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Active B12 Protocol Basics

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, May 8, 2011.

  1. Freddd

    Freddd Senior Member

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    I do know of a number of people who ended up in the ER becasue of hypokalemia induced by starting cell formation. For me it appears to be a speed of transfer of potassium to serum, at least in part, and that I get symptoms starting at about 4.3 for serum potassium. One woman I corresponded with extensively entered the ER in bad shape. Her potassium was 4.3. She kept getting worse and they kept testing her. About 3 hours after her arrival she was down to 3.5 on the serum potassium and they finally took corrective measures. Hypokalemia is a genuinely dangerous possibility for almost everybody that has substantial healing startup or cell formation of any kind. Growing muscles is very demanding on nutrients. Restoring muscle appears to be about 8 compartments into the process. If CyCbl or HyCbl are sufficiently effective for a person, well that was how it was found that CyCbl can start red cell production at a faster rate and cause hypokalemia just as refeeding syndrome from starvation causes hypokalemia and half of those people died from refeeding syndrome hypokalemia at the end of WW2. This hypokalemia from refeeding syndrome is genuinely dangerous. 200 mcg - 2000 mcg or so of methylfolate is the most miserable dose for many people . It causes massive amount of deficiency symptoms in the majority of compartments without enough even for the the compartments that are having healing. That's why it is paradoxical folate deficiency and at the same time it also causes enough healing for hypokalemia at the same time.

    BE safe.Be healthy. And I am recovering from the induced copper deficiency I had severely in the process of finishing with all the methylfolate deficiency symptoms.Yup, the usually mythical last symptom is gone which for most of my life until a few months ago was an MCV of 99.8 or so. It's normal now by anybody's ranges including that of 50 years ago.

    The 400 mcg was based as a safety measure to protect against induced methyltrap by not taking B12 and thereby inducing subacute combined degeneration. It had zero to do with how much methylfolate (human active folate) is actually needed which has not been established to this day. Itr can't be established with folic acid becasue it works so poorly for most people and isn't consistent. Further, where MeCbl is required in a cell, CyCbl, HyCbl and AdoCbl can all cause methyltrap in that one cell. There are all sorts of little things like that. The clues go back 12 years. When some of us were doing trials with AdoCbl several of us each experiences a mood change (Jekyll to Hyde mood/personality changes, so to speak) it was with methyltrap.
     
    Last edited: Dec 23, 2017
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  2. PinkPanda

    PinkPanda Senior Member

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    I was talking about the RDA (recommended daily allowance) of folate, which is set at 400µg for people older than 19 (reference).
    As far is I know, daily requirements are calculated by looking at how much folate healthy people get from their diet every day.
    (reference)

    Also, the daily requirements are unrelated to folic acid intake. Foods are not fortified with folic acid in germany and the DGE (Deutsche Gesellschaft für Ernährung/ German Association for Nutrition) sets daily requirements at 300µg for people older than 19 (reference).


    'By starting cell formation' seems to me like an optimistic interpretation of why methylation supplements induce potassium deficiency. Some more pessimistic options would be lowered aldosterone, leading to loss of potassium and sodium, or reduction in ATP or phosphorus causing less potassium transport into the cells via ATPases. One way or another, it doesn't seem like we have proof for any of these theories at the moment.
     
  3. Tizzi

    Tizzi

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    @garyfritz Thanks for your advice. I'm on sublinguals at the moment. I can't complain so far but it's only just been over 3 weeks for me. I can see how one would prefer a topical product if there is greater absorption. I will keep them in mind for the future.

    I fortunately have no fillings at all and the only exposure to mercury I ever get is from eating tuna ;)
     
  4. Tizzi

    Tizzi

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    @Freddd

    When I first started this 3 weeks ago I started straight away with the 5mg of MeB12. I figured it wouldn't kill me and I was well stocked with Potassium in case I got hypokalemia symptoms. I had already trialled 1mg some months back so I felt reasonably confident. I hadn't added the AdB12 at that point and my methylfolate was 1mg a day. I can't say I experienced much. I got a rather severe headache and a sort of achy feeling in my arms and hands. Both disappeared after 3 days. I noticed that the 3 smallest fingers in my hands stopped feeling at odd times during the day and night and my sleep seemed to become a bit more refreshing.

    Encouraged, I decided to try AdB12. The response to this was immediate. My cognitive functioning, especially memory and attention had been on the decline for the past decade and I got my sharpness back overnight. Brain fog that was so dense that I was not even noticing it lifted within half an hour of the sublingual. I enjoyed this so much that I took the AdB12 the next day again instead of the MeB12 even though I had originally planned to stick to a weekly dosage. As expected I didn't get as much of a lift but there was some.

    A couple of days into this I decided to start taking both MeB12 and AdB12 on a daily basis. I haven't noticed much change beyond needing significantly less sleep and feeling noticeably happier and more motivated. What used to take me a week to do I can now do in a matter of hours. A few days ago I noticed some angular chelitis. I figured this was either low B9 or B2. My urine colour made me suspect it was more likely to be B9. This is when I increased the methylfolate to 3mg temporarily to try and stop the angular chelitis. It did in fact stop right in its track and clear up completely in 2 days. However, this was also when I started getting very clear symptoms of hypokalemia. I started taking one potassium tablet at a time until the racing heart and jittery feelings subsided. With the angular chelitis I decided to go back to 2mg of methyfolate until I figured out what the next step would be. I am not getting hypokalemia at this dose. An interesting thing that happened on this higher dose of B9 is that my urine colour suddenly became rather clear so I'm guessing I'm running out of B2 as well now. I've upped my multivit dose and that seems to be better.

    I'm now trying to figure what to do next.

    Thanks
    Tizzi
     
  5. Freddd

    Freddd Senior Member

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    Hi PinkPanda,

    The history of setting 400 mcg as RDA goes back historically to be low enough dose because the person to hopefully not cause neurological damage by correcting blood problems without fixing the neurological problems and causing worse. It has nothing to do with actually needed amounts of folate. That can't be determined with folic acid at all. The channel amount is estimated to be 800 -1000mcg for conversion to methylfolate, for 50% of population. Then there is 30% that can convert some but less than 800 mcg. The remaining 20% can't convert any folic acid to active methylfolate. I have never read the history of how RDA type numbers in Germany were set. You are fortunate so far that they are not putting folic acid in white flour. I can't eat white bread or flour or pasta etc. Eating a single piece of bread won't do anything noticeable likely, but day after day it adds up. 70 mcg a day in Soy milk was enough to cause visible lesions on my skin in a few weeks. Unconverted folic acid accumulates according to various studies. That effect on ;lesions can be felt and seen changing either worse or better starting in hours.
    I for instance had any number of symptoms that respond quite well.

    RDA isn't an optimum vitamin amount. It is considered to be the amount needed to prevent gross deficiency deficiency disease in most people. Even "ranges" from tests may just represent purely statistical values, not any relationship to effectiveness. 60 mg of C might very well prevent scurvy in most people. But a dentist I knew could tell the difference between those taking B-vitamins and C. For me, at 2000mg a day a resistant urinary infection was inactivated and eventually died off. At 14 grams a day, my swollen glands for decades went down and almost no strep infections after half a dozen a year for decades. Optimum amounts and combinations are quite individual. I had neurological damage at serum levels of Cu estimated at 90, while my lab calls 72 as lower limit and other ;labs call 90 as a low limit. I started copper based on symptoms and in 4 hours knew it is working. That is the thing about MeCbl, AdoCbl, L-methylfolate, and L-carnitine (fumarate or form currently working well for your body currently, subject to change). and other things that become deficient in the course of healing usually have pretty quick results. Of a dozen or more different items, on many hundreds of occasions, gone deficient, when I supplement them, I know in hours if it is reacting, and if more healing started then more hypokalemia will show up on the 3rd or 4th day any time more tissues start healing. The thing is that only the main cell formation impediment to healing which is "on top" has an immediate response and then the next set of symptoms (potassium often) pops up. The problem is my copper deficiency wasn't recognized by anybody until it got terrible and then I recognized it, just as I lost half my teeth before I corrected the copper and in 2 weeks my gums stopped being damaged and the wrong color.

    In any case, it is so very rarely a single symptom. It's groups of symptoms, patterns of symptoms, and TIMING, and having having all other needed nutrients in place, then the chances that is is anything else other than the targeted deficiency.

    There are reasons for things being done in a specific way. One starts with the broadest affecting items. So the 4 nutrients work together for making cells. The form a 4 way deadlock on cell formation. Removal of any one of the items could break the methylation-ATP cycle. Methylation depends on ATP and ATP is dependent upon methylation. Breaking either breaks the cycle.and they eventually all cause a set of symptoms out of a universe of several hundred symptoms affecting every part of the body.

    We all are playing "you bet your life". I would have been dead 13 years ago (age 56) if I hadn't been winning my game of "you bet your life" for the previous year (MeCbl and AdCbl). I still had a LOT to learn about folate.

    So the 4 way deadlock might cause 200 (high detail) symptoms. Other vitamins can deadlock those 4 also, low enough levels of vitamin D and others can do that. On the other hand Copper, or boron, or manganese, or molybdenum and other trace minerals can be deficient together as they are not usually dependent upon each other. So Cu causes about a dozen of those same deficiency symptoms as the deadlock quartet and hence are usually
    invisible until the folate/b12 deficiencies are cleaned up. Same with boron. Cu increased my potassium need by 300 mg day, Boron by 150mg. Manganese and Molybdenum together another 150 mg.

    This most recent CBC test is the most "mid-range" I've ever had. Folate fixed some of it. It's not as easy to klink things than can't be directly perceived. Good luck.
     
  6. PinkPanda

    PinkPanda Senior Member

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    Do you have any references on that? Because as I understand it, they are mainly looking at intake of natural folate from foods. They look at how much folate from foods (5-MTHF, 10-formyl-THF, 5,10-Methylene-THF,..) a healthy person eats daily, so this calculation would be completely unrelated to supplements, they only say 'healthy people eat 400µg of folate from foods a day'.

    I know RDA values aren't the optimum and there can be individual differences, but I still find it helpful to orient myself by them, when taking supplements. I like being a safe bit above the RDA with my supplements. And the supplements you are taking are always on top of the nutrients you already get from your foods, so these amounts add together for your daily intake, too.


    On the whole copper issue, I am glad you had some improvements with copper, but I really don't have much appreciation for supplementing copper, especially high-dose, in MECFS.

    Copper bioavailiblity and binding are very complex and depend on adrenal and liver function, and in small amounts on glutathione.
    The chance of having copper binding impacted to some degree in MECFS is, in my opinion, rather high, as most people with MECFS don't have completely optimal liver, adrenal function or antioxidant status. Then giving copper, which can have toxic effects, will further worsen antioxidant levels, for example when copper binds to glutathione.

    I would rather look into improving copper binding/bioavailability than to supplement copper in MECFS. Also, taking high-dose methylation supplements might additionally constantly lower copper.
     
  7. Journeyman

    Journeyman Senior Member

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    In a recent full blood count (Australia) I was suprised to see my MCV levels near the upper end of the range and RBC count right on the borderline of deficiency. Suprised because although I hadn't supplemented any B12 for about 9 months beforehand, I understand that B12 levels once established (from a fairly extensive history of Methyl/Ado B12 supplementation in 2013, and 2016 ) tend to decrease very slowly what with much B12 being stored in the liver. and as far as I can tell I don't have any SNP's that would cause an unusually rapid decline in my b12 levels (see signature block) ??

    I recalled having read Fredd's detailed posts on B12 some year or two earlier that overcoming a deep b-12 deficiency (or unique type of deficiency) involved saturating the CNS in very high doses of injectable B-12 (quoted above in bold). So I quickly got a few ampoules of Hydroxy B12 and the sharps needed for intramuscular injection (no mean feat in this nanny state we live in (Australia) where I could only source sharps/syringes from a trusted chemist I've known for over 10 years!

    My question is, why is hydroxy-b12 considered useless when I seem to recall that so long as you didn't have unusual SNP's (Do I?) then hydroxy-b12 gets absorbed and can be used for whatever level of healing is required (neurological etc.)?

    Secondly, how can I know confidently whether I have a need for the deep neurological healing where apparently only high/frequent doses of MeB12/AdoB12 are useful? Do I need to get a lumbar puncture to get my CSF MMA etc. measured? Surely theres more practical / less risky ways?

    Thirdly, if its possible that I need a heavy saturation dose of injectable B12 for my CSF, has anyone been able to arrange the special lighting conditions necessary for the safe delivery of MeB12 injection (' a deep red orthochromatic film' and if so was it incredibly hard to achieve and expensive? possible in Australia given aforementioned issues?

    Fourthly, why is there no commentary on transdermal b12 in this 'gold standard' document that we all live by. Did it only come into existence after 2011 when the last revision was made? Is Transdermal B12 as good or better than sublingual (was the impression I formed about a year ago)

    Finally, does anyone have a working link for the 'wrongdiagnosis' forum links that Fredd originally posted. I'm getting 404..

    Regards

    Journeyman.
     
  8. Tizzi

    Tizzi

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    @Freddd or anyone who might be able to help.

    I am approaching two months on the active protocol and I am starting to feel the physical fatigue and the waking up tired creeping back. It's not extreme and I could probably push past it were it not for the fear of making it worse. I've been here before and it would mean a day or two of sleep per week and being unable to interact with anyone on those days. I am trying to pace myself for the sake of my family.

    Supplement wise I'm at a standstill. I keep getting symptoms of hypokalemia and/or low B9 or even B2. I'm taking potassium as needed and there have been days where I took 1600mg potassium gluconate in divided doses. The uncomfortable heart fluttering stops within minutes but will recur later during the day. Does that mean that I need to further increase the Potassium? I've tried decreasing the MeB12 but it doesn't seem to do anything about the potassium need. I've also upped my B Complex to twice a day. It shows in my urine but I can't feel anything other than that. I have also tried increasing methyfolate but apart from getting rid of my angular chelitis it seems to only increase further my need of potassium.

    So basically I have a few questions.

    How much potassium should I be taking? I'm afraid of over shooting the mark and ending up with hyperkalaemia, though surely the fact that taking potassium is still temporarily relieving my symptoms must mean that i'm still borderline hypokalaemic.

    Does it make sense to lower the MeB12 and AdB12 or at least stick to the current dosage until I sort out the potassium issue? What about metylfolate? Should I lower that a bit as well?

    I've been reading the B2- I love you thread. I'm only about 10 pages in so still plenty to read but would I benefit from adding some extra B2?

    Thankfully my brain fog is still gone so far. I would appreciate any help while I can still think!

    Thanks <3
     
  9. CCC

    CCC Senior Member

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    Hey Tizzi, I'm not an expert by any means, so I'm flagging @ahmo and @caledonia in the hope they have more insight.

    How much B12 are you taking? Have you found that list of symptoms Freddd posted to give you some insight into what is happening? I've had a look, but can't find it. It's somewhere in this megathread: http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story

    Also, some people find that two-a-day on the multi-B is too much. Freddd found that too much b1 and b2 put his system into overdrive, whereas others need tons of B2.

     
  10. caledonia

    caledonia

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    @Tizzi I took something like 3000mg of potassium gluconate (divided into 4 doses) per day for years. Now I only need 50mg.

    I was/am taking way less B vitamins than you.

    Healthy people need something like 3000-5000mg potassium per day and are able to get if from food. We can't do that for some reason, and so need to supplement. So 1600mg is not necessarily that much.

    The methylation cycle, once stimulated, will keep cranking for days, weeks or even months after stopping all inputs. You can put the brakes on by using the nicotinic form of niacin. This is something you should have on hand before starting the protocol.

    Look in my signature link for a couple of summaries of Freddd's protocol.

    I also have a document called Roadblocks to Successful Methylation Treatment that may be helpful.
     
  11. Eastman

    Eastman Senior Member

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    @Tizzi

    In your introductory thread, I posted links to two threads, one of which is Consider this before you go down the MTHFR self-treatment rabbit hole. In the latter thread, I had a post that provided several links to other members' posts describing problems they had after taking B12. One of the latter posts is this, where another member described a problem with heart palpitations and needing to take large amounts of potassium, as well as what finally gave some relief.
     
  12. Tizzi

    Tizzi

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    Thanks guys. I'm reading all the links provided with great interest.

    I've increased further the potassium and I do feel somewhat better though the sleepiness and sugar cravings are pretty intense atm.

    @caledonia. I do have niacin on hand but I don't think I'm actually overmethylated. I'm not sure how that would feel like to be honest. I think my main issue right now is hypokalemia and I'm still trying to figure out the sugar cravings. Maybe low vanadium? I'm taking both chromium and magnesium so I doubt it's that....
     
  13. caledonia

    caledonia

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    The idea would be to take niacin to slow down methyation so the hypokalemia will also slow down or stop.
     
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  14. Tizzi

    Tizzi

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    Got you. Thanks. I'll keep it handy should it become too much to handle.
     
  15. ahmo

    ahmo Senior Member

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    Very likely. I need A LOT of K+ during the whole time I was titrating up B12 and folate. I've not used any for 2-3 years.

    When I need a lot, I was also doing regular footbaths for detox. So I began adding the K+ to the footbaths. Worked great, no need to drink such a lot. (I've another blog on my footbaths.)

    I don't think so. You're trying to get up to theraputic levels.

    I wrote a blog on FMN, which is activated B2. It helped me a lot. I use very small amounts of the other B'2. I found the best formulation for me is Swanson's, which I then divide into 2 and take one early AM, the other midday.
    https://www.swansonvitamins.com/swanson-ultra-activated-b-complex-high-bioavailability-60-veg-caps

    Things became a lot more comfortable for me when I was on the right doses of all these things, including an end to the insomnia (thank you B12!!!) Most of the unpleasant symptoms were relieved. What I'm left with is very low energy, and some brain fog. Far better than when I began. good luck, sounds like you're on the path.
     
  16. Eastman

    Eastman Senior Member

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    @ahmo

    Have you tried taking high-dose B1? Some of us on the methylation protocol found increased need for B1 after a while. See this post and the links in there.
     
  17. Tizzi

    Tizzi

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    A couple of days ago I had a thought that rather than just hypokalemia I might be experiencing a degree of hyperthyroidism. I didn't take yesterday's levothyroxine and today I only took half dose. I seem to be better. I'll be getting my bloods checked just in case but I seem to have hit the nail on its head.
     
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  18. CCC

    CCC Senior Member

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    @ahmo is the queen of footbaths. It's worth reading through here stuff. She certainly changed our life here.
     
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  19. Tizzi

    Tizzi

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    Small update.

    Still hanging on with the protocol. My hypokalemia is thankfully undercontrol and has been so for about a week. I'm taking about 3g of potassium a day in a combination of 550mg potassium gluconate tablets and low salt on an as needed basis.

    A couple of days ago I started a daily 2mg tablet of copper as I was starting to get very brittle nails and my multi is rather high in zinc. Both my mother and aunt test very high in ferratin though I haven't been tested personally.

    I am now trying to increase the methylfolate as I still have a flare up of acne.

    I am all the time very, very hungry and have put on about 10lbs over the past 2 months. I hope this stops soon as I was overweight to start with.

    I have also as of today started L-carnitine. I expected my potassium need to increase but so far so good.

    Energy and motivation wise I am doing reasonably well. I hope I stay this stable as I am finally after a hiatus of nearly 5 years going back to a part time job. It's 4 hours a day five times a week on a flexitime basis so hopefully I'll be okay. It was the least I could negotiate and still get offered a job. Wish me luck! xxx
     
  20. ahmo

    ahmo Senior Member

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