I did a trial of 1.5 mg methylcobalamin 4 times a day and that was positive. I then increased physical activity and had 3 days of a downturn and recovered. I then reduced to .75 mg with no decline. I increased physical activity for three days and had a downturn. I then added .06 mg of methylcobalamin and recovered in one day.
This is consistent with my understanding gained from the many trials that I have done over the last 3 years.
I also take adenosylcobalamin orally 6 mg orally with each injection. This is consistent with my understanding of sublingual administration of all forms of Cobalamin.
Hydroxocobalamin for me is effective, Methylcobalamin with Adenosylcobalamin is more effective than Methylcobalamin alone and more effective than Hydroxocobalamin. The three together are the most effective. Specifically for mucusy, lack of appetite, anxiety, brain fog, and energy levels, effectiveness of sleep, and tooth pain. I like being me more.
I only have a vestige of peripheral neuropathy which was debilitating before I administered Pyridoxal 5 Phosphate. B6 deficiency is rarely diagnosed and usually in conjunction with other deficiencies and treatment is for life. Reasonable to assume that my peripheral neuropathy would have been permanent had I not self-diagnosed and self treated my B6 deficiency. My damage is not permanent although it was declared to be. Diagnosis is typically made clinically by the administration of B6.
I have come across in my reading "Some people who experience transcobalamin issues seem to benefit from megadoses of B12." The only study I have come across was from China and people were prescribed 5 mg of hydoxocablim. I wonder if some clinicians are referring to people like me to try larger doses.
I am not prone to regret. I do lament the 2.5 years I tried to conform to the current understanding of B12 deficiency. I did improve but slowly and experienced the roller coaster of using up my B12. The B6 was easy as I needed to be in less pain and was successful.
It is emotionally difficult for me to self-treat the way I do. Getting easier as it is easier to be me.
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WIZARD6787
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Hi Wizard6787. I’ve studied your trials since I joined the forum last year with Long Covid and PA and done a version of what you suggested. Very grateful for your concise and bold solutions. Higher doses and mixing with sublingual as you suggest have enabled me to join in with the world around me more often, even if I have to sleep it off afterwards. And P-5-P helps too.
I stabilise the gut mostly with gluten free diet, Betaine H, S. Boulardii and kefir and try various forms of adrenal support. I think NAC seems to help with brain pain and recently I’ve added NADH capsules which I think is a form of Niacin. And seems to boost energy.
May I ask what you dose when it comes to Folic Acid and other B vits in general?
I stay away from "suggestions" as I am not a trained medic. I may get sloppy in my writing and indicate I am suggesting. "I" statements work but it can sometime be laborious.
I use the following as my go to with supplements in as best I can I make sure I address those cofactors etc. theb12society.com/treatment.
I use the concept that I do not need to supplement perfectly and that is not achievable. I use Simple Supplement" as it is designed for autism which is a neurological issue treated with behavioral modification. I think they went through all the possible supplements and did the work on toxicity. If I had to take only one supplement that would be what I took. I am a 180 pound male 5'8.
I am currently taking 1.5 mg of folic acid including what is included in "Simple Supplement"
I take 4mg of Bentine which all but prevents mouth sores and acne like symptoms.
I spread all my supplements throughout the day as they are all nutritional supplements.
Every increase in supplementation causes digestive system issues for a while. Which makes sense to me as all symptoms are neurological and the digestive system is controlled by the neurological system.
I take a probiotic in the morning and have some cheese every day and that takes care of the digestive issues for the most part.
My methods are only bold when compared to the standard treatment which is not effective for me and is based on symptoms are permanent which they can be with standard treatment. The more successful I am the less bold they seem to me.
The being tired after going out in the world sucks. I over time do more and am less and less tired. I see going out in the world as exercising my neurological system and I need to let my body heal. Still sucks.
I have a sense when my sleep is "effective". It is subjective but real. I now inject 4 times a day but if I do not go for a strenuous walk today I may only inject 3 times to give my body a chance to catch up.
Hi WIZARD6787,I am on methyl cobalamin 1mg daily. I will like to increase the dose but I noticed that each time I increase the dose, I feel more anxiety/depression. Have you been experiencing this? Could you throw more light.
I have yet to stabilize to the point where I can see a pattern. I can however identify a cycle. It is hard as there are so many factors and results are not linear and take time.
For 2.5 years I stayed loosely within the 1 mg every other day understanding mostly changing forms and methods of administration. It was not until I injected .06 mg of hydroxocobalamin three times a day with 6 mg sublingual adenosylcobalamin and "Simple Supplement" that I started doing better and not just less worse. I find throughout the day, first thing in the morning and last thing at night is best.
It was a big day for me when someone I love and trust very much said "I don't know what you are doing but keep doing it and another person I love concurred. That was 6 months ago.
I did have some doubt that I would have improved eventually with the EOD concept. I have none now. Well if I waited for years maybe. I can find no rational reason to wait and see.
So the cycle I experience right now when increasing or adding one supplement to another is that there is a brief uptick for a few days which I now just ignore. Then I feel a bit off and I go with that is my body adjusting. I need a lot of sleep which is hard as it is disruptive and emotionally I feel like I am going back to the severe fatigue.
I then have a few days of more energy and tend go over do and then feel off for a few days. I write over do when perhaps I should write I expand my limits.
It is loosely three days in each phase of the cycle where before it was a 30 day cycle before I had the best day in years. The cycle starts when I have the best day I have had in years. Best not being the same as meaningful which happens no matter what I do.
It is not predictable rather much less unpredictable. It helps a whole lot it is reasonable to expect I will again have the best day I have had in years even if the adjustment to that healing is a downturn.
Specifically I do not experience clinical depression or anxiety. I do have unpleasant experiences. I call one being in a high speed wobble and the other being sad and I need to cry and grieve. I do not see it as a symptom rather as my body adjusting. For me I was not able to grieve when in the throes of deficiency and now have to catch up. The effect of my experiences which I needed to grieve did not go away just because they are in the past. I need to grieve them now I am able to physically.
'Emotionally difficult' resonates with me. I think it must be the natural feeling of going un doctored, aka, saying farewell to the cult we were all born into.
There is the socially acceptance thing. I personally crave someone in the medicial field to know what I need to do. Maybe it is about someone else to blame if it goes bad.
The cult aspect is real. A group of people pretending to have special powers and insight others do no have and neither do they. Specialized knowledge is not a super power.
The ability to regurgitate information is a gift. It is no a super power.
That and the abuse of power given to them by a license given to them by the state.
The pretence to have special powers and knowledge can only be maintained in the presence of people who put faith in them.
Those who can collate information in context and see through the pretence, even daring to question, are openly despised in my experience. But the truly gifted medics see questions as a chance to expand their knowledge and do their own research. Our task is to find that type of doctor.
The pretence of special powers and knowledge exist in the presence of people that do not have faith in them. Specifically those licenced/hold the power to control prescriptions and testing.
It is great that you have found a truly gifted medic! We all deserve one. Making the assumption you are not still searching.
Perhaps the reason those that have not found a gifted medic have not done so due to fate not being kind to them rather than any fault of theirs.
It is possible that gifted medics exist that conclude that some patients require more injections than any existing guidelines indicate. If they do exist they are not coming forward.
I am still grieving my loss of time, effort and my suffering searching for a gifted medic.
I am grateful for those that published the knowledge they had as it allowed me to discover and explore which was part of my path to finding a way to self-treat more effectively than any guidelines that currently exist. That was my task, not a seemingly endless quest to find a gifted medic.
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