I am writing about improved treatment for those who suffer from any experience of B12 deficiency that does not respond to the Nice Guidelines treatment protocol or suffering longer than may be necessary.
When I read of efforts to find better treatment for B12 deficiency I understood that there was and not likely to be any research to be done with regards to different forms, amounts, frequency or method of administration of B12. I understood that the research being done was about finding biomarkers and recently understood the concept was to use different supplements as indicated by any discovered biomarkers.
What I did not understand was the why. The reason that research on the use of existing available forms of B12 being used more effectively is not happening is that it is considered solved and therefore no further research is needed.
It is not considered possible for some to heal with a more effective use of currently available forms of B12. Some will never heal due to age of onset and or severity of symptoms is accepted including some on this forum.
It is accepted that the length of time for complete response to treatment is unknown and will not be affected by different uses of current forms of B12. That problem is considered solved also and no research will be done. Again accepted by some on this forum as fact.
I do not thoroughly study the NICE guidelines as I am in the USA and the treatment protocols outlined are not applicable to my self treatment.
I do sometimes quote to others the every other day 1 mg of hydroxocobalamin until symptoms resolve. If those of you who have studied the current Nice Guidelines have found that the EOD protocol has been abandoned it would be helpful to me when communicating with medical personnel to know if it has been abandoned. Thanks in advance if anyone has done that work.
Good news is I can and have found a more effective way to treat my B12 issues and still improving both my life and self treatment. I do so by discovery and exploration which includes the use of different forms and combinations, different frequency, and amounts. That part of my exploration and discovery is done by comparative analysis.
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WIZARD6787
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No, Vitamin D And Calcium Supplements Still Don’t Work
I came across this article about vitamin D , discouraging the supplementation of various vitamins etc and now adding vitamin D. and that the research on 36000 women (🤩I initially thought) showed that taking the vitamin and calcium did not show improvement in bone fractures. Then reading this article further I realised why there couldn’t have been any significant improvement. They only gave half of these women 400IU ( the amount you give an infant) rather than the minimum amount of 800IU or more . Calcium , the actual form, wasn’t mentioned so can’t comment on that.
Only to comment that I do not supplement Calcium in tablet form myself.
I believe, managing myself , that taking / supplementing vitamin D3 does help enormously. Taking the right form and right amount together with its co-factor K2. I have a diagnosis of B12 deficiency as well as Osteoporosis ( as result of B12 deficiency) and since reading up on all this over many years I have stalled the process of losing bone density.
Vitamins also helped with my 3 covid infections, after the first one, not starting the use of vitamins straight away was the worst, however the following 2 were over in a fraction of days rather then weeks.
People have lost the knowledge and believe in vitamins and minerals like our grandparents did. They ate seasonal produce for that reason. Our diets look to be more varied but most people end up preparing meals on a standard 5-7 recipes each week if that. Resulting in deficiencies in most vital vitamins and minerals.
I do believe there is now a movement under the younger generation with babies/ children, to go back eating seasonally, growing their own, a wide variety of foods.
Like you many of us are trying to manage our health best we can….. and not by just blindly following medical initiated suggestions.
I am writing about improved treatment for those who suffer from any experience of B12 deficiency that does not respond to the Nice Guidelines treatment protocol or suffering longer than may be necessary.
When I read of efforts to find better treatment for B12 deficiency I understood that there was and not likely to be any research to be done with regards to different forms, amounts, frequency or method of administration of B12. I understood that the research being done was about finding biomarkers and recently understood the concept was to use different supplements as indicated by any discovered biomarkers.
What I did not understand was the why. The reason that research on the use of existing available forms of B12 being used more effectively is not happening is that is considered solved and therefore no further research is needed.
It is not considered possible for some to heal with a more effective use of currently available forms of B12. Some will never heal due to age of onset and or severity of symptoms is accepted including some on this forum.
It is accepted that the length of time for complete response to treatment is unknown and will not be affected by different uses of current forms of B12. That problem is considered solved also and no research will be done. Again accepted by some on this forum as fact.
I do not thoroughly study the NICE guidelines as I am in the USA and the treatment protocols outlined are not applicable to my self treatment.
I do sometimes quote to others the every other day 1 mg of hydroxocobalamin until symptoms resolve. If those of you who have studied the current Nice Guidelines have found that the EOD protocol has been abandoned it would be helpful to me when communicating with medical personnel to know if it has been abandoned. Thanks in advance if anyone has done that work.
Vitamin D and Calcium are important to bone health. Doctors assumed supplementation would help. For me it is about knowing what the doctors assume and what they know. What decisions are they making for me and not telling me or do not understand.
Vitamin D with K2 are effective for me in the winter months. Not for bone density rather unmeasurable but easily experienced feeling more like I wish.
If you had told me 5 years ago if I injected B12 the change would be remarkable I would have said "I will stay with the eye of newt. "
I always use the fact the doctors have a 3 -5 higher rate of suicide than the general population and do not look to that demographic for mental health advice.
I always use the fact doctors do not live any longer than the general population and discount the explanations given for that fact.
Doctors have there uses. It is about for me finding what those uses are. First let them do no harm.
When people used to tell me the horror stories about doctors I assumed the problem was with the patient until I experienced myself.
True, problem is that guidance is seldom followed by GPs - I was refused EOD point blank even though I had several neurological symptoms post loading doses. A key stumbling block to adequate treatment is resource for GPs to do injections yet they won’t support self injection. No logic and it’s costing the NHS in the long term and we are suffering unnecessarily.
There are so many problems! How medical personnel view themselves and how others view them is at the core in my opinion. And that's not going to change humans being what they are. It's not just B12. It's systemic.
All they say is that the following are common neurological symptoms:
neurological or mobility problems related to peripheral neuropathy, or to central nervous system disease including myelopathy (spinal cord disease):
-balance issues and falls caused by impaired proprioception (the ability to sense movement, action and location) and linked to sensory ataxia (which may have been caused by spinal cord damage)
I really hope that some day someone will take a scientific approach to investigating the amounts of B12 that people require. As a scientists, it is nice to have very objective things to measure such as concentration of available B12 in the blood. For us as individuals, I think that symptom tracking is critical for us to figure out our own individual puzzle. But for example, something like "tiredness" is quite subjective. Another thing is that tiredness may arise from many causes and not just lack of B12. A really good study might map both the objective measurements and also subjective ones to see if some general conclusions can be made.
Unfortunately those with the capacity to do the quality of work required to measure the availability of B12 available in the blood work for the pharmaceutical companies.
There is also the issue of what B12 in the blood can be utilized by a particular individual.
Might be possible for those currently working on B12 to determine the efficacy of different forms and combinations. There will be zero incremental improvement in the research if none is done.
A gifted clinician who has the courage to risk being ostracized by their peers is capable of determining by symptoms if a trial of 1mg hydroxocobalamin every other day is appropriate and determining if that trial has a positive effect. That would help some but not those who require more than EOD. An appropriate treatment for some but not all and it seems that it may be those that are suffering the most.
A study of symptoms and orrolateing it to current testing would likely show the current testing to be flawed. Good luck with have that not ridiculed.
I have done research with a pharmaceutical company. There is no motivation for them to research PA. A very inexpensive "drug" is available already for treating the problem (injectable B12). They are very profit motivated and more inclined to do research on drugs that will make them a lot of money.
I was writing about the quality of work capable by those scientists that work at pharmaceutical companies not the social value of those of us that work in the private sector as opposed to those of us that work in the private sector.
So society is stuck with the quality of work of the public sector with regards to B12. Other than the work we can do ourselves.
I have done design work for a pharmaceutical company and some employed by them. I found them to be honorable and not self righteous. I in general have not experienced the same as when having clients from the public sector. I prefer to work in a collaborative manner, and not with those that believe they serve the world because they are more wonderful.
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