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.
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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 Jerry,

    When you were taking the mb12 did you see any improvments in the first few months to keep yourself going? The problem I have got is I dont seems to show any improvments whilst I am on it, it is just as hard if not worse 2 months in.

    The second month I was floundering around and going rapidly backwards as the brand we were trying that month since the stores and internet vedors were all out of the brand I had tried first that worked great didn't work at all and other brand barely was active. By the time we had located another 5 star brand an entire month passed by. Then I had several mnoths of startup starting over about 90%.

    So I'll tell you what ocurred when by months of use, not including the backwards month.

    1. First 15 minutes - Energy starts flowing. My brain starts to turn on. Awareness changes. Mood starts changing. Things start to brighten. With the first tablet by 15 minutes I was glued in my chair with the intensity (without object, just intensity). Bone crushing fatigue starts lifting.
    2. First hour - bone crushing total fatigue present for 16 years starts lifting in 15 minutes and is much gone in 1 hour. The "lights came on", quite literally. Everything brightened viusually about 2 stops (4x) suddenly. A lifelong depression started lifting at 15 minutes and was largely gone in 1 hour. Every pain in my body shines out in full detail. Light headed and a little dizzy describe it. But not the dizziness that put me on the floor when the deficiency hit hard.
    3. First day - Lactic acid burn in muscles starts diminishing. Burning tongue comes off the hard burn edge. Bladder comes off hard burn edge.
    4. First 10 days - Lactic acid burning pain in muscles completely gone. Burning bladder, burning urethra, burning "urgency", beef-red burning tongue almost completely gone. Sense of smell changes/improves dramatically. Sense of taste changes/improves dramaitically. Sense of hearing sharpens. Abbility to focus eyes comes back. Also, my body is stepping backwards through hundreds of symtoms as each one reverts step by step to earlier versions. Going in these steps were hardly noticable becasue they were spread out over 55 years. Coming out of it things are changing almost daily.
    5. First 9 months - Sense of touch in skin changes from painful to normal. Most neuropathies gone. Control over bladder is fully returned. Most peripheral neupathies are getting better. Burning neurological pain is gone, Dilantin discontinued. Sleep restored to normal, provigil discontinued. Muscle spasms decrease 95%, valium & lorazapam are tapered. Asthma symptoms go away. Albuterol discontinued. Nausea and IBS are gone. Compazine suppositorties discontinued. I realized that what ever was missing and keeping me from feeling "happy" was no longer missing and that I could feel happy again. It was quite sudden. Following adb12, rest of muscle pain goes away. Muscles start growing with exercise. Overall pain had decreased 95%, morphine daily dose reduced 40%. I can now walk down the detergent aisle without an asthma attack. Exercise tolerance is back. I get tired at night insread of exhausted all the time.

    I experience more frequent palpitations / arrythmias

    I had these for years during deficiencies. It finally took an additional 50mg of zinc and B-RIGHT twice a day as some of the b compnents are short halflife. It turned out to be also cofactor related however arrythmias are a frequent b12 deficiency symptom.

    The dizziness usually comes on within 15 minutes of taking the mb12 sublingual and lasts for 2 days even if I dont take any more.

    Now that is interesting. That first 15 minutes is very suggestive. That limits it to a relatively small amount of mb12 required as it is just beginning to get into serum. It limits it to things that can happen quickly. These are also the things that start fading after generally a few months or when an equilibrium level is reached so that each days dose doesn't push the serum level up significantly or increase the level in mitochnodria. The lower the dose the longer this period lasts. At some low level of dosage this appears to go on indefinitely as the body loses as much each day as is taken in and the change induced by the dose is significant compared to what is already there.

    I finally got tired of this and experimented by increasing the dosage. I just did one after another. Each tablet had less effect than the previous. After a couple of days of doing 50-60mg each day the effects of the tablets faded away in a few days after month after month of no real change.

    I am just finding it difficult to accept that I have to go so badly backwards to go forwards and am concerned I might just be hindering myself.

    No matter how intensified or scrambed up the symptoms got I never assumed I was going backwards. At times I was going literally backwards as the symptoms worked backwards through the progressions they had made getting there. This was healing, not going backwards unless you consider it backing up through the symptoms to get to the point before symptoms. I don't believe that you are hindering yourself. However you have to decide for yourself. I have walked this way and recognize the landmarks. As far as I can tell you are just describing it differently that I did. You may have to experience every symptom you have expeienced in the last 30 years getting to now including some you don't remember or didn't notice on the way in.

    Good luck.
     
  2. winston

    winston Senior Member

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    Hi Jerry, I know how you are feeling right now, doubtful. Will this B12 protocol work for me? Am I B12 deficient? I went through the same thing though I did have a long honeymoon with the B12 the first time I tried them. I am on my fourth try. Started a very slow titration the beginning of Dec. 2009. The first 9 weeks never could get off the couch, also nausea every day. I upped my B-right to twice a day and had three better days than 4 worse days, the last 3 weeks nausea disappeared. The last 9 days I have felt better, the crushing fatigue has turned to tiredness. I can sit up for longer periods of time, can drive to the grocery store and do a few errands. Even played bridge for 2 hours and wasn't exhausted. Can go out to dinner with husband without being totally miserable.

    Right now my dosage is:

    2 - B-right
    1 - adb12
    2 - mb12 5 mg
    1 - folate


    All the basic supplements except vit A, it gave me a rash reaction. No other co-factors. Planning to reach 3 mb12 5 mcg. by upping it by 1mcg every 4 or 5 days. Not sure what dosage I will need to reach saturation or what co-factors I need to try at this time.

    Don't give up, you have come this far. You might need to up something or add a co-factor. Just keep trying.

    Lena
     
  3. Sunday

    Sunday Senior Member

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    Lena, so nice to hear you are doing well! You bumped your mb12 up much faster than I did; I'm now at

    2- B-Right
    3 - adb12 (3mg)
    2- mb12 5 mg
    2-folate

    I also am taking the foundation vits and some co-factors. Still twiddling with those.


    Jerry, I agree with Lena: don't give up now. There are parts of this protocol where I really do wonder how well I'm doing or if it's working. It helps me to look at tiny details. For instance, catching myself walking fast without thinking about it; not being nauseated all day; being able to think and read just a little bit better or longer. (It's really great getting back some of my ability to synthesize information; for one thing, that means I can REMEMBER the information). For some people the improvements are dramatic, for me, it's been gradual. Getting up to my current dosage has taken 4 months, and for 2 of those months I felt like some of the worst crap I've ever felt. And that's saying something.

    It helps me to think in terms of, the symptoms that are getting worse are the ones that are healing. This is how it keeps working for me; I realize others may be different.

    I'm definitely still not there yet, but I'm definitely more functional and, even better, I have hopes of getting more functional yet. As Lena says, you might need to up or add something (doubling my folate dosage was rough, but made a big difference; ditto moving from 5 to 10 mg mb12, which was a little rocky but not as bad for me as the folate). Freddd says that this protocol is like baking a cake: there are a lot of ways to get the recipe wrong, you just have to keep working with it until it works for you.

    Methylation, I'm becoming convinced, is really basic to correcting what's going on with us. And RichvanK says some studies show that getting it going can clear up gut issues as well as fatigue, pain, and cognitive stuff. Oh, and SLEEP! It's worth it just for the quality of sleep!
     
  4. powertool4

    powertool4

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    still having trouble over here..

    Everyone seems to be taking 2 or more folates, which is at least 1600mg of folate, in the ACTIVE form, meaning it's 7 times (i believe) stronger than folic acid. Is there any long term risk or dangers to this? B12 is more or less safe but there are so many warnings out there about high doses of folate actually increasing risk for cancer and tumors as it helps cancer cells replicate. One of the treatments for cancer revolves around blocking folate i believe. The other concern is masking b12 which can be bypassed by a good uMMA test and not looking at CBC, but other than those reasons, can there be too much folate? I don't have a problem taking a lot of b12, but something in me just doesn't want me to take high doses of folate. And for no real good reasons, other than the iffy feeling.

    Anyway, ive been at the same position for over a month now, and every time i dose b12 i get real spacey and out of it, my head feels light, pressure, emotionally i get weird. this happens within minutes, as the sublingual is melting in my mouth. And it feels like an overload of dopamine if i had to describe the symptoms. Having mixed results, both good and bad from the b12 but the bad gets worse and worse until i have to skip a day. I dont see how i can tolerate 5mg of b12 when i'm barely cutting 1.5mg. I am wondering if could it be not enough folate or any other cofactor that has to do with mental health and neurotransmitter metabolism/production?
     
  5. aquariusgirl

    aquariusgirl Senior Member

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    powertool

    Honestly i've being doing some variation of methylation support for my CFS for three years now.. and I read these posts on how much folate ppl are taking and I'm like WTF? How can they tolerate it. It would bury me..
    The fact that they're taking straight folic acid along with the bioactive forms muddies the picutre a little bit.. Amy Yasko says that the differnet forms of folate compete for transport or uptake or sthg like that...and of course it all depends how sick and depleted in folate you are .. but still.

    I know that spacey feeling well by the way. I always thought it was metals being moved out of the brain (or into it....depends on who you listen to..and how much methyl B12 you take) but you could try using some binders.. activated charcoal, modified pectin.. aka pectasol.. and or a chelator like OSR1 to mop up toxins or metals that are being mobilised.

    If you get some measure of relief, it could indicate that's whats happening.

    I did simplified and yasko.. for what it's worth.
     
  6. Sunday

    Sunday Senior Member

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    Uh, no, it isn't folic acid..it's methylfolate, and the distinction is very important for us. RichvanK has written on the difference between the two.

    The dosages of the sublingual mb12 and adb12 are deceptive; what you see on the label is not the dosage you get through the mucous membranes, it's much less. Freddd has a table somewhere on this thread, amount of time under tongue and dosage the body gets. Sorry, brainfog is coming over me so I'm not hunting for it.

    My understanding of this protocol is that a) for most of us, it's really important to take a long time to reach the higher dose levels; b) we are repairing long-term insufficiency of active B12s and cofactors. As we heal, we go on maintenance dosage, ,which is lower c) the awful reactions are very often signs of healing; the theory that we're testing is, in part, based on the idea that a reaction means you have a deficiency.

    A lot of people don't agree with this theory, and it may well be that some people cannot tolerate this protocol as it is. But for me, it's working: slowly, sometimes painfully, but it's working. Freddd himself has said that he doesn't understand how this protocol works, only that it has worked, in full or in part, for hundreds of people.
     
  7. richvank

    richvank Senior Member

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    Hi, powertool.

    I don't want to undercut freddd or the people who are doing well on the protocol he has suggested, but you might be a person who would do better using lower dosages and hydroxocobalamin rather than methylcobalamin, as in the Simplified Treatment Approach, shown below. This treatment has helped about two thirds of those who have tried it. I also favor running the Vitamin Diagnostics methylation pathways panel before starting the treatment, so you can see what your status actually is, and can also get some baseline values to compare with later, to see how you are doing on the treatment. It's hard to judge by symptoms, because of detox and die-off. Contact info for the panel is also pasted below.

    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]: ¼ tablet (200mcg) daily
    2. Actifolate [3]: ¼ tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with ¼ 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.



    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.


    Available from:

    Vitamin Diagnostics, Inc.
    540 Bordentown Avenue
    South Amboy, NJ 08879
    USA
    Phone:+1 (732) 721-1234


    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone.
     
  8. dmholmes

    dmholmes Senior Member

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    Hi Rich, what's the latest on the lab?
     
  9. aquariusgirl

    aquariusgirl Senior Member

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    Uh the dibencozide is a blend of adenosyl and folic acid, right?
     
  10. powertool4

    powertool4

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    Hi,

    yeah for me i think i handle the folate okay. I don't really see an effect from it but today i took 800mg of it and it seems to make the side effects of the b12 less. But there is no way i can take a 5000mg of methyl, i think i'd die. like literally fry my brain. The spacey feeling is not a great feeling at all!

    EDIT: you know what, i may have spoken too soon. It's hard to say if it's the folate .. but today i took my normal dose of b12 and upped my folate to 800mg instead of the usual 400. and also took 1/2 the b-right which gave me about 200 mg more in folic acid.
    I started having waves of anxiety attacks and headfog as soon as i posted this so it's hard to say whether its from the increase in folate or the b12. I am really not sure what is going on here but all i know is that anxiety attacks = body telling me something is not right. PERIOD. It's funny that when I stop taking all my b12, all my folate, etc. I have absolutely no mental issues whatsoever.
    Maybe I have some rare mutation or i'm some rare case where i just cannot tolerate high doses of b12 or folate. perhaps i am "lucky" enough to treat my deficiency with only 500mcg. who knows... more to update soon.
     
  11. powertool4

    powertool4

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    thank you Rich. i dont know why and neither do my doctors but something is wrong with me that is not discovered yet. And i react poorly to b12 and folate. If you look at my post above this one, i did not react too well to continuing my daily dose of hydroxy and a dose of about 1000mg of folate today. caused anxiety attacks in waves and feeling of uneasiness. This is the 5th time i am TRYING the b12 and everytime I get off my mental state returns to normal. I can only assume that it is not for me, at least not right now. Something is missing or maybe I just need to stop lying to myself and accept that my body just does better with lower doses?

    thank you for the methylation testing information. I have gotten a NutrEval test done and it has amino acids, organic acids, and methylation done but not extensively. Perhaps i can benefit from this test...

    i am awaiting results from a blood test that is checking my homocysteine, serum b12/folate, urinary MMA and if all comes out normal I am going to assume that i might just do fine with lower doses of b12 and folate or something else is the problem. Don't really know what else to do.
     
  12. winston

    winston Senior Member

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    Hi Sunday, my eyebrows are growing back! I have been on Synthroid for 20 years and had read about people loosing the ends of their eyebrows which happened to me. I think this "one" physical sign meant something important to me, it got me through the grueling nine weeks of no improvements on the B12s. How will you know what dose of B's you will eventually need.? I have not upped the adb12 that was the last thing I upped the first time on this protocol and it caused a huge crash for me causing me to quit the protocol. The ups and downs are hard. Wish there were more people posting about their improvements, sometimes I feel no one is getting better though I am better but far from well.

    Lena
     
  13. Freddd

    Freddd Senior Member

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    Hi Powertool,

    Everyone seems to be taking 2 or more folates, which is at least 1600mg of folate, in the ACTIVE form, meaning it's 7 times (i believe) stronger than folic acid



    Actually it DOES NOT MEAN 7 times stronger than folic acid. This is were a carefull reading pays off.
    1. The test dose was 5mg in this test. It was compared to the same dose of folic acid.
    2. 20% of population has zero conversion of folic acid to methylfolate so for these people the methylfolate was actually up to 10000 times or more stronger.
    3. 50% of population can't convert even 800 mcg of folic acid to methylfolate. So at a test dose of 800mcg the actual greater potentcy could range from zero to two times (if 400mcg converted)stronger or so.
    4. 800mcg of folic acid is as efftective as 5mg of folic acid for almost everybody and more makes no difference at all for anybody.
    5. 0% of the population can convert 5mg of folic acid to 5mg of methylfolate. So based on 800mcg conversion being typical, a 5mg dose of methylfolate is 6.25 times stronger than any dose of folic acid of 800mcg or more right on up to 5mg or 50mg of folic acid as only 800mcg is converted typically.
    So, when you give a lot of people 5mg of folic acid or 5 mg of methylfolate, people receiving 5mg of methylfolate have an average of 7 times as much methylfolate in their serum. You could compare 50mg of folic acid to 5mg of methylfolate and still have the methylfolate delivering 7 times as much methylfolate to serum. Or you could compare 800mcg of folic acid to 5mg of methylfolate and methylfolate still delivers 7 times as much. However, comparing 800 mcg of folic acid to 800mcg of methylfolate one might find that the methylfolate only delivers 1.1 or 1.2 times as much methylfolate.

    So in your situation of 1600mcg of methylfolate, it will deliver 2x as much methylfolate on the average as any dose of folic acid from 800mcg and up.

    This is an example of a study showing that the actual active vitamin is more effecticely taken into serum becasue it doesn't have to be converted. The difference between a 10mg hydroxyb12 and 10mg methylb12 is that the hydrtoxyb12 deilivers 10mcg of methylb12 to serum whereas the 10mg of methylb12 delivers 10,000mcg to serum making the methylb12 1000 times more potent than the hydroxyb12.

    However at 10mcg dose the delivery is 1:1. Same with 400mcg or 800mcg of folic acid and methylfolate, 1:1 approximately except for those who can't convert adequately.


    And it feels like an overload of dopamine if i had to describe the symptoms. Having mixed results, both good and bad from the b12 but the bad gets worse and worse until i have to skip a day. I dont see how i can tolerate 5mg of b12 when i'm barely cutting 1.5mg


    Methylb12 has a direct effect on the nerves, they need it for full functioning. Since it is happening in the first 15 minutes and you are taking 1.5mg sublingual the effects you are feeling are from the first 25-75 mcg of mb12 to actually make it into the serum. Does leaving it in your mouth for the next hour after that make any additional difference? It probably would make very little noticable difference going to 5mg or 10mg if the next hour of the 1.5mg makes no more difference. It would however reach equilibrium much faster.

    but there are so many warnings out there about high doses of folate actually increasing risk for cancer and tumors as it helps cancer cells replicate

    Again, paying attention to what yuou read is important as this was concerning FOLIC ACID, not methylfolate. The Cerefolin or Deplin package insert has references to rersearch indicating that methylfolate doesn't have the same effect. Don't confuse the effects of the real vitamin with the pseudo vitamin.


    As you are taking mb12 and folate, the folate isn't going to correct your macrocytic anemia without correcting b12 deficiency neurological problems which you find the feeling of that being corrected objectionable. Ironically, hydroxyb12 and cyanob12 both can do the same thing, correct macrocytinc anemia and let the neurological problems develop unhindered in at least spome people.
     
  14. Freddd

    Freddd Senior Member

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    Hi Aquariusgirl,

    Dibencozide is adenosylcobalamin, just another name. If you mean specifically the Country Life Dibencozide product, that contains 3mg of adenosylcobalamin and 200mcg of folic acid.
     
  15. Freddd

    Freddd Senior Member

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    Hi Lena,

    My suggestion is to stay at ONE 3mg adb12. That ratio appears fine for you. It is generally fully adequate for almost everybody. There is no reason to keep increasing it. The people who are improving don't keep saying "I'm improving". They ask questions about the next layer of symptoms that pops up and needs work. So it appears that they are always having problems. Even my posts are not about the 175 symptoms I no longer have, and haven't for years, but are about the 25 or so I still have. It's the pogo stick with strobe light effect. The person is only suspeneded in mid air when the light flashes.

    I'm glad to hear that you are doing better.

    How will you know what dose of B's you will eventually need.?

    If you mean b-complex, twice a day is probably adequate. As far as b12 is concerned, keep on with it. 5-10mg/day is probably enough to accomplish 95% of all the healing you are likely to have over the next year. Sometimes one just has to wait patiently while things heal. That takes months.
     
  16. powertool4

    powertool4

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    Hi Freddd,

    I didn't know that the cancer risks were involved with folic acid. Good to know.
    I do understand your explanation regarding the methyl going into the nerves and at first i thought that was it but I don't believe it is. I do notice that if i do take longer to dissolve it, the effects are STRONGER. the higher the dose, the stronger the reaction. the more days i take it, the stronger it gets. Absolutely no coming down of symptoms, it is positively correlated, in that more and more equals stronger and stronger. no equilibrium to be in sight. And this is the 5th time ive tested, and for me, even adenosyl and hydroxycobalamin effect me in the exact same way as methyl. The only difference is, methyl gets there faster and stronger. I had anxiety attack waves last night and it was from hydroxyb12 + 1000mg of folate. Something is not right and i believe my case to be unique. I just can't tolerate high doses of b12 everyday I guess.. My only theory on this is that since b12 (regardless of whatever form) and folate are huge players on neurotransmitters production, such as sam -e and all the serotonin, dopamine, norepinephrine, and not GABA, it may just be making my body make more and more neurotransmitters. more than I require. Perhaps there is something wrong with my body's ability to breakdown and metabolize the neurotransmitters, or perhaps my body just doesn't need that much b12 and isn't as deficient as i had thought.

    The latter will be confirmed once i get my test results next week taht will check the following : serum b12, serum folate, anemia profile, urinary MMA, homocysteine. If all of these come back normal, i will assume that whatever dose i am that that makes me feel comfortable without side effects, is the dose that my body needs. But this is to be determined at the moment.

    EDIT:
    I must also add this. I went thru my testing and hadn't noticed, my glutathione levels are actually really high. 1,459 (ref range >669 mmol/L) so if we take Rich's methylation > glutathione depletion theory into consideration, perhaps my methylation has no blocks.
    Plasma Coq10 was low however.
     
  17. New member/poster. I have high levels of B12 and other nutrients in the blood, but low levels in the red blood cells. Would this discussion of the different B12 defiicieincies apply to this kind of blood work? Thank you.
     
  18. richvank

    richvank Senior Member

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    Hi, Michael.

    High B12 in the blood serum can be an indicator that the cells are not able to use B12 properly, that is that there is a functional B12 deficiency. A better measure is urine methylmalonic acid (methylmalonate). This is measured in urine organic acids tests, such as the Genova Diagnostics Metabolic Analysis Profile, which is available from www.directlabs.com without a doctor's order. If methylmalonic acid is elevated, in means that B12 is not being used functionally as it should be. In CFS, methylmalonic acid is very often found to be elevated. On the same panel, if figlu (formiminoglutamic acid) is also elevated, this combination suggests that a partial block in the methylation cycle is very likely. This is found in most people who have CFS, and the Simplified Treatment Approach is designed to lift this block. It has been found helpful in at least two-thirds of those who have tried it.

    Best regards,

    Rich
     
  19. Rich: Thanks for the quick reply. I'm floundering a bit, as I'm not sure what questions to ask. I'm not a CFS patient, althogh my wife struggled with symptoms for many years and is doing well. I did have a bone marrow bioposy a year ago as the hematologist was trying to determine why there were high levels of nutrients in the serum (besides, B12, folate, and iron), and low in the red blood cells. Also slightly elevated MCV for a few years prior. Not too much else abnormal in the blood work that I know of. It's a year later, with constantly rising MCV, and I'm waiting for a B12 blood test to come back this week (some kind of involved testing -- two weeks worth -- where I think they look at the entire cycle of B12 production).

    If the hematologist has no answers after receiving the test back, and the B12 is getting lower in the red blood cells, I was trying to determine and get suggestions as to what to do next on my own or with an alternative doc. If you can make any suggestions, much appreciated.

     
  20. Freddd

    Freddd Senior Member

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    Hi Powertool,

    Looking at everything you have said so far you appear to be in the several percent with the strongest reactions, a hypersensitive like me. At 3 months into methylb12 there was no indication of my startup reactions decreasing, no sign of equilibrium in sight, just like you. It was during this period when I could easily tell the differences between various brands by how well they absorbed or not, and which effects they had. Basically the brands with the most startup reaction were ratest highest. The ability to cause major startup reactions also had a 1:1 correlation with the activity against symptoms that had started to decline such as burning bladder and tongue. The one brand with no noticable effect also allowed the symptoms to start wporsening within 3 days and terribly within a week.


    The amount of startup reaction appears to be a very clear indicator of the severity of damage and "depth" of the deficiency. I had major neurological, mood and personality startup effects starting in 5 minutes after the first b12 hit my mouth and building strongly for 15 minutes and contiuing to increase until a few minutes after it was gone. This made very clear immediately that length of time in tissue contact affected amount absorbed.

    I happened to interpret it differently from you. I had major mood volitility through about 9 month. Intensity of startup showed no hint of decreasing as long as I was taking 1-5mg/day sublingual, unless it was an brand that didn't absorb well, then when I switched back to the most potent brands it came on like gangbusters again. It was after several months of such experiences that I was truely getting tired of that I decided to see what happened if I increased the doses. When I went up to 10mg/day, not much more happened at all. Same with 20mgs. However within days of going to 20mgs the whole startup reaction started diminishing rapidly until taking a sublingual made no noticable difference at all. That left just the constant emotional volititlity and changes occurring for the next 6 months or more. I had major neurological damage before starting. I had all the excessive pain phenomina associated with FMS. I had major mood and personality changes, Mr Hyde had dominated my personility for years. After a year my now exwife found the total of the changes intolerable after she had adjusted slowly to the changes that had occurred over 30 years were now reversing over a period of a year. But it was not evident that they were reversing until the end of the pronounced batch of changes.

    While things were changing it was hard on everybody around me.

    So let's consider your experiences. You had similar but lesser effects from the hydroxyb12 and the adenosylb12. Have you reached a stable dose of 3mg on the adenosylb12? Let's consider the hydroxyb12. As the channel limit of conversion is in the area of 10-30mcg a day, and you react to it similarly to the active b12s, then it is clear that you are able to convert to active forms, unlike me. It is also clear that you are hypersensitive to small amounts suchj as 10-30mcg of active b12s. What that says to me is that you are extremely deficient. What it implies is that you don't reabsorb well so that the little bit of active b12 that doesn't come out in the urine is going out rapidly in the bile and not able to reach an equilibrium on several mgs of sublingual. Let's go over what quantities we are talking about here. You say you are taking 1.5mg of sublingual. 1500mcg. Of that in 45 minutes there is estimated absorbtion of about 200-400mcg, in 15 minutes perhaps 50-100mcg. Of that 99% of the unbound b12 is excreted unchanged in the urine within 24 hours according to much research of all forms of b12 across the board. It's also suggestive that you do not bind b12 well to the transport system. The methylfolate is critical in that area. It is quite possible that the reason that the methyfolate has so much effect is that it is increasing the amount of b12 bound and utilized.

    The combining of the pharmacokinetic data on all forms of b12 indicates that about 6 parts per million of a given dose is still in the serum 2 weeks following dosing. However, not all of it is excreted as the serum is maintained by b12 coming out of the much larger volume of distribution of the rest of the tissues with half of the total in the body being in the liver. The total body quantity of cobalamin of all active and inactive forms is estimated to be in the range of 2.5 to 5mg spread through 50-100 liters of distribution. If it were 5mg with a volume of distribution of 50 liters, that is 50,000 ml with 5000 mcg of b12 that comes out to 0.1mcg/ml at the high end. The blood contains the least amount of b12 per unit volume of virtually any tissue unless one has been very deficient for a long time. It takes a lot of b12 going through the body to reload the body by diffusion. Each little increment of change is felt.

    There is NO research done at all on the assumptions of daily dosing and the recharge of all the tissues in the body. 5mg of inactive b12 injected over a period of 2 weeks a 1mg each 2-3 days does not actually load the body. If 20mcg per injection is bound and then transported into tissue, but routine liver loss is 10 mcg a day and at 10mcg available per day for placement in the tissues it takes approximately 100 days of 1mg injected per day for each 1mg body deficiency to be made up. If a person is severely deficient, say has 4mg to accumulate in the body to be "normal" with b12 availability in the body that could take more than a year at 1mg injected per day of inactive b12 assuming that a person's body functions flawlessly at converting, binding and transporting and reabsorbing b12. So, when small amounts are taken and some part of the system doesn't work correctly, and it is the most complicated multipart vitamin transport system in the body, a person may not have enough time in their life to ever reach equilibrium. Taking large amounts of active b12s allows the transport and binding system to be bypasssed and delivers active b12 to the tissues. When the amounts are large enough it just doesn't matter how fast the liver is dumping it or even total lack of reabsorbtion, the body will come up to equilibrium. Each increase in body tissue levels of b12 increases mitochondrial and neuronal activity and allows all b12 requiring reactions to take place.

    So what it amounts to is that my experience and that of people on another board who have bneen at this for a a couple of years are the only people on whom this restoration of body levels of cobalamin have been tested and that is without organ and muscle biopsies for testing. Instead it is based on the pattern of respponse to doses which is as I have described.


    My experience was different from you in one huge way. The methylfolate was not available so I didn't add that in until years later as was the same with the other 4 hypersensitives I was working with on this. One of these hypersensitives and many others reporting to me over the years reported that "taking the methylfolate made the b12 work massively better, causing more massive startup symptoms than the mb12 had previously" and "it made the mb12 come alive". Also, I started the adb12 9 months after the mb12 and went through a short round of startup effects alll over again. I kept them short by keeping tablets in my mouth all day predicted by and based on what I had learned with the mb12. Startup was over in 3 days. Once I was taking 20mg a day of sublingual b12 in divided doses, body equilibrium was reached in about a week.

    When I tried 51mg dosing with the adb12 there were again several days of startup but by the fourth or 5th day equilibrium was reached and startup ceased. It was a pretty pure take on just the mitochondria in the neurons getting activated. 50mg sublingual dose of methyb12 casued a different neuron effect which never did reach equilibrium in the CNS on 50mg sublingual dose a day. When I started injecting it took about a week of 7.5-10mg/injection once a day to reach equilibrium at that level. It took 3 days of 10mg 3x or 7.5mg 4x per day to reach CNS equilibrium.


    As the doses of mb12 you are taking are demonstrated to be below the level for hypersensitives to reach equilibrium, it is predictable and no surprise that you have not reached equilibrium. As there is a strong dose proportionality below 2-3mg/day injected (ie 10-15mg/day sublingual approx)
    of course you perceive a strong dose proportionality as you are taking considerably less than that. So far your reactions are all completely predicatable based on my past personal and observed experience and you are responding virtually identically to me and other hypersensitives with the one difference being that you appear to interconvert forms more easily than some of us.
     

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