I just finished a successful 14 day trial. Injecting 2 mg 5 times a day including setting an alarm is a different world for me and trials are definitave in 14 days not like when I was under supplementing and it was 30 days and I was pretty sure the trial was positive.
I made a rational increase of 2.5 mg a day and that was too much healing. Had I stuck with it things would have likely evened out in a couple of weeks. I have never been a more pain more gain guy.
So I changed my regiment after three days back to the former trial with regards to amounts and changed the % of forms I was injecting to get more information as to the most effective ratio. Felt better than I have in three years immediately.
So the concept which I am still evaluating is to flood my body with B12 and heavily exercise for three days then reduce.
I am so far ahead of what those that successfully under treat B12 deficiency for money and have reviewed their conclusions of information that I will not try to correlate what I discover to their failed methodology and practice. The actual science I will use.
Successfully treating B12 at a level superior to the most robust protocol of EOD is not much of a standard to beat and anyone that injects more of that is at a superior level.
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WIZARD6787
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Thanks Wizard Yes! I totally agree with you!1 Though I am not taking the quantity of B12 that you are I totally get what you are doing. I never decreased from the initial EOD as EOD didn't do anything at that level for me. I have been injecting twice daily 1mg for 6 mths and 1.5 for the past 3mths. I have gained I would say 80% of my life back. This is from 10% 10 mths ago. I am about to start 1.5mg 3x daily as 80% quality of life is just not cutting it. If need be I will up that too. Nothing to loose tight? Everything to gain. Suboptimal is not quality!
Good on you! You are well ahead of the curve in successful treatment!
It is just not that there is no information to follow that is successful the amount of misinformation based on nothing other than it is repeated was a huge hindrance to me.
quick question! Now that I have started 3x daily b12 1.5mg do I increase my folic acid daily from 5mg to 10mg? and increase potassium and magnesium?? Thanks in advance
I have not finished my study of the testing of "cofactors and their limitations so I do not write about cofactors.
It i known that when B12 is supplemented the "cofactors" are affected. Although this could be that the body uses more cofactors when under supplementing. It also does not follow that more B12 will necessarily cause the body to utilize more cofactors. Human body does not work that way.
So I am no help. I have stopped all other supplements other than B6 for peripheral neuropathy caused by B6 deficiency. I stopped about 17 weeks ago and have not had anything but improvement in experiences associated with folic acid daily and potassium and magnesium. I will revisit the cofactors when improvement stops with my supplementation of B12.
Thanks wizard! Strangely I found removing muti b complex and replacing it with centrum 50+ gave me a noted improvement. I must have been needing something that is in that mix. I will be interested to learn what you discover when you do revisit it. I look forward to following your ongoing observations and experiences with b12 thank you x
>>I found removing muti b complex and replacing it with centrum 50+ gave me a noted improvement.
I have a friend who after listening to me drone on about B12 decided to take centrum 50+ and he experienced dramatic improvement.
I worked with the concept that I do not need to supplement perfectly nor can anyone rather I have to come close enough so my body can adjust.
I have eliminated all other supplements as I explore and discover injecting B12.
I used "Simple Spectrum" which is designed for autism which is neurological . It is pretty much someone did the work of evaluating supplements and created the formula. They did not insist the answer MUST be nutrition. Because it is related to children and they have better funding I concluded it might be safer. They also consider weight which indicated more knowledge than most.
I found it effective but that might have been s it included methylcobalamin.
Wow! So you tried the same thing that is really interesting. Nothing to loose! Everything to gain. I was feeling I had to stick to what I had been told we had to work with as far as treatment options. That was until I realised that for me I was still going to be unwell . Better!! but unwell. I need to be better for ME! I want more from my life.
With 3 x 1.5 hydro a day I have noticed my neurological symptoms etc rattled again. I take this that they are doing something. I will continue to find what i can achieve and also live with!
It was suggested to take a B-complex and I could find no data why or which form. Not the way I self treat. I did some study and came up with the simple spectrum as the most likely to be successful.
I work with the the concept that if I increase frequency or form and it has an effect I go with that is positive. I do question when I feel worse if I am making an error. To date it has eventually been very positive.
I did a lot of study looking for errors in the understanding of B12 before I made any changes. I have always been on solid intellectual ground even though I do not follow what is thought to be true.
Pretty much I could summarize the more B12 I take more frequently the more I heal. The more I take the more rapidly I heal.
I felt the best I have in years until 3:30 PM. I then started fading. Fading is not the same as being tired although I do need sleep and need it immediately or I will continue to fade. It is not severe and I can fight it off now if need be. Perhaps a remnant of fatigue.
I use the way I felt for 9 hours as my new measure of how well it is possible for me to feel.
I believed and still do to a certain extent that my body needs rest and sleep as it adjusts to having more B12. However this was not a tired it was fading.
I have done many trials and have observed what I call an overlap effect when I switch forms. One form or forms are in my body when I start a trial with another form. I generally cut back a few days between trials to minimize this effect. This is in part how I determined that methyl and adeno are the most effective.
I have as best I can through my trials established that cyanocobalamin and hydroxocobalamin were equivalent for me although that was prior to my understanding that B12 is only available for healing for 4 hours after injecting. That knowledge was a game changer in the right direction. It is unknown if that is true for anyone but me as it has not been studied and the conclusions/protocols based on retention times not rational.
Cyanocobalamin and hydroxocobalamin did result in improvement.
So I evaluated and concluded that it might be that I was incorrect in my conclusion that I was healing too fast and it might be that it was my ratio of methyl to adeno was off. This concept was born out by the last three trials I did even though one was only three days.
Supplementing the amounts and frequency I now do is a different experience than under supplementing. I get much quicker feedback from my body and I have much more experience evaluating now that is not applicable to when I was under supplementing.
Based on my work I decided that the most likely positive change to make was to increase my supplementation of Adenosyl by .50 mg 5 times a day including setting an alarm to get up in the night. Note: This is not a large % increase to my effective treatment.
One change in my not under supplementing and not experiencing symptoms that are diagnostic to B12 deficiency is less risk. Where before if I made a change the result could be disruptive or devastating and then as I was under supplementing it might take a month to recover.
Someone on this forum once wrote it is not race to see who can reduce the amount supplemented. This resonated with me and I added or a race to see how much can be supplemented. It is not a race to see who can heal the fastest. I did conclude that a protocol that resulted in changes over years was not rational and that most likely resulted from under supplementation.
Another change from when I under supplemented is I can now predict results rather than wait and evaluate. My prediction for this latest change is it will be an improvement and I will now be able to work on my physical endurance which is very exciting to me. I do have to guard against making my physical endurance my major evaluation point so I do not push too hard and then have to recover. This is not a accepting my life now has to be suboptimal rather an acknowledgement about how ill I was and that my treatment was suboptimal for three years as I did my study.
Unfortunately I can also expect to have an upset stomach as my digestive system heals. That should last less then 7 days now.
I always forget to write I am a 180 pound large frame male. I early on noted that it was not rational to not take weight into account when supplementing a vitamin. Speaks to the level of current medical understanding or rather lack of it.
I have decided that the first day it is sunny and warm and I think to myself so this is what it feels like to be alive I am going to drive to the ocean and go for a walk. Or as they say in the UK and I use as a pick up line in the USA. "Do you fancy a stroll."🙂
Thank you so much for your time and effort to share your progress and findings wizard! I am currently using hydroxocobalamin and have not yet tried any others. I experience the same fade in energy in the mid-afternoon that you do. It just comes over me. Sometimes I can't keep my eyelids open and it feels like a wave of exhaustion. I find I don't necessarily have to sleep but at least put my feet up for an hour or two or three and that I am right after that. I am interested that now you are not under-treating your condition it is clearer to you when you have achieved more or less. I also struggle with the time I feel it should take to feel my life is normal again. One thing I realized was that I have probably been affected by this for most of my life in some ways and that what I thought was normal probably isn't. Now I am working on readjusting my expectations to being more than that. I want to be in a place where I can plan without PA being the thing that makes me question if that plan is possible and then not doing it because I don't feel I have enough control over it to take the risk.
I also have hemochromatosis which my doctors don't seem to understand how to control adequately and as with b12 they seem happy for me to sit under what's optimal and then treat me with drugs to alleviate symptoms that occur from this. There is so little study on how one condition affects the other that no one cares. I do know that my body is using more ferritin to make new blood with the extra b12 which is in turn helping with the forever rising level of it from the hemochromatosis. So that is a positive if not enough. But for me trying to work out how to navigate my PA and at the same time having an excess of iron deposits in my body is a concern. Once again I will have to take control and try to work it all out. This is why I am so interested in your contributions of experience.
My advice on your stroll on the beach! Rug up regardless of the weather or how you are feeling. You will always feel alive!! JUST DO IT !! Enjoy!
I know nothing about hemochromatosis and I know how to stay in my lane. However when I get a diagnosis I see it as an opinion and depending on who made the diagnosis it would be a different diagnosis. I no longer see B12 as not being understood rather that is the norm.
I start with studying the testing and then study the diagnosis then study the treatment. I do not expect my study to result in the definitive solution. If you want an absolute answer ask a nurse of physician. A useful answer comes from study for me which is not limited to not being able to think or finding the most wonderful source and following.
I used to do what I termed Klunking. I would lay down and instantly fall asleep that has improved/evolved to the fading. I differentiate the fading from being tired and my measure is if I sleep during the day and it affects my sleep in the night than I should not have slept. I seem to have the hang of it at least for now. It does have a high degree of difficulty and I ignore those who preach about how to sleep.
I am finding as I heal that what I experienced before was told was normal and so I thought it was normal was not. As an example everyone's toes get cold and when they get warm it hurts. This winter has been different/better than my whole live. Less pain. This never prevented me from doing things outside as I just assumed the pain was normal. (This is from correctly treating with 100 mg of P-5-P) which I do after ignoring those that preach.)
Great you came to that conclusion and you have a result.
We are all so unique and I guess it is from this starting point that we will begin to find our answers. I am looking at your successes and seeing if I can apply them in a way my body might show improvement. It may be I need to adjust that again for me. Or! That it also works for me. So thank you!
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