@Little Bluestem The 1mg once/month dose recommended by your physician is quite conservative. My first experience with B12 injections was only a few years post-onset. These were 1 ml injected weekly at my physician's office. Initially they gave me "pep". However, my experience has always been that anything that leads to increased energy without correcting the underlying medical problem encourages me to do more than I can sustain -- hence, a crash.
The second time the dose was 1 ml once/month, injected at my local pharmacy. Had I perceived benefits, I would have learned to inject myself, as
@MErmaid does. However, this second attempt with B12 was shortly before a long-term crash which left me bed bound and unable to visit the pharmacy.
Apparently, high-dose B12 has been used for ME since the 1950's, although it has only recently been hypothesized that it may be helpful because it is a nitric oxide scavenger. According to Dr. Martin Pall, nitric oxide augments oxidative pathways. Oxidative pathways are known to be augmented in ME (
http://me-pedia.org/wiki/Martin_Pall ), and oxidative damage is increased in ME . According to Doctor Pall, the same process may be occuring in multiple chemical sensitivities. High-dose B12 is also used for other chronic conditions that affect the central nervous system (CNS).
Some clinicians prefer to use Hydroxy B12, and some Methyl B12. Both penetrate into the CNS, which is considered critical for effectiveness. Doctor Pall's protocol uses sublingual B12, but this may not be effective. Most ME practitioners recommend injected B12.
@MErmaid , according to my local ME specialist, the Cyanocobolamin you are using (the type commonly given to elderly patients with low B12 levels) should not be used in high doses. She claims it does not increase energy and cognitive function unless there is a B12 deficiency, and also that most ME patients do not have a B12 deficiency. Hence, B12 injections for ME patients are not being used to correct a deficiency. I'm glad to hear it's working for you.
Rather, the intent of high-dose B12 for ME patients is to decrease nitric oxide synthesis and oxidation in the brain. Methyl and Hydroxy B12 can improve symtoms of ME regardless of serum levels (which will become high as treatment continues).
The dose recommended by this specialist is 10mg/ml Methyl or Hydroxy B12 X 1 ml given by intramuscular injection as often as 2 - 3 times weekly. Based on this dosing schedule, patients are advised to wait for a month before assessing the effectiveness. So it seems in your case,
@Little Bluestem , it may be several months before you'd know if the B12 injections are helpful.
For those with allergies or chemical sensitivities, it is recommended to request preservative-free B12. I wasn't aware of this during my first attempt with B12 injections, which may explain at least some of the problems I perceived. For my second trial, I did request preservative-free B12, and although I didn't experience benefits, I also had no side effects. However, one must be aware that un-preserved B12 has a shorter shelf life (and it must be refrigerated).
I hope this is helpful. I'm certainly not an expert, but thought I'd try my first "semi-scientific" post. Perhaps others more knowledgeable can chime in.
:emoji_pill::emoji_syringe:
