Update

[WIZARD6787]

I no longer experienced severe symptoms associated with B12 deficiency after 6 months of injecting 3 mg of Hydroxocablamin three times a day and supplementing methylcobalamin and adenosylcobalamin 5 mg combined three times a day in sublingual liquid for 8 months.

The 3 years +- prior I did improve slowly, injecting 1.5 mg every day and 5 mg sublingual.

5 months ago I started injecting 1mg/ml of both methylcobalamin and adenosylcobalamin 4 times a day. The improvement was dramatic.

8 weeks ago started a new trial and injected 1mg/ml of both methylcobalamin and adenosylcobalamin 4 times a day and set an alarm to inject in the night for 5 weeks and the improvement to my neurological system was substantial. It was not easy and not a rose colored glasses wonderful thing. It was hard for my body to heal. I attributed the improvement to not letting my body go through the night with not enough B12 to heal.

I tried a short trial of setting an alarm twice to inject in the night and found that to be unworkable.

I then decided to inject the same amount 5 times a day and set an alarm to inject once in the night.

I made this choice as I have crashed every year for 20 + years every February due to in part the lack of sun and light available. I take vitamin D and K2 orally.

As I expected the 5 times a day resulted in healing which is hard on the body. I decided I would rather risk the possible improvement than crash and wonder if it could be avoided with more robust supplementation. I am pleased I made that decision.

We happened to have 9 days of sun in New Hampshire. Getting sun energy was healing and I needed a lot of rest and sleep. It was not easy. I am well pleased with the resulting healing. I experienced chills in the night which have resolved due to having more sun and light energy.

I am starting a trial of 1.5 mg of methylcobalamin and 0.5 mg adenosylcobalamin 5 times a day and setting an alarm to inject in the night.

My past experience and that some people have “side effects” from methylcobalamin suggests that I will have a downturn as my body heals. Specificialy: sleep disturbance, anxiety, minor heart palpitations, sporadic vision and hearing issues, minor back pain, pain in my shoulders and the obligatory digestive system issues. I experience these symptoms for a short while when making a change that is eventually positive and attribute it to my neurological system healing. I have these experiences everytime I improve my supplementation and with each improvement to my regiment the effect on my neurological system is less severe and shorter lived. The improvement is dramatic once things settle out. I always need more sleep and rest. It has never been wonderful. These symptoms are not severe enough to be diagnostic for B12 deficiency.

Pretty much every aspect of my life both physically and emotionally has improved over the last 8 weeks even with the lack of sun and light available. Not yet wonderful.

When I injected 4 times a day I used to measure my improvement by walking 5k on the week-end. This was helpful but I felt the recovery time to be likely not necessary or helpful. So I designed another method which I found to be both helpful in measuring overall improvement and how the change in supplementation was affecting me.

I walk along the shore of a lake to get sun and would do hill work based on how I feel that day. I limit myself to 3000 steps a day to avoid pushing too hard which I knew was my inclination and I decided it was not helpful to push so as to need days of recovery. I manage healing and will only manage PA/B12D when I have exhausted my abilities to design effective protocols and continue healing.

I found the 3000 steps a day to be extremely helpful in evaluating. Some days I was not into it and did not do hills. Some days I did a hill and then fully recovered and did another hill. Some days it was not happening due to my neurological system healing and I needed rest. Some days I cheat a bit and walked more than 3000 steps but with having a routine I did not get carried away.

Although not yet attained, I strongly expect that I will not crash this winter. My next goal may be to see if I can heal enough so that I can once again swim in 10 degree celsius water in my trisuit and heated vest working up to ½ mile.

I developed a “best day evaluation” method. I used my “best day evaluation” to establish as best I could what was possible in my future.

It was not situational, it was based on how I experienced a day not how much I enjoyed it. If I spent time with those I loved I would enjoy that day, if I had do stuff not so much, that was not the measure. The measure was a comparative evaluation and in part if any recovery was needed other than a night's sleep. This was a modification of when I under supplemented and measured how much recovery time was required after being more active.

I will not be making comments such as “I experienced that when under supplementing” as I do not think that would be appropriate.

I see medical personnel as being able to give approval for my insurance so that I can have appropriate testing. A bureaucracy/monopoly with no real oversight and a very good brand that they do not live up to. I see it more as an abusive relationship in that they see my role in it as meeting their needs. I do not hire friends or people to support me or instruct me on life. I hire professionals for information, accuracy and up to date, is my goal but not my expectation. I am always wary of people who always blame someone else for their failures. I also find them as a demographic not to have particularly high levels of cognitive skills. Cognitive skill and the ability to regurgitate are not exclusive or related. As a group they are devoid of imagination. I find it helpful when hiring physicians and nurses to have a realistic understanding of the quality of work I can expect. The emotional maturity is typically that of a 7th grader.

I use the methodology when designing my self treatment to achieve steady improvement and not slow improvement.

I will let you know If I am the first case to ever experience negative effects of B12 supplementation. I allow it is possible as what I am doing has not been done as far as I know.

I am working with the principle that at some point I will increase frequency, form or amount and there will be no change. I am aware that this will take time. Weeks/months not years.

I have experienced feeling that I have plateaued only to find it was the level of neurological function to which I was accustomed.

I have written here often that I experienced B12 deficiency my whole life. I now state I had symptoms possibly attributed to B12 deficiency and the time of onset of clinical B12 is unknown until a diagnosis. Just a general adherence to accuracy which I find helpful.

I also no longer consider the severity of symptoms to ever be known as there is yet to be a scale. I personally had an issue with that as everyone's suffering is of equal importance. I self treat based on neurological improvement and severity of past symptoms is not a consideration.

The explanation of delay of diagnosis and severity of symptoms as a criteria for treatment is pseudoscience and conjecture. I use improvement from supplementation as my only criteria in my designs. The concept of date of onset and delay in treatment is accepted but not proved. There are many possible causes and likely some unknown.

I also reject the concept of permanent neurological damage other than with current treatment. Certainly possible certainly not a fact that permanent damage exists it is not a reason for me to under supplement. This includes subacute degeneration of the spinal cord.

So I am not indicating that I know that my current regiment is effective for anyone but me. I am stating that unless someone had a similar regiment they do not know either. I do note that the only medical accepted treatment is 1 mg every other day and it was never suggested that I or anyone else would benefit from a protocol similar to mine. Any other protocol is not blessed by those that make a living in medicine.

Research is not done to determine effective treatment, the research is searching for biomarkers not accepting symptoms as a criteria for improved treatment. There has been much work done and no progress made to date with regards to treatment. I am glad I did not depend on advancement of research other than that done by those that share their experience on this forum.

Note: I experience debilitating peripheral neuropathy if I do not supplement 50 mg of P-5-P/B6 orally twice a day. I experience peripheral neuropathy if I supplement 50 mg once a day. I no longer experience cold toes and fingers when outside in temperatures below freezing. That is a nice result! The upper limit which is the amount that is considered to be taken with no adverse effects is 100 mg in the USA. There are >70 cases in the Netherlands where daily intake of + 500 mg for a year resulted in Peripheral Neuropathy which resolved when the supplementation was discontinued. P-5-P was not a factor in these cases. The government in the Netherlands has limited the OTC amount to 20 mg per dose. My guess is that the pyridoxine, pyridoxal HCL, and pyridoxine were taken for weight loss and 500mg doses were being sold.

Note: I and no one else has any idea of the effect of my current protocol of someone just diagnosed with B12 deficiency. I do think I have experienced healing too quickly.

[GracePV]

Thank You for sharing your program. It helps me to feel more certain that my own regimen is appropriate for me. Congrats on your healing!

[WIZARD6787 in reply to GracePV]

Thank you and you are welcome!

[WIZARD6787]

Thank you for that you have articulated how the medicial field functions. Guidance is written which suits the medicial beauracrates that write them then the personnel follow the guidance as it suits them.

It has been years since I started self treatment. Much of it a waste of my life. I bought into if I am improving that is the best anyone can do. "Takes time" which is a platitude and not information. Find what works with no criteria for what might or might not.

It has only been 6 months since I studied the way retention times were applied and found the conclusions with regards to treatment to be invalid. The scientific measurement is valid it is the conclusions that are not valid.

This led me to frequency may be important and have been using that hypothesis in my design of self treatment. That is why I have been so successful in the last 6 months. The frequency guidance is based on the incorrect retention time analysis.

I am still working on form of B12 as the conclusions with regards to efficacy are not valid.

I will go over what is thought to be true about treating B12 deficiency and see if I find any other generally accepted pseudoscience.

Effective self treatment suits me! Even if it is not blessed by anyone who gets paid to control my treatment, which seems to suit them very well.

[Treesong2023 in reply to WIZARD6787]

Fascinating...and thank you kindly for sharing this.

You have shared a great deal of information. There is one part I was particularly interested in....

...It has been years since I started self treatment. Much of it a waste of my life. I bought into if I am improving that is the best anyone can do. "Takes time" which is a platitude and not information. Find what works with no criteria for what might or might not.

It has only been 6 months since I studied the way retention times were applied and found the conclusions with regards to treatment to be invalid. The scientific measurement is valid it is the conclusions that are not valid...

Could you possibly point me to the studies you refer/infer here please?

I too think that the regime we have is a token "best safe practice" thing....and underpowered for many people ...when we need individual dosage and treatment regimes from our NHS/GP's here in the UK.

With Thanks

[WIZARD6787 in reply to Treesong2023]

I reviewed many studies with regards to retention times. As I remember it the protocol for the testing was the same as for medication. It did not specifically test for a person experiencing symptoms associated with B12 deficiency or PA.

I work with the concept of therapeutic dose. That dose which allows for healing of my cells and therefore my body. I establish this by trials and my evaluation of the results of my trials. It is very difficult.

It seems to me that the philosophy tends to be treat as little as possible and those that treat will never feel a thing.

My study does not consist of finding the expert with the answer rather study to find my answer. When I paint I did not invent using a canvas or pigments in solution. Does not mean I can not create a work of art that has meaning to me.

I do read the studies which are really just a person or groups conclusion about scientific studies actually done. I do not put a high value on others conclusions from other's scientific studies.

Although I started with trying to find the information that was a solve I came to understand that the solutions offered were only solving the needs of the one offering the solution.

I also read the information written for physicians and read the whole document rather than going on one excerpt. This is the way I do a risk assessment of my trials rather than just go with that which could not possibly have any adverse effects.

I find the science of this study helpful. The regiment used in this study is the closest to the designs I have done.

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

I use the information from this study understanding the work was financed with a grant which means the protocol had to be written in advance and followed. There is no room for adjusting during the study. I am also aware the designers of the study are determining the effectiveness and not those that were treated as part of the study.

I share my experiences here for the most part and try and stay away from portending to be an expert. In part as those who lay claim to expertise have been incorrect so often.

[Treesong2023 in reply to WIZARD6787]

Again, I send my thanks, and my appreciation for the information and outlook you have shared.

I feel i am coming to share the same outlook, but with a view on determining what is the best bioavailability of key enzymes and related factors in the Methylation cycle - for fighting B12 Def / PA. I also think there has to be at least two levels of treatment we all need to think about.

The first is the stabilising B12 intervention...this is B12 and a B6/B1 dosage regime that alleviates the symptoms ( i.e. something like the NHS NICE guidance but with more B Vit regimes ). This basicallly allows the body to function better at the celluar level - you feel better but are still "damaged" ...and in need to bodily / neurological repairs.

So, there is then a dosage regime for "repair &recovery" as well. Which I know is your focus Wizard. You are ahead of my thinking.

This repair regime provides enough availability "a flood" for cells to repair as well as possible - not just at a level to support those already there and in 1mg level daily function.

Ergo, there is a need for a higher availability / dosage regime - as you have realised. I think this Repair regime would need to span a good 6-12 months - but not much longer - as too much of anything, for too long isnt good for us.

I happen to think there are millions with undiagnosed B12 Def /PA sufferers out there.

I will read the study you referred referred too. I take heart that those high doses were tolerated and looked to drive a sunstantial recovery.

Thank you WIZARD.

[WIZARD6787 in reply to Treesong2023]

You are most welcome. In general I open the methylation pathways with Betaine, Folate, B12 and B6. In amounts that are effective. Still working on amounts and frequency.

[Treesong2023 in reply to WIZARD6787]

Hello again. I am on the B6, ..and now.. the Betaine...

FYI I also think some use of Potassium (as Glutonate) is required as this is drawn into the metabolic cycle as B12 driven function increases. But I only did A level Chemistry - so do check yourself.

I have found several Japanese Studies (some Government driven) on the use of high dosage B12. These were a range of highly interesting studies that started back in 1998 onto 2018. These were on those poor people with severe mental and neurological decline. So, there is a line on consistent research on B12 here. There are dozens of them and they focused on efficiacy, dosage levels, nutritional changes, and also effects of any toxicity ( so far none found?). When I have scanned them, I will share the "best" ones - if you havent found them yourself Wizard.

On the question of amounts and frequency - I get it. It will be a unique mix.

I am trying to gauge the "repair" dosage for myself - as the right "cocktail" of B12+++ and their individual dosages at a ratio. I think of it as my personal "Repair Complex".

Again, I send my regards and thanks.

[WIZARD6787]

Thanks for the heads up on potassium. That is on my list of trials to do. I am putting it off as I find and effective trial is disruptive at first. I have come across that potassium may be beneficial.

I just did some initial reading. Good news is the medicial field does not think it is worth knowing about so I do not have to wade through their silliness. They have determined there is no benefit.

Would be great to read successful studies. Gleaning information from those who are treated that experience severe symptoms and are treated successfully rather than gleaning information from those who have less severe symptoms and are treated successfully and calling that good for everyone.

Any reason you use Gluconate for potassium and what dose are you taking. If you do not mind sharing.