- Many people with ME/CFS and FM are actually deficient in B12
- Many people in the general population are deficient, including 78% of seniors in one study.
- People with ME/CFS often have low stomach acid and high bacterial growth in small intestine – both of which lead to B12 deficiency.
- Blood tests for B12 miss deficiencies 50% of the time (so if your blood tests show you have adequate B12 that is not necessarily true).
- B12 deficiency can cause IBS (Irritable Bowel Syndrome) symptoms that are very common in ME/CFS; IBS can lead to a B12 deficiency since nutrients are poorly absorbed – this is another of those vicious cycles present in ME/CFS.
- B12 helps regulate Natural Killer cells, a critical component of the immune system.
- In multiple studies, people with ME/CFS have been shown to have elevated levels of homocysteine, which can lead to cardiac problems; B12 helps to convert homocysteine to methionine.
- People with ME/CFS have been shown to have excess amounts of nitric oxide (NO) and peroxynitrite (-ONOO), a potent oxidant. Both of these lead to problems in multiple body systems that get progressively worse, as the high levels of NO and –ONOO in turn produce more of these compounds. NO also disrupts the methylation cycle. One form of B12, hydroxycobalamin, is a potent NO scavenger that can break this harmful cycle.
- Hydroxycobalamin –
- Scavenges excess NO
- Especially critical for neurological disorders and people with high levels of cyanide (smokers and those with certain metabolic defects)
- Methylcobalamin –
- Considered by many experts to be the most active form of B12
- Used directly in the methylation cycle
- Protects neurons against glutamate toxicity
- Promotes nerve cell regeneration
- Only form of B12 that helps in regulating circadian rhythms (sleep/wake cycle)
- Because it is directly used in the methylation cycle, it helps support production of serotonin, dopamine, and melatonin, which are directly responsible for good quality sleep.
- Adenosylcobalamin (dibencozide) –
- Another highly active form of B12
- Essential for energy metabolism
- Required for certain neurological processes
- Cyanocobalamin –
- Synthetic form of B12 not found in nature
- The most common form found in nutritional supplements
- Must be converted in the liver to other forms
- Lowest activity level of all forms of B12
- It is, however, essential in working together with hydroxycobalamin to quench NO
- Meat, eggs, fish, and shellfish contain the highest amounts of B12 in food but only about 50% of it is absorbed by the body (in a healthy GI tract) – IBS and other common GI symptoms in ME/CFS hamper absorption even further. Vegetarian sources of B12, like algae, are not bioavailable. So, supplementation is necessary.
- Most top ME/CFS doctors (Lapp, Cheney, Levine, DeMeirleir, others) routinely use B12 for their patients
- A study conducted by Dr. Charles Lapp (a renowned ME/CFS expert) found improved energy levels with B12 supplementation of 2500 – 5000 mcg every 2-3 days, even in ME/CFS patients who did not test deficient in B12.
- Though injections are the gold standard and are most easily absorbed by the body, there are some newer studies showing sublingual (under the tongue) types of B12 supplements to be as effective as injections. These come in tablets or sprays. We have still found injections to be most effective.
- Most direct benefits come from the hydroxycobalamin and methylcobalamin forms of B12, but the other two forms support and help these to work better, so all 4 forms can be helpful in ME/CFS.
- Studies show it can take 3-6 weeks or more to fully see the benefits of B12 supplementation.
My son did very well with the switch to alternating hydroxy- and methyl- type B12 injections and continues to use them. He injects every other day, alternating types, and can tell when he misses one! He is 23 now and injects himself (and told me it was much better doing it himself than having weenie mom do it!)
My son also told me to stop being a baby and switch to injections! I did and now use the same injection schedule that he does - every other day alternating hydroxy- and methyl- types. I can tell they are much more effective than the sublingual tablets I used to use - like my son, I feel the positive effects immediately. You have to purchase injections from a compounding pharmacy - any doctor can write a prescription. Our dietician calculated dosage for us - we both take the same amount (he is about 150 pounds and I am about 130). We take 3.5 mg in each dose, but we request a highly concentrated solution - 25 mg/ml - so that each injection is tiny, just 0.14 ml. I have heard different recommendations for both subcutaneous (just under the skin) and intramuscular (into the muscle, using a longer needle) type injections. We have always used subcutaneous, on the advice of our dietician, which are tiny needles that you barely even feel, injected into our stomachs, and as I said, they are very effective for us.
ADDENDUM 8/25/15: Our dietician recently advised us that people with ME/CFS should NOT take only cyanocobalamin. The cyano- means it contains cyanide which must be detoxed and coverted to other forms before you can use the B12. The detox pathway is part of the methylation process and uses up LOTS of glutathione which is already in short supply for us - so it does more harm than good if you take too much of it. Cyanocobalamin is, however, a part of the methylation process and can be taken as a small part of a product with multiple types of B12. This is especially important to know because as a manufactured form of B12, it is very common in typical B12 supplements and is the only ingredient in a new B12 prescription pill marketed under the brand name Eligen. It's best to avoid cyanocobalamin (or only use it in small amounts, combined with other types) and stick to one of the other 3 types, especially early on in the process of improving methylation.