Thursday, April 17, 2014

Vitamin B12 and ME/CFS

 Last week, I wrote a post about methylation and its importance to people who have ME/CFS (and other immune disorders as well). If you haven’t read that post yet, I highly recommend you go back and read that one first because these two topics are inextricably intertwined. If you want even more detail than what I am providing here, ProHealth has an excellent article on B12 and Methylation that includes 225 scientific references!

So, with that basic knowledge of methylation, we already know that vitamin B12 is absolutely essential. It feeds a critical step in the methylation process, and without it, the whole process breaks down. That’s only the tip of the iceberg for B12 and ME/CFS, though.

Why is B12 so important to ME/CFS patients and what does it do?

We know that B12 is a critical component of the methylation cycle, which regulates detoxification, as well as critical processes in adrenal function, immune function, and the nervous system. Here are other facts about vitamin B12 and ME/CFS:

  • 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 acid (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.

This was all news to me! Many years ago, when I first heard of doctors giving ME/CFS patients B12 shots, I thought it was an insignificant treatment, something done when doctors didn’t know what else to do because there was a myth that B12 improved energy. Wow, was I wrong!

What is Vitamin B12?
B12 consists of 4 different but related –cobalamin molecules (so named because they contain cobalt):

  • 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


The U.S. Institute of Medicine recommends that all adults over 50 use B12 supplements, so given everything listed above, it seems that every ME/CFS patient could benefit from B12 supplementation. What are the best ways to get it?

  • 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 have long been the gold standard, there are some newer studies showing oral and sublingual (under the tongue) types of B12 supplements to be as effective as injections.
  • 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.

 From what I have heard and seen myself, many doctors still feel that injections are the best way to get B12 into the body where it can be used effectively; others use sublingual or oral B12.

Our Experiences

My son has been getting weekly hydroxycobalamin injections (1000 mcg) for several years now. We did not see an immediate effect, probably because his methylation process was so severely dysfunctional, and his system was overwhelmed by his three tick-borne infections when he started. Slowly, over time, as we addressed his methylation issues (see methylation post) and treated his infections, we saw that the B12 was having a positive effect. He feels a lot better, and we know the B12 is part of the reason why.  He also uses Black Bear Spray (a mouth spray form of B12) several times a day and finds that using it before or during a class, homework session, or a test helps to improve his mental energy and cognitive function.

He recently increased to 2 injections a week, and wow! He felt a huge burst of energy and improved cognitive function with that second weekly B12 shot. The effect was so positive that he now drives home from college twice a week to get a shot. Our next step – recently decided with the biochemist/dietician we consult with – is to switch him to daily shots that come pre-loaded so that he can do them himself at school, with hydroxycobalamin every day and methylcobalamin every third day.

As for me, last summer, I started using a product called B12 Extreme from ProHealth. I bought the product after reading that article they featured on B12 and ME/CFS because it is one of the few B12 products that contain all four types of B12. They are sublingual tablets, and, at first, I felt a mild improvement in energy when I took one each morning. I still take them every day, though I don’t notice that same burst of energy anymore, and blood tests done in December showed that I still had fairly low levels of B12. The biochemist/dietician we work with is reviewing my genetic test results to see if I have any problems metabolizing various forms of B12 and will make her recommendations based on that. I suspect injections may be in my future, too.

In summary, B12 seems to be essential to many body processes, and B12 supplementation should benefit anyone with ME/CFS. Just remember, though, that B12 is just one piece of a very complicated puzzle. If, like my son at first, you don’t see any benefits after a month or two of B12 supplementation, then you probably need to address other pieces of that puzzle, like other parts of the methylation cycle or treating underlying infections (if none of the typical ME/CFS treatments seem to work for you, then you almost certainly have underlying infections that need to be diagnosed and treated before you can move forward).

I will keep you up-to-date on my own B12 experiences, and I would love to hear about yours as well. Has B12 helped you? At what doses and in what forms? This seems to be a simple, inexpensive treatment that can help anyone with ME/CFS.

ADDENDUM 8/25/15: Our dietician recently advised us that people with ME/CFS should NOT take cyanocobalamin. The cyano- means it contains cyanide which must be detoxed 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. This is especially important to know because it is very common in typical B12 supplements and is the only ingredient in a new B12 pill marketed under the brand nae Eligen. Best to avoid cyanocobalamin and stick to one of the other 3 types. 


  1. That is a very interesting topic, my brother suffers by anemia, by the time I started to read about it, I realized there are so many types. The root of these disease is the lack of a proper alimentation. Unfortunately not everybody on this planet cand afford a good life. Before this article I was readig this one, maybe will help

  2. Anonymous1:14 AM

    Hi Sue:

    I use Methylcobalamin injections 2 to 3x times a week plus I use Glutathione injections twice a week. When I don't use the medicine, I feel a big difference. It really helps me - can't go to work on it but gives me enough to get out of bed for awhile and get things I need to get down while pacing.

  3. Hello! Thanks for posting again on #SmallVictoriesSunday! Your posts are very informative. I will be signing up for your newsletter! I also have found B12 to be very important in my health recovery from chronic autoimmune and chronic infection diseases. Thanks for posting!

  4. The post is very informative. I was diagnosed with a severe case of vitamin b12 deficiency a few months ago. Thus my doctor advised me to take Vitamin b 12 sublingual once in a day. I can feel the difference in my body after having this.

  5. I get the worst headaches when I take B12, OR folate, I tried caties whole food B, and Country Life and both did this, wish I knew what I could take but right now nothing.

  6. Elizabeth in South Africa4:22 AM

    Hi Sue, I am wondering whether the black bear energy spray might help my son. He is using a locally-produced sticker which is supposed to supply about 1000mg of Vit B12 (methylcobalamin) through the skin 2-3 times per week, but perhaps the spray would be a useful addition. Sadly, it has to be ordered and imported to South Africa - quite pricey. Could you give me an idea of how much of the spray your son uses? A bottle per week, or less? Thanks, Elizabeth

    1. Hi, Elizabeth -

      I don't know how much Jamie uses because he's away at school. I think he often forgets about the spray, especially now that he takes B12 shots every other day (which has helped tremendously). However, it lasts for MUCH longer than a week! If you zoom in on the label on amazon or anywhere else it is sold, you can read how many "sprays" per bottle. Like I said, Jamie isn't using it much, so I've only bought 2 bottles in the past year or so. I try to remind him to use it before exams and other times he needs an extra boost.

      There's also a link in this post to B12 Extreme which is the product I use - very high doses of all 4 types of B12 in a sublingual tablet. It's also expensive, from ProHealth, but it has helped me. Nothing beats injections for effectiveness, though, especially if you do the genetic testing and can confer with someone regarding which types are best for your son (I'll be glad to give you the contact info for our dietician/biochemist who helps us - she is actually from S. Sfrica though she lives in the US now and meets with her patients via Skype - just message me).

      Hope that helps -


  7. Anonymous12:35 AM

    Thank you for your good work!!!

  8. I saw my doctor today and he is referring me to a specialist as a possible CFS sufferer. I already have a B12 injection once every 10 weeks because I had a gastrectomy and so can't absorb B12 and I feel the benefit of the injection for a few weeks mid cycle, My question it normal to feel the benefit of B12 for such a short time or would I need more injections and if so how many could I safely have? Thank you for any advice you could offer.

    1. Carolyn - Everyone is different but I can speak to our own experiences.

      My son gives himself B12 injections every other day, alternating between hydroxy- and methyl- types. He started with weekly injections, but the effect wore off after a few days, so our dietician/biochemist suggested smaller doses at shorter intervals to keep him feeling good longer. Once every 10 weeks isn't much at all!!

      As for safety, you really can't overdose on B12 - it's a water soluble vitamin so you just pee out any excess.

      Good luck - I hope the specialist helps you!


  9. Not sure if this helps or if anyone is interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don't have intrinsic factor (so even if you don't have normal gut absorption, which would mean no more shots. Apparently it came out a month or two ago. Has anyone tried it??

    1. Thanks so much, Chloe! Coincidentally, a friend JUST asked me about Eligen this week and I hadn;t heard of it. Any idea why it is more effective? In the past, oral B12 was thought to be poorly absorbed. Anyway, thanks so much for the heads up - I will ask our dietician about it this week :)


    2. Anytime, Sue! Happy to share my findings :). From what I've read and heard Eligen B12 has a unique carrier technology, which is what allows the B12 to be chaperoned through the GI lining even in patients who cannot absorb B12 intestinally (and who lack intrinsic factor). So it works independent of those issues and can be used as an alternative to injections because it will drop the B12 directly into the bloodstream within 30 minutes just like the IM injection. The website has a lot of information on it (, but I'd be very interested to hear what your dietician has to say about it as well!


    3. Thanks, Chloe! I'm meeting with her on Skype tomorrow and will ask :)

    4. Hi, Chloe -

      I asked my dietician about the new Eligen B12 product - very interesting discussion!

      She hadn't heard of it but looked it up. Although the new method of delivery is interesting, this is not a product that is good for those of us with ME/CFS because the type of B12 in Eligen is cyanocobalamin. The cyano- stands for cyanide, and she said in order for the body to process the cyano-type of B12, it has to first detox it. Since detox involves the methylation process which is already dysfunctional in us, this means that the cyano-B12 is putting a lot of extra stress on our methylation process - not something we need. We are better off sticking with the other 3 types of B12, depending on our genetics and what we need from it.

      So, an interesting breakthrough but not effective for us - perhaps they will apply this new delivery system to other forms of B12 down the line.

      Thanks so much for telling me about it!


    5. Hi Sue,

      Ohh, I see. Very interesting. Yes, perhaps there will be other versions with other forms of B12 eventually! Thanks for getting back to me and looking into it!!

  10. Hi does anybody know where I can get the methyl B12 injection for my 6year old autistic child? I read and studied online that it's very very effective and widely used for ADHD and autistic kids in the USA. I'm so done with other traditional medications given to her their side effects are horrible and don't want to risk my child,s life again on the long run. I need help ASAP please. I'm based in joburg, thanks

  11. Hi -

    I don't know about SA but here in the US, injectible B12 requires a doctor's prescription and then you get it from a compounding pharmacy. Ask your doctor about it.

    Autism research has shown many links with ME/CFS, including the methylation problems - the two conditions may even be two different expressions of the same type of immune dysfunction and genetic predisposition. Family studies show multiple cases of ME/CFS and autism in families.

    Another thing for you to look into is low-dose naltrexone. My son and I have had good success with it for ME/CFS, but there was a lot of research done on using it for kids with autism. Some of the studies are cited here:

    More info:


  12. Thanks a lot Sue and sorry for the late reply. I was able to get the methyl b12 patch and the mouth spray will give both a trial and see.
    I will also have a look @ the links you posted. God bless you.

  13. Hello I live in Australia. Have had CFS/ME for 18 years.
    Am on the Methylation Cycle programme. Local GP been
    injecting Hydrocobalamin for almost 16 years. Recent blood test showed over the top high reading of B12. His advice was to just stop and wait. Did some research and found that perhaps I was more suitable to
    Activated B12 Methylcobalamin, which is in the Methylation caps. Both doctors said just to forget my high readings, which lowered, but then are still up high.
    Any information on high readings of B12, not being absorbed by body, or excreted, just floating around.
    Both professionals said to forget it. ???????

    1. Nothing to worry about - both doctors are absolutely right about that! The blood tests only show how much B12 is in your bloodstream, not how much is getting into your cells. Absorbing it into the cells/mitochondria is where people with ME/CFS have the most trouble and there is no way to test for that. So, you actually WANT high levels in your bloodstream to ensure that you are getting plenty into your cells. B12 is a water-soluble vitamin so if you have too much, you just excrete it in your urine - there is no danger at all. My B12 levels on blood tests are also really high, but I keep taking it daily. As explained in this post, it is absolutely essential for us for immune function, methylation/detox function, neurological health and much more. As for the type, hydroxy- and methyl- are both necessary to your body. Either is a good choice for supplementation. My son takes both, alternating injections of each every other day, so you might want to talk to your doctor about that. Hope this helps clarify some things for you.

  14. Sue, many many thanks for your explanation. Have been concerned about this for some time. Talking to my doctor could be a problem as he thinks the level should come down, so restarting injections may not be on the agenda for him. However, I shall pass on your tried and true information, and see what happens, as I no longer have injections; have activated Methylcobalamin in the compounded capsules for Methylation Cycle Programme, and some extra caps each day. I'm not keen on the IT world, but this kind of of communication makes it seem all worthwhile. I thank you for your caring, and will stay tuned to what I can learn from your efforts on this site.

    1. Glad to have helped! Yes, you are right - being able to interact with others in the same situation is SO valuable...and unfortunately, patients as a group know much more about this crazy illness than most doctors!

  15. Sue, I think I am still not clear on this. My levels were
    extremely high (over 4000 pmol/L - Ref (135-650) that is
    the guide line. It went down to 700 odd, then up to 3287.
    If the body excretes what it doesn't need, why am I not doing that? My GP will never inject while I have these
    levels. My life is in crisis, would this be affecting levels,
    to your knowledge? I understand the readings in US are most likely on a different scale, and this may be something you cannot answer. I take my present decline as due to the stress being experienced. Still, maybe there just isn't a test I can get for B12, and that's the way it is. Thanks, sincerely, Billie

    1. My levels were also in the thousands the last time I was tested - the dietician and my doctor agreed it was nothing to worry about as those tests only show the amount in the bloodstream. There is no way to test for how much is getting into your cells, but absorbing vitamins properly is a known problem in ME/CFS - so having excess amounts in the bloodstream just assures there is plenty available to get absorbed into the cells. Yes, your body excretes excess but not immediately, so if you are taking B12 daily or even weekly, some will always be circulating in your bloodstream - if you do a weekly injection, the amount in your bloodstream should go down from the day you get the shot to a week later. Finally, there is no harm to having excess B12 in your bloodstream, so there's really no reason to worry about it.

  16. Thanks Sue, I am on a Methylation Cycle programme, and take compounded caps with activated Methylcobalamin, as well as taking non compounded caps daily. The reassurance that high levels are not a
    problem is so helpful as the internet is a minefield for
    making it a concern. Also that I don't get injections and still have high levels is not a concern. Thank you for your help and consistency. Sincerely Billie

  17. Hmmm...I didn't realize you were taking TWO different B12 supplements every day - might want to to try just the one.

  18. I sent a comment but maybe didn't get through? I am
    taking only Methylcobalamin, 1000ug in the compounded
    caps part of Methylation Programme, and 2x 1000mg
    Thorne caps. So all Methylcobalmin. Any thoughts on that Sue, Many thanks Billie

    1. Why two different pills? Also, research shows that B12 in pill form is very poorly absorbed. Sublingual tablets (that melt under your tongue) are better & injections even better.

      As for type, decide based on its effects. Does the methyl- help you? You might want to alternat emethyl- with hydroxy- which typically helps to boost energy.

  19. Thanks Sue, at the moment it's hard to know what helps me as my life is in a big crisis. My long term GP has refused to inject me any more with the Hydro because of high readings, and here is no getting through to him on this. My Methylation Specialist says I am getting enough in the compounded caps - no getting through there either with her. Can't start all over with anyone else, integrative doctors very expensive in this country, and distance, so will try to get sublingual methyl and hydroxy. Thanks for your prompt answer, very much appreciated. Sincerely,

    1. Billie - I realise a couple of years have gone by, but I am in OZ and you can buy B-12 injections at chemists over the counter (hydroxy type). You can also purchase insulin syringes and self-inject. It is not hard .

    2. Thanks KristinDeV, appreciate your information.
      Am in a big hole at the moment, but, when I can
      shall look into getting the hydroxy B-12. Didn't know an insulin syringe would accommodate anything else, as live with a
      diabetic. shall look at the site. Sincere thanks, Billie. PS. Hard when the doc just
      doesn't want to have a look into into. Wanting to give me anti-deps now, and like
      the man below, Silver Silver, I wanted to punch him.

    3. Just an update from our family that might be helpful. I recently overcame my fears and switched from sublingual B12 to injections, too, like my son. And, yes, we do use insulin-type syringes. Some doctors recommend intramuscular injections for B12 (longer needles to get into the muscle), but we have always used subcutaneous (the shorter needles, like those used for insulin), and they seem to work well - my son sees a BIG impact from them.

      On the other topic you mentioned, don't discount antidepressants completely. They are important medications that have a couple of valid uses for treating ME/CFS. Low doses of TCA's (tricyclic antidepressants) taken at bedtime increase serotonin so you can sleep soundly and naturally (this is what happens in a healthy body on its own). On the other hand, SSRIs can help with Orthostatic Intolerance because they help to increase blood volume.

      In these cases, the AD's are not being used as anti-depressants per se (in low doses, as when used for correcting sleep dysfunction, they actually lose their AD properties. Ask your doctor WHY he wants to prescribe ADs and which type. Here is more info:

      Good luck with the B12!


    4. Thanks Sue for all that information. My friend uses a special insulin apparatus already set
      with insulin inside and is not at all like a syringe.
      Have to look into that when I can get energy.

      My doc wants me to take an SSRI Lexapro, 10mg. I have had in the past awful reactions
      to anti-d's, and it scares me. The reason he
      is giving them is because I had been having panic attacks in the night, and suffering anxiety and depression, I think due to serious
      issues going on in family with health, etc. I think he doesn't know what else to do with me as he is a local GP, not specialising in CFS/ME, and sees me as untreatable, although he knows I am on Methylation Programme with another doctor. Just had 3 years of non stop serious health problems with partner, plus a big back injury, so......

      Once again thanks for your help, so much appreciated, it is just at the moment, finding the energy and the means to do anything.
      My doc lives two streets away and won't do
      a house call. It is like that now, where I live anyway. I have know him for 16 years.

    5. OK, so it sounds like he definitely doesn;t know how to use ADs specifically to treat ME/CFS and is just prescribing it for other reasons.

      As for your "anxiety and panic attacks," those are almpost certainly caused or greatly worsened by Orthostatic Intolerance (OI) which can cause symptoms that mimic anxiety & panic attacks, like heart palpitations and panicky feelings. You absolutely should look into treating OI. Read that link I included above in our discussion here on OI and click through to Dr. Rowe's article on OI. Read it yourself & also print it to share with your doctor. The nice thing about OI is that any doctor will understand it once it's explained & it is very easily proven & diagnosed right in a doctor's office with a simple standing test (e-mail me at jacksonde at for instructions). The even better news?? Treating OI often brings dramatic improvement to ALL of your symptoms and will probably eliminate what you think of as anxiety & panic attacks.


      P.S. I don't think there is a doctor anywhere in the US who still does house calls, no matter where he/she lives!! ha ha

  20. Hi Sue
    I am 47 years, male. I have been suffering from CFS most of my life with my most severe bout lasting 3 years where I barely managed to scrape my daily duties through. By taking a lot of multivitamins and "Fatigue to Fantastic" vitamin powder (high levels of cyanocobalamin B-complex basically) and DHEA .. I was able to get my energy levels back up just enough to crawl out of the deep CFS hole .. not cured of course, just more manageable. Around this time, I went to the doc for a full blood work and I showed him my full list of vitamins, DHEA, no gluten diet I was on to improve my life.

    My blood work showed my B12 levels at 900 though I still felt like sh*t all day long. The PCP GP doc suggested anti-depressants and I was just ready to punch him.

    I have been able to acquire cyanocobalamin B12 injections online .. and OMG ! My energy levels have bounded up like I have never seen before and my brain fog has lifted and I can think more clearly.

    After reading your blog here I am concerned that I should switch out of cyanocobalamin type of B12. However, I am sure my insurance PCP will check my b12 levels and throw me out of his office.

    What is your doctor's name who is so understanding about CFS and B12 relation and is not bothered by high B12 levels?

    I am in Chicago area and I am willing to drive to any state needed and pay out of pocket to get prescribed better versions of B12. Heck, I will even go to Mexico if needed to improve my condition further.

    Finally are you sure about cyanocobalamin being bad for CFS? I have been on cyanocobalamin injections only for last 10 days now and I am seeing nothing but amazing results. Do I need to look out for any negative symptoms? Can you ask your dietitian or perhaps share the contact info?

    1. I am surprised to hear that you have done so well on cyanocobalamin, but I would say listen to your body - if you feel so much better on it, then I would stick with it. It's easily accessible & seems to work for you. We are all so very different. The only downside of the cyano-type of that the body must convert that cyanide molecule using glutathione, which is often in short supply in people with ME/CFS. But if it's working for you, I wouldn't mess with it! So much of finding effective treatments for ME/CFS comes down to trial and error.

      We work with a dietician who recommends our B12 - my son's Lyme doctor is the one who actually prescribes it, based on the dietician's recommendations. I am a total baby when it comes to self-injections & have stuck with sub-lingual tablets, though I know I should try the injections myself!

      The ME/CFS expert we see is Dr. Susan Levine in NYC, and I would highly recommend her, if you are able to travel to see her (once you are an established patient, she will work with you mostly thru phone and e-mail, with just an annual visit or two). Her background is Infectious Disease, so she will start with testing you for all sorts of common infectious agents that often work behind the scenes in ME/CFS and treating any that are positive - this can result in dramatic improvement for many people. She is also head of the CFSAC in HHS and one of the top ME/CFS docs.

      Glad you have found something that works for you!

  21. Hello Sue, it's Billie back..... wondered if you have heard of CFS/ME folks having low Ferritin readings? Seems strange to me, as it has happened within the last year of
    lots of stress and back pain. My B12 levels are still sky high, and just wonder if it is related. Anything you know about low Ferritin, apart from internal bleeding,
    would be appreciated.
    Sincerely, Billie

    1. Hi, Billie! Sorry for the delay - I was away on vacation.

      I really don't know anything at all about Ferritin levels, so I guess mine have been normal! But I have heard other patients discussing it. High B12 in the bloodstream shouldn't cause any problems - it is a water-soluble vitamin, so you just pee out the excess.

      Do you belong to any support groups for ME/CFS? This seems like a good question for a group. I like this one - very supportive, great admins, and lots of members to crowd-source your questions!


  22. Thanks Sue you were prompt. For the life of me I still
    can't understand why B12 levels remain extremely high
    if you pee the excess out, and are not even having injections, just tabs. Thanks for link. While I am where can I ask you about MTHFR blood serum tests, and
    whether they are applicable. My Methylation specialists says she didn't give me that because it's only for pregnant women???? Have been told otherwise by natururopath. Thanks Sincerely Billie

    1. Billie -

      My understanding on the B12 is that some goes through your GI tract and is excreted in urine & some remains circulating in your bloodstream, where those blood tests pick it up. However, keep in mind that blood tests can't show you how much is being absorbed into the cells - which is the part that those of us with ME/CFS have the most trouble with - so it's actually good for us to have high levels of B12 in the bloodstream to ensure there is plenty available to get into the cells.

      MTHFR tests look for genetic defects in methylation, which are VERY common in people with ME/CFS - sort of odd that your "methylation specialist" doesn't know that but perhaps she isn't familiar with ME/CFS. You can have it done yourself, with a genetic profiling service like 23andme that will give you your whole genome, then you can send that data through various interpretive programs available online. That's what my son and I did. Regardless of your genetc profile, if you have ME/CFS, then you can benefit from improving methylation - it is a known problem for us. The B12 helps a lot, but taking 5-MTHF supplements help, too, as well as a variety of other supplements. Here's my blog post on methylation:

  23. Sue thanks once again for your prompt reply. Your blog
    on methylation is so so thorough and I thank you. My "Methylation specialist" seems to know about CFS/ME, but obviously not. I will give my primary doctor another try for a test as he though the Meth spec would have done it, but I don't think he really knows what it is.
    Other than that, I am in Australia, and will look on line.
    Sue, I can't express how grateful I am for the effort you offer to me, and I admire so much your tenacity and the
    love and care you give to your son. Sincerely, Billie

    1. Thanks so much, Billie - that means a lot to me! I am glad to help when I can.

  24. Once again thanks for the information. Guess I will just have to believe that high B12 in my blood is not related to low Ferritin levels. I have read a few forums on Ferritin and it is another ambiguity for many folks. Shall continue to try and strengthen my absorption and eat
    iron rich foods. I am not on facebook so can't really access the link you gave me for crowd sourcing, but maybe can get a friend to help me with that.
    Re the 5-MTHF, here in Australia it is a different set up.
    My primary caring doctor has told me to get a colonoscopy for the Ferritin problem, and I am refusing at present, so I can't go ask him for a MTHFR test, and from what you have said, it will be helpful to take the
    5-MTHFR supplement anyway. Seems it can't do any
    harm, and the less stressful and economical way for me to go. Thanks again, Sue. Will let you know how I go
    in a few months.
    Sincerely, Billie Abbott (I am post menopausal just for your info)

    1. I hear you - I am almost 52 now and haven't had my first colonoscopy yet because my doctor and I know that the prep would totally wipe me out & cause a crash. She said there's a stool test for screening that insurance should cover soon.

      As for 5-MTHF, yes, I agree - it can't hurt to try since it is a known defect in ME/CFS. Just be sure to start at a low dose and work up gradually, since you don't know how you'll react & don't have your genetic data. Good luck! I've been upping my son's dose lately, and it seems to be helping.

  25. Sue thanks so much for that information. I have already had the Foecal Occult Blood Test, which is free for me in Australia, and it was okay. (My methylation specialist picked up the low Ferritin on cc of blood tests, from primary doctor, and did it immediately, and seemed happy with the results. I only see her every six months if I can get there. She was concerned at me having a colonoscopy) However, because the Ferritin level has not risen enough within 5 weeks of taking Floravital, good quality iron supplement, my primary care doctor is following his protocol and wants the colonoscopy as the FOBT is not conclusive in light of the Ferritin level. We are at loggerheads.
    No one else to go to here. Nutritional medicine naturopath has advised work on getting better absorption in the gut with Aloe Vera Juice - It's labour intensive, gave it up when I had a back injury a year ago - juicing the AV Barbadensis plant, with apple, ginger, lemon. Also slippery elm bark powder. Also
    Bioceuticals Instestamine. Also many other sources of
    iron in my food which had drifted owing to the extra weight of constant back pain. So I was very relieved to
    read your words, Sue, about the colonoscopy, I know it would really take me out, as I am crashed already. The only reason to have one I have found out (not from my doctor) for me, would be to detect any polyps and they nip them off at the time. If it were bowel cancer, I would not have any treatment. I would let it go. I am 70, and have had this CFS/ME for 20 years, so how could I go through that. I will put my money on improving absorption, etc. and now I know from you it is okay to go ahead gently with the 5-MTHF. Will get Dr's Best. I don't want to go back to my doctor for another blood test on the Ferritin until I have had time to see if I can raise the level. I think stress has played a big part in this result. Then, if he accepts me back! I can ask him for an MTHFR test.

    Thanks for hearing me Sue, means a lot to me. Good luck to you and your dear boy as well.

    1. Thanks, Billie. Sounds like a good plan for you. I do need the cancer screening, no question (I'm only 51 and there's been a lot of cancer in my family though no colon cancer that I know of), so we'll see how things go this year - I'm hoping I can get that FOBT test that you got - it's not mainstream here yet but should be soon. I'm lucky to have a doctor that understands ME/CFS!

      Good luck with the 5-MTHF - let me know how it goes!

  26. Thanks Sue, will let you know how I go. The FOBT for me was a positive/negative thing really because of the Ferritin low levels. So it would be good for you to have that tested (you probably do from the sounds of your doctor). Here's hoping an bulk billing integrative doctor moves into my area! Will order 5-MTHF asap. I feel
    pretty much alone in this, so you have been a comfort as well as a great help. Sincerely, Billie

  27. Sue you are still in my thoughts. Life has dealt a blow, with the death of my dearest sister. So I have crashed even more as grief takes its course. However, I still feel the 5-MTHF is of help, even though it is hard to tell at a the moment. Am coming out of the haze, I think. Will be in touch. Haven't seen doctor. Hope this isn't too personal for a blog. Sincerely Billie

    1. Oh, Billie, I am so very sorry to hear about the loss of your sister. I lost my father two years ago, so I know how devastating that kind of loss can be and how it can affect your health. My thoughts are with you - hope that memories of good times spent together will help you get through this difficult time.


  28. Sue, so comforting to get your reply this morning. It seems understanding is sparse at a time like this, I don't know why. Yes, my sister and I had an amazing relationship, unique, and I hope those memories can
    sustain me. Thankyou for caring.

  29. Sue forgot to say thanks for sharing about your Father,
    and I know two years is not a long time for the heart, and
    yet really an eternity.

  30. Hi

    There is a lot of precious information over here. I am suffering from chronic fatigue. B12 injection seems to help.I am in a doubt. What b12 shot protocol should I follow. How long can I take daily b12 1mg shot ? How should I get off it ?
    Thank you.

    1. Hi -

      Glad you have found B12 injections help you! I'm a bit confused by your questions. Typically, you need a doctor's prescription to buy injectable B12, so your doctor should calculate your dose (and when to take it) based on your size and your particular needs. My son and I alternate hydroxy- B12 and methyl- B12 - we take an injection every other day of about 3.75 mg (it is highly concentrated 25 mg/ml so the injections are tiny, only 0.15 ml), alternating the two types. That's what our doctors and our dietician determined was optimal for us.

      And you asked how to get off it, but earlier you said it was helping - why do you want to stop it?

      If I've misunderstood your questions, please reply with clarification, and I will be happy to answer!


  31. Hi

    Thank you for your reply. Actually I have suffered from chronic fatigue since July. Before that it was not like this. I am about 28. I have Gastritis which explains b12 absorption issues. My doctors ran whole bunch of body tests but everything came out normal including b12 which is 550 and D3 as 27. They declared my case as that of a depression. I googled and found cfs and its relationship with b12 and d3. I started on b12 on my own without doctors approval as they cant understand me. I took b12 for 4 consecutive days and then shifted it to weekly shots. I saw drastic improvement. After a week I walked for 5 mins with 5 kg load and it threw me back in cfs mode. I am currently confused about what b12 shots protocol should I follow.

    I am on my own since this is very rare in India and no one understands my condition. I am also afraid about doing intramuscular b12 shots daily. Is it safe ? It seems that you are using a subcutaneous b12 daily shot using a small needle. It's a good idea.

    What do you think about 5 consecutive days of b12 shots then keep increasing the gap by one day until I reach a stage of weekly b12 shots.

    Thank you. Your blog provides so much help. You are truly a good person with strong heart.

    1. Interesting that you can get B12 there without a prescription - that's good for you! Though I'm sorry to hear you don't have the support of an understanding doctor. Unfortunately, I'm not a doctor, so all I can tell you about dosing is what my son and I take (prescribed by doctors). I weight about 128 lbs and he weighs about 160 lbs and we both take the same dose: about 3.5 mg. We buy a super-concentrated B12 25mg/ml, so our injections are only 0.14 ml. And yes, we use subcutaneous injections (short needles) and see good results. We take them every other day, alternating methyl- and hydroxy- types. Do you know what type you are taking? As explained in this post, there are 4 types.

    2. I forgot to comment on why you "crashed" after walking. That is called exercise intolerance or exertion intolerance or Post-Exertional Malaise (PEM), officially. PEM - a sudden worsening of symptoms after exertion - is a defining characteristic of ME/CFS, so I guess you do have it :(

      B12 can help with energy and detox, but it does not usually affect PEM much. In order to improve your exercise tolerance and prevent crashing after exertion, you can try other kinds of treatments. The #1 thing to look at first is treating Orthostatic Intolerance (OI). This is an inability to maintain a steady BP and/or heartrate and is an integral part of ME/CFS. The good news is that it is something that is easily measured and diagnosed by any doctor with a simple in-office test...AND treating OI often brings dramatic improvement to all symptoms, including exercise tolerance.

      Here's more info on OI:

      And, how to do the OI in-office standing test:

      Another approach to help with all symptoms, including exercise intolerance, is to treat immune dysfunction:

      You may be able to try inosine (explained in that post) on your own - here. it is sold as a supplement with no prescription required.

      Hope that helps!