Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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B-12 - The Hidden Story

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

  1. imgeha

    imgeha Guest

    So I have questions wandering around in my mind about methylation and B12. Is it possible to overdrive the methylation cycle with the active B12s whilst at the same time remaining B12 deficient? Seems to me that this question embodies the different approaches between Rich (methylation cycle) and Freddd (B12 deficiency). Is there a symptom set which would help determine which approach we should follow? What should we be aiming for - getting methylation going or healing B12 deficiency symptoms? Is it wise to push through problems from overmethylation? Will sorting the methylation cycle cure B12 deficiency symptoms? How many people suffer from overmethylation? Is this all a very new area of research?

    Nicola
     
  2. Freddd

    Freddd Senior Member

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    Hi Nicola,

    Is it possible to overdrive the methylation cycle with the active B12s whilst at the same time remaining B12 deficient?

    I don't know. Another unknown is how much of the equilibrium balance that it has at one level of intake of certain nutriants will change by changing the balance of nutriants. My experience of energy production, coming up from a totally collapsed state is that after 16 years at rock bottom, any increase felt comparitively huge and wrong. With each change it felt like there was overshoot and then a new equilibrium was reached and everything normalized again and again. According to some researchers, there are at least 600 processes affected by the active b12s. The neurological effects are profound and can be very disturbing while happening. When feeling comes back from numb, first there is pain, then hypersensitivity and finally relatively normal feeling. When emotions come back there is exagerated emotionality, a kind of overshoot. They settle down to normal after a while. It's hard to say about the immune system but it does appear to normalize after a while. The GI symptoms often intensify and step backwards through them while they heal. This can take more than a year after the last needed cofactor is in place. I think that evaluating any of these things while they are happening is the chasing of phantoms. They change even more while the test results are coming back. Changes made on account of them are wrong over and over because the changes made on last weeks state are quite outdated next week. The gist of what I'm trying to say is that all systems appear to tend towards normal over time but that they fluctuate faster than the fluctuations can be intentionally damped out so reactions to them are always out of date and wrong. Now perhaps my view is influenced by a lack of money and insurance and that I can't spend endless dollars monitoring the process monthly even though my doc was amazed with the changes that were visible to the entire office staff monthly for more than a year. Also my experience was that the interventions that were made were made through the years were virtually always wrong becasue they were based on incorrect assumptions and lack of understanding. As the result of the process when allowed to run to completion was rather profound healing, it is likely all we would have done was to spend a lot of money messing it up.

    Is there a symptom set which would help determine which approach we should follow? What should we be aiming for - getting methylation going or healing B12 deficiency symptoms?


    As the screwed up methylation apopears to be just one of the multitude of b12 deficiency signs and symptoms I don't think that "or" is the right word or question. It seems reasonable that healing the b12 and folate deficiency symptoms will generally end up correcting hundreds of problems, some of which might also have methylation dependent upon them so it may take multiple steps for that to correct. I spent near $10,000 a year for 10 years chasing phantoms, all the many changes in my very deranged system and never came up with anything useful, except that my testosterone was way low, which is a known b12 deficiency symptom. Nobody ever put all the test results together with all the symptoms and said "Oh, we are describing the various aspects of multisystem failure brought on by four active b12 deficiencies". The things the tests detected were not CAUSES, they were EFFECTS from an unknown cause. There are hundreds of transitory effects at every stage of this deficiency. Messed up methylation appears to be another transitory b12 deficiency effect that will go though multiple stages during healing. I don't know this for a fact. This is my opinion from watching a lot of people go through the healing process. Just remember, if there are 1000 steps to heal a particular thing, that is just 999 different ways to be wrong until the very last step.
     
  3. garcia

    garcia Aristocrat Extraordinaire

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    Great questions Nicola!
    I've been following Fredd's writings for a while, and Rich's work for longer. Been itching to jump in on this discussion.
    Yes this is possible. I did this recently. I upped my methyl b12 to 20-30mg sublingual in 1 day and started getting hyper-methylation symptoms. On the one hand my body craves b12 and I feel pretty good on it. On the other hand if I take too much my methylation cycle goes into overdrive.

    Symptom set probably not. But one thing which will determine which path you follow will be:
    1. What's your reaction to high doses of b12?
    2. What's your reaction to the active folates? (with & without b12)

    For me my reaction to high doses of b12 is generally positive, thus corroborating Fredd's approach. However once I start taking the active folates I get massive die-off/detox/inflammation and b12 greatly exacerbates this. So for me I can't do Fredd's protocol (unless I deliberately remain folate deficient which doesn't make much sense).

    I think getting the methylation cycle going is the main priority.

    No, very bad idea IMHO.

    Yes I would hope so. Or at least it would stop further damage from occurring, then later on you could raise b12 if needed.
     
  4. starcycle

    starcycle Guest

    Hi garcia - what are the symptoms of overdriving the methylation system?
     
  5. Sushi

    Sushi Senior Member Albuquerque

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    Hey, Garcia, from my personal experience (2 years on Rich's protocol) I second everything you have said. Yeah, we are all different, but I think balancing the methylation cycle is a priority that will give us better options for dealing with the other aspects of this disease. And the Vitamin Diagnostics panel (even with all the quirky little roadblocks to actually getting it) is an essential tool to know how it is working for you.

    My experience, but, yes, I have tried a lot of variations of these protocols as well.

    Sushi
     
    Lotus97 likes this.
  6. garcia

    garcia Aristocrat Extraordinaire

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    Hi Starcycle, its difficult to describe because they are all quite subjective (but definite) symptoms. Its basically a particular pattern or constellation in my case involving:
    - getting a "metalic" feeling in the head
    - getting excess hcl being produced in a run-away fashion (with minerals being leeched from my teeth in extremis).
    - nausea etc.

    I'm not saying any or all of these are direct effects of overmethylating, they could very well be indirect effects due to one or more body substances being overproduced by methylation. Also some of them are likely to be particular to my particular health conditions.

    But the general point is that overmethylation is felt as a run-away increase in certain body substances which can have wide-ranging physiological effects.

    If someone wanted to find out what overmethylation felt like, one way would be to take large amounts of e.g. methyl b12 and note if they have any peculiar physiological reactions (not that I am advising anyone do this).
     
  7. starcycle

    starcycle Guest

    thanks garcia, that helps to know what to look out for.

    I took 1mg total yesterday, got kind of wired from it, had some methylation twitching in my arm muscle, and it cranked up some anxiety a few notches -- the awful kind that used to be alleviated by the folate.

    Does it sound like I'm getting too much? Should I decrease the dose to say half for a while, or try to work though these symptoms?
     
  8. Freddd

    Freddd Senior Member

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    Hi Starcycle,

    You are taking a 1mg sublingual which at best puts 150-250mcg into serum. The symptoms you report are completely normal startup symptoms. Some people map the feeling of the nervous system coming back to life after years of severely depressed malfunction as anxiety. If you feed the anxiety and stop and start and stop and start this appears to buildup increasing occilations producing a worsening seesawing effect with each cycle and increasing the the anxiety till anxiety symptoms predominate. This is purely observational. My suggestion is get the b-right and other basic cofactors in place along with methylfolate and realize that the feeling will subside over time, usually a relatively short period unless anxiety comes to predominate and that becomes a self perpetuating thing. Benign fasiculations occur as the nerves get eratic signals with healing effects on the nervous system. It is also a deficiency symptom that happens at a certain stage of deterioration. As the symptoms go backwards during repair, they happen again. Omega3 oils allow the repair of the nervous system in conjunction with the methylfolate and basics.

    You are getting rapid results. If you interpret the temporary effects as such you will do better faster. If you interpret them as cause for concern and anxiety you will get that instead. I've been through the whole thing, including multiple setbacks for a number of reasons which have been the cause of much debugging and experience. I am healed of virtually everything that troubles people here. The things remaining for me are neurological from severe long term deficiency, subacute combined degeneration, and a car wreck. Those have not been near as easy or quick to repair as the CFS/FMS symptoms, and they easily demonstrate when I get an inferior batch of mb12.
     
  9. Freddd

    Freddd Senior Member

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    Hi Garcia,

    I take 30mg of mb12 daily by injection, the equivalent of 150+mg sublingually daily and have experienced no problems at all, only healing. This is what research has shown, that there are dose proportionate healing effects with methylb12 unlike hydroxyb12 and cyanob12. The 30mg per day is what might be called a "second step" as it is discontinous in effect from lower doses and appears to upregulate neural healing as reported in Japanese literature dealing with neurological disease. In the studies I have read they give no indication of any adverse effects at all except that the improved funtionality decreases afer the dose is discontinued. As they have not done long term studies it is unknown how much of the effectiveness in the CNS is permanent. At least one physician places that point at 3 years of unbroken therapy, which has been a challange for me due to inconsistant b12 quality.
     
  10. lebowski

    lebowski

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    hi garcia

    " - getting a "metalic" feeling in the head "

    have u ever heard anyone else had this ? and " nausea " .. this can be from detox too right ?
    and
    if u describe overmethylation as
    " its difficult to describe because they are all quite subjective (but definite) symptoms"
    anyone having detox ( which is good ) can interpret this as having an overmethylation reaction ..

    so there should be caution not to advice high dose mb12 either .. maybe u should leave the advice to do or not to do to fredd or rich vank on this one .. or at least ppl should realize u dont advice " high dose mb12" depending on ur interpretion of ur nausea and metalic feeling in the head symptom ..
     
  11. starcycle

    starcycle Guest

    Hi Freddd, I guess I'll take your word for it that these are startup symptoms and forge ahead. The anxiety is more of an OCD type of anxiety than feeling uptight, etc., so it's a bit tougher to deal with. But I am also definitely a bit mentally wired from the 1mg (1/2 mg today so far). b-right is out for the reasons I mentioned before about B intolerance. I have some P5P, B1 and B2 I might try adding at low dose.

    As long as symptoms are manageable at 1mg, what would be your time frame for increasing to 2mg? Didn't the protocol page say something like around 3-4 days? How long or what dosage before one can expect the symptoms to start receding more?
     
  12. garcia

    garcia Aristocrat Extraordinaire

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    Hi lebowksi,

    Which is why I hesitated to describe my reactions & put lots of qualifiers there. You are right people shouldn't interpret detox as being due to overmethylating. The two are completely different (for me at least). The normal reaction to mb12 is neurological healing and/or detox (if taken with folate). If someone is taking just 1mg it is highly unlikely what they are experiencing is due to overmethylation.

    If you already know what detox feels like and you start experimenting with high dosages of mb12, and you get completely different symptoms to detox and some kind of runaway reaction then overmethylation is a distinct possibility.

    As a rule I don't give health advice. I leave that to people like Rich & Freddd. I'm just confirming what Rich said that if you take too much mb12 you can get overmethylated, since I haven't heard anyone else ever confirm this, and feel its an important (or at least interesting) issue, esp with regard to Freddds high dose protocol vis-a-vis Rich's interpretation of things.
     
  13. Freddd

    Freddd Senior Member

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    Hi Starcycle,

    The effects of mb12 are not linear. The first mg generally produces more effects than the second, etc. Above about 5mg (sublingual) it starts falling off quickly. Also, when the body has all needs and parking places occupied the perceived rate of change tends to disappear rapidly. It's INCREASES we feel. My experience was that the startup went on for a couple of months at 1mg/day but once I moved to 5mg startup symptoms started fading witin days and disappeared within a week or two even when dose was increased to 10 or 15mg/day. At 1mg per day it actred like the excretion was so rapid that it never built up to equilibrium. The effects of the b-complex or components could be entirely different on the mb12 and the effects of mb12 could be entiorely different on a b-complex. These things all work together and taking the responses in isolation do NOT predict the combined response. Therein lies the problem. Methylfolate is the single most important cofactor that modifies how mb12 works and mb12 modifies how methylfolate works. One without the other is the sound of one hand clapping. Same with adb12.

    Every part of the body is subject to healing with mb12 from neurology to epithelial tissues and GI to endothelial tissues, blood, immune system, hormones, etc.
     
  14. garcia

    garcia Aristocrat Extraordinaire

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    Great observations Freddd. I agree with you 100%. MB12 and folate work in combination and taking one in high dosages like I did (namely MB12) is exactly like the sound of one hand clapping - or one cycle spinning (at high dosages spinning out of control).

    So we have unanimous agreement on this issue (that both B12 and folate need to be taken together). That rules me out of the high dose protocol since I can't take high doses of B12 when on the active folates. And judging by the reactions most people get to Rich's protocol (i.e. the need to start at very low dosages and increase very slowly) I suspect a lot of people with CFS fall into that category.

    Personally I'm surprised that anyone with CFS can tolerate high dose MB12 along with active folates, but clearly they can judging from the success you and others seem to have had with your protocol.

    Having had a broken methylation system probably for the best part of 10 years, I've accumulated too many toxins/infections to proceed at anything other than a very slow pace.

    BTW I'd like to clarify the reactions I got to high dose MB12. Although I've attributed it to overmethylation, the main reaction is an uncontrolled increase in stomach acid (the other symptoms seem to be secondary to this). I believe this is due to overmethylation, although I don't know the exact mechanisms involved.
     
  15. xlynx

    xlynx Senior Member

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    This post is really interesting however it is huge and taking me some time to get though. I have been taking mb12 sub lingual for 1 month and felt some boost from it early on however now when I take it I appear to be getting dizzy / light headed for several hours. I cant be 100% sure its the b12 but I am fairly sure it is.

    I also take B complex with 800mcg folic acid

    Any ideas?
     
  16. starcycle

    starcycle Guest

    I'm running into the same problem except in reverse. I can't tolerate the folates, and the B12 is wiring me up too much, causing worse fatigue and brain fog the next day. I think pumping in more b12 is just further imbalancing the system. I think I will have to forgo the protocol at least until I can get the methylation panel done somehow and try to find out more about what's happening.
     
  17. dmholmes

    dmholmes Senior Member

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    This thread is getting long, but nowhere near the thread this is based on. You can get responses regarding your symptoms from more people on the protocol there.

    Read the active B12 basics to see what essentials you might be missing.
     
  18. garcia

    garcia Aristocrat Extraordinaire

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    Starcycle, what dosage of the active folates have you tried taking?

    Most people on Rich's protocol start off at very low dosages, e.g. 1/20th of a tablet or even less, some as low as 1/100th of a tablet.
     
  19. starcycle

    starcycle Guest

    About 1/1000th of a microgram. I react to just a few specks put on my finger from a 400mcg. capsule.
     
  20. Freddd

    Freddd Senior Member

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    Hi Garcia,

    In observation of the effects people achieve, hundreds over the past few years, the taking of methylfolate without mb12 appears to significantly worsen the reactions people have when they do take mb12. The preponderence of evidence appears to indicate that starting with mb12, or adb12 (of whatever dose, but not going real high on one before adding the other, then adding the other and increasing them to reasonable levels in alternation, THEN adding methylfolate, appears to be the least reactive path. Taking methylfolate and hydroxyb12 appears to create a severe hyper reactive situation. Mb12 HEALS the gastric mucosa which becomes inflamed and broken down without it. Use moderate dose mb12 if high dose causes a problem and give more time for healing to occur before increasing the dose.

    As far as I can tell the very taking of methylfolate and hydroxyb12 makes the reactions much worse. Elsewhere, usually only the people who had started with that (methylfolate and hb12) had such severe and prolonged reactions. It very much appears to be an artifact of the protocol itself.
     

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