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B-12 - The Hidden Story

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

  1. Freddd

    Freddd Senior Member

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    Hi Lynn,

    Folate insufficiency increases inflammation. It is spoken of in research that the body uses it's own "triage" system for allocating folate. When healing starts on one layer it appears that all the folate needed for that level is allocated to it and reduces folate at other levels which increases the inflammation in those other layers. At least that is the way I would describe it based on my own experience of periodic folate insufficiency hundreds of times. Chewing a b12 tablet and swallowing reduces the amount of b12 to about 1% from an achievable (with Enzymatic Therapy) of 25-33% (max range).

    The theory that HyCbl should work better for some genetics may come from massively reduced effectivness. It doesn't cause all those nasty side effects of healing like low potassium symptoms, low folate symptoms and in reference to nerves, the increased feeling of pains that freshly stimulated nerves that hadn't been working have. When an area comes back from not feeling, what is felt is the damage; with shooting pains, intense steady pain, painful tingling, more awareness of the shrinkage and therefore tightness of the muscles and all that. Again, I can only speak from repeated experience. Active healing can be painful. Shutting down the damaged nerves reduces the pain. What I said to myself 11 years ago is that the whole thing is counter intuitive. Many people say "what awful side effects" from the increased pains, the misery of low potassium and increased inflammation and pain from donut hole paradoxical folate deficiency/insufficiency and make sure that they never again do what could heal them over a period of time.

    I don't know of anybody who has healed from FMS/CFS/ME doing it with HyCbl. Many have some improvements and other things get worse. In every study done on HyCbl (and they are not designed to actually produce healing) there is about a 2/3 chance that a subject could have some improvement and 1/3 have no improvement at all for the studied symptoms. I have been offering information here and debugging my hypothesis and protocol for 5 or 6 years now. In all that time I have not seen anybody at all announce that they have corrected their problems to the point of returning to work, walking 5 miles daily, climbing a 2000 foot vertical hill, get back into decent aerobic condition and get their muscles restored. So whatever people interpreting the tests to mean advise on HyCbl doesn't appear to work.. I can only chalk up all your apparent contradictions to various ways things work partially or not at all. The whole thing is complicated.

    Where the people are having results the conversation changes all the time as they no longer have a problem with one symptoms set and turn their attention to others. That is why the active b12s and folate lead to need for more folate, need for potassium, need for a dozen other things, until it gets down to making adjustments in b1, b2 and b3 because those are what lead to specific predictable results. HyCbl rarely leads to solving a succession of half a dozen things or more. So far nobody can describe a healing path that starts with HyCbl through the flags of healing being turned on to secondary and tertiary insufficiency or over sufficiency symptoms. There are no predictions that can be made ( nervous system turning on, low potassium and folate shortly after starting) and predictions of what works for that after the initial things are cleared. And of course these are multi substance problems. In my opinion it works out better if one thinks in terms of partial methylation block, methyltrap and partial ATP block. HyCbl doesn't generally correct these and can even cause them over time. MeCbl and cofactors can often correct these if given a chance. Damage can take years to heal if at all for some damages.

    I was unable to rate the CL. It seems pretty good, for the body anyway. It dissolves so fast I was not able to absorb enough for it to penetrate my CNS sufficiently to give a rating as those are my active symptoms.

    Good luck. Try 10 or 20 different brands and look for the brand(s) that blows your socks off most, that stirs up your symptoms most. My strategy was to look for those things that stirred up the symptoms most. Those that were stirred up the most tended to be the first to improve. In 3 weeks when I went back to my new doc after the first visit after which I started the MeCbl, everybody in the office could literally see the difference. I felt so much better, had some energy, my whole body language was different and I no longer looked like I was at the edge of death. It was tumultuous and painful but a lot better in a month of aiming towards maximum. Each time things backed away from that maximum I tried to find what would restore that, at first an increase in MeCbl, then adding AdoCbl, then L-methylfolate and other things and finally LCF. It was so easy in those days with so many active symptoms that I could watch change. Now it is down to a hard core of 10 symptoms or so from 200 I started with.
     
    Last edited: Jul 16, 2014
  2. PeterPositive

    PeterPositive Senior Member

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    This is interesting. According to Dr. Ben Lynch folate increases NO levels, which in turn produces more inflammation in people with an already high oxidative stress. Hence the increasing pain, and other symptoms.

    Now, I don't know what the final answer is... considering we're all different and have different histories and problems it may be that there's no final answer.

    From my experience I have noticed the same. I can push methyl-folate up to a point then I start seeing a worsening of symptoms: in particular GI inflammation and tons of anxiety bordering on panic attack.

    When I hit this limit, which for me is around 2000mcg, I have to back off or I need strong sedatives to bring my nervous system back to a decent state :( I could endure the GI inflammation, but the adrenaline raise is unbearable, it goes on for hours and hours and hours. Last time it happened I had GABA at home and I took 1 cap every hour to calm the damn thing down.

    So, in my case, if it's a "donut hole" deficiency, I wouldn't be able to proceed because all hell breaks loose and I wouldn't dare adding more folate.

    I find it more plausible that it's a case of so-called "overmethylation" in the sense that a higher dose of folate can raise epinephrine levels (among other neurotransmitter) to an unhealthy level for me.
     
    Last edited: Jul 17, 2014
  3. LynnJ

    LynnJ

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    "If one takes methylfolate before inflammation is controlled, the methylfolate will worsen it. One may consider taking 2 capsules of Optimal Turmeric three times a day during times of inflammation." - Dr. Lynch

    So much conflicting information! There are two (or more) sides to everything when it comes to B12.

    Freddd, you mention that hydroxy B12 doesn't cause side effects because it doesn't really HEAL, but it gives me the same potassium-related shortness of breath that methyl B12 does.
     
  4. PeterPositive

    PeterPositive Senior Member

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    Yeah exactly :D
    If the claim that 5-methylfolate increases NO is correct (which I think it is backed by studies) then I suppose for people with already high NO it could be a problem. Others may indeed not be susceptible.

    Similarly to high 5-MTHF I don't do well on high dose L-Arginine. I can take some, e.g. 500-1000mg without issues but that's approximately my limit.

    I never noticed if Arginine + 5-MTHF causes symptoms more quickly, though. Right now I don't feel like I want to try :D
     
  5. LynnJ

    LynnJ

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    I wonder, then, what the best option is. I'll be taking a smaller dose of folate because of the reaction I have, but is that sufficient? Do I take a bunch of anti-inflammatory supplements? Do I take a hydroxy B12 with my folate to soak up some of the excess NO...?

    I've been feeling better lately, but the vast majority of my pain seems to have moved from the right shoulder into the left. Today my right shoulder feels normal and has a perfectly fine range of motion, but the left one is killing me. If I try to shrug I get severe sharp pain.

    Some tingling and pins/needles in my feet, but no burning really. If only this left shoulder would shape up, I'd be feeling pretty good!

    I've been doing a little research on oral vs sublingual B12. I know some people here feel very strongly about this, but it's interesting how many sources argue that it's mostly hype, and that studies have shown there isn't a huge difference between the two methods. Perhaps this is the case for at least some people? Maybe oral supplementation could be sufficient. Everyone is different, after all...
     
    Last edited: Jul 17, 2014
  6. Freddd

    Freddd Senior Member

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    Hi Lynn,

    With HyCbl it is very much a percentage thing. It works to a greater or lesser extent for some symptoms for often some while, and also dependent upon perhaps a dozen other factors. For every one of us a major part of the problem is finding an effective balance. HyCbl does cause side effects. And just like folates and other cobalamins, it happen by some number of levels, frequently giving paradoxical looking results. So with HyCbl it does clearly work on some levels for some duration for some people. It is also quite probable to have these contradictory results. And so much depends also upon dose of B1, B2 and B3 which can ramp up the low potassium effect and donut hole folate insufficiency with unpredictable results on healing. There are no hard and fast answers to anything. If one takes a look at a lot of research on HyCbl a large range of possible result occur. For some tiny percentage of people their responses are virtually identical, at least for the duration of an x-month study, to MeCbl or AdoCbl. The question is "why?". What makes such a person predictable in that response. What happens over time to the other handful of "triage" levels some of which will be working some not. Rich thought that a lot of that has to do with cofactors, like B1, B2, B3 and many others. Whether MeCbl or AdoCbl work at all or not is whole dependent upon cofactors. Lack of an effective folate for one's body can completely prevent MeCbl from working as can lack of AdoCbl or lack of Vit D.

    HyCbl typically has a lot of effect on a few of the universe of MeCbl/AdoCbl symptoms, less effect on a bunch more and no effect or negative effect on others, and that varies from person to person. In studies, the symptoms studied have about 1/3 of subjects not responding with changes in the study symptoms, and 2/3 responding to some degree. However, when looking at the whole person with perhaps hundreds of symptoms, HyCbl hasn't demonstrated any substantial ability to allow many people to say "I'm largely recovered from FMS/CFS and am going back to work and living my life". That doesn't mean it has no effects. It has partial and contradictory responses and perhaps complete responses on a few symptoms.

    I would love to see a good study with various protocols going head to head with enough people to be meaningful. Then have say a series of physical activities impossible for people with CFS/FMS and see who is effectively recovered and able to do these activities. We see that happen all around us here but nobody is keeping track. I know of quite a few people restored to normal functioning. That doesn't mean they don't still have a variety of symptoms from damage and various deficiencies. I'm pretty normally capable for a guy my age, 66. I'm more in need of a fountain of youth rather than a "cure" for anything. My remaining symptoms are from physical damage and neurological damage from long term b12 deficiencies. I don't have CFS or FMS any more. I don't have the symptoms to diagnose them. I don't feel like I have them as they are not quiet about affecting a person. That is all I'm trying to say.

    Another thing that is of course a problem is the diagnoses themselves. I've collected perhaps 20 or more diagnoses that were wrong and treating me on their basis didn't work. Who hasn't been through that? I have no confidence in much of the diagnostic work . I know that a whole lot of test ranges have altered in the last 50 years to include chronic partial methylation block results as "normal".

    I'm trying to work out a software method that can help all of us figure out our own mazes. In the last 11 years I have large solved my maze. What it has come down to, at the lowest level, is that I have had a lifelong tendency to have a 2 weeks cycle of paradoxical folate deficiency with low potassium on the way out. That was inconceivable and unstateable and untreatable 5 years ago. It's been a long pathway learning to recognize that. So many "louder" symptoms had to be peeled off to even be able to see it. What milk does to my intestines made the subtle effects invisible. The multitude of symptoms of FMS and CFS made them invisible. In a way what I have done is come up with a negative masking that makes these previous hidden symptoms and disorder visible.


    Nothing is absolutes. There may be 1000 different pathways through the maze of these disorders. Finding what that pathway is for any particular person is difficult and no one size fits all answer is available. Instead it's trying to find something, anything, that works and build from there. Best of luck. If the map I've drawn doesn't match the terrain you find yourself in, find a different map that works or build one.

    BE IN GOOD HEALTH
     
  7. Sinclair

    Sinclair Senior Member

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    I've been on Vit B complex (US GNC brand) tablet for longer than a month with some modest improvements in energy. Today I tried 10.000 mcg B12 inyections (intramuscular) for the first time (MERCK lab, Neurobion brand, not specified but I think it is a form of cobalamin). My reaction was a half hour of modest improvement in energy, followed by a longer period of sleepiness and mood changes to depression. Then back to 'normal' in a few hours. Waiting to see what will happen with the next inyections in a few days.
     
  8. Freddd

    Freddd Senior Member

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    Hi Sinclair,

    Neurobion is CYANOCOBALAMIN and is quite useless or worse and doesn't cause significant neurological healing. In some people with a rare hereditary condition the cyanide can be deposited around the optic nerve killing it and causing blindness. At best you will have the type of reaction you had this time. Typically that will go way after a few injections and CyCbl generally worsens 250 out of 300 or so total MeCbl/AdoCbl deficiency symptoms.
     
    Sinclair likes this.
  9. Sinclair

    Sinclair Senior Member

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    Many Thanks for your kind comment.
    You certainly understand we try with everything in hope for relief.
    I just started the ABC of methylation (next chapter is studying your protocol) but I realized I needed to fix my gut issues first, and so I am trying.
    Indeed my theory of the case leasing to my current condition is:
    1.- SNPs (assuming all PWCFS do have SNPs) +
    2.- Gut issues (IBS) > affected the immune system (progressively since 2005 on)
    3.- Viral Trigger (China, by the end of 2010); progressive onset
    4.- Mild ME/CFS January 2011-
    5.- Thyroid Cancer 2012 - (under treatment)
    6.- Moderate ME/CFS December 2013-

    The amount of information that needs to be absorbed is so huge and the energy that low, that it is easy to get blocked and trapped in inaction.

    Thanks for your work and for making life easier for PWCFS.
     
  10. Freddd

    Freddd Senior Member

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    IBS for instance can turn on and off in a few days based on lack or sufficiency of MeCbl and L-methylfolate. Lack of MeCbl, L-methylfolate, AdoCbl and LCF can weaken the immune system considerably. It is likely you can't deal with the gut issues before starting the things that improve many gut issues and reduce inflammation generally, and makes the immune system more functional. Some autoimmune responses MIGHT be triggered when methyltrap causes hyper responses of many types.

    Many chemotherapy drugs are anti-folates, if you are getting such. Check with your doctor about b12 and folate while under treatment. There appear to be any number of viral triggers that put people into b12 deficiency starting with partial methylation block of and that then progressively involves more severity of partial methylation block and partial ATP block and eventually methyltrap. This appears to happen mostly to people sitting on the edge already for any of many possible reasons. Good luck in getting things under control.
     
  11. Sinclair

    Sinclair Senior Member

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    Sorry, are you saying here that one can follow your protocol without previously adressing gut issues such as mal absorption? My more evident immune alteration marker is a CD4/CD 8 altered ratio (HIV negative), and had ANA ab as well but in a low level.

    Protocols for Thyroid Cancer (Papillary Dif.) rarely use chemo, but just one or a few more radioiodine intake. The long term treatment includes TSH suppression therapy (vía high dose levthyroxine intake) in a so-called "sub-clinical hyperthyroidism". This has been my experience as well.

    This is very interesting and seems consistent with what I expose as theory of my case. Many thanks for this.

    Hope you are doing well too and thanks again.
     
  12. Freddd

    Freddd Senior Member

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    @Sinclair

    The chemotherapy was a general comment. Lots of other drugs to, like Meformin.


    Sorry, are you saying here that one can follow your protocol without previously adressing gut issues such as mal absorption? My more evident immune alteration marker is a CD4/CD 8 altered ratio (HIV negative), and had ANA ab as well but in a low level.

    I don't know a thing about all those markers and such. There are lots of things that can cause or contribute to gut and absorption problems. The lack of these, and no doubt other nutrients, and/or presence of some foods can cause all matter of gut problems from mouth to anus. How would it hurt? Lack of AdoCbl and MeCbl cause over 600 biological functions failure, If a person has these deficiencies, and they are often caused by absorption problems of one kind or another, it's often a lift by your bootstraps routine. One needs the vitamins and nutrients that are not absorbed easily to fix some problems. Sublingual or injectable B12 is a must and l-methylfolate can be used that way along with b-complex. Many are available in liquid forms for post gastric surgery patients.
     
  13. LynnJ

    LynnJ

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    Just out of curiosity, how does everyone here space their B12 dosage throughout the day? Do you take a dose in the morning, afternoon, and evening? Do you take all your B12 at once? Do you take a specific amount every hour/2 hours/3 hours? Etc. etc.
     
  14. Sinclair

    Sinclair Senior Member

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    @Freddd

    Beyond Nature Made B Complex with C, do you have any other current product suggestion for getting the other vitamins and nutrients in order to prepare the body before the 'deadlock quartet'?

    I mean, an updated version of this:

    "Absolutely critical minimums for basic healing.
    • Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
    • Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
    • Solgar Metafolin 800mcg
    • Jarrow B-Right b-complex, 1 capsule twice a day
    • Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.
    • Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.
    Essential, usually needs supplementing
    • Zinc - 50 mg
    • Calcium/magnesium supplement
    • D - 3000-5000 IU total
    • A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
    • Vitamin E, NOW Foods Gamma E complex
    • Vitamin C – 4000+mg/day

    Possibly Critical Showstopper Cofactors - add after initial stages, any number of these in any combination may be required for maximum effectiveness or in some cases to work at all.
    • SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood
    • TMG - enhances SAM-e, methylb12, l-carnitine
    • L-carnitine fumarate (acetyl might work better for some), works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood
    • Alpha Lipoic Acid - enhances l-carnitine and adenosylb12
    • D-Ribose - enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy

    Additional possibly helpful cofactors
    • Selenium
    • Lecithin
    • Chromium GTF
    • many other supplements

    THINGS TO AVOID

    Glutathione and glutathione precursors such as NAC and glutamine, undenatured whey. The glutathione induces immediate active b12 deficiencies, apparently by converting active methylb12 to inactive glutathionylb12 and rapidly excreting it."

    Thanks!
     
    Last edited: Jul 23, 2014
  15. Freddd

    Freddd Senior Member

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    The country life dibencozide has folic acid is the Anabol Naturals without folic acid is far better. Jarrow went bad going on 3 years ago when they changed the MeCbl they used somehow. Jarrow B-right has folic acid. Folic acid is one of those things to be avoided by many of us. This list of brands is very outdated.


    Enzymatic Therapy is the MeCbl right now that appears to produce the best results for a higher percentage.
     
  16. drob31

    drob31 Senior Member

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    I just realized I took a Jarrow B-Right today, and fatigue hit me an hour later and hasn't left. This could also be PEM, but I'm not sure yet. I'm compound hetero MTHFR by the way.
     
  17. kraken

    kraken

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    Hi guys!

    Figured I post here instead of making a new thread. I currently restarted Freddds methylation plan and while I'm overall doing pretty good, i'm expericing one type of side effects which gotting worse over the last days. I remember having this on my last attempt as well.

    I guess its best described as Anemia? My fingers and feet get extremly cold at various times of the day, typically mid-day. Literally freezing. Loosing skin colour, looking at my fingers they´re pretty pale, atleast half of the fingers. Some other symptoms I'm experiencing as of now are some IBS issues and muscle pain (maybe some inflammation going on).

    My guess would be paradoxical folate defiency. Got any advice? Should i try increase the dose dramatically? Also found out that I need way more B12 than I first believed. Today I took 2 mg more at one time and it was like a light-switch going on. Most notable were my eyesight which improved very much within 30 minutes.

    Currently on:
    4-5mg folate
    4-5mg B12 (enzymatic)
    300 mg LCF
    3-4 mg ADB12
    1000-2000 supplemental potassium
    150-300 mg magnesium (every other day)
    Zinc 30 mg (every other day)
    Fish oil
    B-complex 1/2 capsule (Thorne B-right stress)
     
    Last edited: Aug 7, 2014
  18. Johnmac

    Johnmac Senior Member

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    Cambodia
    Way back in 2009 someone quoted Dr Myhill.

    I read that webpage & Dr Myhill also says:

    http://www.drmyhill.co.uk/article.cfm?id=407

    and:

    Is that accurate, both in theory and in the experience of people here?

    Just wondering if I'm looking at a lifetime of pill-taking, or not.
     
  19. drob31

    drob31 Senior Member

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    Could b6 (p5p) be considered part of the equation as well? B6 is the master vitamin that does allot neurotransmitter synthesis.

    Also, when we talk about zinc in MG's, are we talking about elemental zinc, or bound zinc? Because zinc gluconate is only contains 14.3% actual zinc.
     
  20. whodathunkit

    whodathunkit Senior Member

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    @Johnmac: I think it may depend upon the individual. Some around here seem to have successfully weaned themselves off of many supplements they were dependent on, after they recovered somewhat of their health.

    I myself don't take nearly as much of some things as I used to, although I take more of others now. It's a dance.

    And as you already know, there are some things that age causes us to need to supplement in greater quantities (like CoQ10), due to the natural ramping down of the production process as we get older.

    I've pretty much resigned myself to a lifetime of at least some supplementation. I think, given the state of our food supply and declining body functions (like digestion) as we age, optimal health in advancing years without supplements probably isn't possible any more. If it ever was.

    Some think that the process of aging can be stopped if not reversed with the right combo of supps. We're all involved in a grand experiment. I guess we'll see.
     
    Johnmac likes this.

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