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B12 Injections - how long can continue to have these weekly inj.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by ottiebow, Jan 30, 2012.

  1. ottiebow

    ottiebow

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    Hello

    I've been having B12 injections, (prescribed by a private clinic) 1mil Hydrox. per week.

    I've think they maybe helping, i've had about 20 so far. and obviously want to keep having them weekly.

    Just wondered for how long can you keep having these injections? is this something you can have more long term, if it is helping you? if so how many months do people keep on these injections?

    look forward to hearing from you
  2. Freddd

    Freddd Senior Member

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    Hi Ottiebow,

    EIther until you get tired of not having much in the way of results or you get tired of paying for it. Read http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics to find out what could really work. Daily sublingual 5 star methylb12 and adb12 with metafolin and cofactors can be 100-10,000 times more effective.

    I've think they maybe helping, i've had about 20 so far. and obviously want to keep having them weekly.

    If you want to recover from CFS/FMS it's going to take a lot more than this. And if you do start healing you will not "think they maybe helping".

    While there is some disagreement about which protocol to do, there is no disagreement that weekly injections won't do it.
  3. Jenny

    Jenny Senior Member

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    I know quite a few people who have been helped considerably by weekly B12 injections. I'm not sure how long they have continued though.

    On Cure Together, 45% of respondents reported moderate or major improvement on B12 injections. (No data on amount, frequency, or length of treatment time though.)

    http://curetogether.com/Chronic-Fatigue-Syndrome/treatments/

    About 300 patients on Patients Like Me are having B12 injections. 40-50% report moderate or major improvement. You would have to look at individual reports to see amounts and frequency.

    http://www.patientslikeme.com/treatments/show/303-vitamin-b12-injection-side-effects-and-efficacy
  4. ottiebow

    ottiebow

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    thanks for this info.

    Fredd - I have to go quite slow with my treatment as I often react to treatments badly.

    I'm also on a ton of supplements, special diet, and magnesium injections
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    One mg a week is very low. I think most who get only one injection a week get a much larger dose. Some doctors recommend injecting 5 mg per day.

    Sushi
  6. ottiebow

    ottiebow

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    My Dr said I can up my dose, gradually, so will try and do this over next few weeks.
  7. Freddd

    Freddd Senior Member

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    Hi Jenny,

    I have participated over at Curetogether. I'm part of the statistics. I inject 10mg 3x per day of mb12. They lump all that stuff together so you don't know what the sucessful ones are doing. Also, they have designed their data collection very poorly. They mix up "feel better" stuff with real healing and don't distinguish. In a fully expanded list of b12 deficiency symptoms, signs and characteristics, weekly hydroxycbl injections pay help as much as 2/3 of people with 2 or 5 or 10 or 20 symptoms. It might have just enough effect to be decieving. As CFS, Fms, MS, Parkinson's, Alzheimer's, ALS, Autism, SupraNuclearPalsy and no doubt others all have been chracterised as having low CSF/CNS cobalamin levels and in the ones so tested, elevated HCY and/ort MMA in the cerebral spinal fluid, regardless of body serum level, there is the additional problem of the CNS symptoms. The Japanese research has found that daily mb12 doses in the range of 50mg/day help with those CNS symptoms. My experience is that a minimum of 30mg a day injected subcutaneously in 3 injections does relably penetrate the CNS. As mb12/adb12 generally affect about 100% of the active b12 deficiency symptoms and Hycbl affects up to about 1/3 of symptoms and is completely ineffective for 2/3 of symptoms for even those in whom it is effective, and affects none of the studied symptoms from the universe of sometimes affected symptoms, in about 1/3 of subjects. Mb12/adb12 of 5 star quality is approximately 100 to 10,000 times more effective than hycbl no matter HOW taken.

    So if you have some response to weekly hycbl you would likely do marvelously on daily 5 star sublingual mb12 and adb12 along with Metafolin and the other needed cofactors.

    Read http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics to find out what really works well and what is needed to do it effefctively and safely.
  8. Jenny

    Jenny Senior Member

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    Hi Freddd

    I agree that the Curetogether data is not very specific. However, these data and responses on the Patients Like Me site (as well as the responses from people I know) suggest that weekly hydroxy B12 injections are helpful to some, whereas you seemed to be implying that it is a waste of time. Some of us will not be able to afford or obtain large doses of injectable B12, and would be worried about taking megadoses just on the basis of anecdotal evidence.

    I improved on 1mg hydroxy B12 injections weekly, but taking 5mg methyl daily sublingual plus 800mcg metafolin as well as the hydroxy for months has done nothing. (I know you'll say add the adb and other things, and I'm thinking about that.) But for me it is very difficult to track the effect of a particular treatment as my symptoms fluctuate so much.

    Jenny
  9. Freddd

    Freddd Senior Member

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    Hi Jenny,


    suggest that weekly hydroxy B12 injections are helpful to some, whereas you seemed to be implying that it is a waste of time

    In any given study for any given set of symptoms (from the hycbl effective universe) 1/3 (20-40% actually) don't have a response. 1/3 is an approximate averafge for convienience. As hycbl is potentially effective against about 1/3 of the entire universe of active b12 deficiency symptoms, that leaves 2/3 of symptoms unaffected for everybody and essentially 100% of symptoms unaffected for 1/3 of people, it is certainly feasible that "hydroxy B12 injections are helpful to some". For 1/3 of people "it is a waste of time". For 2/3 of symptoms "it is a waste of time". Further even for those things for which it is effective in people for who it is effective hycbl is of relativly limited effectiveness.

    "5mg methyl daily sublingual "

    What Brand? Enzyamatic therapy or Jarrow? Those are the two most effective based on a head to head brand comparison of 10 brands and some less specific testing by me. Most brands may not be be as effective as an hycbl injection. No other brand even came close in my tests. A couple of more have been nominated as possibly very good.

    Were you taking the Metafolin when you tried the mb12?

    How did you take the sublingual? 45-120 minutes under the lip or tongue? That's what it takes to be effective with 15-25% absorbtion typically.


    Some of us will not be able to afford or obtain large doses of injectable B12,

    For most people there is no need whatsoever for that. The two 5 star sublinguals are more effective and reliable than almost any given batch of injectable mb12. And even those good batches of crystal are often ruined by preparation in the light or exposure to light in the vial or syringe.


    After body saturation is reached a person can try a 50mg sublingual dose to see what the effects of a 7.5-12.5mg injection would be like, both with mb12 and separately with adb12 as the two can have separate quite different reposnses.

    would be worried about taking megadoses just on the basis of anecdotal evidence.

    And of course the Japanese studies of 50mg/day wouldn't influence you. Safety tests have been done with uremics that prevents rapid excretion of b12. Also ignoring the usage of multiple IV infusions of 35,000,000mcg for cyanide poisoning. Repeated 35,000 mg doses make 30mg/day look pretty small. I guess that what size "mega" is comes out pretty relative.

    just on the basis of anecdotal evidence

    "anecdotal evidence" can be pretty relative too, especially when there are applicable Japanese studies. Of course as they are early studies and can use a great deal of refinement they are not perfect. I supose it depends whether you feel you can wait another 50-100 years for the answers you need for your life and health.

    In this real life game of YOU BET YOUR LIFE, we each have to make our own decisions, whether we choose to trust 60 years of research on a Nobel prize winning inactive lab mistake instead of the real b12s or decide to take a chance on domestic and foreign research of reaL B12 and bleeding edge non-accademic amatuer research by some guy who was dying nine years ago and is now healed. Every doc I went to was perfectly willing to watch me die by the book instead of solving the problem.

    In any case you would have to be prescribed the injectable mb12 and I wouldn't even suggest it until you were SURE that it would help by aqppropriate sublingual trials.


    particular treatment as my symptoms fluctuate so much

    Now that is something we might be able to help you pin down a little by at least eliminating two major causes of symptom fluctuations and collectively quite a bit of experience. One of the major causes for major symptom fluctuations is paradoxical folate deficiency and/or an induced folate deficiency for other reasons and/or periodic low potassium BECAUSE you are having some success with hycbl. And these you have to test for yourself by knowing how, if you want to and fit the criteria. If you do have either or both of those going on at various times there is the possiblity of significant improvment. Good luck and have fun.
  10. ottiebow

    ottiebow

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    I improved on 1mg hydroxy B12 injections weekly, but taking 5mg methyl daily sublingual plus 800mcg metafolin as well as the hydroxy for months has done nothing.

    Hi Jenny

    Thats good that you noticed improvement on 1mg of b12 injection. How many injections before you started to notice benefits and do you still continue with the injections for the time beeing?
  11. Jenny

    Jenny Senior Member

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    Freddd - thanks for these suggestions, but we've been through what I'm taking on another thread. 5mg Jarrow Mb12, 2 hours under tongue taken with 8mg metafolin. I've taken these for three months, with no change. I don't take any supplements with folic or folinic acid.

    Out of your long list of symptoms, I only have a few: muscle and joint pain, rapid heartbeat, palpitations and arythymias, dizziness, severe exhaustion and weakness, constant flu/malaise feelings, probs with temp control. I'm not sure of the point of this long list - many of these are symptoms of a whole range of other illnesses. And how many does one need to have for a diagnosis of B12 deficiency? Are there some which are key, and others not so important?

    I suspect that some people with ME have your B12 deficiency condition but many don't.

    ottiebow - sorry to hijack your thread! I improved a bit after about 6 weeks of weekly B12 injections. I've been having them now for about 8 months. My consultant suggested continuing for another 6 months at least.
    justy likes this.
  12. Freddd

    Freddd Senior Member

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    Hi Jenny,

    Your situation is rare but an opportunity to for me to learn something if you will bear with me and answer some more questions. You are the second person I've discussed this with in the thousands that have tried various forms of cobalamins that has reported this greater effectiveness of hycbl injections. There is ALWAYS a reason, but sometimes the reason(s) can be difficult to understand. This is a learning situation.

    Since you have a response to b12 that is considered definitive as to having b12 deficidency symptoms. People without symptoms don't respond.

    I'm not sure of the point of this long list - many of these are symptoms of a whole range of other illnesses

    And right there you point out the difficulty of recognizing b12 deficiency. A nurse wrote a book, B12 DEFICIENCY CAN BE HARD TO DIAGNOSE and she explains why. It is usually diagnosesd as many many other named diseases. It has no unique symptoms. Instead it has hundreds of symptoms that overlap many many other disorders. All those symptoms are b12 deficiency symptoms. The list is sizable becasue it is the combination of severl lists, some USA lists, a country that based b12 deficiency diagnosis on cyanocbl, the UK using Hycbl, Canada, Auastralia, New Zealand (English speaking with a mix of cobalamins used), India (English based medical literature) with a fair amount of mb12 usage and Japan, with mb12 usage and a sizable body of research on mb12 and neurological disease and the highest "low" level in the world, 550pg/ml. Then things that are dismissed with one line, ie peripheral neuropathy being expanded to many symptoms of peripheral neuropathy, and muscle pain broken down into many kinds of muscle pains, all as reported by people as having responded to various b12s and cofactors.


    Out of your long list of symptoms, I only have a few: muscle and joint pain, rapid heartbeat, palpitations and arythymias, dizziness, severe exhaustion and weakness, constant flu/malaise feelings, probs with temp control


    So for instance, under muscle pain on the list there are many different muscle pains. These variations allow progressions to be seen, and deifferent ones have one or more different causes. Below are what appear to be relevant categories with more detail than you provide. Can you indicate which ones of these apply to your symptoms and if there is a better description not included could you include that please. Wpuld you also please indicate how hycbl has affected each of the symptoms you have?


    burning muscle pain
    accumulating muscle pains following exertion
    sore muscles throughout body
    lack of muscle recovery after exercise
    exercise does not build muscle
    extremely sore neck muscles reversing normal curvature of neck
    exercise deblitates for up to a week, making things much worse
    painfully tight, stiff muscles, especially legs and arms
    frequent muscle spasms anywhere in body
    muscle pain especially around attachment points to bones
    Eighteen severely tender muscle spots of FMS
    Widespread muscle pain responding to NSAID
    Bursitis
    Joint pain
    Pain in weight bearing joints
    morning joint stiffness

    mild to extremely severe fatigue
    continuous extremely severe fatigue
    easy fatiguability
    severe abnormal muscle fatigue up to and including apparent paralysis leading to death
    weakness
    exercise intolerance

    paleness
    rapid heart rate
    heart arythymias
    shortness of breath
    heart palpitations
    weak pulse
    congestive heart failure
    arteriosclerosis


    dizziness - even unable to walk
    dizziness - even unable to stand
    vertigo
    ataxia
    ataxic gait only in dark or eyes closed
    unsteadiness of gait
    fall right over with eyes closed

    Are there some which are key, and others not so important?

    Not really. As they are ALL symptoms of other things as well, it's the pattern of symptoms, groupings from various body systems, that end up pointing at b12 deficiency. Some symptoms are more severe or dangerous or life impacting and others are very common and relatively benign in themselves. Dandruff isn't considered an earthshaking disease BUT it does indicated a certain type of malfunction in epithelial tissues. The traditional triad of symptoms is:

    1- "Beef red" burning tongue
    2 - Abnormal fatigue
    3 - Tingling in hands and/ot feet

    The reason this was effective at diagnosing b12 deficiency is that it is 3 symptoms, each from a different category. So there is an epithelial breakdown, a neurological breakdown and mitochondria malfunction. The burning red tongue doesn't make an apperance until a person is in really bad trouble and all by itself is going to shout severe b12 and/or folate deficiencies. Typically people have a multitude of symptoms across at least 3 different systems in the body, ie epithlial tissues, neurological and mitochondrial. However, it has to start somewhere. There is a "first symptom" that just isn't diagnopsable except by trial and even then might not respond because it needs mb12 and zinc or something loke that. A person with 200 symptoms of every kind is a slam dunk. A person with 10 symptoms in 1 area is very questionable and across 2 areas looks possible. A person with 50 symptoms across 3 areas is almost always deficient. You have already demonstrated b12 deificiency so that is not at question

    I have been working on a different model, one based on a combination of 5 deficiency patterns; adb12-body, adb12-CSF/CNS, mb12-body, mb12-CSF/CNS and methylfolate. Interestingly, the muscle pains alone have variations that point to each of the 5 deficiencies. Further in the b12-trial area, there are 4 different trials that can be done, of which you have tired one. There is one trial for each type of deficiency. People can be independently responsive to each of the 4 deficiency patterns. So for instance, you tried an mb12-body but haven't done the other 3.


    I suspect that some people with ME have your B12 deficiency condition but many don't.

    I wouldn't bet on that. Do you have ME? You have demonstrated your b12 deficiency condition by responding to hycbl. My b12 deficiency conditions, all 4 of them, are not in doubt. What ME doesn't appear to point at is a body-mb12 deficiency, though it can be effective in some for various reasons, and that is the only one you have trialed along with folate.


    So the question arises, what can block mb12 responsiveness besides folic acid and folinic acid. The answer is inclusive of but not limited to, glutathione, NAC, whey, glutathione precursors and a fair number of drugs known and unknown. So Dilantin, Metaformin and others can be a problem. Are you taking any of these items?

    What an injection (1000mcg IM presumed, is that correct?) of that type does is for a few minutes raise the serum level high enough to penetrate the CSF/CNS even in people with difficulty getting it in there.


    I improved a bit after about 6 weeks of weekly B12 injections. I've been having them now for about 8 months. My consultant suggested continuing for another 6 months at least

    You may find that you need them indefinitely to maintain improved condition. Does a hycbl sublingual have the same effectiveness for you? Have you tried them?

    Would you be willing to try the other 3 trials? Two of them are single dose trials. After you get more detailed on the symptoms we can have a better idea.
  13. aprilk1869

    aprilk1869 Senior Member

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    Jenny, do you eat nori or anything like that?

    "B12 in Tempeh, Seaweeds, Organic Produce, and Other Plant Foods

    Summary: The only plant foods which have been tested for B12 activity using the gold standard of lowering MMA levels in humans are dried and raw nori from Japan. Dried nori made MMA status worse, indicating that it can reduce B12 status and can possibly harm people who are B12-deficient. Raw nori kept MMA levels about the same, indicating that it didn't harm B12 status, but it did not help either.

    No food in Europe or the U.S. has been tested for lowering MMA levels. Thus, the discussion about whether Western vegans can get B12 from plant foods can, and probably should, end here (until proper research is conducted). Because so many plant foods have failed other tests that do not measure up to the MMA lowering test, and because there are so many false rumors being passed around, the studies of B12 in plant foods are examined in detail below.

    http://www.veganhealth.org/b12/plant "

    There is a lot of interesting info at the link above but I have only skimmed through it.
  14. Jenny

    Jenny Senior Member

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    Only very occasionally (maybe once every 2 months). I'm afraid I don't know what MMA is.
  15. Jenny

    Jenny Senior Member

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    Hi Freddd

    See above. My main problem is a constant severe flu-like malaise/hung over feeling.

    In the first few months of 1000mcg Hydro B12 injections weekly, I went into a near remission - all symptoms better. But I've had ME for 30 years, and get these remissions, even if I'm taking no supplements or medications. They tend to happen the the spring/summer, and I started to improve in May. I had also been doing lots of other things as well (eg increasing CO2 with rebreathing mask, valacyclovir, lots of supplements to improve mitochondrial function.)

    As is usual for me, I went into a relapse last Sept and I'm still not as good as I was last summer, but better than I was last winter. So it's possible that something is helping - could well be B12 injections, but could be all the other things, or just the natural course of my illness. I can't say for sure that I responded to any of these things - correlation is not causation. I think it's worth continuing the B12 injections though as they might be helping, and they are free for me on the NHS.

    In answer to your other questions, no I'm not taking whey, glut, NAC or any othe the meds you mention.

    I tried hdryo sublingual when I did Rich's protocol for a year or so a while back. No improvement.

    I'm considering the other 3 trials, but I'm having a course of lymph drainage massages at the moment and want to evaluate this treatment without starting anything else at the same time.
  16. aprilk1869

    aprilk1869 Senior Member

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    MMA is methylmalonic acid and is reduced by adb12 (dibencozide) whilst mb12 reduces homocysteine. Many studies show that b12 blood tests can be normal but MMA and/or homocysteine can be elevated showing that there's a deficiency. Dried nori increased MMA levels by 77% meaning it must have interfered with adb12 in some way.

    AdB12 is needed by the mitochondria. If the mitochondria aren't getting enough adb12, along with some other nutrients, they won't be able to create the energy your muscles require. That's why adb12 is an important part of Freddd's protocol.

    Over the years it's been claimed that vegan foods such as spirulina and nori contain b12 as it increases blood levels of b12. However it's since been proven that these foods contain "analogues" of b12 which can compete for absorption. I guess you could call it a paradoxical b12 deficiency. If you consume a lot of these foods then it could potentially cause you a lot of problems.

    Marmite is vegan and apparently contains b12 however I've not been able to find any info as to whether it's a good source or b12 or not.

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