Correct me if I am wrong. Please - Pernicious Anaemi...

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Correct me if I am wrong. Please

WIZARD6787 profile image
25 Replies

There are four forms of cobalamin commercially available for injection.

Cynocabalamin which in tests of a non cobalamin deficient human has been tested for retention times. There is no comparative testing of the efficacy of Cynocabalamin versus other forms including no test of the effect on symptoms. No testing of the retention times in a cobalamin deficient body.

Hydroxocobalamin is retained in a non cobalamin human body longer than Cynocabalamin. Conjecture is that this is positive without regards to consideration that the body may use the Cynocabalamin more effectively and therefore is preferable. No testing. That it is "artificial" and therefore may not be as effective is not credible. Conjecture

Methyelcobalamin occurs in the human body and may be more ""bioavialbe" Note: bioavialbe is not a scientific measurement and only means that it is used in a biological process.

Adenosylcobalamin is the redheaded stepchild of forms of cobalamin. It does occur in the human body.

The testing of retention times is a measurement of the total cobalamin in the urine and does not include what the cobalamin is attached to or has been measured in a cobalamin deficient body.

Conclusion the efficacy of the commercial forms of cobalamin or combination of the different forms in the cobalamin deficient body is unknown and not a subject that has been studied.

There are currently 25 known processes in which the human body uses and each of these process if not functioning as intended will cause different issues.

The limitation of 1mg of hydroxocabalamin EOD as being the most robust treatment that is effective is based on "fashion" not science and has been definitively proved to be in error by those on this forum.

That any prodacol that "works" does not equate to the most benificial.

I personally made the error of assuming that more hydroxocabalamin was more effective for me because of the volume. It very well could be it was the frequency that caused the increase in effectiveness.

The most important discovery on this journey was that my peripheral nephropathy was caused by B6 deficency which is rarely diagnosed and often attributed to cobalamin deficiency in error although the pain may be less if treated with B12. I injected B6 at first and now use oral Pyridoxal 5 Phosphate. There is no definitive test for B6 and they only way to find out if the cause of the pain is B6 is to do a trial. I could not think straight in that pain.

Seems to me that the methodology used to measure and evaluate medication is applied to supplementation and is failing to some degree as supplementation is not equivalent to medication.

I am aware that I write from a place where I am not in distress and what I write would have had meaning when I was in the throes of cobalamin deficiency.

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WIZARD6787 profile image
WIZARD6787
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25 Replies
MorningMist profile image
MorningMist

I started with cyanocobalamin and found that it gave me a huge boost in energy and mood but it didn’t seem to last long. I concluded from reports that hydroxocobalamin would be superior due to the retention and more natural form argument.

After three years of injections I’m now not sure that it is more effective despite being retained by the body for longer, evidenced by off the scale test levels. I am considering using cyanocobalamin but more frequently than before, to compare.

Technoid profile image
Technoid

Hi Wizard,

To my knowledge B12 is only involved in 2 metabolic processes, explained here

healthunlocked.com/pasoc/po...

The only way I can see the number approaching 25 is if you tried to count everything touching the methionine/folate and krebs cycles but that seems a bit of an arbitrary expansion.

Not to knock the importance of B12 as the 2 processes in which its involved are vital to life and their dysfunction causes a cascade of disastrous problems.

WIZARD6787 profile image
WIZARD6787 in reply to Technoid

Hey Technoid and Palmier,

In general discussion by some authors I have come across "There are two main processes used by the body and B12, there are others but two main ones." I heard as far as we know their are two main processes. I also considered that current treatment treats anything associated with B12 the same way which I find suspect.

Specifically I came across " Perhaps this is because the synthesis of cobalamin is so complex – involving in excess of 25 steps, which can proceed either aerobically (cob genes) or anaerobically (cbi genes)"

In this article ncbi.nlm.nih.gov/pmc/articl...

Although the paper is about genetic disorders the science of the steps I found to be credible. I do not expect to be able to analyze which steps my body does not do well and come up with any specific treatment rather what I need to do is come close enough that my body can better adjust. I believe my body has been adjusting all along and that is how the body works to deal with the many nutritional needs in very varied environments across the globe.

Thank you for your reply it is appreciated. This forum is the only way that I can be fact checked. Although my treatment is my responsibility as are the results I do value that someone may prove that my logic has faults. Well I know it has faults just like everyone else, specific flaws might be corrected.

I will change my use of process to steps.

Perhaps a better title would have been Fact/Understanding Check Please.

Technoid profile image
Technoid in reply to WIZARD6787

ah. I understand now. B12 is only synthesized by certain bacteria and archaeon, but not by plants or animals. So these steps do not take place in the human body but in the bacteria that synthesize B12. Some animals can absorb the B12 that bacteria generate in their gut but we unfortunately cannot due to our B12 generating bacteria being located past the absorption site.

WIZARD6787 profile image
WIZARD6787 in reply to Technoid

>>So these steps do not take place in the human body but in the bacteria that synthesize B12.

As I read it the steps referred to do take place in the body and if they do not or not sufficiently than it will cause issues.

I am liking the term B12 Pathway Disorders.

Technoid profile image
Technoid in reply to WIZARD6787

The full context in the referenced paper:

"Interestingly, although cobalamin utilisation is distributed widely among phyla, cobalamin synthesis seems limited to only a select few Archaea and Eubacteria. Perhaps this is because the synthesis of cobalamin is so complex – involving in excess of 25 steps, which can proceed either aerobically (cob genes) or anaerobically (cbi genes) (Ref. 57). Therefore, although mammals and other higher organisms require vitamin B12 for life, they ostensibly acquire it from their prokaryotic counterparts. "

Humans do not (cannot) synthesize B12. Only "Archaea" (a type of single celled organism) and eubacteria (certain kinds of bacteria) can synthesize B12. The 25 steps required to synthesize B12 only happen in these organisms. Although humans have such B12 synthesizing organisms in the colon, this is past the point where B12 is absorbed (the terminal ileum of the small intestine), so we cannot reap the benefit of this. So although you are technically correct that the 25 steps occur inside the human body, they occur inside the bacteria of the colon and this synthesis is therefore of no consequence to human absorption or metabolism of B12.

When we receive B12 through injections, food or supplements, the B12 has already been synthesized by bacteria through the 25 steps (thats how it was created), and these do not then re-occur during the process of human B12 absorption and metabolism.

WIZARD6787 profile image
WIZARD6787 in reply to Technoid

Awesome! Thank you so much.

I understand now and how I made my error. I would not likely found my error and been able to correct my understanding without your help.

On to my next error or errors. 🙂

Wwwdot profile image
Wwwdot in reply to Technoid

Hi Technoid

Ditto what Wiz has said. I am in awe of your technical knowledge and more importantly your ability to write so a biologyphobe like me can understand!

🤗🤗🤗

palmier profile image
palmier

Like Technoid, I wonder about the 25 processes. I know there are two known b12-containing enzymes in the human body, but I suppose they may each be important for several processes.

Gambit62 profile image
Gambit62Administrator

Not sure what you mean by

There is no comparative testing of the efficacy of Cynocabalamin versus other forms

There have been comparative studies of retention of cyano versus hydroxo which showed that hydroxo was, on average retained twice as long. However there were huge variation in retention across the population of the study which showed that applying this average as a general rule would be problematic but that has often been overlooked and has become the general maxim that hydroxo is retained twice as long so injections will be needed less frequently.

WIZARD6787 profile image
WIZARD6787 in reply to Gambit62

Hey Gambit,

Thank you for that! I was familiar with that study and the one that shows less retention as the amount administered increases. I was not aware of the analysis that it was concluded injections would be needed less often.

I see the retention analysis as being accurate and scientific. However I see it as a form of B12 is injected and how long that stays in the body does not account for what form of the B12 is when excreted in the urine or what happens in the body from injection to urination to not be fully understood. And the design of treatment and to be based too heavily on retention times for no scientific reason.

It is possible that hydroxo is retained in the body as it is not utilized as well as cyano .

I was specifically referencing is there are no tests based on reduction of symptoms of the different forms, combinations or dosage amounts. That I am aware.

EyesWideNow profile image
EyesWideNow in reply to WIZARD6787

Can I say also that after ‘donating’ the Methyl, on its return journey isn’t it acting as a detoxifying agent so the form of B12 excreted would be extremely interesting too-for me anyway?👍🥰

WIZARD6787 profile image
WIZARD6787 in reply to EyesWideNow

Funny thing about information is that you don't know what use it is going to have until you have it.

EyesWideNow profile image
EyesWideNow in reply to WIZARD6787

Couldn’t agree more and sometimes it is in asking the question of what hasn’t been fully researched as opposed to what has that gives you a better picture of how, why or by who the information has been provided and to what purpose? I know-ever the cynic 🥴

Parlay profile image
Parlay

Out of interest what were your b6 deficiency symptoms please?

WIZARD6787 profile image
WIZARD6787 in reply to Parlay

ods.od.nih.gov/factsheets/V...

ncbi.nlm.nih.gov/pmc/articl....

I do not remember the specific symptoms I had that I used to determine if I was B6 deficiency. It was three years ago. I remember concluding that I might me B6 deficient and if I was the medicial personal I was paying were not capable of even considering it. I also knew they only way to know was a trial. I started injections and within four hours had relief from the pain of peripheral nephropathy. It was amazing.

I now use oral as I can not find P5P to inject and it works. I have discontinued it three times and the pain returned.

palmier profile image
palmier in reply to WIZARD6787

Interesting. Approximately how much b6 (as P5P) do you find necessary?

WIZARD6787 profile image
WIZARD6787 in reply to palmier

4 mg twice a day liquid in juice.

EyesWideNow profile image
EyesWideNow

I know exactly what you are saying? There’s a massive lack of knowledge/understanding in a condition so crucial to health that most of the important work happened before the ‘50’s when scientific ability was thought to be inferior compared to current times. If they still can’t get the assays accurate in the relevant limits then I don’t know why I’m annoyed at the lack of clarity in the dosing and types of cobalamin to best take?

The upshot for me is to tread carefully and trial test things to find out what suits and shows benefits. I try to do the trials when I’m well rather than wait for being ill or in pain as the fear of feeling worse is sometimes overwhelming too. Educated, self administered ‘Guinea-piggery’ 😂😂😂

WIZARD6787 profile image
WIZARD6787 in reply to EyesWideNow

The lack of credible information was maddening and I was quite mad to begin with. 🙂

I am more OK with it now I am self treating at a level that is not yet known.

Successful Guinea-piggery.

EyesWideNow profile image
EyesWideNow in reply to WIZARD6787

Well done you for using you noddle and your daring do 👍😂🥰

deniseinmilden profile image
deniseinmilden

As always, very, very helpful and clearly put. . I know I have more B vitamin deficiencies besides B12 and B9 and am doing self-trialling to see what others, specifically, are a problem. It's really interesting, isn't it!

Thank you!

WIZARD6787 profile image
WIZARD6787 in reply to deniseinmilden

An error I made was not understanding that my children knew how close to death I was and I nor the doctors did. They were terrified for me and I did not get that.

I told one child it is actual quite fascinating. She replied "I find nothing about this fascinating." I can count on my fingers the number of times my children have rebuked me. Oops.

I did find it all loathsome at first I now find it interesting.

deniseinmilden profile image
deniseinmilden in reply to WIZARD6787

It's lovely to hear you have people who care so much about you! Great!

EyesWideNow profile image
EyesWideNow

hello, I am afraid that this message might not get through as it would seem an awful lot of things are being deleted?! 🫢

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