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B12 protocol, no startup from anything so far.. what does it mean?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Stillgoing, May 28, 2013.

  1. Stillgoing

    Stillgoing

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    Hi,

    I have been doing Fredd's protocol for about 45 days.

    Currently I am on 4mg Methyl B12, 3 mg AdenB12, 1.2mg Methylfolate, 500 LCF.

    Each time I start one a dont notice any difference at all. I thought I did at first with MethylB12 but not sure now. I have tried twice a dose of 30 mg Methylb12 (enzym) with no noticeable effect.

    I also take Lithium Oretate, Alpha Lipoic Acid, Benfotiamine, Magnesium Malate... plus B complex, C, Omega 3, D, Evening Primrose Oil... and Potassium

    This makes me believe that maybe my issues are something else.

    I was diagnosed with ME 15 years ago. i had a prolonged period of stress which gave me additional fatigue and new symptoms of constant tingling in feet, hands, face, cold hands and feet.... I had B12 serum level of 333, with an MCV which increased in a month from 100 to 103.

    Because of these symptoms, lowish B12, high MCV as well as slightly raised MCH, I started Fredd's B12 protocol....

    For me, taking these supplements is expensive and I have to constantly work out whether I can afford it all.. or what to do next...

    I think my symptoms are worse. More anxious.. more tingling.. but I also have some real things to deal wtih.. so not sure what cause what...

    Im just confused generally and not sure what to do next... I cant discern any change when I take supplements... i have always been the wired but tired type
  2. Crux

    Crux Senior Member

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    Hi Stillgoing;

    With a serum B12 of 333 and an MCV of 103, I would, no doubt, believe there's a B12 deficiency.

    There are some supplements that can irritate damaged nerves. Some people may have difficulty metabolizing them, causing a build up. ( Others may waste them and need more.)

    Since you are having anxiety and nerve tingling, I suspect some of the supps. are problems.

    My guess is that the dosages of folate, ado B12, and carnitine are too high.

    Also, personally, I've had nerve irritation from ALA, B6, and B1. ( haven't tried benfotiamine)
    I've had increased anxiety from vitamin d and omega 3. Oddly, I've had angst from magnesium too, TBH.
    (This is just an admission, not a dismission.)

    The nerve sheaths need fat, are you having good fat?
    helen1 and Valentijn like this.
  3. Stillgoing

    Stillgoing

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    Thanks Crux,

    All my issues started before I took any supplements and I was quite careful to monitor whilst adding supplements.

    Im going to try a few days away from most of the supplements.. apart from B12, maybe just 400mg of folate, Lithium oretate, C, and fish oils.

    I'll see if that makes any difference. I'll increase my good fat in my diet

    Poor sleep is still an issue
    stridor likes this.
  4. Crux

    Crux Senior Member

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    Hi Stillgoing;

    Someone else may completely disagree with what I've suggested, but I think it may be worth trying to simplify for a time just to see if anything is interfering.

    I agree about continuing the B12, I've settled with 7 mgs. daily now. ( 4mg. E.T. mb12 and 3mg. hb12)

    Most people really benefit from magnesium, including anxiety and sleep. Potassium, if needed, can also help anxiety and sleep. ( niacin is good too. I take niacinamide and potassium.)

    If there is a deficiency of zinc, it can be good for angst and insomnia. ( low dose)

    Many folks here have written that the lithium orotate has been good for this as well as B12 transport into blood cells.
    Stillgoing, helen1 and L'engle like this.
  5. Stillgoing

    Stillgoing

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    One thing I've noticed is that I need to learn to spell 'orotate'.
    Crux likes this.
  6. EastWest

    EastWest

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    Freddd has discussed that a missing nutrient can keep things from "turning on." My dosages for folate and MB12 have turned out to be very high. I had to also increase my B2 over what I had in the complex I was taking, and add some other essential amino acids as well as the carnitine. I usually take LCF but sometimes seem to need the ALCAR instead. I had major start up with the aminos.

    The cost is prohibitive, I know. It take patience to figure it out and a lot of trial and error unfortunately.
    helen1 likes this.
  7. Creekee

    Creekee Senior Member

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    EastWest, can you give an idea of the specifics of your high doses? I continue to be confused about increases. Seem to be handling a fair amount with no obvious problems, but not sure how far to push things.

    Thanks!
  8. Jarod

    Jarod Senior Member

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    Can you mention which aminos you are taking that gave you startup?

    thanks!

    Stillgoing

    melatonin is something I take for sleep, Valerian root is something I take on occasion for sleep on the really sleepness nights.
  9. Red04

    Red04 Senior Member

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    Check your b complex for "hidden" folic acid. Also, look at calcium, magnesium, zinc. Also my wife needs 2400mcg methylfolate to stay healthy. During her recover she would take that dose 2-3x a day (4800-7200). I reduced it to 1600mcg after she recovered and it wasn't enough to keep her healthy. More methylfolate always seemed to be better for her. We knew when it was "working" as the potassium drop hit like a freight train.

    Titrate one thing at a time, add all the cofactors one at a time.
  10. Jarod

    Jarod Senior Member

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    Hi Red04,

    Does your wife need any NAC, amino acids, gluten/casein free diet by any chance to help recover? Any CBS upregulations or MTHFR mutations?

    Still require potassium after start-up?

    thx
  11. Red04

    Red04 Senior Member

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    I never had her tested for genetic mutations, I don't know if that was available back then. It certainly wasn't talked about on the forums.

    We had her tested genetically, blood levels, and an endoscopy for a gluten allergy or celiac. She was negative on all tests.

    She had a large potassium demand while recovering. 3-5 x 300mg dosages daily to keep leg cramps at bay. Her potassium demand went way down after the first few months and for the past year she takes ZERO potassium and she typically eats fast food type stuff and normally eats just one large meal a day. She has a poor diet. EVERYONE tried to convince her to eat better when she had all the CFS/ME symptoms. But diet just wasn't the problem.

    No NAC or amino acids. Just basically followed (and still do) Freddds protocol.
    Jarod likes this.
  12. Stillgoing

    Stillgoing

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    Thanks for your advice.

    For some reason I haven't been supplementing calcium. I will start that.

    I am waiting for a b complex without folic acid. However I am using Country Life Dibencozide which has folic acid. I can't afford anything else right now. We all have to work within our means....

    I don't think I have a problem with folic acid but I really don't know.

    I will stick with the basics plus 3-5 mg of b12 and 400-800 mg of metafolin for a while.

    I have ordered some more metafolin so will experiment with increasing the dose soon..

    After that... I think my finances will be blown...
  13. Freddd

    Freddd Senior Member

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    Hi Stillgoing,

    Let me give you a checklist that could help a great deal of the way. The list below is open ended. Notice all the revisions just since version 2.0. But you may find a reason. Enzymatic Therapy B12 infusion is the only 5 star MeCbl I am currently aware of.



    THE 95% REASONS B12 AND FOLATE THERAPIES FAIL

    Version 2.0 - 03/10/11, Version 2.1 - 05/08/11. Version 3.0 – 10/25/2012, Version 3.1 10/26/2012, Version 3.2 11/05/2012, Version 3.3 05/29/2013



    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 10-30mcg/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 doesn’t work, oh well, that’s 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 enzymes or sufficient ATP

    2) They take active b12 as an oral tablet reducing absorption 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 absorption back to that same 1% and limited to binding capacity. With sublingual tablets absorption is proportionate to time in contact with tissues. I performed a series of absorption tests comparing sublingual absorption to injection via hypersensitive response and urine colorimetry.

    3) Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.

    4) 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 doesn’t 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.

    5) They don’t take BOTH active b12s.

    6) They don’t take enough active b12s for the purpose.

    7) Lack of methylfolate

    8) Lack of sufficient Methylfolate, a dose can start more healing than the same dose can complete.

    9) Paradoxical Folate Deficiency - Folic acid is taken which can block at least 10 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. Folinic acid is taken which can block at least 10-20 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) Paradoxical Folate Deficiency/Insufficiency – Green drinks, green juicing. Too much vegetable folate or other components are causing folate insufficiency symptoms, sometimes severely.

    11) Lack of l-carnitine fumarate (rarely ALCAR), the 4th of the Deadlock Quartet; some must microtitrate who have anxiety.

    12) Too much B2 appears to “overdrive” some methylation aspects causing an insatiable Hypokalemia including paralyzed gut and heart arrhythmias, severe folate insufficiency symptoms. Merely cutting back on B2 doesn’t always stop the overdrive. A cessation of B-complex is needed as well to stop the out of control symptoms. A week may be long enough.

    13) Too little Biotin can stall ATP production via the Krebs cycle. Too much can cause unbalanced partial overdriving of ATP production.

    14) Lack of other critical cofactors. SAM-e, Vit D, Lecithin, TMG, D-Ribose, magnesium, Alpha Lipoic Acid.

    15) Lack of basic cofactors

    16) Glutathione, glutathione direct precursors, NAC and /or whey is taken causing what is often called "detox" while actually being induced folate and b12 deficiencies.

    17) Having many additional supplements and herbs of unknown interactions and effects.
    helen1, Stillgoing and L'engle like this.
  14. L'engle

    L'engle moderate ME

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    I'm trying to figure out what is an acceptable amount of hypokalemia to indicate healing. I had no cumulative benefit when my hypokalemia rquired 2000-3000mg per day, but a higher dose (30mg enzymatic therapy/day) of meb12 caused a need for over 5000mg/day of potassium plus food sources, with waking in the night and being unable to get potassium back enough to get back to sleep. I'm at 15mg/day of enzymatic therapy b12 every other day and 60mg AOR every other day and the hypokalemia seems to be manageable though higher than it was at 45mg/day of AOR.

    The Enzymatic therapy product causes more potassium drop for me, but also seems to get into the blood brain barrier more than even 4 times the amount of AOR. It is just too much potassium sink to take it everyday though. The potassium loss lasts longer than 24 hours so was ramping up by the day if I took 30mg enzymatic therapy everyday. I was literally losing the tiny amount of functioning that I had due to being tanked into low potassium throughout the day and night (and losing sleep). I don't know if I am experiencing healing on the 15mg, or if I experienced it on the 30mg per day amount, so I am keeping going on the 15mg/60mg alternation and waiting to see what happens.

    Also taking a third of a capsule of adb12 dibencoplex, 1 jarrow TMG and 1 AOR b complex and 1 metafolin tablet just before starting the methyl b12 in the morning. Increasing these other things never seemed to do much, while increasing methyl b12 has an effect. Other cofactors didn't seem to do much and interfered with sleep so I stopped them. (also this pretty expensive. I want to take an amount of b12 that does not go to waste but starts up healing.
  15. Stillgoing

    Stillgoing

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    Thanks Fredd.

    Should I take the metafolin before meals? and before the methylb12?
  16. Freddd

    Freddd Senior Member

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    Hi Stillgoing,

    It's hard to say. I find that I get best results to do some of each in at least 4 doses per day, of 1/4 of the total daily dose. It seems to help absorption and/or retention of both forms of B12 (AdoCbl/MeCbl). When I was doing injections I took a dose at the same time I took the injection to give it time to be present for much of the absorption period from the SC injection.

    In many cases it is combinations of nutrients, not single ones. So the last one you add may be setting off the former 5 that seemed to have no reaction. It makes these things awfully difficult to figure out. On the Levels of methylation thread towards the end are about 7 or 8 posts that detail what symptoms are responsive to which of the Deadlock Quartet and some others.
  17. Freddd

    Freddd Senior Member

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    Hi L'engle,

    Sleep disorders are rampant with these deficiencies. It took me about 18 months, 18 on MeCbl and 9 months on AdoCbl before my sleep became very normal. Part of that was reduction in pain which would prevent sleep past about 5 hours nightly. However, the sleep was not restful. The difference was that when I was "awake" (with sleep disorders like falling asleep at the drop of a hat) my eyes were open and to sleep my eyes were closed. There wasn't any real difference in how I felt. Then quite suddenly I started getting very tired early in the evening and that progressed to a more normal bedtime and I slept far better and got restful sleep. When I woke up there was a long bleary eyed period as I gradually woke up. A few years later when I took Metafolin for the first time suddenly I was dreaming again for the first time in decades. It took about 2 rounds of neurological healing before the sleep corrected itself. How much B2 are you taking?
  18. L'engle

    L'engle moderate ME

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    Fr b2, I've only been taking 2.5-5mg a day since the b complex I have AOR, has too much b6 in relation to the b2 and I don't like to take a lot. (The AOR says 'riboflavin' on the bottle, but I confirmed with the company that it is R5P). I've ordered Thorne's R5P that comes in 36mg capsules. I will divide these into about four servings, and take about 10mg per day. Should I take b2 all at one time in the day or throughout the day?
  19. Stillgoing

    Stillgoing

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    Thanks Fredd.

    You have helped me to get more focussed again. Took my b12 and folate in 3 doses, taking the folate about 20 minutes before... I think this has given me a bit more energy over the day.

    4mg methylb12, 1600 metafolin.

    Whilst awaiting my new B complex (without folic acid), I took my b complex with 200 folic acid far away from any methylfolate.

    I will experiment with these levels.
  20. Stillgoing

    Stillgoing

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    One thing I have noticed is my gums have started to bleed in two places when I brush, more and more.

    Plus I have developed a very strong metallic taste in my mouth the last few days.

    Could that be a startup sign?

    I will try to add more zinc to see if that helps

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