Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Transdermal B12 oils

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by garyfritz, Oct 14, 2014.

  1. garyfritz

    garyfritz Senior Member

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    @PointsNorth, I don't know how else to describe it. :lol: When I wake with B12 symptoms in the night, they usually manifest as tense / twitching muscles -- impossible to relax them -- sometimes escalating to full-body thrashing that I really can't control, at least not in my half-awake state. I also tend to be agitated and upset, partly just because the @#%@#!! stuff is driving me crazy (similar to RLS-type crazy-making) and ruining another night of sleep, but the agitation itself also seems to be a symptom of the B12-deficiency reaction.

    When I'm in that state I obviously can't fall asleep, but often I'll be so groggy that I'm not entirely awake either -- and it is literally nightmarish. I think at times I've fallen into fitful sleep and had actual nightmares about how nasty it felt when I was trying to fall asleep. In 2013 before I discovered B12, I was spending 3-5 hours nearly every night in a semi-conscious daze, thrashing and tearing the bed apart. It sucked bigtime and it meant I was getting almost no restful sleep. And generally the next day I'd feel like $#|+, more than just sleep deprivation. It was like a B12-deficiency hangover.

    Thank God for B12. When I was waking in the night, I could take a Country Life 5mg or a shot or two of Readisorb, and I would get this almost-instant "ahhhhhhh" reaction. My muscles would relax and stop twitching within a minute or three, and next thing I knew it was the next morning.

    But I haven't had to deal with that much lately. The B12 oil seems to be doing a pretty good job of keeping my serum B12 levels high enough, steadily enough, that I very seldom wake with symptoms now. :balloons::):balloons:
     
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  2. PointsNorth

    PointsNorth Paulo

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    @Gary Happy for you.

    My serum B12 levels are sky high but I can't absorb/bind & transport. My metaphor: there are many trucks on the highway but none of them are getting to the depot! I shall try to procure some oil.

    For your RLS-like symptoms try some slow-release magnesium. I buy mine at Jigsaw Health. I find their probiotic good to.
     
    Last edited: Oct 27, 2014
  3. Ema

    Ema Senior Member

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    [/quote]
    Sulfite or sulfate?
     
  4. garyfritz

    garyfritz Senior Member

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    @PointsNorth, have you had your genome checked? You may have mutations that make it difficult-to-impossible to use the type of B12 you have in serum. The oil provides bioavailable forms (methylcobolamin and adenosylcobolamin) that someone (like me) with the crucial mutations (MTHFR, MTRR, etc) can use.

    (I [think] I [need] some {more (parentheses)} [don't {you}] ??) :rofl:

    I've had RLS for over 50 years. I tried lots of different forms of Mg (oral, transdermal, baths, etc) about 10-15 yrs ago to try to get the night-time twitching under control. Helped very slightly but not enough to bother, and I don't remember it affecting my RLS at all. But as long as I keep my B12 levels up, no RLS!
     
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  5. PointsNorth

    PointsNorth Paulo

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    I was told that I can't absorb methylcob. I've only had luck with cyno injectible. Maybe oil will work, maybe the hydroxycobalamin.
     
  6. liverock

    liverock Senior Member

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    Sorry maryb, the post should read Sulphate strips as per the link. I think the same supplier does Sulphite strips but I agree they are expensive especially when you have to purchase them in 100's.
     
  7. liverock

    liverock Senior Member

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    Oops! Thanks Ema it should be sulphate as per the link, I'm always getting them mixed up. :)
     
  8. garyfritz

    garyfritz Senior Member

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    I'm the wrong one to comment on that. But I thought methylB12 was the basic piece that everyone required, and that some of us can't produce from precursors. I don't know where the hydroxyl fits in.
     
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  9. picante

    picante Senior Member

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    @garyfritz, I used up a whole container of these sulfate strips, scratching my head the whole time. The colors were always pinker than the orange shown on the container. I would describe them as peachy or coral. My levels seemed to range from 200-400 to >1200. When my sulfate level was 200-400, my urine was usually very pale and I felt like crap.

    When it was >1200 (once), I had just eaten mochi, which lists raisins, cinnamon and brown rice as ingredients. Raisins are usually sprayed with sulfites. I had huge bloating and felt as though I'd been drugged. This was a set of symptoms I had daily for many years whenever I ate. It improved when I started taking T3 (thyroid).

    My hypotheses: 1. Perhaps I wasn't converting sulfites as well when my sulfate levels were low. Maybe I would get more usable information by measuring urine sulfite levels. 2. I have a sulfite sensitivity.
     
    Last edited: Oct 29, 2014
  10. sueami

    sueami Senior Member

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    All right, I'm going to chime in with another testimonial for the B12 oils. Gary and I shared an order, though I've been using much less of them than he is, because I still take 1mg subcutaneous of MB12 each day. I've held off on reporting about my experiences because my symptoms seem too tangled up and my supplements to varied to notice immediate effects or for me to definitively identify what might have produced them.

    But over the weekend I overdid my activity levels, mental more than physical, and suffered a crash. I notice when I socialize or use my brain too much now I wake up in the middle of the night with a hangover-ish feeling that persists for days. I applied a squirt of the mb12/adb12 blend oil (which I'd been taking once or twice a day for a week or so) and felt that immediate relief that a number of you have mentioned. I've only ever felt that with the b12 shots and I was pretty shocked to notice it so strongly with the oils.

    I was quite excited both that the oil was working and that I could confirm that b12 was alleviating my symptoms. Honestly, overall my health/mood/energy has been steadily rising for a good six weeks or so, despite my having overdone social/congitive work enough to cause crashes twice now. I have my old high emotional energy back, I am silly and make jokes that highly amuse me again. I've increased my safe daily activity level by at least 50 percent (though I'm not attempting anything more physical than moderate housework or light gardening), and when I overdo things, I am bouncing back noticeably faster.

    I haven't been sure what of the many changes I've made might account for it. I've added 5mg DHEA and Maca powder support for adrenals in that time, bumped my b6/zinc supplementation for possible pyroluria, and switched half my mfolate to folinic acid on the advice of the researcher who developed these oils.

    I'm also 2 1/2 months into daily mb12 shots which may be refilling the well/liver, but the fading away of the hangover/heart chakra agitation (not quite strong enough to be palpitations but quite unpleasant, especially at night when other sensory input can't mask it) within a few minutes of applying the oil was quite wonderful.

    I've not taken sublinguals since I started the oils a month ago. I started out with the straight MB12 but swapped bottles with Gary and I feel like I"m responding more strongly to the adb12/mb12 blend -- either because it's a more natural ratio, as the researcher, Greg, says, or because I haven't been absorbing as much of the adb12 sublinguals as I thought and really needed more, I can't say.

    @aturtles, I know you were interested in my reactions to the oils, I figured I'd post it on Gary's thread so that others could get a sense of how many people are trying the oils and responding to them.
     
    Last edited: Nov 4, 2014
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  11. sueami

    sueami Senior Member

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    So, a quick update to the last post. For the last two days, I've had a big reaction to my mb12 1 mg shot -- burns going in (which it never has before), and I feel really weird and I think overmethylated afterwards -- raciness, spaciness, dissociativeness, worse yesterday than the day before. I took 100 mg of niacin in fact, for the first time ever, yesterday. Not sure how much effect that had or whether it was already wearing off.

    I've got 3 theories about what's going on: my bottle of mb12 (which is only about 2 weeks old, I use them up in four weeks) might have gone bad, I might have somehow filled up on mb12 and need to back down on dosing, or the b12 oils are so effective that I can't utilize the b12 shot fully anymore.

    I'm going to skip today's shot and just use two squirts of the oil, morning and late afternoon, and try again tomorrow or hte day after.
     
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  12. liverock

    liverock Senior Member

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    Thankyou @sueami (and @garyfritz ) for being the "canaries in the coalmine" in this exercise on how effective the transdermal B12 oils are for MTR/MTRR mutations.
    As you may know these mutations are what RichVanK called the 'Methylation Cycle Block' and his whole theory is based on B12/Folate overcoming this block. If he was here he would be thrilled to hear that there was now an easier alternative to B12 orals and injections.

    BTW Sue how much methylfolate do you take with the B12 oils?
     
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  13. sueami

    sueami Senior Member

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    I recently switched up my folate from 3-4 800 mcg mfolate tabs per day to 1-2 mfolate tabs taken sublingually instead and 1 folinic acid cap at 800 mcg.

    I haven't been successful in pushing higher doses than that, partly because I couldn't figure out how to up my absorbed mb12 levels, until getting the b12 oils, and I didn't feel intellectually comfortable at a ratio of folate that was greater than the b12 (based on freddd's 2-1 mb12 to folate ratio). Now it appears, there's an upper limit to how much my body wants to absorb right now of b12.

    I might try pushing folate higher, once I feel stable on the b12 front (still feel weird and out of sorts today, so may take a few more days) now that I understand my snps better and realize that I have other snps really impairing my folate cycle (MTHFD1, MTHFS and SHMT).
     
    Last edited: Nov 6, 2014
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  14. Idie

    Idie

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    Methyl B12 is very light sensitive. Doesn't the light exposure when you rub the oils onto your skins ruin or degrade the Methyl? I
     
  15. garyfritz

    garyfritz Senior Member

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    @Idie, I asked the same question. Greg assured me it wasn't a problem, though I can't say why.

    I know that I haven't been applying it in the dark :) and it seems to be working great. @liverock, I cut back on my folate a bit. I'm taking about 1.2mg/day right now. Don't have a firm feel for how much I *should* take, nor do I have any direct feel-good/feel-bad connection with mfolate (unlike b12, which is VERY direct and immediate), but Greg recommended backing off a bit from the 2.4mg I was taking.
     
  16. GhostGum

    GhostGum Senior Member

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    I have been using the b12oils Adenosyl/Methyl mix now for about 6 months, even though I had been making good progress for years before this, I think b12 has been the missing link all along. Need my genetic results to confirm though but giving Greg my family history he said its highly likely I have mthfr and mtrr mutations, can not thank him enough as well for his willingness to correspond so openly.

    Sadly I can not compare these oils to other products though, because I just went straight for the oils and will leave it at that because it is quite obvious to me how well they work, most doses it is like cleaning my brain with windex. Currently I am only using it once every 2-3 days but after reading this thread I am going to up the dose I think to once a day, because @garyfritz story about his trouble sleeping it is exactly what I experience, probably to a lesser extent though, but even last night, after playing too much golf and activity last few days, could barely get to sleep due to muscle tension and high irritability over nothing; also have the odd waking spasm episode but that is rarer these days thankfully.
     
  17. Idie

    Idie

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    Greg emailed me back with the answer to this question of light sensitvity. He said they mix it at a much higher concentration and because of the density of the product it almost protects itself. Methyl breaks down within 4 minutes of exposure so his answer is interesting. He does recommend not rubbing it on exposed skin in the sunlight. My next question is that of the size of the B12 molecule. It is the largest of all vitamins so how does it penetrate the skin. I'll let you know what he says.
     
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  18. garyfritz

    garyfritz Senior Member

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    Interesting update:

    When I started using the oils, Greg expected a single dose a day should be enough -- as it apparently is for most people. But with 1/day I continued to have symptoms, and even 2/day wasn't enough without additional sublinguals. So for the last month I've been taking 3/day doses (1 ad/me + 2 methyl), with almost zero additional sublingual B12, and I've had almost zero symptoms. It's been great!

    For the last 3-4 days I noticed my methyl bottle was spitting out the oil with more force than usual. I didn't stop to think through what that meant, but I believe the bottle is nearly empty. It's spitting out as much air as oil. It's hard to tell with the oil spattered onto my palm but I'd guess I've been getting about half a dose in a squirt.

    Then last night I woke with nightmarish thrashing, twitches, the works. It took 5 half-tabs of 5mg CL to get me through the night, and it was still the worst night I've had in months. I still feel "wrong" (weak, shaky, kind of achy) today.

    This suggests several conclusions:

    * I must have a ferocious need for B12. 2/day doses (1 ad/me and 2 * 1/2 methyl) was NOT ENOUGH to keep my symptoms in check.

    * It only took 3-4 days of 2/day to completely drain the reserves I'd built up with a month of 3/day. I don't know if that's because 3/day only trickled a tiny deposit into the liver / brain each day, or if I sucked it out at a huge rate with "only" 2/day, but it didn't last long. I imagine even a full reserve wouldn't last long with 1/day or no oil at all.

    * That implies I probably need to plan on continuing 3/day for a long time, probably permanently. 3/day works out to about $70-$80 a month, so it's not cheap. But I was spending $35-$40/mo on Country Life 5mg sublinguals, with pills in my mouth much of the day and night, and not getting results this good. It's worth it to me. (And most people shouldn't need this much.)

    I ran this all by Greg and his first response was "Boy you have an interesting and indeed novel set of problems." :D

    He agreed that I seem to have an enormous demand for B12. Looking at my SNPs he said he could sort of understand why, but he had no idea my SNPs would cause such a huge need. He hopes that after sufficient time (a year or so) I might be able to back off from 3/day, but I'm not confident. He also theorizes it's possible I basically can't store the B12. He suggested some supplements (mostly B vitamins and betaine) that might help, but I'm already taking most of them.

    Unfortunately I re-ordered too late (lesson learned!) and my replacement order won't be here for 3-4 days. Then I'll run for another month of 3/day and repeat the experiment. I'll intentionally back off to 2/day and see how long it takes for symptoms to recur. If I have another bad night after 3-4 days, that will be pretty strong evidence that I really do need 3/day on an ongoing basis.

    As I said, most people apparently require less B12 than I do, so they shouldn't face these issues. But somebody might...

    Gary
     
    Last edited: Nov 10, 2014
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  19. Idie

    Idie

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    Everyone might find this interesting. I was talking to the Pharm D at my compounding pharmacy today about the Methyl Oils. She tells me that there is now a product that the national compounding pharmacy group has tested to allow Methyl B12 to be used transdermally. Guess what....the base of the cream is oil based with an emulsifier agent to allow those substances with large molecular weight (B-12) to be given transdermally. Sound familiar?

    I use a 12.5 mg per ml solution for my injections and I inject 1ml per day. The way it is calculated ....If I change to the transdermal oil/cream, it will take more than 2-3 squirts per day to give me my injection dose. Gary---this may be why you need more than one squirt per day.

    My pharmacist said it would be easier to mix this solution in low light etc. We did not talk about an adeno B12 and Methyl mix like the Australian company is offering but the method of how the product is made sounds very similar. This was news to me so I thought I would share.
     
  20. garyfritz

    garyfritz Senior Member

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    12.5mg/day is a LOT, injected. Do you do IM or SC? All in one shot? I wonder how much you're actually able to assimilate before it dissipates.

    Interesting that your compounding pharmacy has an oil product! I have a lot of loyalty to the B12oils company because of the fabulous help Greg has given me (and others), but it's good to know there's another source in case Greg's company goes under. Or it might work well to use both of them, to hopefully combine the best benefits of both. Did they say what it costs per dose, and how much mB12 per dose?
     

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