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methyl B12 spray

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by justy, Nov 17, 2010.

  1. justy

    justy Senior Member

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    Hi all, i know there is a B12 thread, but have you seen how long it is! it would take me a week to recover if i had to trawl through that.

    I have been taking methylcobalamin in tablet form 50ug per day. But now want to try something with a bit more oomph. I purchased a readisorb methyl B12 spray (liposomol complex) 5oomcg . And now i have cold feet about using it. Has anyone else tred this? does it have any side effects at all?

    Also another weird thing is the website says 5oomcg per spray, but my bottle says 50 ( although the writing is tiny i can hardly see it) But they dont sell a 50 only a 500.
    Maybe i just need some reassurance, i am so terrible at taking new things, but usually o.k once i get going.
    Thanks, Justy.
  2. justy

    justy Senior Member

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    Still havent tried it, just waiting for a reply.
  3. August59

    August59 Daughters High School Graduation

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    Is the bottle setup as to where you could start off by doing approximately a half spray or maybe just a quick mist to see if you notice anything. Just a thought! Good luck and post back as I like varying how I take B12.
  4. justy

    justy Senior Member

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    Thanks august, i will have alook and see. Do you think the dose sounds very high?
  5. August59

    August59 Daughters High School Graduation

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    500 mcg is the normal dose for oral spays. How many times per day does it say to use it? Or, how many sprays per dose? I'm thinking 4 because 2000 mcg is a normal B-12 daily dosage
  6. Adster

    Adster Senior Member

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    That dose should be fine, you can kind of adjust it by how long you hold it under your tongue. Methyl B12 is poorly absorbed in the gut so you could start just by swishing it and then swallowing. Then just keep it under the tongue for a bit longer each time, eventually for as long as you can.
  7. justy

    justy Senior Member

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    Thanks adster - good advice.
    August -the dose says once a day. So not high then.
  8. justy

    justy Senior Member

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    Hi all, i started the spray about a week ago. all has been well with it so far. I can just do a quick rather than long squirt to begin with and have been buiding this up over the week. It tastes horrible though - i think its supposed to be cherry flavoured but its just nasty and bright red!
  9. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi Justy, I was looking at the Liquid Methyl B12 also. I don't know which is better....the liquid (or spray) or just a sublingual tablet. I see that Douglas Labs and Pure Encapsulations (and others) make a liquid Methyl B12. I don't know how long a person should hold the liquid in their mouth? Wouldn't it be kind of uncomfortable? My only concern was they contain sodium benzoate, which is something I try to avoid.
  10. richvank

    richvank Senior Member

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    Hi, all.

    We haven't heard from freddd for quite a while, so I don't know if he will respond on this thread. I just want to mention, though, that he emphasized several times that he and others had tested the effectiveness of quite a few brands of methyl B12, and that they had found big differences among them. It's a fact that methyl B12 is not very chemically stable, so how it is processed, stored and used can determine its condition. The ones he reported finding to be most effective were made by Jarrow Formulas and Enzymatic Therapy. He emphasized keeping it in the dark by wrapping it in foil to preserve it, because it is light-sensitive. I don't know if he tested the others that have been mentioned on this thread.

    Rich
  11. justy

    justy Senior Member

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    Thanks Rich. Ive just had feedback from someone using Fredds protocol that Methyl B12 spray is not stable and wont do anything. It was quite expensive though so will keep on for now just incase. I have increased the amount of spray and the time to hold it in my mouth - the problem is the awful taste makes me salivate heavily and its quite a lot of liquid.
    I havent had any reaction from it at all though and i cant decide if this is good or bad.
    I am also trying to work out which protocol. Fredds B12 or the Methylation block. Can you explain the difference to me Rich or someone else who knows? i have been reading up on them both and getting really confused. They both also contradict the advice of the doctor whos advice i have been following (in terms of supplements only)
  12. richvank

    richvank Senior Member

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    Hi, justy.

    I can give you my perspective on the protocols, but I know that freddd has different views. I'll try to represent his thinking here, too, since he hasn't been around for a while, and I don't know if he will post.

    In my hypothesis for ME/CFS, which is called the GD-MCB or glutathione depletion--methylation cycle block hypothesis, the key issue is that the enzyme methionine synthase, which joins the methylation cycle and the folate metabolism, is partially blocked. This was originally discovered in autism, but has been proven by lab testing to be true in ME/CFS as well. So the treatments that had been helping in autism were found to work for ME/CFS, also.

    There are several of these methylation-type treatments in use now by various practitioners as well as a large number of PWME's/PWC's and autism patients. The key aspect of all of them is that they combine high-dosage B12, given sublingually or by injection, with at least RDA-level dosages of folate, usually one or both of the active folates, 5-methyl tetrahydrofolate and folinic acd, but in one protocol (Dr. Alan Vinitsky's) very high dosages of sublingual folic acid are used instead. The various protocols also include some other supplements, but the combination of B12 and folate are the common denominator. Taking B12 by itself, without folate, has been somewhat helpful to some people with ME/CFS, but to really get benefit, it's necessary to combine it with folate. That has been the breakthrough based on the methylation cycle block, which was discovered first in autism.

    freddd himself has reported to this forum that he has inherited an inborn error of metabolism (a genetic mutation) in the intracellular B12 processing enzymes. This type of mutation is reported to be rare. freddd's cells are apparently not able to utilize hydroxocobalamin to make the two active coenzyme forms of B12 that they need (methylcobalamin and adenosylcobalamin). However, freddd has found that if he supplements both sublingually in large dosages, and also takes 5-methyl tetrahydrofolate (Metafolin) and some additional cofactor supplements, he can overcome this genetic problem and correct his symptoms. He has reported that there are actually many other people who respond the same way he does to the various supplements.

    I have favored starting with hydroxocobalamin as the B12 form, and moving to methylcobalamin if there is no response. In my experience, most PWME's/PWC's do respond to hydroxocobalamin. In theory, methylcobalamin can methylate mercury and make it easier for it to move into the brain, so if a high body burden of mercury is known or suspected, I suggest starting with a low dosage of methylcobalamin and working up if it is tolerated.

    freddd, on the other hand, reports that hydroxocobalamin does not work for him, or for many other people, and that methylcobalamin and adenosylcobalamin are the ones to use.
    It hasn't been clear to me whether the people freddd has mentioned actually have ME/CFS, since his earlier experience was with people who suffered from absolute B12 deficiency, which is not the same as ME/CFS. In ME/CFS, there is usually a functional deficiency of B12, rather than an absolute deficiency.

    Another difference between what I have suggested and freddd's approach is in the response to increased symptoms on the treatment. I have recommended that the dosages be decreased until the symptoms are tolerable. freddd, on the other hand, has favored maintaining or even increasing the dosages, in order to "push through" the symptoms.
    Various people have reported different experiences with this. Some have confirmed freddd's views, by eventually feeling better, though their symptoms increased quite a bit initially. Others have said that they could not tolerate freddd's approach, and some have decided to use the lower dosages, as I have suggested.

    At this point, I don't think it's clear which approach is best, and it may differ for different people. Unfortunately, there have not been any controlled clinical studies comparing these different protocols, so all we have to go on is biochemical theory and anecdotal reports from a few people.

    I hope this is helpful.

    Best regards,

    Rich
  13. justy

    justy Senior Member

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    Thanks Rich for taking the time, that was very helpful and has brought some clarity for me. I havent had a bad reaction from either Hydroxy or Methyl B12. I know i ahve low Glutathione as i had Mito testing with Dr.Myhill. Dr Myhill recommends Glutathione supplement whereas Fredd says absolutely not to take it.
    I have no idea what my mercury load is. I have fillings like evryone, most quite old.
    Thanks agqain for the feedback.
  14. richvank

    richvank Senior Member

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    Hi, Justy.

    I have suggested that supplementing glutathione by use of liposomal forms of glutathione might help with the excitoxicity that many people experience on this type of treatment (anxiety, insomnia, a "wired" feeling, hypersensitivity of the senses). I don't know if it will work in practice, but I think the biochemistry would suggest that it would. Supplementing glutathione by using an ordinary oral supplement should be beneficial for the gut, but it does not seem to help the body in general much, because most of the glutathione is broken down in the gut. The liver does receive some of the resulting amino acids, and may reform some glutathione from them.

    Freddd's opposition to supplementing glutathione stems from his own experience, and according to him, the experience of some others as well, which indicated that glutathione interfered with their body's ability to use B12. As far as I know, supplementing with glutathione will not interfere with B12 metabolism unless a person has an inborn error of metabolism involving the intracellular B12 processing enzymes. This is reported to be rare.

    Normally, glutathione does react with B12 inside the cells, and thus acts to protect it from reactions with toxins during an intermediate stage of its metabolism. Dr. Grace Ziem has found that mixing glutathione together with B12 and nebulizing the combination is beneficial to people who have multiple chemical sensitivity.

    If a person has mercury fillings and has had ME/CFS for an extended period of time, I think it is likely that mercury has built up in their body.

    Best regards,

    Rich
  15. justy

    justy Senior Member

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    Today i have stopped the methyl B12 spray to see if that was causing my nasty return of wired/hyper/rushing type feelings. I suspect it could be this, so the only way to know is to stop it and see.
    It came on a couple of days ago, i actually feel a bit better an am able to do more and feel much less ill. BUT i started having a return of strong palpitations, many times a day. I also felt very nervous feeling in my chest and stomach, with a pronounced startle. It sounds a lot like anxiety, but actually felty much more in my body. As if i had a rush of energy, but wasnt actually well enpough to deal with it. A bit like revving a cold engine. I have very bad eyesight at the moment, which is always a sign that i have overdone it - except i can do more - which just feels weird.

    I have also been taking an increased dose of Dr.Myhills magic minerals which contain per scoop:

    Calcium chloride 60mg
    magnesium chloride 70 mg
    potassium chloride 40mg)
    zinc chloride 6mg
    Iron (ferric amonium chloride) 3mg
    Iodine (potassium iodate) 0.3mg
    Manganese sulphate 0.2mg
    Boron tetraborate 2mg
    Copper sulphate 0.2mg
    Molybendum (sodium molybdate) 40mcg
    Selenium selenate 40 mcg
    Chromium Chloride 40mcg
    Vitamin B12 1000mcg
    Vitamin D3 1000iu.

    I am working up to 5 scoops a day. Currently on 2 and half. Just wondering if theres anything in this that could be causing it.
    I know that others who take B12 supps say to continue and go throught the reaction, but this feeling is very much how i felt at the beginning of my relapse and i descended into terrible anxiety for nearly a year, which i cannot afford to go back to, i dont think my mental health could take that again right now.
    Any thoughts?
  16. richvank

    richvank Senior Member

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    Hi, justy.

    My own view about the dosing is that it's best to do it at a level you can tolerate. I realize that Freddd has a different view. Some people have reported that they were able to "push through" by maintaining their dosages. Others have said that they couldn't tolerate the treatment, and stopped, but started again later, and the treatment was better tolerated. If my hypothesis is correct, the increased symptoms on the treatment result from mobilization of toxins. Stopping for a while should not cause a person to lose ground, but only to slow their rate of removal of the toxins from their body for a period of time.

    Best regards,

    Rich
  17. Freddd

    Freddd Senior Member

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    Hi Rich,

    Freddd's opposition to supplementing glutathione stems from his own experience, and according to him, the experience of some others as well, which indicated that glutathione interfered with their body's ability to use B12. As far as I know, supplementing with glutathione will not interfere with B12 metabolism unless a person has an inborn error of metabolism involving the intracellular B12 processing enzymes. This is reported to be rare.

    Actually glutathione induced a very rapid and thorough folate deficiency first and foremost and then a more slowly developing mb12 efficiency and an even slower deveolping adb12 deficiency. This response is very predictable. It is noticed by people using the active mb12 and adb12 and methylfolate who have had pronounced effects that are then rapidly reversed. Since folic acid, hycbl and cycbl leave most of the b12 deficiency symptoms and folate deficiency symptoms untouched in almost everybody there is no difference to notice quickly. However, over time many people develop "glutathione detox reaction" the reversal of which starts within a couple of hours of taking 5mg of methylfolate followed by substantial mb12 and adb12 doses and experiencing start-up responses all over again. It's not nearly so rare as you appear to suggest and is not limited to folks with inability to transform types of cobalamin. The only factors in common amongst those who all experienced it (100% of the 9 people trying it) was that each one had substantial improvment with adb12, mb12 and Metafolin and had those improvments disappear in days starting with folate symptoms and spreading to central neurological symptoms. It cost me a solid 2 year setback from a 6 week trial. Before glutathione precursors I achieved the same effectiveness with 800mcg of Metafolin, now I need 7200mcg every day of metafolin which is what is needed to maintain me folate deficiency symptom free. Folininc acid by the way did not do the trick for me at all. At best it was like folic acid. 800mcg of folinic acid did not replace 800mcg of Metafolin.

    If a person has mercury fillings and has had ME/CFS for an extended period of time, I think it is likely that mercury has built up in their body.

    That WAS me. I'm healed now. After almost 8 years the mercury ought to be cleared out of my body after 40 serum halflife periods for methylmercury. As Rich has said himself that there was only very slim evidence of any hazard of mercury methylation and was with huge IV doses of methylb12. I was unable to come up with any model from research evidence of any dose below at least 700mg IV that would have any probability of releasing enough mercury for a low level toxic effect. The idea that an absorbed mg or 5 would have any such effect has absolutely no supporting evidence of any kind a s 5-10mg of sublingual tablets do not constitute a huge IV dose.

    I have never heard of any response to drops of that sort, and certainly nothing at all compared with even a 5 star 1mg sublingual tablet absorbing 200-250 mcg. The comparison of sublingual absorption to injection I ran may it very clear that absorption rate was directly related to time in contact with tissues.
  18. Freddd

    Freddd Senior Member

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    Hi Justy,

    wired/hyper/rushing type feelings

    That is usually a combination of the nervous system "waking up" after a deep b12 deficiency and/or the mitochondria starting to work better in the muscles and/or neurons indicating that you are indeed absorbing an effective amount of mb12 from the drops. It's sort of "been down so long seems like up to me" and it takes a while for equilibrium to be reached and your internal "thermostat" system to reset to having sufficient b12. The first 100mcg absorbed of mb12 has the largest effect. Each doubling of dose produces less than a doubling of effect. With a 1 mg sublingual you can easily control amount by taking crumbs. 1/8 of let's say and Enzymatic therapy 1000mcg mb12 will result in perhaps 25mcg being absorbed. Anxiety is a peculiar thing. It can be a symptom of b12 deficiency and at the same time it can be felt to increase due to the increased energy production, increase in nerve signal transmission speed and increase in signal strength, all said to be effects of mb12. These increases make most all sensory experiences more intense. My vision got literally 4x (2 stops) brighter along with everything else.

    You might be able to separate some of those "and/or" effects by taking 1x3mg adb12 sublingual every few days until the next one causes no effect or you have taken 5 of them. Then the mitochondria startup is separated from the neurological startup effects possibly causing them to be less intense because the separate effects happen separately.

    I don't know of any way to get this back to "normal" without this readjustment, whether slowly or quickly. Good luck.
  19. justy

    justy Senior Member

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    Thanks again for the replies.
    After 2 days without the MB12 spray the nervous/wired feelings have gone, other than that i still feel not TOO bad. Im going to give it a week with just the increasing minerals (and all the other supps ive been taking for ages) and then try again with a half spray. I was actually ok with the half spray, not held for long before swallowing for a few weeks, it was only when i increased to a full spray and held it in the mouth for longer that the side effects were felt.
  20. richvank

    richvank Senior Member

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    Hi, Freddd.

    I really hope that sometime soon we will be able to resolve our different views about what goes on when glutathione is added to treatments including high-dose B12 and active folates, whether it's wise to push on with high dosages of the supplements or to decrease dosages when symptoms become more severe, and whether methylcobalamin really will move mercury into the brain of a person who has a high body burden of inorganic mercury.

    I think the only way to really resolve these issues is by careful clinical testing. I think that one of the essentials of such testing would be to carefully define the group being tested. Do they meet the Fukuda and Canadian consensus criteria for ME/CFS? Do they have polymorphisms or serious mutations in genes that affect the B12 absorption, transport, intracellular processing, utilization, and metabolism? What are the levels of folate and B12 in their cerebrospinal fluid? What is their total serum B12 level and their level of holotranscobalamin? What are the levels of methylmalonate and figlu in their urine? Based on these measurements, do they have an absolute B12 deficiency, or is it a functional deficiency?

    I'm not sure that you and I are talking about the same populations, as defined by some of these criteria. What are the characteristics of the people whose experience you cite in support of your thinking about the effects of these various supplements? Are these self-selected people who joined the B12 deficiency board, or are they people who had a diagnosis of ME or CFS from a physician who knew the criteria, or what? The people in the clinical study that Dr. Nathan and I conducted met the Fukuda criteria and also had post-exertional fatigue. I think we can be pretty sure that they had ME/CFS. I'm concerned that we may be comparing apples and oranges.

    This kind of study would of course require considerable funding, and would best be done in an institutional setting. Perhaps as the significance of the retroviruses in ME/CFS becomes better recognized, and what Dr. Mikovits said in her talk in Santa Rosa earlier this week sinks in (i.e. that oxidative stress, glutathione depletion, and DNA hypomethylation favor the retrovirsues, so that treatment of these features should be helpful) there will be more interest in the research community in studying methylation treatments. There are now quite a few variations on this theme that are in use by various practitioners and patients. This type of treatment is really crying out for some careful study. Until this is done, I think that we will just be continuing to wave our hands in the air, and this is confusing to the people who are trying to get well. Your approach is pragmatic, mine begins with theory. Both are valid approaches to begin with, but the scientific method involves bringing the two together until their results can be harmonized. Until this is done, the scientific job is not finished.

    Freddd, I would be interested to know how you are able to distinguish between folate deficiency and methyl B12 deficiency on the basis of symptoms. It is my understanding that both support the methionine synthase reaction, so that if either is deficient, there will be a slowing of the methylation cycle, and it would seem that this would produce the same symptoms for deficiency of either. I realize that folate does some other things, independent of B12, unless B12 is so low that folate drains out of the cells via the methyl trap mechanism. Are you able to sense these other things somehow? I think I can understand your being able to distinguish between the effects of mB12 and adnB12, since the latter supports feeding the Krebs cycle, and should show up more immediately as an increase in available energy.

    With regard to adding glutathione, we seem to be at opposite poles at the moment. You have emphasized that doing this was basically a disaster for you, and for some other people. I. on the other hand, have lately been suggesting that people with ME/CFS who are on the simplified treatment approach might consider adding liposomal glutathione in an effort to calm the excitotoxicity that is a problem with this type of treatment. The basis of this is an attempt to lower the oxidative stress in the mitochondria of the astrocytes, so that they will produce more ATP and thus be better able to import glutamate and convert it to glutamine for recycle to the neurons. I haven't had feedback yet from people trying this, but I think it makes sense from a theoretical point of view.

    You mentioned that adding glutathione caused you to have symptoms of folate deficiency first. Beyond the question of how you recognize folate deficiency symptoms, which I addressed above, I also don't know how glutathione could impact folate deleteriously. Maybe there is some way, but I don't know it.

    I do think we have a lot of common ground, and for now I favor emphasizing that, but I would still like to see our differences get resolved.

    Best regards,

    Rich

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