Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Fuzzyhead, Mar 6, 2013.

  1. Fuzzyhead

    Fuzzyhead Senior Member

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    I am confused about all the vit b12 and deficiencies. I was taking a normal multivitamin with vit b12 but the cyanocobalamin kind so my bloods are showing high levels of vit b12 and serum folate. I asked my gp if my body could be storing it but not using it and he said no because my red blood cells would be enlarged and they aren't. I have just watched the video on here and it says because your bloods show you have high levels it doesn't mean your body is utilising it properly. How do you find this out or is it just by trialling with methyl b12 and methylfolate to see if it helps? Also is it dangerous to have high levels in your blood and still take these?
    I have been getting new symptoms that started with vertigo/dizziness, extreme fatigue, headaches/ migraine, nausea, depression, forgetfulness and brain fog etc and I am trying to work out why.
    There are so many things that share similar symptoms.
     
  2. _June

    _June aren't I pretty? *baaah!*

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    Multivitamin doesn't have nowhere near enough b12, specially if you have b12 deficiency.

    Was the b12 active b12, or total b12?
    It seems the red blood cells aren't always enlarged because nowadays all our food is fortified with folic acid which makes the cells small.
    What was your blood level of b12? Seems a good level is atleast 900, but doctors stop b12 injections as soon as it reaches 300 or 400? In japan, anything under 500 is considered deficient.

    (I am not a doctor, I'm just learning about this stuff myself)
     
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  3. Fuzzyhead

    Fuzzyhead Senior Member

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    What's the difference between active or total? I am new to all this too.
    My level was in the 900's with taking the multivitamin. I am just trying to find an explanation for all these new symptoms. My gp just keeps saying I have underlying anxiety. I just wish there was an easy way to test if your using it properly.
     
  4. Freddd

    Freddd Senior Member

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    Hi Fuzzyhead,

    You definitely appear to have the right symptoms to think that b12 and folate are invloved. I used to have all of them. They tie into all four nutrients, the Deadlock quartet. Only trials will show you what works. Unfortunately there is not a single test orr group of tests for hundreds or thousand of dollars that will tell you what a trial of $50 worth of vitamins can tell you.. The ones you mention can be both CNS and body. They do no tests at all for the CNS deficiencies. The testas they do can tell you if they think it is bad enough so that you will be badly damaged. They don't tell ypu if you are on the way. You can have 900pg/ml serum cobalamin in your body and die from b12 deficiency diseases. If you are guided by those tests you won't find the answers you need.

    Likely you will know that you respond to a 5 star MeCbl within 1 hour after putting the first under your tongue. If that doesn't do it, then MeCbl and AdoCbl. If that doesn't do it then Necbl, AdoCbl and L-methylfolate. If that doesn't do it then all three with LCF. That can give an apporcimately 95% answer. With all four you likely would have sone reaction. On these trials, we are test for RESONSE. ANY response shows that the item lack was limiting previous repsonses.

    Going past a single dose trial, then one has to become aware of induced deficiencies that produce a whole lot of additional symptoms for all sorts of reasons. With those symptoms I would bet on you having a response every day of the week.
     
  5. Fuzzyhead

    Fuzzyhead Senior Member

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    Thanks Fredd. Whats cns? Sorry I am new to all this. I have ordered methyl b12 and methylfolate are they ok to begin with? What's abdocbl and necbl and lcf?
     
  6. _June

    _June aren't I pretty? *baaah!*

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    Can I piggyback this thread?
    For someone like me, what would this mean? Does this mean that within one hour of putting 5mg mecbl under my tongue, I would suddenly be able to make change (money), or calculate 32 minus 15? I usually can't do those things. I got this problem when I was about 19 years old.

    I had many other neurological problems in the past 7 years but a lot of them improved. For example, I couldn't remember my date of birth or my age, and I spent 7 years trying to re-learn something I'd already known since I was little. (I still can't learn anything even if I read chapter 1 for 7 years)

    I'm looking into starting B12 to see if cognitive problems go away. For now I'm staring to include more beef liver, cod liver (not the oil, just the liver), oysters and clams in my diet. But I had gallbladder + pancreas problems before, and IBS-diarrhea.

    Fuzzyhead
    Have you ruled out food allergies? Because I remember your thread about bile/gallstones.
    You should stop eating all grains, nuts, seeds/beans, milk, and sugars for 30 days and see if that helps. No cheating!
    It helped me a lot. I can go for daily walks now, and I volunteer once per week.

    I'm not saying B12 won't help, I think it will, and I want to try B12 too, because there's problems I still have. But you have that bile problem, which tells me you have food allergies. You already took B12, but you still have problems. It would be silly not to rule out food allergies.
     
  7. Fuzzyhead

    Fuzzyhead Senior Member

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    No I haven't ruled out food allergies because I feel sick all the time and just eating what I can. My main problem is crushing fatigue and feeling sick 24/7.
     
  8. Freddd

    Freddd Senior Member

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    Hi June,

    I had all sorts of food sensitivities before MeCbl, AdoCbl and Metafolin. I had gallstones and gall bladder removal 8 years before MeCbl. All the food problems have gone away excpet milk sensitivity. Then it turned out that IBS in me was one of those folate uinsufficiency sympotms than can come and go in days.

    For someone like me, what would this mean? Does this mean that within one hour of putting 5mg mecbl under my tongue, I would suddenly be able to make change (money), or calculate 32 minus 15? I usually can't do those things. I got this problem when I was about 19 years old.

    At the present the ONLY 5 star MeCbl I would count on is Enzymatic Therapy. There is no 5mg MeCbl I would use for this trial. Then, assuming you did do the ENZY MeCbl and assuming that you are not deadlocked on AdoCbl, LCF or Metafolin or any of half a dozen or so other items, about a 75% chance by my observations, you could have a response. Usually the first noticable response is neurological. For me in the first hour the lights turned on, my sense of taste started normalizing, a lifelong depression lifted, everything got intense (nervous system perception), I could walk up the sairs without resting. In 10 days the burning red tongue was fading to normal, burning bladder faded to normal, burnong muyscle pain was mostly gone. Over the next 5 years as I introduced additional active items, AdoCbl, Meatafolin and LCD primarily hundreds of things healed includong cognitive difficulties of many kinds. Look at the specific symptoms nutrient lists such as MeCbl alone to see what changed by that alone.
     
  9. Fuzzyhead

    Fuzzyhead Senior Member

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    When's the best time of day to take these morning? Do you start one at a time say methyl b12 first for few weeks or all together?
     
  10. sregan

    sregan Senior Member

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    Fuzzyhead I was gonna ask the same question, do most people take these in the AM or PM or does it matter.

    Fredd: Likely you will know that you respond to a 5 star MeCbl within 1 hour after putting the first under your tongue. If that doesn't do it, then MeCbl and AdoCbl. If that doesn't do it then Necbl, AdoCbl and L-methylfolate. If that doesn't do it then all three with LCF. That can give an apporcimately 95% answer.

    I experienced this. I take my 1000mcg hydroxy with 200mcg MethlyFolate and 200mg Folicin and feel a ton better (near normal) for a while. Yesterday I just took only the 1000mcg hydroxy and not much difference. Today the only 1000mcg hydroxy and the 200mcg folicin and feel somewhat better than baseline and better than yesterday but not as good as the few days I took all three together.
     
  11. Freddd

    Freddd Senior Member

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    Hi Sregan,


    do most people take these in the AM or PM or does it matter.

    It does matter in a variety of ways to various people for differerent reasons. MeCbl in particular can give a relatively shortlived neurological brightening that may increase as long as one keeps that MeCbl under the lip. It levels off within minutes of chewing and swallowing the rest of the tablet. The MeCbl (whether that is taken or from conversion of HyCbl if that happens well enough) causes a surge in the melatonin about 10-12 hours offset. Some people with a sleep phase problems (see SAD and lightbox literature about that) don't have that same offset. Those that get very sleepy quickly from it appear to be able to normalize with AdoCbl and LCF (or ALCAR for some). And again, these can cause ATP generation. ATP generation once started by AdoCbl doesn't go away unless somethong else goes low, like LCF. The AdoCbl needs to be in diffusion mode to act as an anti-inflammatory. The converted HyCbl isn't available in that mode. HyCbl does partial anti-inflmmatory and makes other parts worse. That is what Wheatley's Large Gorilla .... ADENOSYLCOBALAMIN paper is all the about, the radical effectiveness of AdoCbl as an anti-inflammatory but only in supra biological doses (diffusion distribution). Thaty needs to be renewed daily as 99% is excreted each day of what is in diffusion mode distribution As any given effective dose of carnitine wears off sufficiently to loose effectiveness over a 36 hour period, and some people will display a whole series of moods in more or less the same order during that 36 hours, for some people taking a 500mg dose in the morning before food allows a fair amount of wind down by bedtime. However, people very sensitive to this cycle will be more comfortable and wake up feeling better in the mnorning oif they take their carnitine in divided doses, same total dose but spread out in two or even 3 doses.

    The L-methylfolate has a serum half life period of about 3 hours. A person can have plenty in the morning and be in donut hole folate insufficiency by evening. That can be demonstrated and experienced. While some have speculated that folinic acid might act as a time release folate by delayed conversion it may not or even worse may actually block the L-methylfolate in spome competitive way is hypothecized from experience and speculated on by many. Taking l-methylfolate in small dose once a day may turn methylation block off and on again ecah day which will tend to make the folate insufficiency symptoms ("detox') get wporse and worse. These are rthe oscilations of symptoms that gets worse and worse, the longer it is pumped, like a kids swing being pumped higher and higher by the same leg movements..
     
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  12. Freddd

    Freddd Senior Member

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    Hi Fuzzyhead,

    If I had it to do all over again, knowing what I do now, I would start with low doses of MeCbl AND AdoCbl, say 1/4 1mg ENZY tablet and the equivalent more or less of AdoCbl as actual amount doesn't matter if there is enough. Then with 200mcg of Metafolin 4 times a day once can come up to the first holding point, when healing swirtches on. Then potassium and/or Metafolin can be titrated as needed for newly intensified symptoms casued by lack of those two (about 95% more or less of people's responses, whatever they call them). The sicker a person is the bigger the immediate responses. A person that has only partial methylation block has a relatively mild startup. Those with methyltrap have an intense startup and those that have partial ATP block have an intense startup and those with combinations of all three have the strongest startups. Each of these will wind down. The startup responses are neurological brightening and energization and much more intensly noticing everything of the nervous system, each little malfunction and damage stands out in stark contrast.

    The OTHER set of symptoms make one feel sick, a real worsening of symptoms. These are gnerally on the lists of induced hypokalenia and induced folate insufficiency. The ATP startup is often "smoothed out" with TMG. The ATP startup intensity can be relatively controled by titrating the ATP. If it isn't kept at the "edge", the edge doesn't keep moving back until one can take a normal dose of catnitine. For some reason, skating at the edge causes the body to re-adapt to a situation of plenty instead of starvation shutdown.
     
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