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B-12 - The Hidden Story

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

  1. Freddd

    Freddd Senior Member

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    Hi Lena,

    With all the flap going on I appreciate your support in this. Personally I couldn't wait for another 100 years of the usual pace of this kind research to prove anything. The drug companies research is all towards finding the nex multibillion dollar hit drug, not understanding the basics of a vitamin. When it comes down to it I'm a software developer and consultant who sells to companies. I've made my living solving their problems. This time I solved my problem and that of some others. In doing so I lost faith in the research establishment and their methodologies. I also saw that everybody along the way was comfortable with having my life flushed away as long as they followed accepted protocol so that they were not vulnerable legally speaking. I was rapidly headed towards a wheelchair and nobody had a possible solution except the leading edge of Japanese research.

    This morning I have the mb12 under my upper lip. Is it as effective under the tongue?

    It appears to work at least as well. I find it is good to move the exact locations around so as not to develop irritations.

    I have noticed since being on 1 mb12 that my sleep problems are worse, I require more xanax to get some sleep.

    This is pretty normal as the metabolism and neurology is shifting. It takes a little while for one's system to adjust. When it does sleep usually normalizes. One of the side effects warned about for methylfolate is that it can produce drowsiness at first. Sounds useful here. It restored my sleep to normal dreaming. I used to sleep less than 5 hours of poor sleep. Now I sleep 8 hours of good sleep. Any time you are comfortable with starting it is good. Methylfolate will modify the experience and let your body get to work adjusting. It is often a significant missing factor. I find it sad that the tests are pretty useless in predicting who will respond. They can find somebody seriously low but not predict who will benefit, who has sufficiency. Optimums are different than minimums.

    This morning woke up with some anxiety, not bad but its here (especially after reading some of the other posts, I try to only concentrate on your posts).

    I do understand. Last night I started remembering back to 6 years and before to how fearful I was then. Anxiety is a b12 deficiency symptom. I also think that being repeatedly mistreated by the doctors produces a great deal of fear. It sure did for me. I think that being suspicious of all the treatments of the week is a normal outcome of our for profit system. As the Mothers of Invention album name put it in making fun of some other bands "We Are Only In It for the Money".


    It is hard to measure improvements but looking back to a month ago today I am much improved

    It is hard to see the differences except over time. 1% a day is not noticable as it happens but over a month it sure is.

    With all the treatments I tried in the last 8 years not one doctor, alternative, holistic or practitioner of some kind was totally honest with me, they promoted their treatment or supplements for large sums of money without any proof of anyone ever recovering.

    I went through that too. I disliked it enough that I would never intentionally place anybody in that position. I started keeping track very carefully charting all meds used every day and how I felt. Therte was of course day to day variations. The many practitioners all wanted to claim each tick of improvment but disclaim each downtick. At the end of the month most had made no difference. During those worst years only my chiropractor really made a difference, and then only for certain things with my damaged back and neck. In 3 years he reduced the pain associated with a very out of shape part of my back and certain headaches. I actually gained an inch in height with my back put back into place.

    All I can offer is that I have tread that path of recovery and understand how and why I recovered. I found the flaws in certain research and it's misunderstanding. It has worked for some hundreds others too. Some are well and some uncovered various other problems. On the wrongdiagnosis site it interesting that almost nobody is talking abbout the b12 protocol, they are applying it. All the talk is about the uncovered comorbidities, brainfog that doesn't clear up right away and carbohydrates in diet and other such "side issues". Good luck and good health.
     
  2. Dreambirdie

    Dreambirdie work in progress

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    Hi Freddd--

    I'm on my fourth day of the dibencozide B12, and feel only subtle positive improvements. My brain feels a little brighter, and my mood is happier. I like the subtle aspects, and don't want to rock the boat with metafolin or mB12 for now.
     
  3. dmholmes

    dmholmes Senior Member

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    The B12 thread over there is the mother of all threads, over 1000 pages now.
     
  4. Freddd

    Freddd Senior Member

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    Hi SaraM,

    What brand of methylb12? Did you keep it in place for 45 minutes or more?

    When methylb12 and adb12 are being well absorbed the cobalamin test results will be way off the scale in the high direction. methylfolate can dramatically affect the ability to absorb mb12 and adb12. It can also be the key to starting activity as can several other cofactors. B12 all by itself often doesn't do the trick.
     
  5. Freddd

    Freddd Senior Member

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    Yep, over 10,000 posts and 1,000,000 reads. You can follow somebodies posts from intial story to as long as they stick around. There are a lot of success stories there and some where it didn't work out for various reasons. However, it is a real education.
     
  6. dannybex

    dannybex Senior Member

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    Hi Freddd...some questions...

    Hi Freddd,

    I've been meaning to write for weeks now, and here we are 12 pages later!

    I appreciate your passion in spreading what you've learned about the many different forms of b-12 (and folate) and how they have helped you. I always knew there were different forms out there, but had no idea why one might help or not...so I'm very grateful for your passionate input.

    I do have a few questions and concerns however. :)

    First, I think it's important to point out that many of the deficiency symptoms on your list, can be deficiencies of other nutrients (like vitamin D, calcium, zinc, etc.) and or toxicities (excessive B-6, or mercury, chemical or environmental poisoning).

    Also, while a lot of our doctors probably won't test for many of these things, it's very important if possible to get tests to see if one needs vitamin A, for example, or potassium, or more omega-3's (from fish oil). I say that because my vitamin A levels were found to be a little high (even though a little cod liver oil under the tongue will improve light sensitivity in minutes), and I dump potassium like crazy.

    It might be possible that others on this board, especially those with adrenal exhaustion, may also have high potassium and low sodium levels, and actually need more sodium, and less potassium. ???

    Another puzzlement: if I take more than one fish oil capsule a day, my tinnitus flares big time, and my gums bleed way too easily.

    I guess what I'm trying to say is that we're all different, we all have different imbalances and/or chemical exposures, so some of the supplements that helped you might not be helpful and could be harmful for others.

    Just my two cents Freddd!

    Questions:

    If one's b-12 blood levels are 'high', or above the so-called 'normal range', do you still suggest supplementation?

    Is the "FolaPro" that Rich recommends as good as the Metafolin that you prefer? I have some Folapro in the cupboard...was wondering if you consider it as effective?

    Re Tinnitus: I've had this symptom off and on for 25 years, but have been sick w/CFS for "only" about 12 years. I attribute this in hindsight to mercury poisoning, and am just starting to chelate...but it could be a folic acid/b12 issue as well. It's gotten worse in the last year or so, to the point of where it "pulses" when it's bad. I went to an ENT...he said there's probably a 15% blockage (atherosclerosis).

    Did you have tinnitus, or have you encountered others who did, who were helped by the b12's and folic acid you recommend?

    I also have this annoying muscle twitching in my feet and calves (and in the last year, some numbness) which yes, may be due to b12/folic acid deficiencies, but also vitamin D/calcium...not to mention mercury screwing up the mineral balance.

    Did you have these fasciculations?

    THANKS FREDDD!

    Dan
     
  7. Freddd

    Freddd Senior Member

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    Hi Dan,

    Also, while a lot of our doctors probably won't test for many of these things, it's very important if possible to get tests to see if one needs vitamin A, for example, or potassium, or more omega-3's (from fish oil). I say that because my vitamin A levels were found to be a little high (even though a little cod liver oil under the tongue will improve light sensitivity in minutes), and I dump potassium like crazy.

    Though this wasn't a question I'll comment. First, a balance is needed for each person, "fine tuning" as I have called it. One of the things that happens when a person who is functionally deficient in either b12 or methylfolate is that healing can start suddenly causing deficiencies where previously there was apparant adequacy. If one only takes "deficient" items, that can trigger a start and stop healing having to deal with one deficiency after another as a few to a dozen or more items each becomes deficient in turn. Even starting with all the basics in place prior to mb12 I had very noticable changes when I took mb12, adb12, methylfolate, SAM-e, L-carnitine, increasing Zinc to 65mg, increasing b-complex from once per day to twice per day and D-ribose. With b-complex it isn't so much size of the dose as taking it twice a day because of short serum halflifes and completeness of formulation. Also results are often improved with -more coenzyme vitamin forms like P-5-P and pantethine. Having the necessary balance beteen b-components helps too instead of an arbitrary 50mg for eveything which is not balance.

    Another puzzlement: if I take more than one fish oil capsule a day, my tinnitus flares big time,

    Not sure why that would happen, but omega3s affect nerves and cell wall permiability

    and my gums bleed way too easily.

    Omega3 decrease clotting a little. I suspect that you have other problems with your gums that make them susceptable to bleeding such as lack of C, b-complex, not flossing or gum problems you need to see a dentist about.

    It might be possible that others on this board, especially those with adrenal exhaustion, may also have high potassium and low sodium levels, and actually need more sodium, and less potassium. ???

    The entire adrenal situation can change with adequate b12, methylfolate and b-complex. So a correction made prior to mb12 can be entirely different after mb12. Some of the symtoms interpreted as "adrenal exhaustion" are b12 deficiency symptoms.


    If one's b-12 blood levels are 'high', or above the so-called 'normal range', do you still suggest supplementation?

    There is no test that can demonstrate sufficiency of active b12s. The top of the serum cobalamin range is usually 1100pg/ml. Studies have shown that people have active b12 responsive symptoms at over 1500pg/ml. In one study 63% of the responsive people would have been excluded from b12 studies using serum level as a criteria. Further one can be adequate in adb12 and deficient in mb12 or the other way around. Further one can be deficient in cerebral spinal fluid cobalamion of either or both kinds of b12 and have entirely adequate serum level. The only way to tell if you will respond to mb12 and/or adb12 is to try them in a suitable trial at levels for both the body and the CSF/CNS.

    Is the "FolaPro" that Rich recommends as good as the Metafolin that you prefer? I have some Folapro in the cupboard...was wondering if you consider it as effective?

    Folapro IS Metafolin. Merck, the maker of and owner of Metafolin trademark enforces strict quality standards on all brands of Metafolin. The only differences are prices. As far as I know Folapro is an excellent product. Folapro is $18.25/60 at one reseller and Solgar Metafolin is $15.50/100 at another.

    Re Tinnitus: I've had this symptom off and on for 25 years, but have been sick w/CFS for "only" about 12 years. I attribute this in hindsight to mercury poisoning, and am just starting to chelate...but it could be a folic acid/b12 issue as well. It's gotten worse in the last year or so, to the point of where it "pulses" when it's bad. I went to an ENT...he said there's probably a 15% blockage (atherosclerosis).

    Did you have tinnitus, or have you encountered others who did, who were helped by the b12's and folic acid you recommend?

    I had it very loudly for decades. I still have it to some degree at times but mostly not noticable. It is a common b12 deficiency symptom but that is not the only cause. There are half a dozen nutritional deficiencies that can contribute as well as other causes. Most of the symptoms of b12 and folate deficiencies are not specific. They have many different possible causes and often several at the same time. However, whereas 5 nonspecific symptoms are non specific, 150 non specific symptoms can be quite specific as one problem is far more likely than 20 problems.

    I also have this annoying muscle twitching in my feet and calves (and in the last year, some numbness) which yes, may be due to b12/folic acid deficiencies, but also vitamin D/calcium...not to mention mercury screwing up the mineral balance.

    Did you have these fasciculations?

    Yes, all over the place for decades. They are over 99% diminished, all but entirely gone. I had some renewal of them with the glutathione precursor icaused deficiencies but they are gone again. Numbness is a more serious item and most of mine is gone too.
     
  8. dmholmes

    dmholmes Senior Member

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    Freddd, I realize the serum levels have little meaning, but I was just looking over past bloodwork and wanted to run the B12 and MCV values by you. B12 was 287 last time it was checked. MCV 93 last time it was checked.

    They don't seem to do very comprehensive blood panels anymore. Is there any value in getting the MMA test, or is it invalid because I'm taking active B12?

    Thanks,
    David
     
  9. keenly

    keenly Senior Member

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    hi fredd. My objective is to help with fatigue and get the mythlation cycle working. I also want to help my nervous system; i was diagnosed with RSD in 08(reflex sympathetic dsytroph;disturbance of nervous system). I have chronic odema of legs and have tingling in arms and aches like crazy. Obviously the nervous system controls blood flow.
    I have poor mitochondrial function with excessive calcium(intracellular and low intracellular calcium).

    I can get some methyl in injectable form that is 5mg per ml. I use the small needles that diabetics use so it would be 2 injections= 1 full jarrows methyl b12. Currently i have an average of 1mg daily in cyna.

    I ordered the jarrows methyl b12 5000 and it arrived this morning. Where does it go? under the tongue, on tongue? I have one i now and it is making me want to swallow.
    where can i get the other form needed?

    I know b12 is a potent nitric oxide scavenger and offers instant antioxidant protection. I don't know my blood levels and having been having injections on and off for 2 years.

    I have also done the mercury kelmar urine test and have low levels leaking from fillings(5 filllings). Is methyl dangerous in this case or o.k? I was thinking of having my fillings removed but am scared of any damage done. I have however heard fantastic things about people who have had them removed.

    There's more but i'll leave it at that for now.

    thanks
    paul
     
  10. dmholmes

    dmholmes Senior Member

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    Between upper lip and gums is easiest for me, and has been Freddd's suggestion.

    David
     
  11. Freddd

    Freddd Senior Member

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    Hi Paul,

    Let's take this oner thing at a time.

    My objective is to help with fatigue and get the mythlation cycle working. I also want to help my nervous system; i was diagnosed with RSD in 08(reflex sympathetic dsytroph;disturbance of nervous system). I have chronic odema of legs and have tingling in arms and aches like crazy. Obviously the nervous system controls blood flow.
    I have poor mitochondrial function with excessive calcium(intracellular and low intracellular calcium).

    For starters, not having insurance and having had my wallet cleaned out years ago by the doctors and testing, my approach has been entire pragmatic and gross results based, in other words results that can be directly observed. I have observed that there is a distinct split, those going for healing and those going for test results and that they don't always coincide for lots of possible reasons. I had pain and skin changes indicative of RSD but was never actually diagnosed with it. I did have major disturbances of the nervous system and most of them cleared up. I dropped 80 pounds of water in 2 batches, that last 50 pound in about 6 months after starting some of the supplements. In starting up the supplements including mb12 the methylation will tend to normalize. Mitocohdrial funtion will also tends to normalize with the correct items.

    I can get some methyl in injectable form that is 5mg per ml. I use the small needles that diabetics use so it would be 2 injections= 1 full jarrows methyl b12. Currently i have an average of 1mg daily in cyna

    The Jarrow mb12 5mg when held under the upper lip or under the tongue for 45 minutes can produce an absorbtion rate of abpout 15% increasing to about 25% in 2 hours of retention, as compared to injections. In other words, in 45 minutres the Jarrow 5mg produces an effect similar to that of 750mg mb12 injection. I would suggest starting with the sublinguals as some people have unpleasantly intense startup symptoms of various kinds. If you chew and swallow then they will stop increasing within 5 minutes or so. With an injection you don't have that option. There is no bailout. A single 5mg Jarrow sublingual can produce 1000 times the effect of a 1mg cyanob12 injection. Later on, after you see if you need to go to an injectable would be the time to do it. The sublingual is completly adequate and far less expensive and more convienient for 95%.


    ordered the jarrows methyl b12 5000 and it arrived this morning. Where does it go? under the tongue, on tongue? I have one i now and it is making me want to swallow. where can i get the other form needed?

    The Country Life Dibnencozide 3mg (adenosylb12) can be ordered from www.iherb.com and many other resellers. As soon as you swallow the mb12 it is reduced to 1% absorbtion of oral pills.

    I know b12 is a potent nitric oxide scavenger and offers instant antioxidant protection. I don't know my blood levels and having been having injections on and off for 2 years.

    Cyanob12 is in no way similar to mb12 in what it does. A very small amount might be getting converted to mb12.

    I have also done the mercury kelmar urine test and have low levels leaking from fillings(5 filllings). Is methyl dangerous in this case or o.k? I was thinking of having my fillings removed but am scared of any damage done. I have however heard fantastic things about people who have had them removed.

    I used to have quite a few amalgams. They have been replaced over time. It made zero observable difference. Methylb12 is not dangerous with amalagam fillings, not for millions of people taking it. A small percentage of the mercury in your body will likely be converted to methylmercury and removed by the liver in a normal fashion, just as if you ate a fish with some mercury.

    The mb12 needs to be taken with a basic vitamin and mineral program becasue it intereacts with all those things. In addition it can be tremendously more effective with adb12, methylfolate and a few other things for boosting mitochondrial function and methylation.

    First thing to do is get started with the basics, methylb12 and adenosylb12 and then make adjustments. You might want to start with 1/8 of the 5mg under your upper lip and repeat several times during the day if comfortable to do so.
     
  12. Freddd

    Freddd Senior Member

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    Hi David,

    MCV sounds pretty good though it might go lower. B12 serum of 287 is well below the level at which neurological changes occur. In Japan the alert level is 550. MMA usually is usable only of a person isn't supplementing. I you are taking adb12 it won't tell you anything. If you are not it's possible that you will have a positive if you can't convert mb12 to adb12. But, having a "normal" MMA doesn't indicate adequacy. My doc won't do any tests if b12 of any kind is being taken and insurance generally won't cover it because it won't tell you a thing.

    At this piont you need to have patience, take the supplements and give your body a chance to heal. If you are not taking the needed supplements, round out what you are taking. Zinc for instance can make more difference if you are short on it than a lot more b12.
     
  13. dannybex

    dannybex Senior Member

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    Thanks freddd...

    Thanks so much Freddd for your prompt and helpful replies -- I appreciate them, and they give me a lot of hope.

    "Fine tuning"...that's a good way to put it, adjusting supplements for each individualized case. I also have very low copper levels, so have to make sure I don't take too much vitamin c, as it competes with and can lower copper. Seems like if I take more than 800mgs or so per day, then the symptoms get worse...hopefully that will change as my copper levels improve.

    Re my gums: Perhaps it's a hypercoagulation/fibrin issue? I did start taking nattokinase about 5-6 days ago, and already the gum bleeding has been substantially reduced. Still, I'm going to hold off on the fish oil for a couple of days then try it again...and see if the tinnitus flares again.

    But thanks again Freddd...I've got the Folapro...will get Metafolin next time, and also have the 2 b-12's you recommend. It would be amazing to finally see some of these long-term symptoms (esp the twitching and the tinnitus) resolve or even disappear. They've disappeared for months, even years at a time (and I had them both before the CFS diagnosis), but could never figure out what was helping and what was not...

    It's worth noting I suppose that during the last year and a half of this increase in symptoms happens to correspond with not taking very much b12/folic acid, but it also corresponds to a benzo taper.

    I've been tapering off of klonopin (using the Ashton protocol) and many sites recommended against any extra b-vitamin supps as they claimed they could make the symptoms (esp the twitching/tingling) worse. They seemed to do that, but who's to know. Will be interesting to see what happens from now on...as I'm still tapering after a year...

    Dan
     
  14. Dreambirdie

    Dreambirdie work in progress

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    Hi Dan--

    I have read, in more than one place, that ZINC also competes with copper. I've had the opposite problem--high copper levels. I was taking zinc to bring it down, and it has been working.

    Just thought I'd let you know.
     
  15. Freddd

    Freddd Senior Member

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    Hi Dan,

    The Ashton protocol is generrally excellent. Are you switched to valium or doing it with Klonopin? What is your current dose. A good benzo taper is a long one, typically 1-2 years. In either case I have found for myself that if I switch to a shorter halflife benzo like Lorazapam that doesn't last long enough to reestablish accomodation, that I can bring it to a comfortable close far more easlily and quickly than with Valium. Valium (and klonopin) has such a long halflife that each dose causes some accomodation in itself where as if I use Lorazapam, in small doses, the final taper happens in two weeks without a problem. Also, I have found in myself and others that mb12 relieves most of the neurological effects of protracted withdrawal. If you would like the details of that kind of minitaper let me know. Being able to do that I don't fear using Valium when I need to any more because it has become so quick and easy getting over the low level accomodation. This only works for the last couple of mg. I got back on the Valium for 2 months with the glutathione because of the vicious spasms that started up and was able to end it in 3 weeks. I wasn't taking a lot, only 10-20mg/day and in 2 months I was only partly accomodated to that. I used to fear the valium because of the reaccomodation. It took me a year to get off it the first time.
     
  16. dmholmes

    dmholmes Senior Member

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    Is there an Ashton schedule that uses just klonopin? I've only seen the switch to valium, and my doc doesn't want to do that. I'm on .5mg once a day, but there are .25mg and .125mg dissolvables.
     
  17. dmholmes

    dmholmes Senior Member

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    I was getting up to taking most of them. Now I'm trying to incorporate the multi that my doc wants me to take. Going to be difficult with the size of these things, and 6 per day. Do you see anything in this multi that will conflict with active B12s and metafolin?

    Thanks,
    David
     
  18. Freddd

    Freddd Senior Member

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    Hi David,

    I don't know if they do. I can generate you a schedule at 1% per day or 1.5% or 2% for klonopin, no problem. Fortunately that is only 5mg valium equivalent for the taper purposes. At 1% per day that comes down at 25% per month of the declining balance. It will be easier if he will give the other sizes, and at the end, some lorazapm if you want to try that method. A 1% taper requires 100 days worth of medication at the original quantity.
     
  19. Freddd

    Freddd Senior Member

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    Hi David,

    No, I see nothing that would really conflict. 20mcg of b12 from yeast isn't useful but the body is well equiped to weed that out and is present in such small quantities it's not likely to be any harm at all unless you depended upon it exclusively. A lot of it looks actually pretty good.

    I used to take a lot of brewer's yeast and things like that.
     
  20. SaraM

    SaraM Senior Member

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    Hi Freddd,

    I used Yarrow Mehtyl B12 -1000 mg - and kept it in place for 1 hour.I will definitely start methylfolate soon and report the result.

    Best
     

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