1. Patients launch a $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!
California 2014: IACFS/ME Day Two: Translating Science into Clinical Care: 21 March 2014
Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who...
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. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City
    Hi Michael,

    I guess I could summarize your response by saying so long as you take care to supplement (especially potassium), no harm can come from trying out this protocol (well, some discomfort). I also like that you should be able to tell very soon if there is an issue.

    In some hundreds of people who have started and continued this the only DANGEROUS reactions I have heard of or experienced myself is hypokalemia. Some people think that mobilized heavy metals might be a problem. Unfortunately we are lacking the kind of research that would really answer that question. There was a discussion of mercury and it's mobilization by mb12. However, everything indicates that it would take huge single doses if IV mb12 to cause a toxic mercury reaction. Further the mb12 mobilization of the mercury allows it to be removed by the liver at a known rate which ought to clear it from the body over several years. Also, while mb12 has been researched for it's neural protective properties with some substances, that question hasn't been examined with mercury. There is no evidence at all that the kind of doses we are taking about here can cause a toxic amount of mercury to mobilize and the amounts needed to theoretically do so are 100x more. There is evidence that a lot of the damage mercury causes by remaining in the body is by disabling the usual trickle of mb12.

    If there are other possibly dangerous situations they haven't shown up yet. People with lots of reaction have hypothecized about lots of possible causes. Those that continue, have so far gotten through without trouble, with things normalizing over some months and continuing for more than a year. There is much fine tuning that can be done as things progress.

    The symptoms had been fairly vague and generalized for a few years prior to that -- not feeling well, little energy, feeling unstable in terms of focusing, lighteheadedness of sorts, bad memory. Had some stomach discomfort for three or four months

    Recently, the fatigue has been a bit worse, and at times, much worse.
    Only question is that is has continued to go up even after stopping these supplements for 3 months. Last measurement I took three weeks ago it was about 103. I do exercise, which is a new thing, which I guess could redistribute metals and continue whatever process was causing the increasing MCV.

    These are all typical active b12/folate realated deficiency symptoms. Elevated MCV almost always points at a lack of methylb12 and/or methylfolate or the cofactors needed for them to work. When the correct items are provided, the MCV can revert to normal in 90-120 days, the turnover time for red blood cells. However, when it is doing this the risk for hypokalemia is much larger, espcially at the high speed often achieved with mb12. 5000 units of vitamin D is not modest, at least not historically.
  2. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City

    Hi Xlynx,

    The first week I only had it under the tongue about 10 mins as no one had given me any instruction and then when I read your post stating 45 mins I started doing it for longer and then I could really see the difference in absorption as I felt about 3 times worse

    Good. You have confirmation that the AOR is effective and that longer produces more absorbtion. I know that feeling worse doesn't seem better but with mb12 it is demonstration that it is being active. The things that tend to react right off are also the things that appear to heal quickest. Make sure you add the various cofactors too.
  3. Potassium, etc.

    Fred: Thanks again. Is there a recommended daily dose of potassium and best source of it to avoid hypokalemia?

    If the MCV stabilizes eventually, can one go off the regimen? Would you expect to see some change in that direction with two months?

    Not sure you can answer, but is blocking of nutrient absorption into the red blood cels common to CF (as well as my theory about metals being the possible cause in my case)? I talked to my wife, and she said at her worst with CF, she was not absorbing anything (IV drips helped her a lot). I'm wondering if I have to be any more careful to look for hypokalemia if the potassium is effected by my theory of poor red blood cell absorption of all nutrients?

    Again, perhaps you can't comment until I get my specific B12 results, but if the doctor finds issues in any of the pathways the test looks at, can this regimen assist with "resetting" things (is that what we're doing with the high doses of this nutrients)?

    Thanks again.

  4. Fred: As you mentioned, I see there is some discussion on methylation and mercury detox in the frequent dose chealtion group I cited previously -- quotes this thread too. Seems this process can be quite a balancing act. Would it be reasonable to coordinate these supplements with long weekend chelation sessions, i.e, you'd skip other days? The theory is that the days you are "moving the metals" with improved methylation supplementation, you are helping it move out of the system with the chelators.

    Re: Methylation was :HELP! Please explain! Nicola


    Hi, all

    Methylation is a huge topic and I don't want to change the focus of this forum.
    There are loads of forums on methylation, so I'll try to answer all your
    questions, and then we should get back on topic.

    For methylation to work, you will need the active forms of the B vitamins -
    folinic acid, methyl B12. There are additional supplements (TMG, SAME, and
    other co-factors that can help methylation)but those are the main ones. The
    body's ability to convert the inactive forms - folic acid, cyanocobalamin /
    hydroxycobalamin - depends on the right enzymes being converted. Mercury messes
    these up, so it's best to take the active forms. Even these are not all
    effective. Read this thread to find out why:

    http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story


    At best, the inactive forms will do nothing, which is why some of you may not
    have had a reaction when taking B vitamins.


    Methylation is impaired in most of us, and we are likely B12 deficient

    http://www.ever.ch/medizinwissen/b12hg.php

    It seems that B12 deficiency can account for a lot of mercury symptoms -
    dysautonomia, MS, digestive issues, brain fog, fatigue - you name it...

    The active forms of the B vitamins will undoubtedly get methylation going. If
    you are toxic, and take the active forms of the B vits, then you will feel it.
    For me, getting methylation going means increased fatigue, and definite mercury
    on the move - feeling fluey, gut issues. Since taking the active B12s I have
    had three big herxes after which I felt better. I take chelate with DMSA on the
    frequent low dose schedule at the same time and this undoubtedly helps with
    mercury symptoms. My logic is, if I feel better taking DMSA while taking
    methylation supps then I must be moving mercury. The difference between taking
    DMSA while taking methylation supps and not taking DMSA is like night and day.
    Without DMSA - foggy, fluey, tired: with DMSA - clear head, energy, more normal.

    As you will read from The Hidden Story thread, if you are toxic and debilitated,
    getting methylation going will cause problems. There is a view that you should
    do things in a certain order: remove amalgams, chelate to reduce body burden,
    then get methylation going. It is pointless, in my view, to prompt the body
    into removing toxins if your detox pathways are compromised, and let's face it,
    they must be in pretty much all of us, otherwise we wouldn't be sick. If you
    are going to get methylation going, then at least chelate with DMSA (at low
    doses), otherwise you are going to get worse.

    I am not saying anything new here. In Amalgam Illness, Cutler talks about
    methylating supps, but doesn't talk about the intense detox it can spark. Other
    forums focus on methylation only, and have huge problems with detox. Me, I'm
    trying to do both.

    There is no doubt that getting methylation going and the resulting detox is hard
    on the adrenals. Make sure you have adrenal support if you need it. Watch for
    adrenal / thyroid symptoms. Go low and slow with the methylation supps. Inform
    yourself about the simplified protocol / active B12s. Many on the methylation
    forums take mere crumbs of the B vits every day, as they can't tolerate the
    resulting detox. I can tolerate 200mcg methyl folate / 2mg B12 a day, but that
    was after 100+ rounds of DMSA, and I am still chelating. I want to get strong
    enough to take the methylating supps and chelate with ALA at the same time, but
    I'm not there yet.

    Hope I've covered everything. Loads of reading to do if you google. Email me
    if you want to talk more...


  5. Jenny

    Jenny Senior Member

    Messages:
    1,209
    Likes:
    154
    London
    Can I ask who were the hundreds of people you watched?

    This is so...oo complicated - I can't see how you would ever know what co-factors you need or whether any adverse reactions were things to work through or not!
  6. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City

    Hi Jenny,

    Go read the wrong diagnosis forum which has been running for several years, 2 years with people doing an active b12 protocol. http://forums.wrongdiagnosis.com/showthread.php?p=218550#post218550 . You will find lot's of people reporting doing much better and going on their way. Not everybody heals but then this isn't a universal fix. People are sick with lots of other things too. It only works in situations where there is a nutritional deficiency of the type repairable by the given vitamins and supplements.

    One of the things I discovered in myself was that almost everything people were calling "adverse reactions" with methylb12 were nothing of the sort. They were abrupt startup of healing on hundreds of things. I'm healed of most all the things people here are sufferring from. You have to choose for yourself what to believe or at least allow as a hypothesis. The hypothesis I follow has lead to a lot of healing for a lot of people. Those who go by the adverse reaction hypothesis and stop the active b12s are still sick. That will be the case here in a year too. Those that continued the b12 despite the startup responses will be substantially better. That might not be true for every single person because there are always exceptions to everything. By and large the explosion of symptoms and changes that can occur with mb12 startup are affecting those symptoms that will heal given a little time. I don't know of anybody whose startup responses didn't fade with continued usage with the underlyiong problems improving. I gave mb12 and/or adb12 to over 1000 people face to face in the first few years adter I tried it. Those with no potential b12 deficiency symptoms had no responses at all. Those with a ton of symptoms had 2 tons of startup responses. Some people who had said "no symptoms" but had startup responses on further questioning said "I didn't know you meant THOSE symptoms which the doc said didn't matter". The results were very clearcut. About half the people had startup responses and all of them had symptoms. Those that truely had no symptoms had no responses at all, not even subtle ones. Those that said "Oh it didn't do anything, just gave me more energy and an improved mood" always had a lack of energy and/or a down mood. Those with lots of energy didn't have more. Those with a good mood didn't have a change. Those with symptoms, but not of those on the list pointing at b12 deficiencies didn't generally have any responses either.

    As far as cofactors go, yes it can be complicated. However, if you look at it as using a shotgun and taking all the basics and trying all the critical cofactors and eliminating the ones that don't help it is easier than if you try to pinpoint those exact things you need because those change as you heal and body resources become exhausted.
  7. JPV

    JPV Senior Member

    Messages:
    247
    Likes:
    19
    Hi Freddd, thanks for all your hard work on this subject.

    I finally got around to reading this thread and I'm very intrigued by it all. I placed an order with iHerb a couple of days ago. I was surprised to see that they shipped it out on a Sunday, very cool and great prices too.

    Anyway, I hope to get the order in the next day or two and then it's guinea pig time.

    I think someone just asked this question but I didn't see a response. What is the recommended daily Potassium dosage? Should I just follow the label or is there a greater requirement under this protocol?

    My plan is to proceed with the "Critical" and "Essential" supplements right off the bat. Then, if all goes well, I will introduce the "Cofactors" one at a time. Is there a rule of thumb for the amount of time that should be spent testing each Cofactors? And if one of them doesn't work, should it be eliminated or do I need to test it in different combinations with other Cofactors? Do you have any info on what the Cofactor interdependancies are?

    The whole method of implementing Cofactors into this regime is easily the most confusing aspect of it all. Any further clarification would be of great benefit. I realize that it's impossible to predict which ones are needed by which individuals, but any guidance on how to go about incorporating them and what the signs are of when it's safe to rule one out, would help out a lot.

    Using an Internet forum to experiment with such modalities, on a group-wide scale, is a very exciting idea, something unheard of until the advent of the Internet. I believe as time goes by, many important developments may arise from such activity. I have little faith in the orthodox and horribly corrupt medical field. An exercise like this suits my temperament just fine. I look forward to being a part of it.
  8. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City
    Hi Jvp,

    My plan is to proceed with the "Critical" and "Essential" supplements right off the bat. Then, if all goes well, I will introduce the "Cofactors" one at a time

    My suggestion is to start with the essentials and the basics. Then start the critical one at a time in a targeted way.

    For instance, there are so many ways for things to NOT work if you don't have the basics on board. Without A,D,E,C,zinc, magnesium, calcium, omega3 oils, all needed for cell formation and so on, the essentials might not work and the criticals won't do any better. You would have to try everything again after you started the basics to see if they work if they don't initially. Also, without the basics what happens is things work for a few days and stop suddenly. If all the critical and essentials start working suddenly together the startup responses might blast you out of the water. Start the basics, then either the adb12 or the mb12 for a few days and then add the other. As those smooth out then add a methylfolate. Sometimes nothing works until you add the methylfolate. Then depending upon how you respond would determine the order you might want to start the critical cofactors.

    Adb12, mb12, methylfolate, SAM-e, L-carnitine fumarate, TMG might each start like gangbusters. All together it might be too much. Several more can be real heavyweights too.

    Wehn it comes to the critical cofactors, one might need any one or any combination of them. Generally one adds one at a time working in sequence. So the L-carnitine fumarate and Alpha lipoic acid is started after the adb12. If D-ribose is tried it is started after the l-carnitine fumarate and Alpha-lipoic acid. The TMG is started after the L-carnitine fumarate and alpha lipoic acid but it might moderate the effect of the L-carnitine fumarate and make you think it wasn't doing anything if it was started first. After all are started, then one item can be stoped and started a few times to get a grasp on it''s effects. But each thing needs to be tested against the backround of all the others.

    As regards potassium, at least have it on hand. If you have a serum level test even better. Below 4.3 or so start 1 or 2 a day. Below 4 start 2-3 a day. Above that you can wait and see. If you suddenly get spasms while resting or any other sudden muscle peculiarity get some potassium into you. Too much potassium can be a problem also. My first experience with it was 3-4 days after starting mb12, again 3-4 days after starting adb12 and then again 3-4 days after starting methylfolate. If your MCV is above 100 also start 1 when you start the vitamins. I have talked to people who have had MCV at around 92 who have still had it so it may not be completely limited to blood healing but rapid healing in general.
  9. JPV

    JPV Senior Member

    Messages:
    247
    Likes:
    19
    Thanks for the response. You helped clarify a lot of my questions.

    Just for clarity sake, by "essentials" I meant A, D, E, C, zinc, magnesium and calcium. I pulled the term "essential" from one of the earlier posts that Cort made on this thread...

    http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story&p=924&viewfull=1#post924

    How long should I be on the "Basics" before moving on to the next stage with adb12 or mb12?
  10. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    1
    London, UK
    Dear Rich,
  11. Cece

    Cece

    Messages:
    8
    Likes:
    2
    What would cause extreme gum sensitivity from taking B12? I normally don't have this, and did not have it when doing B12 injections in the past. But, the sublinguals cause this. Is this a start up symptom? Should I take more to get over the hump or decrease the dose?

    I'd just like to know how taking B12 can cause this?

    Deb
  12. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    719
    Hi, xlynx.

    Looks like something was lost here. Do you want to give it another try?

    Best regards,

    Rich
  13. Fred: This is helping me too! Thanks. I wondered if whey powder/gluathione is antagontic to increased methylation and uptake of the B12 and folate? I thought I came across that somewhere. I take that in a smoothie every morning.

    Once you've slowly incorporated the criticals and guaged your response, can you take the sublinguals at the same time, or should they be separated?

  14. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City
    Hi Deb,

    A significant percentage of people experience this. I did too. The solution that appears to work for many is to move the tablet around a lot more. You can use then entire arch, from cheeks on one side to front and cheeks on other side. Some have used lower lips and arch as well. Also, under tongue works if you can be careful to not let it dissolve too quickly. But moving around a lot seems to help.
  15. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City
    Hi Michael,

    Starting all the basics, vitamins and minerals, is not difficult and rarely causes a reaction. The way to avoid stomach irritation with a large number of supplements is this, take them with a meal. Basically eat about 1/3 of the meal. Then take a few pills and a bite or two of food. Do this during the middle part of the meal and get all the vitamins in. Then eat the last third of the meal on top of the vitamins. The meal should have a mixture of protein, fats and carbs to aid absorbtion and prevent irritation. Taking a lot of supplements with only scrambled eggs for instance can cause nausea and vomiting. Add a piece of toast and fruit and no problem. Most of the supplements should be taken with food. Some should only be taken without food.

    SAM-e, l-carnitine fumarate, TMG for instance should be taken 30 minutes or so before food or at least 2 hours after on an empty stomach. Methylfolate appears to be absorbed better without food but with food works ok. B-complex and methylfolate need to be taken twice a day because of short serum half lifes for best effectiveness. I take a methylfolate with each dose of b12 without foods and at two meals. I can take fewer tablets with more doses with superior effectiveness as the serum halflife is only 3 hours.

    One can start with a single methylb12 under the lip at any time and no reason not to start it with the basics. To the some degree some of it will be converted to adb12 by most people and will also affect the energy production and mitochondria. If one starts the adb12 a couple of days before the mb12 then it separates to some degree the effects of each. The two tablets can be taken at the same time with effectiveness. The exact balance between the two is different for any given person so after you have started them, get going on 1 adb12 daily and work up the mb12 dosage. As the dosage gets higher the effects of another tablet diminish until finally an equilibrium is reached and no more difference is made by taking a tablet. That is when the startup responses start winding down. These are highly variable and on low doses can last for months and months for some people. This whole area of absorbtion and distribution to tissues is highly variable and methylfolate appears key.

    The glutathione (precursors) appears to be antagonist to methylfolate primarily and to neutralize the active b12s by turning them into glutathionylcobalamin and rapidly excreting them. Without the methylfolate even high doses of mb12 and adb12 are not effective. The onset of folate deficiency symptoms can be within hours while the b12 deficiency symptoms take days to weeks to show up. MY own experience of this was one of the worst. There is an entire separate thread with this discussion. http://forums.aboutmecfs.org/showth...duced-Methylb12-and-Methylfolate-Deficiencies


    One other main caution. CoQ10 being taken at the same time as mb12/adb12/methylfolate is started can cause a significant increase in blood pressure. This goes away after some unknown number of months and CoQ10 can then be taken again. It appears to be a problem only in the early stages of healing.
  16. Fred: You have a lot of information in that head of yours. Each time I get some pearls. Thanks... however, I will miss my morning whey smoothie! I wonder if that could of been making my MCV levels go higher over these months?

    Now, I wasn't aware that you would increase the amount of methylb12 over time. I did come across something about the 51 mg loading. What is the general procedure for increasing this supplement?

  17. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City
    Hi Michael,

    There has been a series of studies in Japan working with high dose mb12, on the order of 50mg per day. Generally they have found substantial results that fade after the trial is discontinued in several months. They hypothecized an upregulation of neural healing. Since then studies have been done showing that, so far, people with CFS/FMS/Alzheimer's have a depressed cerebral spinal fluid level of cobalamins (no distinction between adb12 and mb12) without regard to serum level, at least below 500pg/ml serum level. Additional studies done with direct injection of cobalamin into CSF in cases of severe diabetic neuropathies demonstrates pronounced return of function lasting as long as the higher cobalamin levels which varied from less than 3 months to more than a year. The appears to be some folks who loose it rapidly from the CSF/CNS. They hypthecized that there is a mechanism that keeps it out of the CSF/CNS in some people for some unknown reason. A few may be affected on both ends, keeping it out of the CSF in the first place and it being cleared rapidly from the CSF as well.

    I tried a series of increasing injections and found that the threshold effect was at about 7.5mg subcutaneously produing near immediate neurological changes that progressed for a few hours and then faded. The injections of that size produced a slight coloration of the urine. I did a series of tests to 25mg injected in a single dose. I did a series of sublingual doses and matched up the coloration and neurological effects. The matchup occurred at 7.5-12.5mg injected to 50mg sublingual at 45-120 minutes contact time. This was done with the Jarrow 5mg. It was repeated with the Country Life 3mg dibencozide. And what do you know, It had it own different effect but also casued the same nmatchup on coloration and threshold effect not matched by smaller doses of adb12. For me 3mg and above was all the same until I got to about 30mg for 120 minutes. Then WOW all over again. So that was what it was like for the mitochondria of the brain to be functional again.

    I had titrated the sublingual to 25mg in either single or multiple doses and had no body levelo effects left form any dosage. The hypothesis is that at a high enough level of cobalamin diffusion itself was enough to penetrate the CSF. It also appears that a combined dose of adb12 and mb12 of about 50mg also caused a CSF penetration by both kinds. It is this pragmatic test that is detailed elsewhere that I have suggested to see if a benefit could be had by injecting at that 7.5mg or hiogher level. I use 10mg 3x per day and it is fully equivalent to 7.5mg 4 times a day which is what I need for sustained imporovement all day.
  18. B12 Serum Very High

    Fred: B12 test results I received indicated a level over 1,000 in the serum. Doctor wants to do another bone marrow biopsy (I have not talked to him yet for more info. A biopsy done one a year ago, with MCV 6 points lower, showed nothing remarkable).

    In your research and on these boards, have you seen this kind of strange response due to a deficiency of either folate or B12, i.e., high serum B12 and elevated MCV (I guess low red blood cell)?


  19. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    1
    London, UK
    Hi Rich,

    Quite a lot of guess work needed for my last reply.

    I wanted to say thank you for your suggestion of the Methylation Panel test. I spoke to my doctor about it and he thinks its a good idea, he has never used the test before as he didn't know it exists but has reviewed and thinks it is worth doing. I spoke to the lab in America and they told me as I was in the UK I should get it done from The Dutch lab directly ELN, http://www.europeanlaboratory.nl/ and so I am presuming that it is the same test you have used before.

    I am waiting now for my doctor to get setup with them so I can do the test.

    Thanks,
    Jerry
  20. Freddd

    Freddd Senior Member

    Messages:
    4,302
    Likes:
    662
    Salt Lake City
    Hi Michael,

    Serum cobalamin of 1000pg/ml is above average but not "high" in any meaningful way as plenty of people have mb12/adb12 responsive deficiency symptoms to well over that. With the injections I take 3 times a day I doubt that my serum cobalamin falls below 200,000pg/ml. Even at levels like that I had an MCV of 99.8 for years. It took Metafolin to bring that down to the 95-96 area the last couple of times measured, but not since increasing Metafolin above 800mcg. Also, as serum cobalamin does not distinguish active from inactive and junk cobalamin or amongst types of active b12 you could have lots of adb12 and be lacking methylb12. Or it could be some other cofactor or something entirely. We can eliminate some things by trying them and I'll do some reading seeing if I can find some hints. I have seen vague suggestions of liver problems also being a cause of high MCV.

See more popular forum discussions.

Share This Page