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"New" test for B12

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Dreambirdie, Sep 23, 2009.

  1. Dreambirdie

    Dreambirdie work in progress

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    I read on another forum that there is a 'new' test for B12, that's used in the Netherlands. It is called: HOLO CT = Holo-transcobalamine level.

    Does anyone know if such a test is available in here in the US?
     
  2. richvank

    richvank Senior Member

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    Holotranscobalamin test

    Hi, dreambirdie.

    I don't know whether this test is available in the U.S. or not.

    It is a definite improvement over the standard serum B12 test that doctors conventionally run, because it measures only that fraction of the B12 in the blood serum that is bound to transcobalamin and is thus available to be given to the cells of the body in general.

    Most of the B12 in the blood, on the other hand, is bound to haptocorrin, and it eventually goes to the liver cells, presumably for recycle via the bile and the gut, though this part of the biochemistry of B12 is still a subject for research. A regular serum B12 test includes this part, which limits its usefulness. If a person is depleted in B12, the serum B12 test will show it, but if the test finds normal or high values for B12, one can't conclude that the B12 situation is O.K., i.e. that it is being used properly by the cells.

    The holotranscobalamin test will indicate whether the person is getting enough B12 in their diet and supplements (if used) and whether they are absorbing it into the blood enough.

    However, in CFS, the problem with B12 is usually at a later point in the biochemistry of B12. The problem is that the cells are not able to properly utilize the B12 they receive from the blood. That is, they are not able to process the B12 they receive and convert it into sufficient methylcobalamin and adenosylcobalamin.

    (In my hypothesis for CFS, this results from glutathione depletion, which leaves the B12 unprotected during a critical part of the pathways to form these active coenzyme forms, so that it reacts with toxins and is "hijacked.")

    The result is that the holotranscobalamin test could show an adequate or even above-normal level of B12 bound to transcobalamin in the blood, but that will not necesarily indicate whether the cells are able to use enough of it functionally.

    The best test for B12 function in CFS is urine methylmalonic acid (MMA). This is measured in the urine organic acids tests offered by several laboratories.

    It's helpful if a test panel is chosen (such as the Genova Diagnostics Metabolic Analysis Profile) that also includes formiminoglutamic acid (Figlu). If both MMA and Figlu are found to be elevated in a person with CFS, it's a pretty good indication that there is a partial methylation cycle block, and this can be tested more specifically and treated. Information on this is available in the files section of the CFS_yasko group's website.

    Please note that I have no financial involvement in testing or treatments for this condition.

    Best regards,

    Rich
     
  3. Dreambirdie

    Dreambirdie work in progress

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    Thanks Rich. It sounds like those tests (that you mention) would be rather expensive.

    For now, I'm just trying out some of Freddd's ideas. We'll see what happens.
     
  4. richvank

    richvank Senior Member

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    To dreambirdie re: testing

    Hi, dreambirdie.

    The Genova Diagnostics Metabolic Analysis Profile is offered without a doctor's order for $299 at www.directlabs.com. It's a urine test, so it can be done at home and the urine sample mailed to the lab.

    I wish you success on Freddd's protocol. As I've posted, I have a couple of reservations about it for people with CFS, but it might work out fine. It certainly addresses the methylation cycle block.

    Best regards,

    Rich
     
  5. Dreambirdie

    Dreambirdie work in progress

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    Where exactly do you address your reservations about it? There is so much info going on about this, that I'm not sure where to find it. Or else can you just give me the summary version of your reservations? thanks
     
  6. richvank

    richvank Senior Member

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    To dreambirdie re: reservations

    Hi, dreambirdie.

    I have two reservations:

    The first is that the dosages are pretty high. In my experience, people with CFS (PWCs) frequently find that they can tolerate only much lower dosages at first, because of what seem to be die-off and detox symptoms.

    The second is that methylcobalamin is one of very few substances in biological systems that is able to react with inorganic mercury to produce methylmercury. Methylmercury can readily cross the blood-brain barrier and enter the brain, where it acts as a neurotoxin and is very difficult to remove.
    I am leery of high dosages of methylcobalamin in people PWCs who have been ill for several years, while they had amalgam fillings in their teeth, since they are likely to have accumulated a significant body burden of inorganic mercury while they were inhaling metallic mercury vapor from their fillings, and their glutathione levels were low, so that they could not detox it as well as normally.

    I do not have documented proof that this is a problem, but I am aware of two cases in which PWCs who had significant mercury burdens received high-dose intravenous methylcobalamin, and experienced neurological symptoms shortly afterward, which persisted for some time. So I feel the need to express caution about this unless and until it is proven otherwise.

    If you would like to compare, the most recent version of the treatment I have suggested for CFS is pasted below.

    Note that the folate dosages are at the levels of hundreds of micrograms, and the B12 is at a dosage of 2 milligrams and is the hydroxocobalamin form, rather than methylcobalamin. Some people have had to start with much smaller dosages than those shown, because of the intensity of the symptoms that were provoked.

    As I have noted in another post, Freddd's own case is different from those of people who have CFS as defined by the case definitions for it, which state that it is not a lifelong disorder, but is an acquired disorder. According to Freddd's descriptions of his illness, he has an inborn error of metabolism (IEM) that involves one or more mutations in the genes that code for the enzymes that process vitamin B12 within the cells. Based on Freddd's description of his experience, I suspect that he has a mutation in one or more genes that code for enzymes involved in the conversion of glutathionylcobalamin into methylcobalamin and adenosylcobalamin. He has found that he needs to take relatively high dosages of methylcobalamin and adenosylcobalamin to make up for this IEM, and that he cannot tolerate taking glutathione or its precursors. I think that makes sense in terms of the IEM that he seems to have. However, I suspect that very few PWCs have this same issue. While Freddd's treatment may work for them, I think it is sort of an overkill, and I do have the two reservations about it that I have described. I guess some of the people who have CFS are trying it, so we should have more information about how it works for them as time goes on. If I had CFS myself, though (which I don't), I would consider these reservations before deciding whether to try it.

    Best regards,

    Rich

    April 18, 2009


    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROME (Revised)

    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. FolaPro [2]: tablet (200mcg) daily
    2. Actifolate [3]: tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


    [1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.
     
  7. jenbooks

    jenbooks Guest

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    Rich thanks for your clarifications which make a lot of sense.

    May I ask--someone posted to me it is better to get your b12's compounded and keep them in the fridge. Is that true even if oral? I began to google around to see what the shelf life is. I just bought hydroxy in pure water--as I don't like fillers--but I don't know how long it sat around on the shelf. I don't mind getting an Rx for it even if oral if it is fresh and I can refrigerate. Is shelf life a concern? Thanks.
     
  8. Dreambirdie

    Dreambirdie work in progress

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    thanks for clarification

    Hi Rich--

    Wonderful! Thank you! I'm so glad you made it brief and clear. :) Yay!

    I've not tried Freddd's high doses of anything, especially the methyl B12, just the 1 tab of dibencozide/day (split in two doses), which feels pretty good to me. I had already been taking many of the other basic vitamins and minerals on his list. I'm used to high doses of supplements, so I'm open to upping these. But because I have a lot of mercury issues, I plan to be very cautious about the methyl B12.

    My gut instinct seems to be in agreement with your reservations... so I must (hopefully) be on the right track.

    thanks again
     
  9. richvank

    richvank Senior Member

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    To jenbooks re: stability of hydroxyB12 solutions

    Hi, jenbooks.

    Yes, stability of hydroxo B12 solutions is an issue.

    Dry powdered hydroxo B12 is stable indefinitely in a closed container at room temperature. This is the form that is supplied to be mixed in a saline solution and given intravenously as an antidote for cyanide poisoning. The supplier actually specifies that it will be good for 30 months at room temperatures, but I think that is conservatively short.

    Once the dry powdered hydroxo B12 is mixed into the saline solution, it is claimed to be good for 6 hours at room temperatures, and should be disposed of after that.

    The above information is from the PDR.

    I think that the stability of hydroxo B12 in a pure water solution would be comparable to that in a saline solution.

    There are some things that can be added that will make a solution of hydroxocobalamin stable for a longer time. Making the solution slightly acid is helpful, such as with sodium acetate, forming a vinegar-type solution.
    This converts the hydroxocobalamin to aquocobalamin, which is more stable.

    Hydroxocobalamin is most stable if neither reducing or oxidizing agents are present.

    This information is from a variety of sources, including patents.

    I don't know if this is helpful, but it's what I've been able to find, digging around a little.

    Best regards,

    Rich
     
  10. Freddd

    Freddd Senior Member

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    Hi Rich,

    I do believe you overstate the situation in regard to the IME sitation as I did indeed have a classic traumatic injury induced inset of FMS and an equally classic post viral infection onset of CFS. Also, many many folks, far more than should have this rare IME, respond essentially identically to me including vegetarians, which I was for 20 years, no doubt adding to my problem. Unless you are ready to define recurrent strep infections and tonsilitis as b12 deficiency symptoms and other such things it's hard to see the effects of the IME. As long as I ate meat I had no gross problems that scream out b12 deficiency prior to FMS onset. Did you check out the mercury model I posted on the other thread. At an efficiency of 10% of mb12 methylating mercury prior to excretion, it would take over 700mg of sublingual methylb12 at an assumed 20% absorbtion which only happens with a few brands and careful technique to form 1 mg of methylmercury. Said methylmercury then has a halflife of about 77 days with excretion in the bile. A steady state of under 2mg of methylmercury is reached after a couple of hundred days of 1mg of mb12 entering the blood stream daily with the bile excretion at about 1% of methylmercury per day. This is far far below the lowest serum level of the beginning of any methylmercury toxicity. Even at a 100% efficiency, which is very highly unlikely, of all mb12 methylating mercury before excretion the steadystate serum level reached on 1mg per day in serum is half that of the lowest level of any toxic symptoms. It would indeed take an extremely high dose of IV methylb12 to even potentially cause any problem at all.
     
  11. jenbooks

    jenbooks Guest

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    Rich, thanks for that info. Dang. That hydroxy I've got is probably worthless. I know you recommend perque and I assume that's stable but the problem is the fillers will bother my very sensitive bladder.

    I have to figure this out. I'll call Wellness Pharmacy in Alabama--they are the ones I work with thru my doc and I think they will be able to tell me. Whatever info I get I will post back on the thread. If I'm stuck taking sublinguals it will be a bit of a sensitivity issue for me.
     
  12. jenbooks

    jenbooks Guest

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    By the way, regarding methylb12, and I don't want to get into a long discussion here, but if you subscribe to Amy Yasko's very thorough (and therefore very individualized and complex) approach, some people should have less methyl donors not more, because of their genetics, and how it backs up. She told me I was one of those, given my genetics (I paid for her test. It was very interesting to see). The one thing that jumped out at me when I looked at my genetics and the classic methylation chart is that I don't make enough 5 tetrahydromethylfolate. Now I"ve known that for TWO years, and I do eat three eggs every morning, but I've had folapro sitting in my fridge that long. I'd better check the expiry date. In any case, I haven't take any yet. Too many life stresses challenges good things bad things health issues environmental stuff. I am hoping to FINALLY get started on hydroxy and methylfolate now, 2 years later. Ay yay yay.

    Anyway the point being that some people should not overload themselves on methyl donors. This has nothing to do with the b12 conversion issues we've been discussing yet it MAY be implicated in some folks' negative reactions (such as Lisa and Jeremy getting so ill)
     
  13. Dreambirdie

    Dreambirdie work in progress

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    Hi Jen--

    This is over my head. So I'm hoping you can answer some questions for me.

    What is a methyl donor? What diagnostic test did Amy Yasko do for you? (and HOW MUCH IS that test?) What do these test results tell you? How do they apply to the issue of what kind of B12 you should/shouldn't take?

    thanks, db
     
  14. jenbooks

    jenbooks Guest

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    Amy offered a genetic test, looking at certain polymorphisms she felt were important. It may be cheaper now, it was quite expensive a few years ago, something like $800 or $900. But I was really interested and I do think she's a genius, even if sometimes inaccurate, so I took it and got her input. Some of us essentially have a poor drain on our bathtub, and if we can't convert stuff properly, it will build up.

    Thus I'm a person who probably shouldn't be taking methylB12 according to my genetics per Amy.

    I think you're doing fine and have good instincts (sticking with adenysol for now). I think our bodies do tell us if we can listen well enough.
     
  15. klutzo

    klutzo Senior Member

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    Rich, are you there?

    Hi Rich,
    So glad to see you on this forum too!

    I am doing Freddd's protocol, despite having my feelings badly hurt by him on another thread, which of course has nothing to do with whether his program works or not. He may be a genius, for all I know. I had already received and started the supps. he uses when that happened. (This is by way of explaining why I am asking you a question about his protocol). I am very familiar with your work and followed it on Pro-health.

    I am only having two sx so far:

    1)The good news is that my low body temp which I've always blamed on my thyroid is gone, and if anything, I am much too warm now. We'd been saving money by turning the a/c up 3 degrees, but I can't tolerate it that high now. (I live in Florida)

    2)The bad news is my hair is falling out. If it keeps up at this rate, I'll be bald in a month, and I have really long hair that is in good shape, or was until now.

    Some facts: I have had the MMA test, which my ins. paid for, and it was normal. My folate test was above normal range before starting this, and I am not taking the methylfolate yet anyway, though I bought it. My B12 was high normal. I've been taking a multi with a high amt. of methyl B12 for over a decade. My mother had Pernicious Anemia.

    I just started with half a Methyl B12 today, and have been taking the adjuncts all along, except for potassium. Therefore, it would have to be the adenosyl B12 or potassium making my hair fall out, unless it's a coincidence. Do you think the B12 could be making my hair fall out?

    Thanks,
    klutzo

    P.S. Will someone please PM me with instructions on how to PM on this forum... it must be brain fog, but I can't figure out how to do it. Thanks.
     
  16. busybee

    busybee Senior Member

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    Hi Klutzo

    Top right hand corner under your username is private message.

    Then scroll down and on the left hand side is send new message, click on it.

    Type in the persons username at the top of the form then the message in the big box.

    Click either preview or submit message.

    Good luck

    Bx
     
  17. klutzo

    klutzo Senior Member

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    Hi Busybee,
    Thank you very much for the info. That is totally different than any other forum I've been on, so I don't feel like as much of a dolt now as I did before.
    klutzo
     
  18. dmholmes

    dmholmes Senior Member

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    Another way, click on the person's username such as on the left side in a thread, and choose "Send a private message to ______".
     
  19. klutzo

    klutzo Senior Member

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    Hi dmholmes,
    Thank you also. I appreciate the info!

    klutzo
     
  20. klutzo

    klutzo Senior Member

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    Update

    I want to mention that Freddd has apologized for his previous comment mentioned above that hurt my feelings and I have accepted, so that is all over with and there is a clean slate now.

    So, I would love comments from him as well as Rich or others re: my reactions to the program so far. I will try to post this on one of the program threads as well.

    I've been able to hold these in my mouth for between 1 and 3 hours so far.

    1. Adenosyl B12 caused an immediate increase in energy, improvement in mood, and one of the best nights of sleep I've had in years. The effect wore off on the 3rd day of taking it though.

    2. Took the first dose today of Methyl B12, 1/2 lozenge. Caused shortness of breath and depressed mood.

    3. Something is causing my hair to start to fall out in alarming amounts. If this keeps up, I'll be bald in a month. Could it be something in the program?

    Thanks,
    klutzo
     

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