It is not me it is you.

[WIZARD6787]

I think I may have an understanding.

"Those on this forum which refer to my work and the accomplishments I experience as the results of that work as finding what works by experimentation, can not fathom that I can review the current information and methodology used to design protocols and design a more effective protocol."

After all I am not trained in medicine. It seems for those on the forum that definitely means all I am capable of is finding what works. When in fact I review what the current justification is for the current protocol find that lacking and come up with hypothesis that are not in conflict with current science but more rational than current treatment assumptions. I am making more rational conclusions. According to my evaluations instead of following.

I came to this in part from comments that indicated some were following my advice. Which is impossible as I have never and will not ever give advice. That is a personal integrity thing which happens to be incidental to the guidelines on the forum.

I may have got sloppy in my words sometimes and made declarative statements. I don't think I have other than my rants about those that designed the current protocols and those professionals who can not competently follow them. I do make declarative statements that are defensible.

Now back to the finding what works methodology which I do not use and do not yet understand. There are three forms of B12 for injecting. All can be used alone or in combination, used with different amounts and different frequency. How one could determine what they want to try and see what works I do not understand. The possibilities are endless.

One of the first things I discovered was the rational used to determine what form was most effective was based on all but nothing and scientific knowledge was minimal and limited to conjecture based on retention times and the retention times variable between individuals.

One such conjecture was that hydroxocobalamin was retained in the body longer than cyanocobalamin and therefore might be more effective. That seems to have become cyanocobalamin bad. I find it possible that cyanocobalamin might be used by the body more effectively and therefore there is less to be measured in the urine. Given my understanding of the retention time testing protocol.

For me we are all different is not a criteria and is a platitude. (A statement so obvious that it is not meaningful) Although I will keep trying to understand its meaning.

Fortunately for me this telling me about me and being incorrect is not outside my experience. It is always difficult as when I explain it always is seen as a better rather than just different thing. Pretty much I do things differently and if the results of my work resonate and are helpful with the 'find what works methodology' in some way, bonus. For me it is about sharing and expressing and I am not sharing advice or results of a find what works methodology.

It is not that I do not use trials to test my hypothesis or gather information. That is the simplistic part. The doing the study of current protocols their rational and then creating is the hard part. The designing a way to evaluate has a high degree of difficulty now pain is no longer the criteria.

Much as I do not have one learning style and design one based on what I want to learn I do not have a preset method for my approach to self treatment. It is evolving and at some point may be abandoned. I did start out by looking for a known method that was effective. I still hold out a little hope that will happen.

I am aware this might read as a calling out. It is not as I am not evangelical. It is more expressing how I approach my self treatment differently as writing it out leads to clarity for me.

[Hockey_player]

It would be really nice to find some researchers who have your curiosity who are willing to experiment to find out which treatment plans work best and for which patients. I think it is really cool that you are willing to experiment to find out what works best for you. But I feel like the community is in great need of larger scale studies on many different people. The current guidelines seem a bit ad hoc to me.

[WIZARD6787 in reply to Hockey_player]

>>It would be really nice to find some researchers who have your curiosity who are willing to experiment to find out which treatment plans work best and for which patients.

That is not what researchers do. Researchers look for biomarkers. The ones that can do critical thinking and have an imagination work for the pharmaceutical companies and not non-profits or in the educational system. Most people seem to believe that universities had something to do with developing computers and they just followed long after others created.

The current guidelines are controlled by the government employees that regulate. Not a very imaginative demographic. They fancy themselves as leaders and are just followers.

I do not find what works for me by experiment. I evaluate and then design a protocol that I have a rational that I think might work. It is a creative process and NOT a not find what works for me.

Although I am curious and that is part of why I am not limited to find what works for me, the impetuous is by following the current understanding and not coming up with an understanding would have led to permanent neurological symptoms and likely if I went with the find what works methodology would have resulted in decline as I got older as what worked no longer would.

What I do is not dissimilar to someone who plays hockey and not someone who watches and believes they know what it is like to play hockey.

[Wwwdot in reply to WIZARD6787]

Hi Wiz

I think your communications are far from sloppy. They are detailed and thoughtful and I have never viewed them as anything other than a generous sharing of experience which I have found encouraging and useful in my pursuit to reclaim my health.

When living with PA and/or self treating it can be hard to see the bigger picture as daily life and emotions affect us and so cause and effect can be hidden. But when I read of other’s experiences similar to mine it helps me identify which experiences may be linked to B12. A classic example is achy teeth - I only realised that my achy teeth are B12 related from reading the experiences of others on the forum, the same with anxiety attacks.

I look forward to posts of further testing of your hypotheses and also other people’s experiences of self- treatment - there is so much to learn!

🤗🤗🤗

[WIZARD6787]

I have had the experience of reading the notes used when England still owned what is now part of the United States when establishing property boundaries. I learned that some who wrote the notes were sloppy and that is my measure of sloppy.

So much unlearning to be done. So much discovery to happen.

[MorningMist]

‘The current guidelines are controlled by the government employees that regulate. Not a very imaginative demographic…’

This is my view too. I suspect that treatment guidelines are a tick box exercise for administrators and that is why many doctors appear to disregard them.

[WIZARD6787 in reply to MorningMist]

Interesting I was thinking the opposite that Doctors do less than the guidelines as a way to feel good about their training and pretend they are creative. They seldom seem to exceed them which would require imagination and courage.

[MorningMist in reply to WIZARD6787]

Well yes doctors may well not want to follow guidelines which reduce the need for free thinking but whether or not it’s because they see them as usurping their autonomy and training or on the other hand they find them tedious and can’t be bothered, who knows?

[WIZARD6787]

Motivation is always a guess. I know that when people explain my motivation to me they are most often incorrect.

It really is about what is reasonable to expect and not reasonable to expect. Staying away from the brand of being healers and that acting concerned does not mean effort will be made to heal outside of what is required regardless of the pain and suffering experienced by the customer/patient.

I am lucky in that I am a scientist and understand what is seen as research is really only a review of papers available online. Can not expect any breakthroughs with that review. A good revenue stream for the 'researcher'

[MorningMist in reply to WIZARD6787]

Yes the clue is in the name research ie. looking again. Mind you there are ways of collating information which can throw a different light on matters.

[WIZARD6787 in reply to MorningMist]

That resonates. I have a knowledge base now that when I read a review of current literature I come across parts of the view that are incorrect.

[MorningMist in reply to WIZARD6787]

It’s good that you know enough to realise. Many people could do with a good dose of scepticism. I find one of the most important things is to know what you don’t know. Accepting limits and boundaries isn’t very fashionable.

[WIZARD6787 in reply to MorningMist]

I live I understand. I don't understand and never will. It follows that I understand others don't understand even if they think they do. Except I love my children and they love me. That's absolute. And will be at least in this lifetime if not beyond.

[MorningMist]

My sentiment exactly.