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B12 for probably non-ME/CFS symptoms

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by garyfritz, Apr 29, 2014.

  1. garyfritz

    garyfritz Senior Member

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    Adding the adB12 & methyl folate back in did definitely seem to help. I slept better and even had some cramping in my calves when I got up the first morning!

    On the 3rd night I woke up with symptoms, minor but enough to keep me awake. I took some CL mB12 to get back to sleep, but couldn't sleep much past 5am. Hopefully that won't be a regular occurrence. The shots are a hassle so I'd hope they would *replace* the CL and let me sleep through the night without additional sublingual B12.

    I also stopped taking 5HTP about a month ago, wondering if the B12 alone would be enough to let me sleep well. The 5HTP never addressed my B12 symptoms, but it just made it easier to sleep through the night and go back to sleep if I woke up. Gonna start the 5HTP again tonight.

    BTW @Freddd, do you take the methyl folate sublingually, or can I just swallow those?
    Last edited: Aug 10, 2014
  2. Freddd

    Freddd Senior Member

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    Salt Lake City

    I swallow them, in groups of 6, 3 times a day.
  3. whodathunkit

    whodathunkit Senior Member

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    :rofl: Gary, you're the only person I've seen so far that's been happy about manifesting symptoms of potassium deficiency. :rofl:
  4. garyfritz

    garyfritz Senior Member

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    At least then I know it's working right!! :D

    What little cramping I have, happens in the morning. Which can disturb morning sleep. I haven't tested it enough to tell for sure -- can you take potassium at bedtime and have it last through the night? Or do I just have to plan to have potassium at my bedside for when I first wake up?
  5. whodathunkit

    whodathunkit Senior Member

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    Dunno about that. My deficiency symptoms were never all that bad that I got cramps. I just got fatigued.

    Why don't you try taking it at night AND keeping some by your bedside? That way, if the night dose lasts until morning, everything is fine. But if the night dose doesn't last you all the way 'til morning you're covered.
  6. garyfritz

    garyfritz Senior Member

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    Yup, that's my plan. I only really cramped up the first day starting again with the DQ. (Probably because I went straight from zero to 4mg of adB12 & 4mg methyl folate.) Sometimes I have a bit of mild cramping when I'm trying to go back to sleep in the morning -- especially lying on my stomach, toes pointed, calves don't like that :) -- but usually it's not a big deal.
  7. Freddd

    Freddd Senior Member

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    I take 3 tablets at bedtime. Then, depending upon how my legs feel, I take 3 more in the middle of night call to get rid of that water I drank at bedtime.
  8. garyfritz

    garyfritz Senior Member

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    FWIW I don't think injected mB12 is going to work for me. I've been keeping my symptoms under control, sleeping well at night, etc, with 20-25mg/day of CL. This week I went back onto injected, replacing 20mg CL with 2-3mg injected, still doing my 4mg adB12 and 4mg mfolate. (@Freddd says sublingual mB12 has low absorption rates, 5-10%, so I figured 20mg CL should be equivalent to 1-2mg injected.)

    Well my sleep sucked this week. Not as bad as the pre-B12 days, but bad enough. I'd wake up wired & twitchy at 3-4am, and even 10mg of CL wouldn't settle me down again. In the morning I'd feel groggy and almost woozy -- which often happens after the long-night-of-twitching episodes.

    So yesterday I went back on 20mg CL (with a "prophylactic" 5mg since I was meeting friends for drinks :)), and I slept great. Woke at about 4am but I was only awake for a little while before drifting off again. I also had some mild cramping in my calves this morning -- first cramping since the last time I dropped the injected and went back to CL.

    So for whatever reason the injected mB12 doesn't seem to be working very well for me. I wrapped it in foil as soon as I got it so hopefully it's not light-damaged. Possibly it would work if I boosted it to 4-5mg or more, but why? The CL seems to be working for me, and I don't have to hassle with needles.

    Do you think there's any value to using the 20-25mg CL that seems to be working, AND add on 1-2mg of injected just to boost the serum levels? I take the CL & adB12 in the afternoon/evening, so maybe inject another 1-2mg in the morning?
    Last edited: Aug 29, 2014
  9. sueami

    sueami Senior Member

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    I'm interested in your experience, Gary, in part b/c I used your pharmacy for this batch of mb12 I'm taking. I have to say, they were far less careful in the shipping of it than the pharmacy I used previously, which didn't make up the batch until they knew they could ship it out overnight without hitting the weekend. Women's Health Intl pharmacy also shipped in a styrofoam cooler with ice packs. Apparently maintaining a cool temp isn't that important compared to darkness, but it speaks to a level of care.

    My mb12 from McGuff arrived warm to the touch, and I wondered if it was in any way degraded. Before you give up entirely on injected, you might consider asking your doc to order from Women's Health Intl Pharmacy in Arizona. They are significantly more expensive -- I paid $130ish for two 10 ml bottles of 1mg/ml concentration.

    But if CL tabs are working for you, might just go with that, at least until it changes.

    I do feel effects from the McGuff mb12, despite my concerns about how it was shipped. But I've also essentially doubled my dosing of it by taking it daily yet I'm not noticing dramatic effects. I don't feel that it has improved my energy overall, but I notice a brightening in the hour or so after I inject.

    fwiw,

    Sue
  10. garyfritz

    garyfritz Senior Member

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    That is very interesting, Sue! I did get some benefits from the McGuff B12, but it's not enough to replace the 20+mg of CL I've been taking. Experimenting with 2-3mg of injected B12 (instead of CL) totally hoses up my sleep patterns and knocks me for a loop for a few days until I go back on the CL. So I'm just not seeing any point in it. Maybe I need to try a bigger dose. You said you doubled your dose -- how much of the Women's Health B12 were you taking?

    $130 for 2x10ml isn't that bad, really. That's $65 per 10ml vial. My 10ml McGuff vial was $57, though that included 20x syringes, 18ga, and 28ga needles. But if it takes 2x more of the McGuff than the WH, the WH is a much better deal.
  11. sueami

    sueami Senior Member

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    I was taking 1 ml every other day, per my doc's wishes. He in fact wants me to test my blood levels of b12 now that I've gone to daily 1 mg shots (which I did in part b/c the 30 ml bottle isn't supposed to stay good for more than a month), I suppose because that seems like a lot to him. Hah. He should read these boards.

    I got one 30 ml bottle from McGuff for $50something, vs the two 10 ml for the $130 so I thought it was a good deal. I might try switching back to CL after the McGuff shots run out and see if that does as well for me.

    I did notice, in the two weeks that I was off the shots, I crashed and took a week or more to recover (after doing maybe two hours of moderate house cleaning and having friends over for a low-key dinner), even as I was taking 10-12 enzy therapy 1mg tabs a day.

    I keep meaning to post a thread asking about whether people have managed to increase their physical energy levels with methylation support. I've seen great improvement in mood and brain fog and other neurological/cognitive symptoms, but have actually declined in my overall energy levels and amount of activity I can do without crashing in the four months I've been doing this. The very challenging vacation in July certainly accounts for the decline, but I'd hoped methylation support would help me recover from it. Not so much yet.

    eta: if the CL tabs are managing symptoms, I say run with that for as long as it lasts. But consider Women's Health pharmacy if you find you need a bigger boost at sometime in the future.
  12. garyfritz

    garyfritz Senior Member

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    I'll keep that in mind, Sue.

    In the meantime, what do you think of the practitioner you're using? My MD is taking the "low and slow" idea to extremes. She told me to take 1mg injected twice a week, and "let's see what it looks like after two months." I'd be a basket case by now if that's all I did. And I'm not sure how well she understands the different parts of the genome.

    I want somebody who can analyze my genome and determine what I need to do to keep this under control long term. Gobbling CL’s like candy is working for now, but I don't like the way that it keeps changing, and I don't like not understanding how to keep it functioning properly. I want to understand the methylation better, and I want to understand how the other SNPs fit into it too.
  13. sueami

    sueami Senior Member

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    I'll let you know after this next appt on the 12th. So far, his focus has been on going g/f and dairy, yeast and coffee free to heal the gut. He seems to know a decent amount about methylation but says he's never seen anyone cured by methylation support, it's just something to address along with the deeper dysfunction, which as far as I can tell, he believes to be coming out of the gut.

    His gut advice is not particularly detailed, nor do I feel it has made a big difference in my health so far, so I'm going to press him on it next visit, as well as ask about other testing to run down either nutrient deficiencies or immune system footprints of latent infections.

    Long story short, I'm reserving judgement.

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