Non-Functional B12 Cellular Activity.

[WIZARD6787]

Non-Functional B12 Cellular Activity.

A study posted by technoid.

pure.tudelft.nl/ws/portalfi...

It is a study of the biochemistry of vitamin B12 cellular metabolism. 4 years of treating B12 deficiency with at least twice weekly injections of hydroxocobalamin. 1800 patients.

Pretty much following the same old path of trying to find a cause through biochemistry then suggesting ways to maybe find a way to relieve pain and suffering with the same failed results.

However I found this helpful to me.

"several cases where patients did not experience the expected recovery outcome, with distinct

experiences during and after treatment, such as:

• A quick normalization of total serum B12 level right after the first injections without a recovery from the symptoms; whereas a longer treatment will improve patients health eventually;

• Symptoms worsening in the early stage of the treatment; improvement/recovery does happen after a longer period of the treatment;

• Once the treatment is stopped, symptoms reoccur, leading sometimes a worse state;

• Symptoms reoccur during the maintenance dose (i.e. when the frequency and/or dose of treatment is decreased)."

They gave this a label of B12 Cellular Inactivity.

So we are all different and the above describes one major important difference. I have worked with this understanding for over 1/2 a year as it made sense to me that a different outcomes meant something. So do different test results of the same body. And deserve different treatment which is effective.

I also have rejected that we all will heal it just takes time. The study shows that is not true. Only way to prove that is to not heal. I reject it is a matter of finding the right combination for me.

I would have been one of those that did not recover had I not discovered that my body for reasons unknown and unsuccessful studied needs injections 4 hours apart. Differences are important and deserve different treatment.

It was also helpful for me to have confirmed that some do recover over time following ‘standard’ treatment. I do not.

I suspect that those that experience B12 cellular deficiency are over represented here as standard treatment is not effective for them.

Also from this study:

“The slow repair of B12 deficiency damages can eventually be resolved by giving continuous supply of injections to patients, such that they can slowly recover in a long term. However, if there are other issues impeding the cellular function of B12, the recovery of the patient might not be guaranteed."

It would be accurate to state that with current understanding and treatment recovery might not be guaranteed. It does not follow that they will not recover if the frequency of injections is increased to 4 times a day. That is not likely will not be considered as it falls outside of medical methodology. It does not fall outside of my methodology.

So until someone rationally disputes my evaluation and conclusions I will be using the concept of Non-Functional B12 Cellular Activity as distinct from B12 deficiency. B12 deficiency is NA to what I experience.

An oak tree is a tree and not a maple tree.

I will likely never have the knowledge of how long it takes to heal with effective self treatment as I did improve for three years with daily injections. It is possible that those three years made it harder for my body to heal than had effective treatment started three years ago. Nothing for that.

It seems to me that often what is stated here as being common with B12 deficiency is in fact not common at all and is an indication that the person is experiencing Non-Functional B12 Cellular Activity.

It will be interesting if what seems to be true to me becomes what is seen to be true to others on this forum. Not my end of it.

[Wheat]

Thank you for sharing Technoid's post, and your comments. I shall read tomorrow.

[Wwwdot]

Hi Wiz

Another thought provoking post.

I am a simple soul and like to look at complex issues in a simple way if I can. I agree with you that the current treatment regime does not appear logical to me.

Let’s consider my donkeys as a case in point. When I rescued them they were both emaciated having been starved for several years. I was advised that their recovery period was likely to be as long as their decline. The recovery was the equivalent of half a standard adult donkey meal split into 4 small meals a day. After 3 months and their decline had stabilised the four small meals got slightly larger. Then three meals a day, then two but equating to around double a daily adult meal to speed their recovery. Then ad lib to full recovery. All very sensible - stabilise amounts, then surplus to get full recovery. Now, question is would they have recovered and be as healthy as they are now if I had given them 6 large meals and one large meal every 12 weeks?

Why is B12 deficiency any different? Irrespective of how long our decline and nerve repair neglect has been happening for, if we are lucky we get 6 loading doses and then one every three months for the rest of our life. (I know we are supposed to get EOD when neurological symptoms but I wasn’t offered this). So are we seriously supposed to believe that years of decline can be stabilised in two weeks and achieve full recovery with a 12 weekly injection? Recovery on that basis by my reckoning is beyond most people’s lifetime!!

Thank goodness I am impatient as well as a simple soul, and I chose to self treat following my donkey treatment plan! I am now one year in and on 4 SI a day and without doubt better for it! It’s costing me but I am finding ways to redistribute my spend!

I still wonder sometimes if I am going mad and it’s all in my head but it’s a better place to be than where I was unable to do or think and feeling rubbish all the time. At least now I am tired after doing something! We are a tough bunch!

🤗🤗🤗

[WIZARD6787 in reply to Wwwdot]

I enjoy an elegant solution and am surprised how it is often the simplest and least expensive.

I find it helpful to know how a process developed. With B12 issue the goal was to no longer not enough have B12 in the blood stream. Hence the loading and maintenance. Problem solved and symptoms are what ever they are.

It is actually new that some people can be B12 deficient regardless of tests. Thing this is not the result of advances in bio science rather symptoms.

The new test of MMA and Homocysteine are an advancement of bio science. Treatment is the same.

The most robust standard treatment of EOD is the result of what works and not tied into any specific bio science.

The co-factors are for the most part are from the results of tests of what happens when I person injects B12. I have a sense they are underrated and that some tests are not sufficient as in the case of B6.

Say hey to your donkeys for me.

[Orchard33]

It could be that all those for whom standard protocol treatment is not sufficient have a degree of non-functional B12 cellular activity and that we are all on a spectrum as with so many things. A very useful post, Wiz.

[WIZARD6787 in reply to Orchard33]

I had not thought of applying the spectrum concept to B12 symptoms or treatment. Thank you for that!

Any condition or anything else put on a spectrum does indicate to me an ambiguity and what is labeled as B12 deficiency certainty does qualify.

[WIZARD6787]

I had in my head but did not write that I am in no way of the belief that there is a worse or more importantly better B12 Deficiency.

Not only are all experiences shared here of equal importance to me but there is no scale of pain and suffering from B12 deficiency.

[Orchard33 in reply to WIZARD6787]

Me too.

[GoneWithTheWind1972 in reply to WIZARD6787]

Such an informative article. Definitely one to keep for future reference. Thank you

[EiCa]

Wizard,

To be clear…non-functional cellular activity may be why my MMA went from sky high to normal very quickly and my homocysteine almost normalized too BUT I don’t feel any better. That said I have many chronic conditions. Perhaps my symptoms have nothing to do with B12. The term “non-functional cellular activity translate (to me) as B12 is indeed getting into my cells, as evidenced by blood tests, but not doing the job anyway? Is that a correct interpretation? Thank you Wizard. I read your posts with great interest and really respect the process you continue to go through to puzzle this out.

[WIZARD6787 in reply to EiCa]

That question is way above my pay grade. Not that anything else is not.

However, my rudimentary understanding is that it's possible to have the B12 in your blood, but the B12 does not go through the process they requires the cell to use it. Or another way to express it is the B12 is not converted and not transported from the bloodstream into the cells.

Others may be able to clarify or correct me.

[WIZARD6787]

Having thought about it the effectiveness of this trial is based on the physicians evaluation which may mean good enough for the patient.

Although the B12 institute seems more attune to the patient's symptoms it does not follow they are free of physicians bias.

Being blunt I do not now trust a physicians evaluation of results unless there is a useful test.

[cloudspotting]

Julian Owen from CluB-12 touches on cellular uptake of B12 halfway through his talk 'The Importance of B12' to the Doctors For Patients group. Link: rumble.com/v46eadl-the-impo... The video runs for 1hour 22mins and worth watching in its entirety.

[WIZARD6787 in reply to cloudspotting]

Thank you for that. I will send him my hypothesis as he seems to have the ways and means to investigate it further.