What If?: Critical thinking often... - Pernicious Anaemi...

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What If?

WIZARD6787 profile image
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Critical thinking often incorporates what if questions.

What if current understanding of how to treat B12 is overly influenced by what was the best treatment available 60 years ago when cynocabalamin first synthesized and only available in injections which at the time meant a doctor involved?

Cynocabalamin was then manufactured in a pill form and it is reasonable to assume that was a disaster and we are still seeing the effects of doctors using oral administration.

What if the reversing out and the body's using up co factors is the result of starving the body of B12 except for 6 hours a day or every other day?

What if sublingual is more effective taken every 6 hours than an injection every other day or even once a day?

Now the big question is what reason is there not to try a sublingual trial of every 6 hours from when I get up until I go to sleep at night. Actually the question is 4 hours 6 hours is just being conservative for no reason.

The only risk I can think of is that it may overtax my body and I heal too fast . I feel I have enough experience to evaluate that and make any changes warranted.

There is also the risk of unintended consequences as with anything.

I have experience with many trials of different forms and administration of B12

I have an ideal situation in that I have little pressure and freedom to deal with any untold reactions. Other than I am in the UK and not the USA.

I feel better than I have in years after administering back to back sublingual doses yesterday. So emotionally I want more of it.

They way I might screw up is to try and do to much to prove I am OK when I am not.

I am going for it. Every 6 hours when I am awake.

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WIZARD6787
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clivealive profile image
clivealiveForum Support

Fifty-one years ago in May 1972 I was given two options cyanocobamalin injections every four weeks or raw liver three times a day for the rest of my life.

Using your hypothesis perhaps I should try the raw liver,

P.S. I'm still on cyano but now every three weeks and I'm still "clivealive" at 81 years of age.

I wish you well  WIZARD6787

WIZARD6787 profile image
WIZARD6787 in reply toclivealive

Thanks for the reply. I wish you well Clivealive

etreas profile image
etreas

Hi Wizard6787, I suspect the crux of the issue you raise lies more in intra-individual physiology rather than outdated science. We now have a decent understanding of the factors contributing to b12 deficiency and the proper therapeutic treatments (though medical professionals don’t always follow current guidelines). That's fantastic if you’re responding well to sublingual supplements! Others with more severe absorption problems will not be as lucky and will require lifelong injections, so personalized treatment (often based on trial and error) is always recommended. Wishing you healing.

WIZARD6787 profile image
WIZARD6787 in reply toetreas

Thank you for your reply. It is appreciated.

WIZARD6787 profile image
WIZARD6787

OK 48 hours and improvement is definitive and wonderful. However it is not proven that the spacing over time of of sublingual B12 is the cause of improvement nor is it at all proved it is not.

It is possible that the reason for the improvement is my switching from B6 Pyridoxal HCL to B6 Pyrdodoxal 5 Phosphate. It has been discovered in the last two years that B6 Pyridoxal HCL interfers with the body's use of B6 Pyrdodoxal 5 Phosphate. As that change was made 14 days ago and my body may have adjusted. Shout out to those on this forum that gave me the information to know to make that change! Without that information I would still be in pain.

Without out B6 supplement as well as B12 my peripheral nephropathy would not be treated successfully resulting in a lifetime of pain that not form, method of administration or amount of B12 would successfully threat.

Pretty much if you are experiencing pain from peripheral nephropathy that is not dramatically improving with just B12 perhaps try a trial of Pryidoxal 5 Phosphate. I use liquid in water. As always I am not a medical professional and do not even have the ability to be one.

prillyb12 profile image
prillyb12

So are you suggesting that sublingual didn't work for me before because I wasn't also getting the co-factors and I wasn't getting the sublingual B-12 often enough in the day? And the co-factors are P5P and methyl folate, plus I take a B complex. Is this correct? Thanks! I'm currently on injections every 2 weeks.

WIZARD6787 profile image
WIZARD6787 in reply toprillyb12

If I seem to be suggesting anything other than someone might want to check something out that it is an error in my communicating. I try and only write about me as that is all I know about. I experienced a dramatic improvement when I took B6 so I pass that information along.

Those on this forum gave me the information on the form of B6 so I pass that along.

I only deviated from 1mg of hydroxocobalamin every other day and took sublingual as i wanted to travel and did not want to deal with the syringes while traveling.

My critical thinking did lead me to try something different. I only shared that here as it helps to write things out knowing someone may read it. Also it is helpful when people review what I write. A peer review thing only I am not as knowledgeable as those on this site so I am not a peer.

I only know I think sublingual works for me.

Below is the reference on B6 that I used to make my decision on what form to take. The amount I take which is 25 mg twice a day is from the information I have that is generally safe and it is what keeps me from being in pain. I will try and reduce that amount over time.

Toxicol In Vitro . 2017 Oct;44:206-212.

doi: 10.1016/j.tiv.2017.07.009. Epub 2017 Jul 14.

The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function

Misha F Vrolijk 1 , Antoon Opperhuizen 2 , Eugène H J M Jansen 3 , Geja J Hageman 4 , Aalt Bast 4 , Guido R M M Haenen 4

• PMID: 28716455

• DOI: 10.1016/j.tiv.2017.07.009

Abstract

Vitamin B6 is a water-soluble vitamin that functions as a coenzyme in many reactions involved in amino acid, carbohydrates and lipid metabolism. Since 2014, >50 cases of sensory neuronal pain due to vitamin B6 supplementation were reported. Up to now, the mechanism of this toxicity is enigmatic and the contribution of the various B6 vitamers to this toxicity is largely unknown. In the present study, the neurotoxicity of the different forms of vitamin B6 is tested on SHSY5Y and CaCo-2 cells. Cells were exposed to pyridoxine, pyridoxamine, pyridoxal, pyridoxal-5-phosphate or pyridoxamine-5-phosphate for 24h, after which cell viability was measured using the MTT assay. The expression of Bax and caspase-8 was tested after the 24h exposure. The effect of the vitamers on two pyridoxal-5-phosphate dependent enzymes was also tested. Pyridoxine induced cell death in a concentration-dependent way in SHSY5Y cells. The other vitamers did not affect cell viability. Pyridoxine significantly increased the expression of Bax and caspase-8. Moreover, both pyridoxal-5-phosphate dependent enzymes were inhibited by pyridoxine. In conclusion, the present study indicates that the neuropathy observed after taking a relatively high dose of vitamin B6 supplements is due to pyridoxine. The inactive form pyridoxine competitively inhibits the active pyridoxal-5'-phosphate. Consequently, symptoms of vitamin B6 supplementation are similar to those of vitamin B6 deficiency.

prillyb12 profile image
prillyb12 in reply toWIZARD6787

Thanks for clarifying. I'm glad that you have found tweaks in your dosing that help you.

prillyb12 profile image
prillyb12

Thank you for bringing all of this up. I'm wondering why I'm dragging around when 3 days ago I had my 'every 2 weeks' injection. So I'm going to increase my B vitamins, which includes the co factors, plus more methyl folate, and also try some sublingual B-12 for in between injections. I'm also thinking maybe I should have a conversation with my primary care MD who writes my B-12 rx. He tested my B-12 level in Dec, it came up 'high', he went ahead and renewed my Rx, but it makes me nervous that he did this test.

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