I am presenting here is a distillation of decades of experience and 6 years of active experimentation on myself and children. And I always do much reading to find why I should try some things or why they worked/didn't work afterwards.


End of first part of explanation. More to come.

Are you talking about Folic acid Injectiable or oral sub lingual or tab? I take 1ml of Folic injectable with B-12 Cyana- plus B-complex in 1cc syringe and I find it works wonderful if I have the B-Complex with it. Without it it does not work for me. Are you also talking about Solgar oral ? Very interesting as I have been on Cyana for 20 years. American Regent brand. Now I switch from Hydroxy to Cyana. One seems in my case to compliment the other. These are sub q inj.

Interesting
San Diego

 

[Cindi]

Hi all

I wonder if anyone has an idea on why i feel much better on adenosylcobalamin than hydroxycobalamin?It is hard to describe in which ways specifically i feel better but i feel much better overall and my mood also gets higher.I wonder if i have some defect in converting hydroxy form to adenosyl form and thus have adenosyl form deficiency in body. Thanks.

 

[SanDiego#1]

Hi all

I wonder if anyone has an idea on why i feel much better on adenosylcobalamin than hydroxycobalamin?It is hard to describe in which ways specifically i feel better but i feel much better overall and my mood also gets higher.I wonder if i have some defect in converting hydroxy form to adenosyl form and thus have adenosyl form deficiency in body. Thanks.

I have no idea- however, I will ask my CFID Physician. I am talking to him next week.
Great Question. I am taking 3 different one. Hydroxy, Methyl, and Cyana. Alternating.

San Diego#1

 

[Cindi]

I have no idea- however, I will ask my CFID Physician. I am talking to him next week.
Great Question. I am taking 3 different one. Hydroxy, Methyl, and Cyana. Alternating.

San Diego#1

Thanks so much!

 

[Xara]

Sorry if this has been mentioned before, I didn't read through the whole 122 pages.

I feel like the active B12 protocol is increasing my histamine. I get high histamine symptoms, like swelling and itching in the nose, head pressure, IBS, tingling, insomnia aso. I feel a lot better if I take an antihistamine, but I don't want to be doing that indefinitely. Did anyone else experience this? Is there a solution? Am I missing something to break down the histamine?

Hi Adreno,
I found this post of yours by googling 'head pressure' and 'b12'. I have recently started with first metafolin and then mb12, and since I introduced mb12 I am experiencing an unpleasant pressure around my nose, my eyes, my ears and today a pressure around my throat too. Not painful but simply unpleasant, as if it will burst It's worsening in the evening. I have had some light tingling in my feet and hands as well for a couple of days, especially at night, but that has diminished.

I have read page 122 and 123 of this thread but not all those till 133, sorry if this has been addressed in one of the latest pages.
Could you help me out? Do you remember whether there was anything you changed, the dose for instance, or did you take something additional to make those symptoms go away? Or was time all that was needed?
Thanks in advance.

PS I am taking potassium too, have increased that a bit this week.

 

[adreno]

Hi Adreno,
I found this post of yours by googling 'head pressure' and 'b12'. I have recently started with first metafolin and then mb12, and since I introduced mb12 I am experiencing an unpleasant pressure around my nose, my eyes, my ears and today a pressure around my throat too. Not painful but simply unpleasant, as if it will burst It's worsening in the evening. I have had some light tingling in my feet and hands as well for a couple of days, especially at night, but that has diminished.

I have read page 122 and 123 of this thread but not all those till 133, sorry if this has been addressed in one of the latest pages.
Could you help me out? Do you remember whether there was anything you changed, the dose for instance, or did you take something additional to make those symptoms go away? Or was time all that was needed?
Thanks in advance.

PS I am taking potassium too, have increased that a bit this week.

Hi Xara, it's a long time and I don't remember exactly. I do know I was taking too high doses at the time. I don't seem to get the histamine problems anymore, but I am not sure what caused the change.

 

[Xara]

Em, I don't think I am taking too high doses too... Am i? mB12 2mg a day, potassium 5x 99 mg, metafolin 400mcg/day, and as of today: aB12 2.5 mg/day.
O well, I'll see how things will develop. Maybe I'll increase the potassium with one or two tablets again one of these days.

Thanks Adreno, appreciated your answer.

 

[adreno]

Em, I don't think I am taking too high doses too... Am i? mB12 2mg a day, potassium 5x 99 mg, metafolin 400mcg/day, and as of today: aB12 2.5 mg/day.
O well, I'll see how things will develop. Maybe I'll increase the potassium with one or two tablets again one of these days.

Thanks Adreno, appreciated your answer.

That would be too high doses for some, me included. I take only 1mg methylb12 and no adb12.