Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

B-12 - The Hidden Story

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

  1. dmholmes

    dmholmes Senior Member

    Messages:
    336
    Likes:
    93
    Houston
    Hi Jade, for myself I've only had noticeable differences from MegaFood vitamins and minerals. I don't know about the A, D, E, but their C worked very well for me. Their magnesium has just about completely taken away my orthostatic intolerance/hypotension. Their calcium took away my chronic neck and shoulder pain. For zinc I haven't noticed a difference in brands, but I take the Jarrow Zinc Balance with copper (15:1). I don't take TMG or SAM-e, so no opinion.

    Take care,
    David
     
  2. Freddd

    Freddd Senior Member

    Messages:
    4,924
    Likes:
    1,433
    Salt Lake City
    Hi Jade,

    For most of these items you mention I either haven't found a lot of difference or the differences are very individual. For me, I seem to do ok with most forms of most of the minerals, or so it seems until and if I find the one that makes a big difference. I had a period when I couldn't absorb much of anything when my digestive system was terrible. After the recovery from that most of the things seem to work ok. Now it may be that I have to take 3x as much of one brand as another if only I could know the actual absorbtion rate. There are certain characteristics I consider important but don't know for sure. For instance, Vitamin E. I have been suggesting an E-complex since I first became aware of such back in the 70s purely on the basis that D-alpha doesn't appear to do everything that "Vitamin E" ought to do. These days it is a high gamma 8 factor E instead of a 4 factor E of 38 years ago. For Vitamin C I suggest one with bioflavinoids and these are being shown to be more important all the time. The things that I can feel work, like SAM-e and TMG I make sure I pick a brand that works pretty well but I must admit I haven't put them through the rigorous comparison testing I put brands of mb12 through, but I also haven't seen those kinds of differences.

    I suggest that once a person is finding something that is getting results, then it's possible to see if more results or better results happen when you change brands or forms. For myself, I always try to have trialed at least 3 different brands and/or forms of a substance. Right now I am trying a different variety of magnesium each time I order to see if I find one that does make a difference. Some people have found specific varieties or brands that work better for some reason or another for them. Sometimes this works out for others, perhaps based on stomach acid or intestinal health or something.

    Where I see a big difference that appears to hold up across a span of people and in comparisons with multiple different brands, or forms, I speak up. So for instance we see several brands of methylfolate. I know that the variety made under the brand name Metafolin works very well and makes a significant difference for quote a few people. Metafolin itself is available in several brands of virtamins and several prescription forms in differring dosages and combinations. However, not all forms of methylfolate are Metafolin. I haven't tried the others and can't speak up for them in comparision. Right now I am having the best run of healing of my most difficult problem I've ever had. I kind of hate to disturb anything possibly key to that right now even though I am also always looking for the next increment of improvement. Good luck.
     
  3. jade

    jade

    Messages:
    4
    Likes:
    0
    Hi David - thanks for your reply
    MegaFoods C Complex based on Bioflavonoid sources looks good.
    I'll Also Try the Mega Food Calcium, Magnesium & Potassium Tablets

    I do have a question about zinc though - The Jarrow Zinc Balance with copper (15:1) contains 1mg of Copper, to avoid Copper Deficiency that can result from Zinc supplementation (according to iHerb), but also i think Freddd said that copper is one of the things that may block the absorption of B12. Any Thoughts?

    Hi Freddd
    "I had a period when I couldn't absorb much of anything when my digestive system was terrible."
    Good Point! - This really is where I'm at just now. So - taking all these supplements at this stage doenst necessarily mean absorbing them efficiently.
    Actually, since writing my first post, ive realized that i'm still suffering from an infection that i had before starting this protocol. I know it was an infection because my partner was also ill. I think this is distorting my view of the Adenosyl B12 is actually doing. I will continue to take it, but am going to also take Olive Leaf for the next 1 to 2 weeks. This thing just keeps creeping back, just when I think I've dealt with it already.

    I am taking the Now Advanced Gamma E Complex that you've suggested in the first few posts, as well as B-Right, and have the Metafolin + Methyl B12 that you recommended so are ready when have worked up to them.
    I can see that you are saying that for remaining supplements that this may be more a matter of trial + error for each person to find what works best for them.

    Thanks for your reply + So glad to hear that you are doing particularly well right now .
     
  4. dmholmes

    dmholmes Senior Member

    Messages:
    336
    Likes:
    93
    Houston
    Hi jade, you're welcome. They have another C also, Ultra C-400 with bioflavonoids.

    I'll let Fred handle the absorption blocking question. I haven't noticed a difference whether or not I take zinc with or without copper, just a safeguard. I get some more zinc from the MegaFood multivitamin, and that only has a very small amount of copper.
     
  5. doveman

    doveman

    Messages:
    22
    Likes:
    0
    Hi Jade

    You might be interested in this page http://www.victorherbert.com/BehavioralNeurology.htm which argues that Vitamin C, Vitamin E and Vitamin A/Beta caratone are actually harmful. It also states (in the second to last paragraph of section 21.14) that Vitamin C and Iron will destroy B-12 taken at the same time.

    Professor Victor Herbert was a highly qualified and respected hematologist and leading B-12 researcher, so I certainly have a lot of respect for his work.
     
  6. Freddd

    Freddd Senior Member

    Messages:
    4,924
    Likes:
    1,433
    Salt Lake City
    Hi Doveman and Jade,

    Iron, taken within some hours before will block both b12 and vitamin E. I don't know about oral b12 but the sublingual pretty well gets around absorbtion problems. I take 6 grams of C 2x3gr with food daily and have taken as high as 16 grams a day when I had long term infections I couldn't get rid of. I know of no copper problem.
     
  7. dmholmes

    dmholmes Senior Member

    Messages:
    336
    Likes:
    93
    Houston
    The argument is with chemically synthesized vitamin supplements. I agree mostly, that's why I started taking MegaFood supplements. Hopefully my diet will be good enough eventually to not take any supplements.
     
  8. Cloud

    Cloud Guest

    Thank you Fredd.....
     
  9. abc123

    abc123

    Messages:
    15
    Likes:
    1
    Fredd,

    Couple questions.

    Regarding the B12-related genetic defect you have, has it been identified through testing? Is that possible with current medical testing?

    When using a Jarrow 5 mg sublingual Methyl B12 inside my lower lip, I get increased sensitivity in my lower teeth. Do you have any thoughts on what is causing that? Is that a "startup" symptom, or might it have something to do with residual mercury in my mouth (I no longer have silver fillings) being triggered by the Methyl B12 to irritate nerves, or something...? Thanks.
     
  10. Freddd

    Freddd Senior Member

    Messages:
    4,924
    Likes:
    1,433
    Salt Lake City
    Hi ABC,

    Regarding the B12-related genetic defect you have, has it been identified through testing? Is that possible with current medical testing?

    It has not been so identified in me in that way. The only testing I know of is cell culture testing and it is usually done on infants fighting for survival. Pragmatically you can give them mb12 and if the differnce is night and day, suddenly they are getting well instead of dying, that is the pragmatic answer. It doesn't tell you which specific defects you have but it makes obvious that there is a problem. I don't have insurance and can't afford lots of irrelevant testing. I know pragmatically that I developed 150 ADDITIONAL b12 deficiency symptoms and signs while taking taking the daily oral theraputic dose of cyacbl. I also know that I start developing acne type lesions and progressing neurological deterioration within 3 days if my methylb12 injectable is degraded by light (very little light by the way) to hycbl.

    The relative effectiveness for me is like trying to run an electric 220v clothes dryer on a 1.5v AA battery.


    When using a Jarrow 5 mg sublingual Methyl B12 inside my lower lip, I get increased sensitivity in my lower teeth. Do you have any thoughts on what is causing that?

    The solution hit upon that works for many is to try a differrnt spot each time, upper and lower. Also as I suggested recently, Enzymatic Therapy b12 Infusion is much less acid than the Jarrow and appears every bit as effective. Used the same way it is much less irritating apparantly because it is low acid. Also, hypersensitivity of the teeth and gums is a b12 deficiency symptom and does seem to clear up for many over time.
     
  11. jade

    jade

    Messages:
    4
    Likes:
    0
    Hi All - Sorry for taking so long to get back - needed to rest for a few days

    Fredd
    After reading some information on this forum (that I can's seem to find now), I remember deciding to stop taking my B-based multivitamin because it had B12 in Cyanocobalamin form, as well as Cobalt. I now think I have confused Cobalt with Copper.
    My Apologies - I think I have to put this one down to cognitive problems.

    Olive Leaf Extract is always my first choice - unfortunately, for some infections, it just doesn't seem to have any effect. Currently, it seems to be working + I'll keep taking it for a bit longer. But the possibilty that this infection will reassert itself again after stopping OLE seems likely. If this happens, then I'm going to try Vit C - I've heard of this before, but never tried it.

    David
    Strangely - I've never thought to distinguish between chemically synthesized + naturally derived supplements. Now, it seems kinda obvious that these would be very different products, if even just from an intuitive understanding.

    doveman
    Thanks for the Link. The Article is too long + complicated for me to read right now - I'll have to wait till I have more energy.

    And Now ... Back To Bed.
     
  12. Freddd

    Freddd Senior Member

    Messages:
    4,924
    Likes:
    1,433
    Salt Lake City
    Hi Doveman,

    I find that Professor Herbert's chapter linked to here shows a very uneven quality, perhaps even a sloppiness of speaking. The pronouncements he makes on b12 are often based on false assumption and he leaves much out to score his "points". He mentions that b12 is "biosynthecized" which is a kind of strange way of saying that naterially brewed methylb12 is converted to cyanocoblamain by treatment with cyanide. On the other hand vitamin C is produced through fermentation of glucose which is not in any way a chemical synthesis unless things have changed in recent years. It is the easiest cheapest way to produce C, just like beer, wine, soy sauce or b12. The autoimmune problems he blames on multivitamins may actually be the fault of the cyanocobalamin contained in the multivitamins instead of the natural active methylb12. His advice of a b12 dose in the range of 25-100mcg might be laughable if it wasn't so totallly inadequate for many people. I would have to say that the advice in this chapter is probably as danagerous or more so than anything he points out.

    He appears to not ne aware that anything besides folic acid is avaialbe as a folate supplement.

    After reading just this short piece by him I would take anything he writes with a very large grain of salt and wonder what ax he is grinding. Some of the things appear of reasonable quality and some are ridiculous. Many of the things he point out may only apply in a realm of cyanocobalamin and chronic b12 and folate deficiencies.
     
  13. doveman

    doveman

    Messages:
    22
    Likes:
    0
    Professor Herbert clearly provides references supporting the theory that multivitamins harm some, help some and do nothing for others. As you have no idea which multivitamins were studied and whether they even contained cyanocobalamin, it's rather disingenuous of you to suggest that is the problem with them.

    He refers to B12 as "factory biosynthesized" but I can't see anywhere that he mentions cyanocobalamin, so I don't know why you assume he means that.

    He also explains how Vitamin C can harm people, which seems far more important than whether it is accurate for him to describe Vitamin C supplements as synthetic.

    As for his advice on B12, again he provides references supporting the view that 0.1mcg/day is sufficient to sustain adequate B12 levels. Of course, some people such as yourselves have conditions that make this amount insufficient, but that doesn't negate the general point or the studies that have shown this.
     
  14. Freddd

    Freddd Senior Member

    Messages:
    4,924
    Likes:
    1,433
    Salt Lake City
    Hi Doveman,

    As you have no idea which multivitamins were studied and whether they even contained cyanocobalamin, it's rather disingenuous of you to suggest that is the problem with them.

    Get realistic. Almost all multivitamins contain a little b12 of some form, as also what he says about not taking folic acid alone is correct, if folic acid is included so will be cycbl, and almost universally it is cyanocobalamin. He mentions a couple of times also "In the USA" quite specifically. People taking multivitamins in the USA are almost 100% going to be getting small doses of cyanocobalamin, possibly not even up to his target range of 25-100mcg. As a society large swaths of the USA show signs of various degrees of b12/folate deficiency. He specifically mentions autoimmune diseases as being frequently found in those taking multivitamins and those are frequently the results of b12 deficiency and lots of people will develop deficiency signs and symptoms while taking cycbl. Multivitamins might very well work a whole lot better at keeping people healthy if they did contain 100mcg of methylb12. That is probably enough to prevent most people from developing certain specific outright deficiency symptoms while taking it. Multivitamins have been discussed at length in various places concerning their b12 content.

    He refers to B12 as "factory biosynthesized" but I can't see anywhere that he mentions cyanocobalamin, so I don't know why you assume he means that.

    That's becasue I have read all sorts of papers on the subject. Methylcobalamin or adenosylcobalamin are what bacteria produce, depending upon the specific bacterium. It was a real shocker when the researchers of companies started brewing up b12 that they had an almost zero yield of cyanocoblamin, the target variety. At that point they started spiking the output by adding cyanide to the mix and then extracting. Suddenly they had lots of cyanobalamin. We don't talk of soy sauce, beer or wine as being "biosynthecized". They are the natural output of the brewing process. Mb12 is the natural output, no synthesis of any kind required. The only kinds that would then be synthecized are hydroxycobalmin and cyanocobalamin. As he opened that sequence with "In the USA" that would nmake it cyanocobalamin, if any were actually made in the USA at all. To the best of my knowledge it is not at all brewed or biosynthecized in the USA.


    He also explains how Vitamin C can harm people, which seems far more important than whether it is accurate for him to describe Vitamin C supplements as synthetic.

    Yes it is. It is also far more credible to many persons if you don't mix in a lot of mistakes and misstatements. That was also one of my comments, that the quality of what he was saying is very uneven. I think that it is important to know what things interfer with absorbtion of others when all taken together; such as iron (and if C does that too, then C) preventing absorbtion vit of b12 and Vit E yet being in prenatal vitamins and that the baby needs vits b12 and E for healthy growth. It has real world implications.


    As for his advice on B12, again he provides references supporting the view that 0.1mcg/day is sufficient to sustain adequate B12 levels. Of course, some people such as yourselves have conditions that make this amount insufficient, but that doesn't negate the general point or the studies that have shown this.

    As far as credibility goes, let's keep it at what he said, he said 0.1mg a day, not 0.1mcg which is utterly ridiculous.

    As far as the correct amount 100mcg = 0.1mg, that might be adequate to prevent certain gross deficiency symptoms in some people whose entire absorbtion system is working well. As he was referring to an oral absprbtion amount from that at 1% rate and equallling 1mcg, or monthly injections of 100mcg, he can cite all the research he wants, and there is plenty of it based on research on cyanocobalamin and hydroxycobalamin, that doesn't make it any where near correct in an actual practical health way as opposed to a narrowly defined research question. However he also correctly states that uMMA and Hcy tests are not capable of proving adequacy of b12 amounts which is an accurate assessment in my opinion. I've been working on a longer post discussing that subject at some length , but the USA national day of mourning (4/15) got in the way.

    It all comes down to the definition of "b12 deficiency". I have a couple of days of medical stuff in my way and I may finish that post either during this period or within a couple of days afterwards.

    Of course, some people such as yourselves have conditions that make this amount insufficient, but that doesn't negate the general point or the studies that have shown this

    The problem is that it is NOT limited to persons such as myselves (interesting that you think I have plural selves, what makes you think so? however, I'll run with it as given here) as many studies have shown. That can easily be demonstrated over and over. And demonstration of the reality of it can in fact overturn all sorts of studies that have shown otherwise. Theory is nice to have until it doesn't line up with real effects. Then theory has to be reformulated, a new hypothesis made and tested against reality again.
     
  15. doveman

    doveman

    Messages:
    22
    Likes:
    0
    Hi Freddd

    Regarding multivitamins, Professor Herbert states that whilst they confer immune enhancement, this "brings out and maintains latent autoimmune disorders". You suggest that this is due to B12 deficiency caused by the cyanocobalamin in the multivitamins. However, the evidence seems to suggest that most people can obtain B12 from cyanocobalamin, so this seems an unlikely explanation.

    The only kinds that would then be synthecized are hydroxycobalmin and cyanocobalamin. As he opened that sequence with "In the USA" that would nmake it cyanocobalamin, if any were actually made in the USA at all. To the best of my knowledge it is not at all brewed or biosynthecized in the USA.

    So it would be cyanocobalamin if it were made in the USA (why couldn't hydroxycobalamin be made in the USA?), but as far as you know none is, so why would you assume he was referring to cyanocobalamin, when synthesized could mean hydroxycobalamin?

    As far as credibility goes, let's keep it at what he said, he said 0.1mg a day, not 0.1mcg which is utterly ridiculous.

    Yes, obviously I made a typing mistake.

    As for the research with even 0.1mg of cyanocobalmin, it doesn't just prove a "narrow defined research question" but also demonstrates "actual practical health" benefits such as preventing B12 deficiency occurring in the first place and correcting anemia and neurological symptoms.

    I can't see where he states that "uMMA and Hcy tests are not capable of proving adequacy of b12 amounts" and they seem to be the best tests we have at the moment to check that both coenzyme forms of B12 are actually being processed properly, which seems far more important than measuring how much is in the blood, but I look forward to reading your thoughts on why these tests are inadequate.
     
  16. Freddd

    Freddd Senior Member

    Messages:
    4,924
    Likes:
    1,433
    Salt Lake City
    Hi Doveman,


    I can't see where he states that "uMMA and Hcy tests are not capable of proving adequacy of b12 amounts" and they seem to be the best tests we have at the moment to check that both coenzyme forms of B12 are actually being processed properly, which seems far more important than measuring how much is in the blood, but I look forward to reading your thoughts on why these tests are inadequate

    As you can see by the color highlighted sections he shows the poor correlation of Hcy to low HTCII and the many confounding factors. He also comments on because current screening tests for total serum vitamin B12 have poor positive and negative predictive value.

    "Poor positive and negative predictive value" of total serum screening. is mentioned. He doesn't go into MMA here but the problems are the same. Again, I'll have the research papers cited and quoted showing the problems in the definition pices I'm working on. The whole problem with all three tests is that they have poor poasitive and negative predictive value. None of them can predict who won't have active b12 responsive symtpoms. They do quite a bit better in predicting who will have active b12 responsive symptoms but don't do so well on the Hycbl and Cycbl responsive symptoms. That is why he says "poor positive and negative predictive values". That phrase itself depends for it's validity on the usage of inactive cobalamins only. So again, either an unspoken assumption or sloppy definition or something. You should know that b12 research is totally filled with unspoken assumptions and lots of "finagle" words. So again it comes down to the definition of "b12 deficiency".

    Holotranscobalamin II* (holo TCII) is a surrogate Schilling test, in that it becomes low within a week after cessation of absorption of food vitamin B12, usually due to gastric atrophy sufficient to stop production of gastric acid and enzymes.35,58 Flynn et al.18 found in 171 (139 men, 32 women) healthy elderly Missouri Caucasians (mean age 65) that 49% had low (below 60 pg/ml serum) holotranscobalamin II, meaning they were no longer able to absorb food vitamin B12; 52 (60%) also had vasculotoxically high serum homocysteine (Hcy) (>17.5 nmol/ml). Of these 52, only 7 also had low total serum vitamin B12 (<200 pg/ml). The remaining 31 who had reduced food B12 absorption, as measured by TC < 60 pg/ml, did not yet have high Hcy. All 171 had normal red cell folate (>136 ng/ml) and serum folate >1.6 ng/ml. Flynn et al are conducting a follow-up study with Green and colleagues at University California, Davis24,50 to determine how much of this gastric atrophy is of the genetically predisposed variety and how much is due to Helicobacter pylori, and how much to both.


    Fortification with B12 is necessary not only because it is cost effective,35 but also because current screening tests for total serum vitamin B12 have poor positive and negative predictive value,24 and assays for homocysteine and methionine are confounded by a number of variables.24 As Green et al.24 state, Some clinical evidence supports the concept that measurements of holo-TCII levels may provide a better index of cobalamin status, but reliable commercial screening assays for holo-TCII are not yet available.

    Regarding multivitamins, Professor Herbert states that whilst they confer immune enhancement, this "brings out and maintains latent autoimmune disorders". You suggest that this is due to B12 deficiency caused by the cyanocobalamin in the multivitamins. However, the evidence seems to suggest that most people can obtain B12 from cyanocobalamin, so this seems an unlikely explanation.

    Doveman, I suggest you do some additional reading and NOTICE (edited) the number of autoimmune problems linked or apparantly linked to b12 deficiency. As far as "the evidence seems to suggest that most people can obtain B12 from cyanocobalamin" I will address that in the longer piece I am working on about the definition of "b12 deficiency". In the shortest possible form it comes down to the question "If cycbl prevents 30 of 300 b12 deficiency symptoms and signs, are only those 30 to be considered in the definition of "b12 deficiency"?"

    So it would be cyanocobalamin if it were made in the USA (why couldn't hydroxycobalamin be made in the USA?), but as far as you know none is, so why would you assume he was referring to cyanocobalamin, when synthesized could mean hydroxycobalamin?

    In the USA cycbl is the "standard" theraputic form of cobalamin just as Hycbl is the standard with the NHS in the UK. If he had been directing his remarks at treatment etc in the UK I would then have presumed he was referring to Hycbl. Since no actual b12 crystal is produced in either country he can only mean the pharmaceutical manufacture of dosages from the bulk crystal purchased from where it is produced. Or one could just decide he is referring to both Hycbl and Cycbl even though they are country specific forms and he repeated specifies just the one country. Perhaps this is another example of lack of precisesness and clarity in what he is writing, on which I previously commented. The fact that the interpretation of what he said is so up in the air and dependent and changing upon the readers level of prior knowledge for interpretation is a problem. Foggy writing might make for good excuses of "I never said that", the old "plausible deniability routine" but it makes for lousy technical writing.



    (why couldn't hydroxycobalamin be made in the USA?)



    It could be but isn't. It is more difficult to find even at compounding pharmacists than even mb12. Why the USA choose to remain with the decidely inferior Cycbl, even compared to Hycbl, is something I don't understand. Perhaps that illustrates the politics or whatever it is that dosn't put consideration of quality into of all this. Hycbl is easily available from vitamin companies however and we do have the freedom of choice of form of b12 in that way at least.



    As for the research with even 0.1mg of cyanocobalmin, it doesn't just prove a "narrow defined research question" but also demonstrates "actual practical health" benefits such as preventing B12 deficiency occurring in the first place and correcting anemia and neurological symptoms.

    Actually if you read the research supporting the "effectiveness" of cycbl you will see that they are indeed based on very narrowly defined research questions with populations carefully chosen to have hopefull favorable outcomes. This will be gotten into at more length in the upcoming definition of "b12 deficiency" since it all hinges on that.
     
  17. doveman

    doveman

    Messages:
    22
    Likes:
    0
    Hi Freddd

    I'm aware that there are specificity and false +ve problems with the MMA and Hcy tests, with the latter specifically smoking, alcohol, B6 and folate deficiencies, but the last two can easily be checked and treated beforehand if necessary and the first two can perhaps be eliminated by abstaining for a certain period before the test. Then again, if someone insists on poisoning themselves with cigarette smoke they can hardly be surprised if they feel ill (and I'm currently a smoker unfortunately).

    I'm not sure what the particular problems with the MMA test are.

    52 (60%) also had vasculotoxically high serum homocysteine (Hcy) (>17.5 nmol/ml). Of these 52, only 7 also had low total serum vitamin B12 (<200 pg/ml).

    That just tells me that the Hcy test is more useful than the serum B12 test, or at least using a minimum of 200pg/ml.

    The remaining 31 who had reduced food B12 absorption, as measured by TC < 60 pg/ml, did not yet have high Hcy.

    That could just show that the reduced B12 absorption had not persisted long enough to have a metabolic effect. It makes sense to check TC levels as well to ensure that they are kept up, to avoid problems occurring in the first place, but on their own they can't show that the processing of B12 is actually happening. Professor Herbert said that there is no gold standard test for B12, we have to use them together.

    Perhaps this is another example of lack of precisesness and clarity in what he is writing, on which I previously commented. The fact that the interpretation of what he said is so up in the air and dependent and changing upon the readers level of prior knowledge for interpretation is a problem. Foggy writing might make for good excuses of "I never said that", the old "plausible deniability routine" but it makes for lousy technical writing.

    I'm not sure someone who writes such meaningless sentences as "I suggest you do some additional reading and the number of autoimmune problems linked or apparantly linked to b12 deficiency." is in a position to criticise other people's writing.
     
  18. Freddd

    Freddd Senior Member

    Messages:
    4,924
    Likes:
    1,433
    Salt Lake City
    Hi Doveman,

    folate deficiencies ...can easily be checked and treated beforehand

    Again, a great deal of unwarrented faith in the medical system and tests. It can be but rarely is tested and treated before hand. It is also not that often treated with Metafolin if it looks "normal. I had "normal" folate and high MCV. My MCV did not come down at all with mb12. It came down with Metafolin and I'll find out soon if it came down even more with P5P. Then you also have the problem that folate can test quite "normal" but people still have folate deficiency symptoms that respond with Metafolin to treatment. Hmmm. It seems that we just can't get away from these test problems and interpretation peoblems.


    I'm not sure someone who writes such meaningless sentences as "I suggest you do some additional reading and the number of autoimmune problems linked or apparantly linked to b12 deficiency." is in a position to criticise other people's writing

    I will edit it to say what I mean. When I am doing technical writing I work with an editor who makes sure that what I say is in complete sentences and all that kind of stuff. I have to say that BBS posts on the internet are not up to the editing standards as for a textbook for instance. I don't always proofread everything immediately.

    The basic problems with Hcy and MMA tests for b12 is that while when they say "You NEED b12 they are generally correct with a couple of minor qualifications, there is no value they can give that says "You DON'T NEED b12" meaning that there are no b12 treatable symptoms. While it is not a problem with the test per se, it is a problerm in how docs use and understand it. There are studies showing that people with initial serum coblamin levels averaging over 700pg/ml AND "normal" Hcy AND "normal" uMMA that still have plenty of b12 treatable and responsive symptoms. That is basic problem #1. Basic problem #2 is that unless there is a spinal draw the serum results don't reflect elevated spinal fluid Hcy and MMA with an independent CSF deficiency and there are no standards yet for say that even if there is a draw and yet again even if "normal" they don't indicate lack of CNS non-responsiveness to b12 for neural funtioning and myelin formation at the very least.

    The tests are poor approximations of what would make a good test, one that would say "yes" or "positively not" rather than "probably yes" and "maybe not"
     
  19. dmholmes

    dmholmes Senior Member

    Messages:
    336
    Likes:
    93
    Houston
    Wildaisy, the mb12 makes me sleepy also. I asked a while back, either here or at WD, at nobody else had the same reaction. Today is the first day I planned on moving it to nighttime instead of morning. We'll see how it goes. There is a connection from mb12 to melatonin and sleep cycle, not sure why it would be so quick for us.

    Take care,
    David
     
  20. BEG

    BEG Senior Member

    Messages:
    944
    Likes:
    184
    Southeast US
    My sincere apologies to doveman and fredd, who obviously know a lot about B12; however, truly my brain is not able to read and digest their long scientific posts. I just offer one anecdotal incident. I was tested for B12 three years ago and was found to be deficient, (I would have to find the test results to comment on type of test.) I was prescribed B12 injections which I did faithfully until the latter half of 1999. That was the worst 6 months of disease severity for me. I started the B12 injections again in 2010. Voila! I begin to feel run down when I'm due for a shot. The day of the injection, I feel no different, but the next day I feel a real surge of energy. I have to be careful not to cause PEM.

    This thread is full of wonderful suggestions. I've found the injections work for me. Incidentally, toxins were my precipitating factor for CFS, and I also have POTS. I appreciate the opportunity to put my little testimony in here and hope I didn't interrupt.

    BE G
     

See more popular forum discussions.

Share This Page