The most likely reason for my B12 deficiency is my body uses B12 faster than is normal for reasons unknown and unstudied other than me as far as I know.
This is why self treatment that increases the frequency which was at first based on more B12 was effective. To inject more B12 I coincidentally injected more often.
My reversing out which was a real experience was not caused by coming back online rather the result of being less B12 deficient but still B12 deficient. In effect still starving my body for B12 as it was used rapidly.
So I am now self inject as close to every four hours as is possible. If I wake up in the night I inject. At the end of the day I inject if it has only been 3 hours since my last injection.
The results of increase of frequency is improvement of symptoms and more tiredness which is not the same as fatigue and sleeping is more effective than when more B12 deficient. Reasonable to assume the tiredness and resulting more effective sleep is the result of my body adjusting to not being B12 deficient.
Amount is important.
My improvement is now measurable in a week rather than months.
Imagination is more important than knowledge!
I do not yet have a solve I may be closer.
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WIZARD6787
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I take my hat off to you for having the courage and tenacity to inject so frequently. From my perspective, it must take huge mental strength as I struggle to inject just once every day as I hate needles and as much as I try to ritualise and introduce an element of pamper (my coffee from hubby), it is still a subconscious teeth clenching time for me. I have to enlist every fibre of my being to complete the task. I need time afterwards to recover from the mental and physical effort a SI takes.
That aside, I think there is a lot of merit and logic in what you say. I remember reading somewhere, possibly in one of MARTYN Hooper’s books but I can’t recall exactly, that the human B12 system is one of the most efficient at reclaiming, recycling and reusing B12 which is why in a fully functioning body, the daily intake of B12 needed is so low. This is because the intake is only required to counter the tiny inefficiency in the system. ( PLEASE someone correct me if I am wrong as biology is not a strong point of mine!)
However, if one accepts that the daily intake a healthy body needs is only to top up a healthy B12 system, then given it’s so efficient it makes sense the daily B12 requirement is so small. It also makes sense that the B12 system operates 24/7 as we need blood 24/7 and I suspect few systems in our bodies operate on time switches (AGAIN PLEASE someone correct me if I am wrong!)
But we with PA have a broken B12 system. We don’t necessarily know where in the process or how it is broken. We only know it’s broken because our bodies begin to deteriorate due to a lack of B12. And the medics give us a “top up” - but what are they topping up? Are they trying to fill our broken tank? Or trying to offset the B12 inefficiency loss not fully appreciating that for us the efficient 24 hour B12 cycle is broken ie we effectively have no B12 tank?
If the B12 system is broken, ie the tank is effectively empty with a whopping great big hole it, then it makes sense that we should need B12 daily. And we have arrived at Point Wiz!!!
And Wiz, I totally get your logic, that if we inject only once a day we are assuming that our bodies only use B12 for the hours post injection are we not? What happens for the rest of the hours in the day? It is most probably in decline - calling for B12 but receiving none - as remember we have no effective B12 tank and hence no B12 system.
It is without doubt true that since injecting daily, supplementing with B complex during the day and methylcobalamin too that I feel better and my recovery has accelerated. This is entirely down to Wiz sharing his observations and experiments. His musings and findings make so much sense to me so I thought why not give it a go! And I am so grateful and pleased I did!
I know you are onto something Wiz because the opposing premise is that a healthy body does not CONTINUALLY use B12. I find that hard to believe.
I read that you hate needles . Within the last couple of days, I read on this forum that there is a newly invented device that enables injection without needles . It is an Australian device . Perhaps it might be something that you are interested in ? It was expensive at around £300 . As it was mentioned by an Australian member , you could , if you are interested, put out a request for information on it .
An alternate theory to "your body uses it faster" could be that your body is not very effective in using the B12 that it is available and/or you have difficulties in storing it.
Thanks for that! Pretty much something is going on with my body that is not explained by current understanding. I do keep in mind that my body does not use B12 effectively and my storage is unknown. I went with loading my body with lots of B12 when trying to simply adjust the EOD methodology/find what works. It was not until recently that I came up with frequency being important for me. That has made a world of difference.
I inject anywhere from 4 to 5 times a day. Right now 1 mg of Methylcobalamin and .25 mg of hydroxocobalamin and take 6 mg of adenasolcabalamin adenosylcobalamin each time. Any less than that and I suffer. This does not make any sense with the current understanding.
With that protocol I have walked 5K 5 times a week +- apart with no "training" in between other than walking a mile every other day with a couple of hills. Each time it was easier and I had to stop less on the hills. Yesterday at the end of the walk I jogged between telephone poles twice and did not stop at all. That makes no sense with the current understanding.
No way I could reasonably predict with the current understanding of how B12 is utilized by my body that I would need that amount and frequency or should even try it.
Best guess right now is I experience transcobalamin issues and the appropriate treatment is not yet known.
As an athelite you may appreciate the thrill of feeling the burn for the first time in years.
As of right now I have all but no storage and use up my B12 in 4 to 6 hours for reasons unknown. I even inject if I happen to wake up in the night. Who knows with enough injections I may not use up my B12 as fast and able to store.
This is all maddening to me and has been three years of misinformation and dubious conclusions by others that I have had to wade through.
I am a minimalist by design and that does not lend itself to finding a way to heal and thrive.
I do remember your first reply. It is not outside the realm of possibility that had I been treated at age 8, 20 or 40 I would have experienced a better outcome. Nothing in this all is new to me other than severity and hopefully length of recovery.
I am also working with people in person that are 1/2 my age and your sharing has given them direction.
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