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Why do i need MEGA DOSES of b12 to have any effect?

keenly

Senior Member
Messages
814
Location
UK
I have severe neuropathy and have had no NHS help for 8 years. I had nerve damage due to surgery, infection and lots of antibiotics which definately led to B12 defieciency as my 2009 MAP showed elevated MMA levels.

I do very well when on B12 HYDROXY and ADENOSYL at doses over 25mg each daily. This obviously costs alot so i have only done twice for a few months. I can't possibly afford this now or anytime soon.

Low b12 doses do nothing even upto 15mg. Without b12 my nerves are super sensitive, tight, i have sensitive eys etc when i use mega doses it stops and i am MUCH better. I can;t tolerate methyl b12 at all even 1mg gives me a horrible headache instantly as does Same(my genetics are constistent with these experiences).Dr Yasko suspects low lithium is interfering with my transport process and taking that will mean i need less b12.

I am currently fighting the PCT to get help funding and i am printing out studies, compiling a file etc for them.

any thoughts?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have severe neuropathy and have had no NHS help for 8 years. I had nerve damage due to surgery, infection and lots of antibiotics which definately led to B12 defieciency as my 2009 MAP showed elevated MMA levels.

I do very well when on B12 HYDROXY and ADENOSYL at doses over 25mg each daily. This obviously costs alot so i have only done twice for a few months. I can't possibly afford this now or anytime soon.

Low b12 doses do nothing even upto 15mg. Without b12 my nerves are super sensitive, tight, i have sensitive eys etc when i use mega doses it stops and i am MUCH better. I can;t tolerate methyl b12 at all even 1mg gives me a horrible headache instantly as does Same(my genetics are constistent with these experiences).Dr Yasko suspects low lithium is interfering with my transport process and taking that will mean i need less b12.

I am currently fighting the PCT to get help funding and i am printing out studies, compiling a file etc for them.

any thoughts?

Hi Keenly,

I hadn't heard from you in a while and hoped you were one of those who had gone off and lived life after being cured. No such luck.

I suspect that you need the large doses for the same reasons I do. First is that we both have neurological damage, for whatever reasons. The other is that there is impairment at getting and/or retaining cobalamin, in general, in the CSF/CNS. This affects the brain and the cord. There is reason to believe that two things could be going on. The Japanese study of intrathecal injection of mb12 and diabetic neuropathies indicated that the CSF cobalamin level from a single injection could last anywhere from less than 3 months to longer than 4 years, and this was a sample of only 10 people. Other studies as well as my own individual experience indicates that many folks, especially in the CFS/FMS community have difficulty getting cobalamin into the CSF/FMS And the dose you have arrived at is the same neighborhood the Japannese research has arrived at and I and others have arrived at as need fro CNS penetration. So far that holds up.

What we here don't know is what else you are taking.. What kinds ahd how much folate are you taking; folic acid, folinic acid, Metafolin, a mix? What about glutathione, NAC, whey?



tolerate methyl b12 at all even 1mg gives me a horrible headache instantly as does Same(my genetics are constistent with these experiences).

I sincerely doubt that the genetics say that mb12 will give you an instant headache. Perhaps they say that you have the potential to be an "overmethyaltor"? Would that be correct? However, that is a theoretical effect, presumably the hypothetical over methylation taking effect after you have become an adequate methylator which it is very clear you are not.

Clearly what you are doing isn't working. Your avoidance of the one kind of cobalamin known to have neurological healing characteristics that no other form has may be damaging you and preventing healing. Clearly you are not able to convert enough of the other forms to mb12 to have a healing effect. As SAM-e, the body's "universal methylator" is intolerable to you indicating extreme deficiency. You appear to be destroyng your nervous sytem in support of some elses hypothesis. Now it is possible that the other factors I mentioned type of folate, including even vegetable folate and glutathione/NAC/whey, could be very much making things worse for you. CoQ10 (are you taking that) could be the cause of the immediate headache. In any case there is no doubt that what you are doing isn't working. You are suceeding in getting cobalamin into your brain with dose, if no other way. It is NOT doing the trick. Mb12 could very well be 10,000 time more effective. I would be inclined to say that if youy keep doing what you are doing it's all downhill from here. Hypersenitivity is a characteristic of lack of mb12. It takes a long time of severe deficiency to casue that kind of hypersensitivity. Severe folate deficiency can also result in hypersensitivity. Both would be a double whammy. And withgout an effective amount of methylfolate you are not going to be able to make SAM-e and you won't be able to convert adequate amounts of adb12/hycbl to mb12 either.

So are you having an induced methylfolate deficiency in addition to starving yourself for mb12 or is it just mb12 starvation with adequate folate. If that is the case you could be casuing additional brain damage. by inducing even worse CSF/CNS mb12 deficiency which could result in an induced Sub Acute Combined degeneration. It causes demyelination in the brain and cord and becomes more and more irreversable the longer it goes on.

By the time MMA is elevated you are in BAD trouble and systems are breaking down. In the brain that appears to lead to Parkinson's if continued long enough, another form of brain damage from low brain b12. On the othert hand MS appears to result from continued mb12 deficiency in the brain. The difference between MS and SACD? The MS is more one sided, the SACD bilateral.

If you keep on doing what you have been doing, you will keep on getting what you have been getting. On the other hand, a switch in time might save your nervous system and/or life. If you want to examine it from the ground up applying what has been learned in the last year, I'll do that with you. Consider that some others with extreme sensitivity STARTED mb12 with literal crumb, a few micrograms at a time. You need to do something and in my opinion, that it is in addition to making sure that you don't have paradoxical folate deficiency or an induced folate deficiency or maybe some other surprises. To start with a ground up I would want to see `100% of all supplements you are taking, what you diet is like generally, ie vegetarian, meat eater, lotds of veggies, few veggies, junk food, whatever. Then also all the symptoms you have from the master list and any others that you also have.

Good luck.
 

aquariusgirl

Senior Member
Messages
1,732
paul, what did yasko recommend with respect to lithium? Does she think it helps with all forms of B12?
My lithium is in the tank, & I suspect that's why I didn't get more bang for my buck in terms of B12.