1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. Xara

    Xara Senior Member

    Messages:
    135
    Likes:
    49
    The Netherlands
    Really?! O dear. And you too have the C677T mutation, right? Do/did you have a B12 deficiency as well? (Mine was 119)

    Well, high time to reconsider my daily dose I think.
    I've decided to cut the Metafolin dose in half, because mayby one could define this strange pressure around my face as headache? Headaches are a side effect with methylfolate, at least that's what I have read. I have also taken vitamin B6, niacin and one capsule of Bio-curcumin phytosome (Now Foods). Hopefully my head pressure will go away, then I'll know for sure it was because of the methylfolate.

    When I think of it, when I started with methylfolate, 200 mcg/day, I did not have it. But that 200 mcg sure had effect: my mood improved and the fog was lifted.
    I'll stick to my mB12 dose for now, I have no longer tingling sensations or electric shocks, last week I had, and my speech (using the wrong words without knowing) seems to have improved a bit. I'll continue the aB12, I am still unable to go up 1 staircase without getting short of breath, same for taking a shower or getting (un)dressed. I definitely want to improve my physical strength.

    Thanks for mentioning my dose may be too high, Adreno.
    WendyM likes this.
  2. adreno

    adreno 3% neanderthal

    Messages:
    2,194
    Likes:
    1,261
    Tundras of Europa
    Yes, I have the C677T and also MTR/MTRR mutations. It is definitely the combination of mb12 and mthf that makes the poison. I will probably try to increase my mb12 dose at some point, but stay around the RDA for mthf.
  3. Xara

    Xara Senior Member

    Messages:
    135
    Likes:
    49
    The Netherlands
    MTR/MTRR mutations? Are those important? Should I have them tested? Via 23and me for instance?
    And em... RDA? Wazzat?

    Yes yes, I know, google is my friend. But it is so much easier to address a friendly neanderthal :)
    Sorry. If you're busy or something, I'll understand. And google :)
  4. adreno

    adreno 3% neanderthal

    Messages:
    2,194
    Likes:
    1,261
    Tundras of Europa
    Here is some information to get you started:
    http://www.autismnti.com/images/Website-_Yasko_Education.pdf

    RDA = Recommended Dietary Allowance. It's on every vitamin bottle.
  5. Xara

    Xara Senior Member

    Messages:
    135
    Likes:
    49
    The Netherlands
    adreno likes this.
  6. Jaz

    Jaz

    Messages:
    15
    Likes:
    1
    Hi everyone !
    I'm new here so please bare with me since all the useful info here has been very overwhelming for me and i need to catch up. I was diagnosed with B-12 deficiency around last year which apparently i somehow missed and never took supplements for it, which is quite sad since i avoid red meat and most meat products at all costs, i also suffered from IBS for a long time.

    2 months ago my blood-work showed severe vitamin D deficiency, borderline Iron deficient but no Vitamin B12 (doctor said my levels are within the safe range) i learned recently that it can't be trusted so i'm assuming that my latest symptoms which is this fast spreading Numbness (decreased sensation), weakness in my left arm, pins and needles, fatigue, neuropathy , depression got even worse and so on could be from my initially untreated B-12 deficiency. I doubt that considering my poor diet (almost no animal products) i have been receiving b12 from anywhere since then.
    So now i thought of starting with the protocol and i would really appreciate it if one of you guys can clarify some stuff.

    - i know the Methyl b12, metafolin and Enzymatic Therapy 1mg B12 infusion are the 3 important ones in the start up. but i'm very confused about slow or fast titration. I'm not sure which one would be suitable for me, do i just pick one and go with it??
    - about adenosylb12 & Jarrow B-Right b-complex : should i start taking them also from the first day ? or do i add them if i don't see any effects from the first three ? or should i avoid them completely since they have Folic acid and i don't wanna compromise anything

    - is it suggested to take Methyl, metafolin and Enzymatic Therapy B12 infusion every day with the same dosage that you start? or is there any of these supplements that need to be taken less after a few weeks?

    - what is considered the initial stages?? which is apparently when u introduce the possibly critical co-factors
    - i also take anti depressants...would that affect anything ?


    Thank you very much in advance
  7. pela

    pela

    Messages:
    90
    Likes:
    25
    Jaz

    Enzymatic Therapy B12 Infusion IS methyl B12, and it is the brand Freddd currently recommends as the most effective.
    You also will want metafolin --Solgar Folate is about the cheapest.
    AdenosylB12-- the current brands are Anabol Dibencoplex or Source Naturals dibencozide. Do not buy a brand with folic acid.
    Do not get Jarrow B right. That is outdated information, it contains folic acid. Get a B complex without folic acid.
    Have potassium on hand since most people experience a huge surge in potassium need when methylation/healing starts up.
    After you have begun with ADB12. MB12 and folate, you may wish to add carnitine or carnitine fumarate.

    I can't tell you how to titrate. I just jumped in and started taking all of the above with no adverse effects. Others need to start slowly.

    Why do you not eat animal products?
  8. Jaz

    Jaz

    Messages:
    15
    Likes:
    1
    Pela

    First of all thank you for your very informative response, i extremely appreciate it !
    i just looked up the list of the things i had ordered and 'Jarrow Formulas, B-Right' was one of them and apparently it contains Folic acid, so i ordered a new one.
    and thank u for the clarification since i was so confused between all the names and brands, i guess with time i'll get used to it.

    Well for a while my IBS made it impossible to eat anything that was hard to digest and red meat in general felt very heavy and i'm also lactose intolerant. also i went on a candida diet for a while so my choices were very limited and somehow i thought i was invincible and never took any supplements besides what i ate, which was mostly veggies and protein. my diet has Never been balanced unfortunately, and i always blamed my fatigue and other problems on my lack of Iron until the numbness appeared and i started to freak out.

    considering i was diagnosed with b-12 deficiency last year based only on blood serum test, i'm assuming things never really has improved. if it wasn't for my obsessive health anxiety i would never find that those tests aren't accurate and i wouldn't suspect anything.
  9. Idie

    Idie

    Messages:
    48
    Likes:
    20
  10. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Jaz;

    Hi Jaz; The symptoms of increasing numbness and tingling,(paresthesia), are strong neurological indicators of advanced B12 deficiency. People with this may need much more B12 than others. Even though other cofactors will help, I suggest that frequent, high dose B12 is needed very soon.

    I realize that folks here are taking a widely varied amount of B12, so I'll add that I'm taking 15mgs. daily of methylcobalamin sublinguals. ( I did have paresthesia.)

    I have needed more potassium with this high dosage. ( I take potassium gluconate powder, mixed in water, 3 grams daily, in divided dosages. Potassium citrate is another good type.)
  11. Jaz

    Jaz

    Messages:
    15
    Likes:
    1
    Hi Crux !!
    thank you for the fast reply

    would you say that it would be ok to only take Mb12 and the vitamins...instead of doing the protocols ?
    and are Adenosyl B12 and Metafolin needed for my improvement ?
    you also said you had paresthesia...how did you feel the improvement in the beginning stages ? did you feel worse initially?
    i'm very new here and i'm just trying to grasp if it's something i should attempt or not. I just really don't wanna start the protocols not knowing enough.
    my health anxiety is getting worse daily since the numbness is spreading and it has put my life on hold.
  12. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Jaz

    Hi Jaz; Maybe realizing that B12 deficiency is the cause of so many health problems will relieve some of the anxiety. The not-knowing part is fearsome!

    I wish it were possible to be able to have a standard protocol that would work for all, but as we see here, there is no one for all.

    I'll just write about what has worked for me, but try to include that other people will vary, even greatly.

    I place the Mb12 foremostly, because it has relieved most of my symptoms. ( If anything I take seems to interfere with it, I question whether it is necessary.) ( I'm still learning to do this.)

    When I started the Mb12, I was taking various B's and B-complexes. After many years of this experiment, I'm still having problems with dosages of the other B's. Some people need higher dosages of individual B's, some need lower. I would suggest beginning with low dosages, even very low, then observe over time.

    Many folks here are finding that they need extra folates, the active ones, and that the avoidance of folic acid is crucial. ( This is where I've become the odd one....I recently found that I'm sensitive to all of the folates. But my case seems to be really odd, so confer with others about folates.) I suggest getting tested to find out folate status - many people are having success with this.

    The Adenosyl B12 is powerful to me - I couldn't tolerate it for a couple of years. Some of my guesses are that the particular supps. I tried were too acidic for my damaged nerves, and , that I became overstimulated by the energy it produced in my body.

    Recently, I've been able to take small dosages of the Anabol Naturals brand dibencozide. ( only about 1-2mgs. once weekly) It's buffered and not irritating to nerves.

    When the neurological symptoms of B12 deficiency have advanced to numbness, it can take many months to regain feeling. The numbness will change to tingling - some of it will be uncomfortable. This will be a good sign of healing. For me, it took most of a year. I believe it can be faster for someone who discovers the deficiency sooner, and acts on it more assertively than I. My mistake was that I wasn't taking enough. ( I began with 5 mgs daily, but I reduced it when I felt better. not good ) Now, I still have a small numb area on one heel.

    I don't know how much MB12, you may need, but I strongly suggest that it may be the one to observe most closely.
  13. adreno

    adreno 3% neanderthal

    Messages:
    2,194
    Likes:
    1,261
    Tundras of Europa
    For what it's worth, axons (nerves) can regrow at about 1 cm per month. So it can take a long time to improve.
  14. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Good then , There may still be hope for this poor ol' "heel".
  15. adreno

    adreno 3% neanderthal

    Messages:
    2,194
    Likes:
    1,261
    Tundras of Europa
  16. Jaz

    Jaz

    Messages:
    15
    Likes:
    1
    Crux
    My numbness started with only my pinky fingers and then it was my toes and it started spreading from there about a year ago. and few months before that i was told according to my blood-work that i was B12 deficient, so considering that it did show up on the serum test it must have been very low and back then i was focused on other problems and was very ill informed about vitamins and their importance in body.

    2 months ago my blood test showed severe vitamin D deficiency and borderline Iron deficiency however my B12 was "within the safe range" but i'm not buying it since my symptoms are all pointing towards this. I have avoided most animal products for years now and never took any vitamin supplements so I'm not surprised.
    i guess i'll start only with Mb12 at first to see what it will do to me, do you raise the dosage when u don't see significant effects ?
  17. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Jaz

    My numbness also started in a pinky finger, I thought most people's numbness began in the feet. The neuropathy was in patches all around my body, central and peripheral. Unpredictable.

    Although vegetarianism/ veganism is usually implicated as a cause of B12 def., and at first I thought mine was dietary, it turned out that I was deficient no matter what I ate. ( My deficiency was revealed by an elevated MCV, MCH, etc., and symptoms.)

    I don't trust the 'normal range' for B12 at all. Once one begins supplementation, the goal is to keep serum levels above 1000 - this is from what I've read.

    If I could return to my past, I would have at least continued at 5mgs. daily or more. I probably needed more even then, but I didn't realize that so many other symptoms I had were from B12 def. Also, I learned about 'start up' effects from Freddd's writings, and had misinterpreted them. Start up effects can be similar to side effects. With B12, though, and my own case, I prefer to err on the high side. With other supplements, I would not prefer to err.

    If you don't mind my asking, what other symptoms are you having? It still surprises me that there are so many related to B12 def.

    There are a variety of approaches to treatment. The medical way uses the statement : until there is no longer improvement, for loading dose injections. This can be vague. You may want to increase until you feel stimulated with increased energy. This has been called brightening, or butt-kicking.

    Be prepared for the increased need for potassium. Some symptoms are muscle cramping, twitching, and if extreme, heart arrhythmias.
  18. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    adreno

    Thanks for the case report. I like to see this approach to herbs. Ashwagandha has been recommended to me before....I'll reconsider. I'm ready now for some more axons and dendrites. And yes to nootropics. " Speak Memory"

    It's interesting that ashwagandha has a steroid- like structure.
  19. Jaz

    Jaz

    Messages:
    15
    Likes:
    1
    Crux
    i have had very cold hands and feet for no reasons during night time my feet would get so hot i would have to wash them so i can fall asleep, i always look pale or idk yellowish, i don't remember feeling completely awake during the day, my memory is HORRIBLE (my nickname is goldfish), sometimes my hands shake a lot, anxiety and depression (which i have to take meds for), every week or so i get this awful stabbing pain that goes from my left hand (finger tips) through my arm and it feels like it goes right to my heart and chest (I've read it might be nerve pain) during that time using my left hand is very hard because when i touch things the pain gets worse, every few weeks my tongue feels really tired, starts pulsating, cramps sort of to a point that talking feels really difficult, sometimes at night i get this chest pain...i dont know how to describe it...it makes breathing really difficult.

    also i have this decreased sensation all over my body...it's just that in some parts are stronger like my legs up to my ankles and elbows and stuff...and the number parts are spreading (for the most part i do feel temperature and pain but the sense of touch is decreasing), coming down the stairs my ankles shake...and i think it's getting even worse tbh and it does that even when i'm standing, also my left wrist seems weaker than the right one..i am right handed but the left seems weaker than usual. during my periods my joints starts hurting really bad.

    my neurologist was baffled by how random my symptoms were...i still did an MRI which i'll get the results next week. But he said my numbness is just way to widespread for anything he has seen before. looking back i've been ignoring so many things thinking that's just how my body is.
  20. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Jaz

    Yes Jaz, yours is the classic example of B12 deficiency. There can be body temp. fluctuations, and feelings of coldness and burning. There can also be jaundicing. ( I was pale and waxy in some areas, and had mildly jaundiced eyes.) Tremors are common, loss of control of limbs. Moods and behavior can go everywhere, wildly. Memory and concentration, gone. Tragic.

    I'm surprised you haven't developed fatigue yet. Sometimes it's the first symptom, but we push past it, driven by the pain or other symptoms. ( I was hypomanic for a time before the crash.) I also didn't realize the fatigue because I was arranging my whole day around it. Jobs with shorter hours. Many breaks between chores, etc.

    I'm guessing that in the coming months, you may be impressed by the improvements. I suspect the neurologist will also be impressed.

See more popular forum discussions.

Share This Page