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Active B12 Protocol Basics

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, May 8, 2011.

  1. Freddd

    Freddd Senior Member

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    BASIC VITAMINS AND SUPPLEMENTS
    Version 1 - 07/23/09
    Version 2 - 05/08/11

    I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don't work at all, a few work very well and most are mediocre. We are trying to maximize the probability of healing.

    All needed products are available at www.iherb.com at competitive prices about half of local health food store prices and good service. Using the coupon code RED843 will get a person $5 off their first order. This also gives me a $5 credit I use to supply these vitamins to people unable to afford them and further research.

    Absolutely critical minimums for basic healing.

    Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness http://www.iherb.com/Jarrow-Formulas-Methyl-B-12-5000-mcg-60-Lozenges/117?at=0

    Enzymatic Therapy 1mg B12 infusion, under upper lip or tongue for at least 45-120 minutes for best effectiveness http://www.iherb.com/Enzymatic-Thera...lets/2119?at=0

    Solgar Metafolin 800mcg http://www.iherb.com/Solgar-Folate-Metafolin-Folic-Acid-800-mcg-100-Tablets/13961?at=0


    REVISION - 05/08/11


    At this time I can no longer suggest any folic acid or folinic acid containing supplements for people in general. If a person has trialed folic/folinic acid containing supplements and compared it to trial of Metafolin for some months on each with several cycles and found no difference, then the folic acid would appear to not be causing paradoxical folate deficiency. As this is a very real risk for many who need b12 and folate I suggest using Metafolin only. In myself and others, food folate and food extract folate may affect one the same as folic/folinic acid and cause paradoxical folate deficiency. This deficiency reaction causes symptoms that is usually identified as "detox".

    CAUTION - THESE TWO SUPPLEMENTS CONTAIN FOLIC ACID

    Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
    http://www.iherb.com/Country-Life-Active-B-12-Dibencozide-3000-mcg-60-Lozenges/1637?at=0

    Jarrow B-Right b-complex, 1 capsule twice a day http://www.iherb.com/Jarrow-Formulas-B-Right-100-Capsules/110?at=0

    THE FOLLOWING SUPPLEMENTS DO NOT CONTAIN FOLIC ACID

    Source Naturals Dibencozide 10mg under upper lip or tongue for at least 45-120 minutes for best effectiveness, from 1 per day to 1 per week http://www.iherb.com/Dibencozide-Sub...ets/21571?at=0

    B-complexes containing methylfolate or Metafolin instead of folic/folinic acid and methylcobalamin instead of cyanocobalamin

    Douglas Laboratories B-complex with Metafolin
    Pure Encapsulations B-complex plus with Metafolin
    retailers vary, may become available at iherb

    POTASSIUM
    -

    Potassium is far more critical than I realized with version 1 of this page. Most people starting the active b12s and Metafolin will have low potassium symptoms which can include unusual spasms, muscle weakness, mood and personality changes, nausea, heart palpitations and a long list of other possible symptoms which makes it difficult to identify. Many people misidentify low potassium symptoms as "detox". This is a dangerous mistake to make.

    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, mid-range, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.2.



    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 kind of product is available in many supermarkets.

    Essential, usually needs supplementing
    Zinc - 50 mg
    Calcium/magnesium supplement
    D3 - 3000-5000 IU total
    A&D from fish oil, 10,000-(400-800-1000 D) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
    Vitamin E, Gamma complex http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0
    Vitamin C 4000+mg/day

    Possibly Critical Cofactors, add after initial stages, any number of these in any combination may be required for maximum effectiveness

    SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood

    TMG - enhances SAM-e, methylb12, l-carnitine-fumarate

    L-carnitine fumarate, works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood

    Alpha Lipoic Acid - enhances l-carnitine-fumarate 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. This then causes the methylfolate to be dumped from the cells in a process called the "methyl trap". This leads to a high serum folate but a low cellular folate causing a severe folate deficiency with increasingly severe symptoms over time. This is often mistakenly called "detox". NAC can produce these same folate and b12 deficiencies also misidentified as "detox".


    DEEP NEUROLOGICAL HEALING

    The most frequent neurological problems are peripheral neuropathies, often in characteristic stocking-glove distribution. Sublingual methylb12 and adenosylb12 appear quite satisfactory in healing these in a sizable percentage of the time. There exists a class of more severe neurological damage. This is sometimes identified as subacute combined degeneration and takes place in the brain and spinal cord. This can occur in people severely deprived of active b12s by diet or lack of absorbtion by other reasons. Another hypothetical cause may occur in people who for unknown reasons have a depressed Cerebral Spinal Fluid cobalamin level compared to their blood serum levels. In addition there may be mood and personality changes, hallucinations, sensory changes, psychosis and an abundance of neuropsychiatric changes. Some of these changes can be corrected with sublingual active b12s but some require much higher levels of active b12s than are usually achieved with sublingual tablets. In these situations usually only injections will help. Low CSF levels of cobalamin along with elevated CSF-MMA and/or CSF-Hcy is associated with CFS, FMS, ME, Parkinson's, MS, ALzheimer's and a number of other neurological diseases.


    B12 INJECTIONS
    The usual kinds of b12 injections, cyanocobalamin and hydroxycobalamin, are virtually always ineffective on any schedule. The once a month schedule for cyanob12 and the once each three months schedule for hydroxyb12 is useless as well. Daily sublingual active b12s are far superior to these in every way. These occasional injections were developed as a means to prevent people with pernicious anemia from dying. They do not promote neurological healing in any significant way. In order to promote neurological healing methylb12 injections of larger than usual size and greater than usual frequency must be used. My own experience is given below and corresponds with the ZONES defined on another posting. All injections are subcutaneous as that produces a slower diffusion into the blood maintaining a steadier serum peak. Methylb12 solution must be prepared under a deep red (fast orthochromatic film) safelight. The vials must be wrapped in foil to exclude all light. The syringe must be wrapped in foil preventing all light exposure. A small amount of exposure to room light will cause photolytic breakdown to hydroxycbl-aquacbl often causing acne type lesions and lack of effectiveness.


    1. Single or multiple injections per day to 5mg methylb12, each injection. ZONE 2, fully equivalent to sublingual tablets, did not stop continued neurological deterioration and progressive numbing of feet of 15 years duration.
    2. Single 7.5mg methylb12 injection per day stopped the progressive numbing of feet of 15 years duration. ZONE 3A1
    3. Two 7.5mg methylb12 injections per day caused some small reversal of numbing of feet and of neuropsychiatric symptoms. ZONE 3A1
    4. Four 7.5mg methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2
    5. Three 10.0mg
    methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2
    6. Two 15.0mg
    methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2

    Regarding options 4,5 and 6 above, which frequency is required for any given person may depend on mb12 solution concentration and individual absorption dynamics.


    BluebirdFeather and roxie60 like this.
  2. Freddd

    Freddd Senior Member

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    B12 ZONES OF HEALING BY DOSE
    Version 1.0 - 07/19/09
    Version 2.0 - 05/08/11

    Assumptions - Methylcobalamin and adenosylcobalamin are brands tested as 5 star for absorption and compared to injection by effect and colorimetry achieving 15% absorption or greater in 45 minutes or greater absorption in longer times.


    ZONE 1 Cyanob12, oral or injected any size dose, hydroxyb12, oral or injected any size dose, methylb12 oral in doses of 500mcg or less. Limited results largely confined to those changes requiring lab tests to see; reduced hcy, reduced uMMA, sometimes reduced MCV, occasionally mild changes in paresthesias and peripheral neuropathies over time. From literature and experience
    . ZONE 2A methylcobalamin (Jarrow or Enzymatic Therapies) sublingual 1mg to 50mg/day, single sublingual doses to 25mg and IM and SC injections up to 5mg. Dose proportionate healing of widespread symptomology. From literature, tests and experiences. Heals neurology, endothelial tissues, epithelial tissues, energy and mood. Some healing, hematological at least, is dependent upon adequate methylfolate being present. It appears that about 95% of healing takes place in Zone 2A & 2B.
    ZONE 2B adenosylcobalamin sublingual, 3mg to 60mg/day and single doses to 24mg. Less obvious dose proportionate correction and healing of a smaller more specific array of symptoms. Heals muscles, allows them to grow, energy, mood, affects neurology differently from methylb12.
    ZONE 3A1 Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 1-2 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 1-2 doses per day. Brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present. Neurological deterioration stops, limited amount of healing

    ZONE 3A2 Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 3-4 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 3-4 doses per day. Substantial brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present.
    ZONE 3B1 Adenosylb12 sublingual (Source Naturals), 40-60mgs per dose saturating oral cavity for 90-120 minutes, 1 dose per week to 1 dose per month. Brain and cord healing, energy and mood, but different from methylb12 was achieved with adenosylb12

    ZONE 3B2 Adenosylb12 sublingual (Source Naturals), 10-20mgs per dose under upper lip for 90-120 minutes, 1 dose per day to 1 dose per week taken in conjunction with 7.5mg mb12 injection, allowing diffusion into CSF with mb12. Brain and cord healing, energy and mood, but different from methylb12 was achieved with adenosylb12
    ZONE 4 Intrathecal injection. Enhanced neurological healing in intentionally damaged rats. Japanese research with diabetic neuropathy in humans, 2.5mg injected, indicated benefit as long as CSF cobalamin level remained high lasting from 3 months to 4 years depending upon person. From literature.
  3. Freddd

    Freddd Senior Member

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    REASONS WHY B12 AND FOLATE THERAPIES DON'T WORK FOR MANY PEOPLE
    Version 2.0 - 03/10/11
    Version 2.1 - 05/08/11


    1. They take an inactive b12, either cyanob12 or hydroxyb12. The research validating their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesnt work, oh well, thats the accepted therapy. There is no dose proportionate healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzyme
    2. They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
    3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtion back to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry.
    4. Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
    5. For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesnt work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
    6. They dont take BOTH active b12s.
    7. They dont take enough active b12s for the purpose.
    8. Lack of methylfolate
    9. Folic acid is taken which can block at least 4 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
    10. Folinic acid is taken which can block at least 5 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
    11. Lack of other critical cofactors.
    12. Lack of basic cofactors
    13. Glutathione, glutathione direct precursors or NAC is taken causing what is often called "detox" while actually being induced folate and b12 deficiencies.
  4. jeffrez

    jeffrez Senior Member

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    >> edited:

    I think there might be better Gamma Es out there, including this Jarrow E complex, which has much less alpha tocopherol, and also more gamma E complex per cap, 300IU vs. 200:

    http://www.iherb.com/Jarrow-Formulas-Gamma-E-300-120-Softgels/205?at=0

    Both have soy, which unfortunately seems hard to avoid in the gamma Es. Would like a source for soy-free gamma E if anyone knows of one.
  5. madietodd

    madietodd Senior Member

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    I'm confused about the dosage of metafolin. The Solgar forumula contains 800mcg, and the B-complexes recommended each contain 400mcg. So is the correct dose, at least to start with, 800 or 1200mcg? I'm guessing that the Mb12 in the B-complexes doesn't matter, because it's swallowed (not sublingual).
    And since Mr. Kite has brought up another E complex, do you prefer one brand over the other? I don't know anything about tocopherols (and don't need to!)

    Thanks!
  6. Freddd

    Freddd Senior Member

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    Hi Madie,

    The 800mcg dose for a folate was all about protecting people from taking so much that it corrected the blood abnormalities in pernicious anemia without preventing the nerve damage because they feared people taking folate without b12. 1200mcg is good, but as separate doses. As far as E-complex goes, they are both 8 factor high gamma E-complexes and I have no opinion as to which might be better.
  7. topaz

    topaz Senior Member

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    Greetings Freddd

    I am a newbie to this forum and having spent what I hope is enough time reading about your protocol, am about to embark.

    I have several questions, but firstly I want to express my gratitude and admiration to you (Rich and others) for your selfless and generous help of others. You truly are a giant.

    These are my questions:
    Q1: Why do you not include Metagenics Folapro as a source of methylfolate? This question is a bit academic as I have ordered Solgar Metafolin but wonder why that brand is not suggested despite that it contains only Metafolin?

    Q2: How long should one be on the basic protocol (methyl B12 and Metafolin) before introducing adenosylb12? Straight away or after a suggested period?

    Q3: Eliminating folate/folic acid makes sense based on what I have read elsewhere also. Do you think that one should try to avoid foods high in folate? I suspect that I am thinking about this too much!

    Q4: What dose of potassium do you recommend, as a starting point? Also what form of potassium?

    Q5: What is your suggested ratio of calcium/magnesium? 1:1? Also, the form of magnesium is very important based on the reading that I have done on magnesium. The most commonly used form of magnesium is magnesium oxide which is not bio-available. Bio-available magnesium is in the form glycinate, taurate or citrate (do not use glutamate, aspartate, oxide, carbonate or hydroxide which will not work, since they won't be absorbed from the gastrointestinal tract).

    Q6: What is your suggested dosage of Gamma E?

    Q7: Do you have a preferred brand of fish oil for vit A&D? I used to use the Blue Ice Fermented Cod Liver Oil as that is a natural source of both vitamins (and not synthetic form added in) and is traditionally made. However I notice that they no longer provide the vit A & D content (in part because it is very variable in a natural product and in part for FDA reasons as they wanted it to be classified as a food??). The Blue Ice CLO is a great product as the vit A and D are natural and not synthetic, per other brands. However, it does create problems for dosage control . I am thinking of ordering either the Natural Factors Halibut Oil (from National Nutrition as iherb does not carry this) , Natures Life A&D 10,000/400IU or Garden of Life Olde World Icelandic Fish Oil (both from iherb) as these are either partially or fully naturally derived. Rationale being that the natural form of vitamin is more likely to be bio-available. Thoughts??

    I am sorry there are so many questions that may seem trite but I would like to benefit from your and others experience.

    With big thanks
    Topaz

    PS As an aside, I try to eat liver (lamb or beef) once a week to get natural vitamin A. When I recently looked up the vitamin A content in USDA the other day that I noticed livers folate content which gave rise to question 3 above. Also in regards to Vitamin C, I understand that it is preferable to take one that has (citrus) bio-flavonoids to assist the function of vit C by improving absorption and protecting it from oxidation. I use Natural Factors C Extra but there are several brands available at iherb.
  8. Sasha

    Sasha Fine, thank you

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    Hi Freddd - just wondering why you've listed two methycobalamin supplements? Do we need to take both?
  9. Freddd

    Freddd Senior Member

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    Hi Sasha,

    These are the two 5 star tested mb12 sublinguals. I got my best healing taking both kinds and still do. They are slightly different presumably because of different bacteria used for brewing which is a known cause of small variations in the molecules.
    Fred
  10. Freddd

    Freddd Senior Member

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    Hi Topaz,


    Q1: Why do you not include Metagenics Folapro as a source of methylfolate? This question is a bit academic as I have ordered Solgar Metafolin but wonder why that brand is not suggested despite that it contains only Metafolin?

    I was not aware of it at the time of the original post which I copied and missed bringing it up to date. Also Solgar Metafolin is literally half the price.

    Q2: How long should one be on the basic protocol (methyl B12 and Metafolin) before introducing adenosylb12? Straight away or after a suggested period?

    I don't have a "should" on this. I waited 9 months out of ignorance and maybe missed my chance to correct certain neurological problems while they might have been still correctable. The clock is ticking on correction of nervous system problems.

    Q3: Eliminating folate/folic acid makes sense based on what I have read elsewhere also. Do you think that one should try to avoid foods high in folate? I suspect that I am thinking about this too much!


    I have the same problem with vegetable source folate as I do with folinic/folic acids. Meat source folate appears to not be a problem. I am going to start a new thread on this in the next couple of days.

    Q4: What dose of potassium do you recommend, as a starting point? Also what form of potassium?

    I started at 198mg/day and titrated up each time it wasn't enough to prevent low potassium symptoms. I take potassium gluconate. Some prefer the potassium chloride power that is dissolved in liquid. It is faster absorbtion. Iherb as a bunch of types and brands.

    Q5: What is your suggested ratio of calcium/magnesium?

    I don't have one. Various people have suggested various ratios, including for gender reasons.

    Q6: What is your suggested dosage of Gamma E?


    There is no evidence to support any specific amount. However, I would bet that some will be better in the long run than none.

    Do you have a preferred brand of fish oil for vit A&D?


    In the days of old (back when I started taking vitamins 41 years ago), only D2 was available and the only way to get active A was to take A&D derived from shark or cod liver oil. That is no longer the problem. I do believe that a person should take the active natural forms.
  11. mojoey

    mojoey Senior Member

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    I'm a bit new to Freddd's protocol so I have had a lot of catching up to do. Freddd I wanted to ask you for your thoughts on taking deplin, a much higher dose than the 800mcg are advocating. Is there a downside to taking mega high doses of metafolin if and only if it is well-tolerated?

    Thanks for doing all this research and being a pioneer. I did Rich's protocol for several years, including the full yasko protocol for a year, both without success, so I appreciate the different perspective on methylation. I've spoken with way too many people that experienced vast improvement from the mega high doses to not realize that dose, form, and brand are all crucial factors to consider. I'd like to add that I think timing is also a big factor, and that I wouldn't mess with these high doses unless I had suppressed my baseline inflammation levels by taking LDN and getting to a toxin-free living situation. I am also considering going on valcyte, so methylation to maintain sufficient DNA/RNA synthesis to buffer the side effects is even more important (hence why I'm considering deplin versus 800mg metafolin in the first place).

    Thanks again,
    joey
  12. Freddd

    Freddd Senior Member

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    Hi Joey,

    Deplin is good. I actually take my doses of Metafolin as 2-3x800mcg with each mb12 injection and 2x800mcg with food (2x per day). So I take 8800mcg in 5 doses. Methylfolate has a roughly 3 hour half life. I get better response taking divided doses. Be aware of the paradoxical folate deficiency and try getting rid of all folic and folinic acids (all folateas of many name variations other than methylfolate) to see if it makes a difference. Also, no NAC, glutathione or whey. Timing and sequence can matter.

    Is there a downside to taking mega high doses of metafolin if and only if it is well-tolerated?

    The side effects on Deplin research state "Deplin is generally well tolerated with no side effects different from placebo".
  13. warriorseekspeace

    warriorseekspeace

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    Dear Freddd,
    I've been holding off ordering adenosyl B12 (Source Naturals Dibencozide) til I find that code you mentioned. I just found it again here. Is this still the right code?
    Also, I did have a question about the methyl B12 possibly making me extremely drowsy (like having to crash into a three hour nap at times, until a while after it has dissolved. This is a 5000mcg one from Solgar. It seems to have happenned each of the four days I've been doing it.
    Is this possible that ist could be the methyl B12? And if so, why? will it pass? Does it mean maybe I don't need it or it's too much for my body? By the wya, brain fog has been my biggest problem, even as many of my oother problems hasve been getting better on medical treatment from ME doc. The brain does seem sharper once the groggies wear off each day I do the methyl B12 in my upper cheek.
    I"m also taking 800 mcg metafolin from Solgar, Solgar P5P, and some B1 and B2 and no flush niacin, and s big caps Solgar Choline & Inositol. I wanted to take this other stuff, s I d/c'd my meta B, becuase it had folic acid in it, but still wanted to keep the other B's the same.
    I'm also already taking alot of the other supp's, and waiting to add some of the others.
    Thanks so much.
    WaSP
  14. L'engle

    L'engle moderate ME

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    Hi Wasp, It's probably potassium. I need at least 1000mg of potassium a day, in addition to food. If you aren't taking any I'd start. Freddd writes a lot about potassium in the B-12 threads.
    WendyM likes this.
  15. mellster

    mellster Marco

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    Active b12 dibencozide (sublingual tablets plus folic acid) is by far the best-tolerated b12 for me. What could be the reason for this?
  16. Freddd

    Freddd Senior Member

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    Hi Mellster,

    Thjere could be a variety of POSSIBLE reasons.

    1. The folic acid induces enough deficiency to tone down the response.
    2. The action of adb12 is very limited and only fills the need in mitochondria and produces very little reponse the first time and less after that.
    3. You are very deficient in mb12 and the huge response is interpreted as "not tolerated"
  17. Rosebud Dairy

    Rosebud Dairy Senior Member

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  18. Freddd

    Freddd Senior Member

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  19. Rosebud Dairy

    Rosebud Dairy Senior Member

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    Thank you Freddd!

    Just the idea of having to avoid veggies kills me, but eating them (especially raw fruits/veg) really throws me down.

    I had good luck with the SCD (Specific Carbohydrate Diet), but maybe because it leaves out folic acid in addition to grains, gluten, etc. I have NOT tested the SCD since starting back up on the B-12 protocol with my specific C677T in mind.

    So, since starting methylfolate at 15 mg, I had terrible stomach issues, and had to start taking immodium at 8 mg per day, and I still had the leg twitching, muscle spasms, numbness, and tingling.

    Now, I take just
    5 mg Jarrow sublingual,
    and anywhere from 3.2 mg up to 7.5 mg of methylfolate (got a pharmacy generic on prescription with 7.5 mg pills to split the 15 dose)

    Doing the 15 mg just seems too strong. I can keep neuropathy symptoms at bay with as little as 3.2 mg (Solgar metafolin)

    I am making sure to eat at least two bananas per day, and using magnesium transdermally. I can eat MOST normal foods, and the immodium is now down to 4 mg per day. Last time I tried to add a mineral--zinc--I had a terrible crash, but that was before I knew all this. I also had a terrible crash after perhaps too much magnesium in my bath, but that was also when I ran out of Jarrow........YES I am now signed up for auto-ship!

    I still have to order supps beyond the basics, but have gotten amazing progress so far with gut issues and neuropathies, and now I am just scratching my head on the folic acid containing foods. My blood AGA antibodies were borderline, but genetically not celiac.

    The last thing I have to sort out is this:
    I was almost ready to start Vasoactive Intestinal Peptide (VIP therapy), and started the b12 stuff, so I called the pharmacy that sends it out to tell them NOT to send it yet.....they sent it anyway!! So I have a very expensive med waiting in my fridge, and I think I should let my B12 stuff settle down a little first, plus get a repeat ERMI.

    I also happen to be going to hyperbarics with my son who had a head injury.
  20. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Wasp,

    Better late than never.

    Also, I did have a question about the methyl B12 possibly making me extremely drowsy (like having to crash into a three hour nap at times, until a while after it has dissolved. This is a 5000mcg one from Solgar. It seems to have happenned each of the four days I've been doing it.


    Solgar wasn't a brand that was tested. If it is being effective mb12 generates melatonin. How rapidly determines when the tiredness hits. B12 deficiency causes sleep disorders. For me the extreme tiredness started happening in late afternoon and then worked progresssively later over a cople of months. That is a good sign I would think. It was for me. It indicated the mb12 was working and starting to normalize my sleep. This "out of phase" experience is a common one with CFS/FMS.

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