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ME/CFS and Beating the Clock
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A B2 story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by stridor, Sep 7, 2013.

  1. howirecovered

    howirecovered Senior Member

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    Your story is pretty inspiring and I'm patient also. I realize the exercise thing is a little like titrating up a supplement, but it's very difficult to do because the demands on my energy are so unpredictable. Family and business responsibilities mean that I often skip exercising to avoid getting overwhelmed.

    I'm recommitting to my exercise program now. Making notes on my calendar on bedroom wall (every month since beginning of my treatment is visible) helps me to see the patterns and I know it's a critical piece I need to give more priority.

    Thanks for the push :D
  2. Brad

    Brad

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    I am pushing my Drs comfort level with my injections now. I am taking 1000 mcg s.c. in the morning and then 500 more in the afternoon. I don't have access to the concentrated formula that you have - mine is 1 mg/1 ml. I'm guessing that the carbon to cobalt are pretty stable and the cobalt toxicity is not likely then?
    I could increase to 2000/day by injection and also take some sublingual - I wonder if that would do the trick?

    This thread began with me telling people about my strange relationship with B2 and how I had huge problems absorbing the stuff. Never heard of anyone else with that problem. I am down to 100 mg and am about to split tabs to see if I can tolerate lower. My sense is that my gut is working better now. I don't supplement the other Bs at this time.
    brad
  3. Brad

    Brad

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    @howirecovered
    For me, the hardest part of this illness has always been the brain-fog. Clarity of mind....I miss it so much.
    The LCF has helped. Freddd has suggested that I look at mB12 doses and that might help too. As I sit here now at 4:30 a.m. - I can't access my supplies because my wife is still sleeping - I am quite fogged. With my carnitine, hydrocortisone, B12 injection, and breakfast, the fog will diminish.
    Freddd suggests that I consider my mB12 dosing to avoid the peaks and troughs through my day. Wish that I could lay my hands on some of the concentrated stuff.
    So, light and easy exercise today and a teeny weeny sauna. I think that I am in good enough shape to write for your site now. Though I still have months of chelation to complete....maybe I will hold until I hit 90%. That is my goal. I don't expect to get out of this unscathed - my adrenals and colon are gone....90% with clarity of mind (last clear thought was the 3rd week of Nov. 2010). brad
  4. howirecovered

    howirecovered Senior Member

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    Oh, I can so identify! next to my physical endurance, the thing I most miss about my old self, is the mind power. I have a few relatively good hours in the mornings but still struggle with fog for much of the day... I've been mentally handicapped for so long I can't even remember really what I used to be like.

    Looking forward to your interview whenever your feeling ready.
  5. stridor

    stridor Senior Member

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    @Freddd
    I am taking mB12 1000 mcg s.c. in the morning and then 500 mcg at 4 p.m. This is pushing my Drs comfort level. He had not heard about MTHFR before I came along. I could get up to 2 mg/day injectable without giving him a stroke. Part of the problem is that I don't have access to the concentrated form that you have.

    I will increase the injection to 2 mg/day and try to keep a tab on the go through the day. Any improvement and I will move mountains to find the concentrate.

    In spite of what I said 2 posts ago, I take the daily minimums of B1, B2, B5 and B6 by injection. I am decreasing the B2 and am currently taking 100 mg/day. I also take an extra 25 mg of B6 and Biotin 5000 mcg/day.



    @howirecovered
    The exercise was hard. It hurt during muscle contraction but I did not get he sick "fibro burn" after the movement stopped as before. It took me all day to recover but I'm OK right now. Tomorrow will tell me more in terms of exercise tolerance.
    How do you want to work this? Are you going to send interview questions?
    brad
  6. howirecovered

    howirecovered Senior Member

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    thanks for asking Brad, I just emailed the interview questions to your hotmail address. And @Freddd, I would be delighted to send you one too, if you'd like to see your story at http://howirecovered.com/category/success-stories/ - of course it's fine for you to stay anonymous with first name only...
  7. Freddd

    Freddd Senior Member

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    I'd like to explain how I came up with 20mg/ml is that I read Dr. Neubrander's details. He suggested 25mg/ml because of how it affected evenness of absorption from SC injections. My pharmacist said that he just couldn't get that much MeCbl in solution and large amounts were left in the .2 micron filter. Then in the fridge it developed massive micro crystals so I had to heat in warm to the touch water to be able to inject and not clog a 31 gauge needle. 20mg/ml dissolved fully and didn't poly nucleate in the cold.

    In the USA most all injections of MeCbl are prepared at a compounding pharmacist so it can be prescribed in terms of 20mg/ml. I prepared my own injections for some while. I had to use a magnetic stirrer with the vessel in a 100 degree F. water bath to fully dissolve the crystals and art 20mg/ml it took a couple of hours of stirring. This has to be done in the dark or with deep red fast orthochromatic film safelight. MeCbl is fragile in solution. I can tell the difference after 10 minutes exposure of the vial to room level light or one minute in a syringe. I did a series of tests. So I wrap the vials in foil and wrap the syringe as well. If you can see the color it is breaking down as you look at it. It deteriorates to HyCbl-H2OCbl equilibrium reaction.
    stridor likes this.
  8. Freddd

    Freddd Senior Member

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    Hi Stridor,

    There was some Japanese research with several diseases all having neuropathic problems and low CSF cobamain. They found a "threshold" of healing for the CNS and they suspected "upregulation" of the neurological healing. A couple of us did a series of tests and found that the threshold was greater than 6mg and <= 7.5mg in an SC injection with a 5 star MeCbl. We found that 7.5mg 4x per day or 10mg 3x per day and for some 15mb 2x per day worked for continuous neurological healing. This 30mg dose is right in the neighborhood of the 50mg dose of which they were speaking.

    The dose proportionate effectiveness with SC MeCbl in the body is about up to 3mg injected SC according to a number of sources and my own experience. That equates to about 15mg sublingual for as long as 2 hours. Then no noticeable effect until somewhere in excess of 7.5mg (30-50mg sublingual for 2 hours). If a person has CNS damage of many varieties a 5 star MeCbl SC injection, of 7.5mg will usually be noticeable in 1-2 hours. Done IM it will get high enough serum level to get into the CNS for about an hour. A 7.5mg dose has that for 6-8 hours, 10mg 8-10 hours or more depending upon what kind of CSF/cobalamin problem the individual has,. There is a second threshold in the CNS at 7.5mg or more, as verified in quite a few people now. The frequency depends a lot upon how slow your CNS takes it in or how quickly it gets dumped form the CNS. Another Japanese study used 2.5mg of intrathecal injected MeCbl with diabetic neuropathy. The high B12 lasted in the CSF from less than 3 months to more than 4 years in different people.
    stridor likes this.
  9. howirecovered

    howirecovered Senior Member

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    can you tell me what are the signs/symptoms of neurological damage that would respond to this high dose b12?
  10. Freddd

    Freddd Senior Member

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    This is the best description. It is mostly directly based on people who have done this in the context of the Active B12/folate protocol.

    Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13, Version 1.1

    Others mentioned similar patterns and variations.

    1. Initially – Mecbl

    2. +5 months 400mcg SAM-E

    3. + 4 months AdoCbl

    4. + 3 months titrate +50mg zinc

    5. +4 years 400mcg Metafolin

    6. +1 year LCF

    7. + 1 month TMG 1000mg/day

    8. 30mg total of MeCbl injections (3 or 4) daily,

    9. +0 Reduce SAM-e to 200mcg

    10. + 4 years remove TMG

    11. +6 months increase SAM-E to 800mcg

    12. Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect.



    These symptoms are what responded very well to CNS penetrating doses of MeCbl either as 50mg sublingual single 4-5 hour dose or 4 x 7.5mg or 3 x 10mg or for some 2 x 15mg subcutaneous MeCbl injections. Metafolin in some way enhances retention of AdoCbl and MeCbl with excretion visibly decreased. A sublingual dose of 1-2 tablets each hour added for 12 hours appears to generate substantial CNS penetration as well.



    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


    Elevated CSF Hcy
    Low CSF cobalamin
    limbs feel stiff
    Drowsy


    CNS penetrating dose MeCbl – AdoCbl
    dimmed vision - usually not noticed going into it because change can be very slow or present for life
    Clumsiness


    CNS penetrating dose MeCbl – AdoCbl - Metafolin


    Slow to adapt to night vision


    CNS penetrating dose MeCbl – AdoCbl – Metafolin – LCF


    Difficulty in word finding



    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


    Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
    demyelinated areas on nerves
    subacute combined degeneration
    axonal degeneration of spinal cord
    unsteadiness of gait
    ataxic gait, particularly in dark
    positive Romberg
    positive Lhermittes
    Loss of motor control over some or all of toes
    Loss of motor control over part or all of feet
    Loss of sense of joint position
    sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
    sudden "ice pick" pain
    decreased reflexes
    brisk reflexes
    Foot Drop
    tripping over toes
    injuring toes catching top of toes on floor
    general feeling of weakness
  11. howirecovered

    howirecovered Senior Member

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    hmmm, i have dimmed vision, some clumsiness especially before meals when my brain is shutting down, poor night vision and difficulty in word finding but no others from the list....
  12. Freddd

    Freddd Senior Member

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    The clumsiness is full time not related to food or blood sugar, and varies from day to day but progresses over years for me. This is specifically slow to adapt night vision but not poor after adapting. Difficulty in word finding is something that can be of greater volatility than the clumsiness. For me it is sort of like the angular cheilitis. If I'm going the right direction it lessens over days to weeks and is gone in months. Going the other way gets very scary in periods of weeks. It goes downhill considerably faster than up. Dimmed vision can have other cause. You may have some of the brain problems but appear to lacking the cord lesions that I appear to have. I would certainly want to figure out what is happening. It doesn't have the pattern of SACD yet. By the time there is, the damage may be there to stay. The only definitive way to test it is a sufficient dose of each MeCbl and later a similar dose of AdoCbl, in the 30-50mg sublingual range. My experience appears to indicate, and many other have had the same effect, that if there are any additional changes at those doses after having no further effect at 20mg or so, that the B12 has CNS effects. But before that healing needs to be started at all levels is everything needed is at hand. CNS healing is the most difficult to trigger and works least well. Did you have any of those symptoms previously and they have cleared up? Good luck.
  13. howirecovered

    howirecovered Senior Member

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    thanks Fred. no I don't believe I've had any of the other symptoms previously. At 5 mg a day, I'm currently a long way from those large doses but will continue working my way up and make sure to test them when the time is right. I'm guessing that might be in 6 to 9 months...

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