Update

[WIZARD6787]

I am still working out my next trial. I am having issues with procurement which is no fun.

I now can reduce or eliminate a supplement and in a few days tell what the effect is, to my satisfaction. I call it incipit symptoms. I can tell they are going to return with a vengeance due to prior trials.

I eliminated my B6 and within two days I could tell symptoms of peripheral neuropathy were going to return. Went back to my former dose and within 24 hours it was no longer an issue

I then reduced my methylcobalamin and the length of time I could easily concentrate diminished and my hunger all but disappeared in two days. I also was nauseous in the morning. Went back to my former dose and those symptoms leveled out and are back to improving.

I ran out of hydroxocobalamin 4 days ago and the effect is a return of the difficulty breathing which I evaluate by walking a little ways up a local mountain on the same trail or swimming. I am going to try hydroxocobalamin SL and see if that works to try and cut down on expense. I now have the hydroxocobalamin to inject if the SL is not effective.

I cannot express the relief and freedom of having a protocol I trust to go back to.

Until proven otherwise 1 mg every other day of hydroxocobalamin is an absolute minimum and all symptoms of B12 deficiency are neurological. My personal conclusion based on all sources.

I also conclude that what I experience is from transcobalamin issues and has been life long and got progressively worse prior to treatment. I see permanent symptoms with the caveat only applicable to a specific protocol.

I have been reading about B12 treatment for those with a DX of autism, fibromyalgia and chronic fatigue syndrome. I have not come across a flow chart as of yet. The treatments I have come across utilize methylcobalamin with adenosylcobalamin and not hydroxocobalamin. They also seem much more informed about what other supplements should be taken in conjunction with B12 and how they work. They seem to use symptoms for evaluation and do not see the issue as hematological which it was 60 years ago and the current treatment of B12 is heavily influenced by that methodology.

It was not close to possible for me to evaluate symptoms as quickly as I can now prior to 6 months ago when I started injecting 3 mg a day of hydroxocobalamin.

I did a trial a couple of years ago with methylcobalamin for 120 days. I have come to understand that trial was 1mg a day and so not in conformance with my current understanding and will factor that in as I design a new trial.

It was a big day for me when I learned on this forum that it was possible to use up my B12 which is contrary to standard understanding of how the human body utilizes B12. It was helpful when I learned here I was not the only one who injected more than 1 mg every other day. Thank you again.

This will be the first trial I have designed where I have some confidence I can predict the outcome. We will see if I am correct. I have to review all the safety concerns. Oh bother.

In a real way the last two weeks have been a trial based on intuitive intelligence as I went along without as robust notes. I am confident and capable I can do that now. Once I design a trial I will go back to robust notes. I have got lots of information in the last two weeks as well as the last trial.

One fun thing I am experiencing is I think it must be mid afternoon as I have accomplished more by mid morning than I could a month ago.

[ACritical]

From time to time I do every other day Hydroxocobalamin injections for a week or two then taper off to once a week/10 days. That seems to work for me unless I have overdone activities, then re- load. I do take methyl folate drops under my tongue. Lions mane powder ( vitamin B’s ) regularly. Occasionally I also take Methylcobalamin drops under my tongue , these drops have no ascorbic acid as preservative so no bad migraines as result.

[WIZARD6787 in reply to ACritical]

Thanks for the information!😃 Curious, did you go through a loading phase of some sort?

[ACritical in reply to WIZARD6787]

Yes. Much longer then most people have. My neurologist was very thorough, took it literally loading until no further improvements. It got me my feeling back in my legs and feet. I do not need a walking stick anymore. Cleared my head and migraines, got my vocabulary back although not as good as before. It hasn’t done anything for my tinnitus. Deficiencies went on too long. I still have issues and my symptoms can quickly reappear when my vitamin levels drop too far. My eyesight is another measure I go by as well as climbing the stairs.

[WIZARD6787 in reply to ACritical]

Again, thank you very much for sharing. It's very valuable to me.