In case someone happened to miss it a... - Pernicious Anaemi...

Pernicious Anaemia Society

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In case someone happened to miss it and update of sorts.

WIZARD6787 profile image
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onlinelibrary.wiley.com/doi...

I found this case study to be very helpful in the design of my trials. It is not simply a study of the current papers available online, I consider them nothing more than content writing. I found them helpful at first which is typical for me with any study. A great place to start, not a place I would stay at. I use exploration and discovery when the answer is unknown. How to treat what I experience is unknown. Nor does current study seem to be headed to knowing how to treat what I experience successfully.

I printed the study out and highlighted the actual amounts and supplements used in the case study. I found this helpful.

The results that the probands experienced as reported by those that conducted the case study are phenomenal. The experience of the subjects is unknown.

I also found it helpful to search for "Case study high dose Hydroxocobalamin." Even if not related to 'B12 deficiency' I also studied B12 being used to treat diagnosis not labeled B12 deficiency or PA. I also read about any autoimmune disease.

The term high dose is subjective and seems to range between 5mg to 25mg. I see it as any dose greater than 1mg every other day in the high dose classification when used by 'professionals'. On the forum I see anything more than once a day as high dose.

I see anything less than 1mg/day not rational unless symptoms are eliminated in 60 days.

I understand that just because medical terms and numbers are utilized this does not mean it is necessarily scientific. I differentiate between science and applied science in that science is repeatable and applied science is not.

All applied science utilizes assumptions that are not proved. Often stated and repeated as scientific.

As an example "It depends on age of onset and severity of symptoms written by a scientist and repeated is not scientific. For it to be scientific the age of onset and severity of symptoms would have to be established which it is not. Might be true or might not. Seems to me that is an excuse often used for not being able to treat or self treat successfully.

It seems to me that severity of symptoms is often seen myopically and without empathy for anyone who experiences more severe symptoms resulting in advice on self-treatment rather than sharing. This is hard as everyone's suffering is important, their advice on self treatment although written as global is not always applicable and may not be even for most people, only them.

The study that PAS was involved in made the distinction between people who experienced symptoms severely worsening after treatment and those that did not although the treatment was the same. It was noted those that did experience worsening symptoms did improve eventually. I experienced symptoms that were much worse than I had experienced before treatment. I do not consider that reversing out rather the result of undersupplimentation of B12.

I am currently not working with symptoms rather the umbrella term inflammation. My symptoms at this point in my self treatment would not qualify as B12 deficiency. I have a understanding of when I am experiencing inflammation which I now only experience when I stress my body or life stresses it for me. I am working with the assumption that inflammation from stressing means I am not supplementing correctly. With the success I have had over the last 4 years I find it doubtful that I will decide I have to live with inflammation.

I am on the last day of a trial of injecting 36 mg of B12 over 6 doses and splitting the dose by 10 min. This trial was an improvement and I do not experience any symptoms associated with B12 or PA. I do experience inflammation which is the same I experienced 30 years ago when training for marathons. At the time I saw it as over training and rested for three days and designed a less robust training schedule. Likely I was experiencing B12 deficiency.

I did a trial of 33% more B12 and then reduced to 36 mg. I will do more trials of reduction as warranted.

Tomorrow I will start a trial of 36 mg/day at a concentration of 12 mg/ml spread over 6 doses and split by 10 min. This is a combination of two discoveries, that the same amount at a higher concentration is more effective and the splitting each dose by 10 minutes is more effective. When designing a trial of administration to determine efficacy I always keep everything the same other than the administration.

Although I do not currently experience inflammation unless I stress my body and that is still improving following my last trial I expect that my new trial will result in less susceptibility to inflammation. I expect a downturn as my body has enough B12 to further heal my information. I am not looking forward to the downturn, I am willing to go through it with the likelihood of improvement in no less than 14 days. It takes time.

I may be making an error in spreading out my doses. I have no experience with anything else except under supplementing once every day.

I feel that had I started with my current supplementation protocol the healing would have been to much for me to handle. Specifically the emotional pathways being opened would have been overwhelming. No way to know if I am correct. It could be what I experienced in the past was the result of under supplimeting.

What would have been appropriate 4 years ago would have been 25 mg per day in one dose and then adjust to those results. Possibly reducing or increasing based on results.

This writing does not contain my other supplementation as I do not want to put in that effort. The above study does contain information although not instruction on Betine, B6, and Folic Acid as well as other supplementation.

I do not instruct or advise, I share and work out maybe 20% of my thought process as I find it helpful to me. I am aware that my writing is not applicable to many who self treat as they do not self treat the same way I do or use the same methodology. I am also aware I would not have wanted to read what I write 4 years ago when I could only read 5 min at a time and then not very often. I write less here now in an attempt not to interfere with those desperate and trying to find help which is now in my past.

The needing sleep and rest has been problematic in my past trials which led to improvement. The needing so much rest has made it difficult to keep up with what needs to be done. I have slept through a scheduled dose during the day. To date, sleeping during the day through a dose has worked out as the trial continues.

I do supplement during the night if my body wakes me up to tell me to do so. As I write I came to understand my body wakes me up if inflammation is iminent. Good to know! I did a trial of setting my alarm and getting up and supplementing that is no longer applicable with my current supplementation.

I just started injecting right before I go to bed even if my normal 3 hours between injections has not passed. This change is more on the level of find what works rather than a trial to gain information or based on any study. I did at one time hypothesize that my body utilizes B12 differently when sleeping.

My study includes evaluation of strength of information not just find ideas that might work.

At one time I utilized the concept of amount per day, cofactors and different forms of B12. I have abandoned that. I still work with cofactors I have settled for the time being on adenosylcobalamin and methylcobalamin in equal amounts. I have not yet determined much about the efficacy of the different forms other than cyanocobalamin and hydroxocobalamin were at one time equivalent for my body. I have no other information due to the fact when I increased any dose of B12 I improved so I have no data as to efficacy.

With my methodology I have ideas what trial I might try next and will not make any decisions until I have the information that I will gain from the trial. Hoping it has no effect.

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WIZARD6787
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newlandvale profile image
newlandvale

Well, well, well! 1mg a week, (because afterall it is toxic/addictive/clot risking), has developed into a safe 25mg!!

Thanks for this link, Wizard. I hadn't seen it before. Must show my doctor😱🤣🤣

Technoid profile image
Technoid

Just a quick note that, regarding the condition (CblC deficiency) described in the paper, by 2019

"very late onset of the CblC defect in adolescence (10 years or over) has been described in only 42 cases"

ref: pmc.ncbi.nlm.nih.gov/articl...

Including earlier onsets, 71 cases have been found, in total. If you were to take an intersection of the PA patient population and the population that have experienced very late onset of this condition, there is a high probability that the number could well approach single digits or even zero.

WIZARD6787 profile image
WIZARD6787 in reply toTechnoid

Not pertinent to what I wrote.

Wwwdot profile image
Wwwdot

Hi Wiz

I will need much longer to fully digest as it is such a packed and intensely rich post - full of insights which I do appreciate you sharing.

This sentence makes me smile for you “This trial was an improvement and I do not experience any symptoms associated with B12 or PA. ” - you so deserve your success and I hope that you will find a recovery path to successfully deal with the inflammation.

I have learned so much from you, and your posts always bring me hope and remind me that battling with this disease is worthwhile!

Hugs my friend and thank you.

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787 in reply toWwwdot

You are most welcome!

It is becoming more and more difficult to write on the forum as I now have 4 years of discovery and exploration. There are many unproved concepts with the treatment of B12 deficiency that I reject as being proved. My B12 deficiency was not caused by a vegetarian diet. I am not confabulating I do not have an agenda, instruct or advise. It is very complicated and not merely complex to design and evaluate trials.

>>“This trial was an improvement and I do not experience any symptoms associated with B12 or PA"

I can experience typical symptoms if I improve my supplementation or push. It would have been more accurate to write. What I experience would not be reasonably lead to a B12 diagnosis even one of the few competent doctors capable of a B12 diagnosis.

I used the term inflammation and have since studied what it means medically and inflammation is not what I am experiencing. I still am working on it. It seems to be that stressing my body leads to healing. However stressing it to the point where I need recovery more than a nights sleep to be healing but not worth the cost. Impossible to differentiate the healing I experience from improved suplimentation based on by study and trials and healing from stressing my body. Made more difficult as improvement from more effective suplimentation takes anywhere from 5 days to two weeks and the improvement from having self-treated for years. I reject that there is anything about my human body that takes years to heal if the suplimentation is appropriate AKA effective.

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