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B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. penny

    penny Senior Member

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    I'm not sure if I have, you wouldn't have a link to it or know roughly where it is in this thread would you?

    The muscle pain I get is much like what I struggle with regularly, it just seems to rapidly increase when adding the b12/folate. It feels like my muscles (mostly but not exclusively top of forearms into hands & fingers, side of upper arm, top of thigh and lower leg into foot) are shortening/tightening, like a rubber band being wound up on a toy plane. I already take oral magnesium (about 600mg), usually take an epsom salt bath and sometimes take a muscle relaxer (baclofen) to try and deal with my 'normal' level of pain/tension.
     
  2. Freddd

    Freddd Senior Member

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    Hi Penny,

    That is one usual type of pain from mb12, adb12 and methylfolate deficiencies. Taking mb12 increases nerve functioning to a degree and causes you to FEEL it more, not for it to be worse. It takes some months of constant mb12 to actually cause healing in the nerves. The muscles themselves are probably damaged and also need to heal. I had those tight feeling sensations also. Many do. If you want to heal it increase the amount of mb12, adb12 and Metafolin, all the basics and check out the critical cofactors to see if any INCREASE that feeling even more or anything else. After 3 days or so you are likely to start having the potassium getting lower and then other things may occur but they will respond to potassium. The muscles and nerves can heal over months to a year or more. Stretching, massage and exercise will all aid the process. Have you had muscle atrophy yet in the affected muscles? I used to have to take Dilantin and Valium to control the spasms and stuff. I was able to start tapering after 9 or 10 months.
     
  3. topaz

    topaz Senior Member

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    Penny

    I was about to suggest magnesium as that can remedy muscle cramps as it is a muscle relaxant but I see that you already take this. Check the form of magnesium as magnesium oxide is often used and that is not very bioavailable. the Epsom Salt baths are a good idea as magnesium is readily absorbed transdermally. Magnesium oil is also available for this purpose but I have not personally tried this. You could try doubling the dose of magnesium to about 500mg morning and night.
     
  4. Sasha

    Sasha Fine, thank you

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    Thanks, Freddd - very much appreciated. After I posted I started to get a few muscle twinges and not-quite palpitations (but the feeling I get in my throat that usually precedes them) and I felt much better after 500mg of potassium (and by 30 minutes, as you said).

    I had been taking 300mg of potassium daily - maybe I should be taking more like 500mg.
     
  5. penny

    penny Senior Member

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    In your experience did the pain keep increasing until the healing started (9-10 months)? Or was the increase in pain more temporary, or did the level plateau earlier?

    I'll try increasing my dosages. I suppose I should titrate rather than rapidly increasing, though the later is tempting b/c it seems like it'd give quicker results.

    Hard to tell, my muscles are definitely weaker (from lack of use/exercise) and generally weak (from lack of energy) but I don't 'look' substantially different at a quick glance. I do have some parasthesia, and when I've pushed beyond my energy envelope have difficulty moving my muscles and feel my feet and hands 'curl' a bit. A lot of my muscular symptoms do resemble mild versions of my step-father's (he has a diagnosis of Primary Lateral Sclerosis, similar to ALS without the muscle wasting), so a neurological cause wouldn't surprise me. Considering all this, I am still fairly functional, i.e., I work,though with difficulty and do nothing else.
     
  6. penny

    penny Senior Member

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    Thanks topaz, I think I will try to increase my dosage. I had stopped increasing b/c I was taking magnesium glycinate and 600mg was pushing it for bowel tolerance, but I switched to magnesium malate and it seems to be less problematic. And I do have some of the oil, I usually only use it when I can't take a bath - it stings a bit, so not something I look forward to!
     
  7. Freddd

    Freddd Senior Member

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    Hi Penny,

    In your experience did the pain keep increasing until the healing started (9-10 months)? Or was the increase in pain more temporary, or did the level plateau earlier?

    Plateaued very quickly and then slowly, imperceptibly slowly so that only monthly comparisons made a difference, decreased.

    Hard to tell, my muscles are definitely weaker (from lack of use/exercise) and generally weak (from lack of energy) but I don't 'look' substantially different at a quick glance.


    I couldn't tell by looking because I had soft fluid filled tissue taking the space. If I did a leg lift however (on my back) my thigh muscle was no bigger than my thumb in thickness at the top. In all my other muscles it was less visible. But now that they are back the difference is really noticeable. I have visible muscle definition like nothing in the last 30 years.
     
  8. penny

    penny Senior Member

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    Awesome! I think I can handle that :) It was the prospect of it continuing to increase over weeks and months that had me worried.

    Thanks for all the help, now I guess I just need to be patient, vigilant, and see what happens.
     
  9. curecfs

    curecfs

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    Hello everyone,

    It's been 10 days for me on the protocol, and was wondering if anyone could "critique" my routine. I started off quickly (patience is not one of my virtues). The 1st week the B12 Infusion was left out (just took 1 Jarrow MB12). Also, I just got the Pure Encapsulations B-Complex, because I had to order that separately, so I haven't been taking that yet.

    Here's my routine:
    * Wake up, take my morning RXs (Hydrocodone 10/325mg and Pristiq an SNRI, 50mg).
    * Take sublinguals: 1 B12 Infusion, 1 Jarrow MB12, 1 Dibencozide, 1 P5P (I let them all completely dissolve)
    * Eat breakfast/snack (try to remember to take digestive enzymes & HCL with food)
    * Take "morning" supplements (around noon): 1 Folate (Metafolin) 800 mcg, 1 Probiotic, Chewable D-Ribose ~1g, 1 Fish Oil, 1 Magnesium 300mg, 1 Gamma-E Complex, 1 AdvanC 1000mg, 1 IronSorb 18mg, 1 Zinc 50mg, 1 Iodine+2 12.5mg, 1 Vit D3 4000IU, 1 ADRENergize (glandular extract) for adrenal fatigue, 1 Selenium 200mcg
    * Take "evening" supplements (around 10pm): 1 Potassium 600mg, 1 Citrical (Calcium 250mg), 1 SAM-E 200mg, 1 Lecithin 1200mg, 1 GTF Chromium 200mcg, 1 ALA 600mg, 1 L-Carnitine Fumarate 500mg, 1 TMG 750mg, 1 Turmeric 600mg (for general inflammation)
    * Take my Ambien CR & Klonopin 1mg before bed.

    I have not noticed any change in my energy level positive or negative. Initially I didn't think I had any side effects, but I just realized that the past week I have felt physically hotter, with indoor temp the same. Normally my body temp is around 97.5. I took my temp tonight and it's around 99, but I don't believe I'm sick, because it sorta feels like a "fibro-flare". I did do some weights with my legs at the gym on Tuesday, and I've been so sore that walking has been difficult (I think the trainer didn't quite understand I needed to start easier), so maybe that is cause for the inflammation feeling/temp increase. I'm not sure.

    So, that's it so far, if anyone has any input on how I might tweak this let me know!

    Edit: I forgot to add that after the sublinguals, I am taking 4 of Dr. Yasko's liquid RNA formulas that were free because I got the Nutrigenomics testing. They are ACAT+, BHMT 1,2,4+, BHMT 8+, and MTRR 11+. I have more SNPs, but picked these as I thought they were more important.
     
  10. richvank

    richvank Senior Member

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    Hi, cure.

    I didn't see any Metafolin or FolaPro or MethylMate B or Deplin or 5-MTHF in your regimen. Do you take any of those? If not, I think you should consider adding it. The essence of the methyation treatments is the combination of high-dose B12 with folate, because the partially blocked enzyme is methionine synthase, and it needs both methylB12 and methyl folate.

    Best regards,

    Rich
     
  11. curecfs

    curecfs

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    Hi Rich, I forgot and left that out by accident...yes I am taking 1 Folate (Metafolin) 800 mcg with the morning supplement group.

     
  12. Freddd

    Freddd Senior Member

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    Hi Curecfs,

    Take sublinguals: 1 B12 Infusion, 1 Jarrow MB12, 1 Dibencozide, 1 P5P (I let them all completely dissolve)


    How long is that and WHERE? Are they in direct tissue contact for 45-120 minutes. You might do better one at a time for 2 hours each at various times during the day.

    The l-carnitine fumarate, TMG and SAM-e both should be taken on an empty stomach (2 hours after or 30 minutes before food). Also, you probably should try at least 3 different brands as some persons are brand sensitive to one or more of these.

    1 Gamma-E Complex, 1 AdvanC 1000mg, 1 IronSorb 18mg

    The iron sup needs to be taken 8-12 hours separate from the Vit E or it can entirely block the absorption of the E. Experimentally vit e deficiency can be induced via iron supplements 3x per day.


    I have felt physically hotter, with indoor temp the same.
    .. Normally my body temp is around 97.5. I took my temp tonight and it's around 99, but I don't believe I'm sick

    Many people feel HOT with these supplements. They really can produce more energy. It takes a while for the body to down regulate some. In 8 years however, I still have to sleep with at most a sheet over me most of the year now. Feeling and being cold is a well known b12 deficiency symptom.


    I did do some weights with my legs at the gym on Tuesday, and I've been so sore that walking has been difficult (I think the trainer didn't quite understand I needed to start easier), so maybe that is cause for the inflammation feeling/temp increase.

    If the exercise doesn't cause a crash that is a plus. Most people have to start low and slow. I had to start the exercises with no weights before I could move up to 1 pound each hand, and up from there. I also started with 1 rep and worked up to 30 before increasing weight and then decreased to 5 reps and working up 1 a day. I started aerobic at 1 minute ion the Nordic Track with no tension on the brake mechanism and working up just as slowly. The exercise you are doing likely won't cause the temp increase but will cause pain. It will also promote mitochondria formation and muscle formation.

    You might benefit from titrating your Metafolin. That might make all the difference in the world. Also, you might have whey hiding in food, folic acid in all sorts of foods from cereals to "boost" drinks etc. These can completely counteract the Metafolin if you are susceptible to paradoxical folate deficiency. With the 10:1 rate 80mcg of folic acid eaten without competing Metafolin could counteract 800mcg for 24 hours. I have to take 1600mcg of Metafolin with each meal as well as 1600-2400mcg 3 other times per day to get barely enough Metafolin to reverse folate deficiency from vegetable food source folates. Right now we have no idea what your situation is.

    One fish oil capsule is very little. Various sources suggest 2000mg of active omega3 components a day is what is needed. There are some double concentrated brands of which you would need 3 as compared to the 6 per day otherwise.

    Good luck.
     
  13. curecfs

    curecfs

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    Thank you very much! All the best to you, Freddd for helping everyone.
     
  14. aprilk1869

    aprilk1869 Senior Member

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    Iron and vitamin e

    Apparently it's only ferrous sulphate that interferes with vit E. Organic iron such as ferrous gluconate or fumarate isn't a problem. Although I'm struggling to find anything on Google Scholar to support this.

     
  15. Sasha

    Sasha Fine, thank you

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    When/how to start the show-stoppers

    I've been doing the initial stages of the protocol for four weeks now - the basic co-factors for a couple of weeks and then I've worked up to 3mg of ab12 and 7.5mg of mb12 daily.

    I'm still getting start-up symptoms, particularly when I take the later doses of mb12 in the day (slight headache, numb lips, weird face sensation) and maybe a new one in the last few days (burning pain in the muscles that overlay my coccyx, which I have never injured).

    So far, I haven't added in any of the "show stopper co-factors" that Freddd lists, namely SAM-e, TMG, L-carnitine, alpha lipoic acid and D-ribose.

    Three questions:

    1. Should I be starting to add these show-stoppers in now? Or should I get my dose of b12s to a certain level (what level?) before I start?

    2. If I should be adding the co-factors now, how do I do it? Do I hold the dose of b12s stable while I do it? Do I add them in one at a time? A few days apart? Any titration? What am I looking for? OK, that's fifty questions but I'm hoping there's an old post someone can point me at!

    3. Do I need to get certain brands of the co-factors or be aware of certain issues when I'm choosing which to buy?

    Thanks again, Freddd, and to everyone who has been answering my questions as I go through this process. I can't believe what a step-change I've seen in my energy so far. Just being able to spend a little bit more time outside the flat than usual is a huge gain for me.
     
  16. Freddd

    Freddd Senior Member

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    Hi Sasha,

    I'm still getting start-up symptoms, particularly when I take the later doses of mb12 in the day (slight headache, numb lips, weird face sensation) and maybe a new one in the last few days (burning pain in the muscles that overlay my coccyx, which I have never injured).


    The strategy I used, which worked, was to try to maximize these kinds, "slight headache, numb lips, weird face sensation" of startup symptoms. The "burning pain in the muscles that overlay my coccyx" could be several things. It could be neurological or it could be the muscles themselves. There could be a disk problem pressing on nerves or some other physical impingement on a nerve. There could be nerve damage from demyelination. Do you have any other neuropathic symptoms of any kind elsewhere in your body? It could be feeling returning to the nerves there. Intense pain can be an early indicator that the nerve is healing and carrying a signal again. More mb12 will generally get through that faster as long as the other needed cofactors are present.


    1. Should I be starting to add these show-stoppers in now? Or should I get my dose of b12s to a certain level (what level?) before I start?


    My opinion on this is that the showstoppers need to be started sooner rather than later. They can produce far more effect with the amount of adb12/mb12 that you are taking than merely increasing the amount of b12s. If one or more of them are severely lacking more b12 might not do a thing. For me the most powerful and longest lasting startup effects after mb12 itself was l-carnitine fumarate. They are in two moderately separate chains. There are the cofactors for adb12; l-carnitine fumarate (transports fats to the mitochondria), alpha lipoic acid (aids the carnitine) and D-ribose (helps recycle ATP). For mb12; SAM-e increases methylation a lot more than mb12 or methylfolate, TMG supplies methyl units and moderates the "overshoot" of the l-carnitine fumarate (I don't know why). I would suggest adding either the SAM-e and then a week or so later the l-carnitine fumarate and alpha lipoic acid or the other way around. Then add the TMG and then the D-ribose after things have settled down. If you add both sets at the same time you don't know which one did what. As is often the case, the last item added can often kick things off. Then my experience was that I had to experiment with various dosages to find the best balance and this needed to be done a couple of times after each significant increase of mb12. After all this settles in you may find that more adb12 makes no difference at all and that maybe even 1 dose a week maintains equilibrium. After everything is settled down and equilibrium is reached on mb12 where more makes no difference and same for adb12, it's time to try the 50mg challenge dose of each on different days to see if there is an additional CNS effect. Since this is so subtle compared to body startup, all that has to be out of the way first or it is masked.

    Do I need to get certain brands of the co-factors or be aware of certain issues when I'm choosing which to buy?

    On these cofactors some people have noted differences by brand but it doesn't appear consistent like the mb12 differences. SAM-e is likely the one that will show the most brand difference. I use Nature Made. I have tried several brands and that worked the best for unknown reasons. Jarrow probably came in #2 with a just noticeable difference. The differences were not day and night as with the mb12. I suspect that it is a matter of slightly different forms or maybe just the difference in effectiveness of the enteric coating for my chemistry.

    I use the the NOW or Jarrow TMG and find no difference and the Jarrow L-carnitine fumarate, available in several sizes making titration easy.
     
  17. Sasha

    Sasha Fine, thank you

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    Hi Freddd - that's useful to know to try to maximise those symptoms - they are all tolerable. I've had some weird symptoms in my spinal muscles which had sudden onset about a year ago - they were eventually diagnosed as being due to the muscles having wasted due to my immobility, to the extent that the muscles were trying to spasm but no longer able to correctly signal pain but instead only able to signal stretch or pulsing. I'm not sure if that would be considered neuropathy. For the last six months I've also had another weird symptom of sort of low-level burning discomfort down my spine in certain positions. The pain overlying my coccyx is so low down that it must be where the bones are fused so I don't think it could be a disc (unless it's referred pain from a disc higher up).

    Thanks very much about the info about how to introduce the new co-factors and what to get - I've managed to order it all from UK suppliers again, fortunately, so hope to receive it in a couple of days.

    I'm up to 800mg potassium/day now - a bit surprised I seem to need so much but then on the packet it recommends 500mg/day, presumably for "normal" people with no sign of a deficiency.
     
  18. L'engle

    L'engle moogle

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    I'm looking at co-factors, too. I take TMG, since it was not expensive to add in. I'm taking 40-45mg Methyl12 a day plus 1-2 AOR B complexes (which I get a bit queasy from), zinc, vitamin c (hard to tell how much because of possibly inferior brands), Alta magnesium chloride ( 1 tablet) and usually 1500 or so mg of potassium. Also Ascente Fish oil, adding up to 3000mg.

    I tried taking the Adb12 several times, but didn't have any reaction to it at all that I could tell, even taking 9000mg, and pre-loading with metafolin.

    So based on this, I would imagine that SAM-e might be a better co-factor to add than l-carnitine fumarate, given I'm working mainly or Methyl b12 at the moment.
     
  19. SilverRose88

    SilverRose88

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    hi all,

    sorry i'm too exhausted to read most of the posts on here, but wondered if this was normal...

    i was found out to be B12 deficient (my levels were 78) about 3 years ago now, i got treated with the usual 'loading doses' then three months later, one shot of b12, then the lovely Dr Esther Crawley decided it was probably a 'one off' that my levels were that deficient (cough... seeing as I am and was bedbound and nothing else showed up in tests.. of course it was a one off..). Anyway, I became deficient again but my GP at the time would not give me more than one injection every three months. I ended up seeing a Dr in Surrey on the NHS who now prescribes me B12 injections once every other week, it started at once a week for 10 weeks, now it is once every other week for 6 months and then once a month for life, if I find them beneficial. Now that's the point, I've not found them helpful at all, nothing. I suffer with all the typical B12 symptoms too mainly palpitations, severe dizziness, exhaustion. I did try sub b12's for a while but found them to have no effect either. Can't remember what my iron/folate was but I know it was 'normal' when I last had it checked... any advice would be great. Thank you in advance!
     
  20. aprilk1869

    aprilk1869 Senior Member

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    Unfortunately Docs have not got a clue when it comes to B12. When my dad started getting neuropathy his b12 levels came back as 364 which sounds good but is actually really bad. Freddd's protocol was very successful for him and my suggestion to to try it too. You might not have had success with the sublinguals for a variety of reasons - maybe it was the brand, maybe you didn't have it in your mouth for long enough or maybe you need all of the other vitamins and minerals included in the protocol too.

    You can find the info here:
    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics

    With you being in the UK, I suggest you buy Biocare's B-Plex as it doesn't contain folic acid or B12.
     

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