The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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B12 injections are the bee's knees... wish I would have tried them 15 years ago

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by shoponl, Oct 6, 2018.

  1. shoponl

    shoponl

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    Let me start out by saying that I don't have ME/CFS. But I have something that resembles some aspects of ME/CFS, and it's not MS, so I've spent a lot of time reading the forums here.

    In 2003, I began experiencing exhaustion, post-exertional fatigue attacks, daily "slowdowns" around 5PM, tingling, fuzzy "tip-of-my-tongue" memory, occasional breathlessness, mild chemical sensitivity, and brain fog. When I feel asleep while waiting for a doctor, she tested my B12, and it came out around 300. I began taking methylcobalamin sublinguals, and my serum B12 levels climbed to over 1000. Later I added adenosylcobalamin and hydroxycobalamin sublinguals and drops. Sublingual B12 was the first thing that helped me, but it did not cure me.

    Over the past 15 years, I've tried an insane number of different supplements and diets. I've checked my genes and taken many tests (an MRI showed that I don't have MS). Reading about health and watching online lectures has become my main hobby (hello PhoenixRising!). I take a packet with a couple of dozen tablets and gelcaps each day to keep the worst symptoms at bay: methylfolate, Bs, vit D, minerals, NR. Many things helped a little. Along the way, I've found a couple of standouts that help reverse a slowdown (fatigue attack): potassium citrate or potassium gluconate in water, and Allithiamine capsules.

    This summer, I read that B12 serum levels will rise after supplementation, but the serum level may not reflect the body's intracellular B12 status. I have normal (>500) serum b12, normal serum MMA, normal homocysteine (<8), no macrocytosis, no anemia, a normal Spectracell B12. Absolutely no sign of a functional B12 deficiency on paper. However... since my symptoms resemble the neurological effects of low B12, I called around and discovered that my doctor offers 5mg methylB12 shots for $35. Weight-loss clinics in my area also offer 1mg Hydroxycobalamin for about the same price. Hey, only experiment number 2,428 over the past 15 years, worth a try for $35.

    And... that was it. My first methylB12 shot resulted in a headache, metallic taste, chills, visual-field sharpening, and the lessening of my exhaustion for a few hours. Went in for another shot a week later, and this time the fatigue lifted for almost a day, and the headache went away faster. Six shots and a couple of months later, I am feeling a thousand percent better. I've even jogged a little... ran, if you can believe it. My tingling is gradually fading. My memory is sharper and my mood is brighter.

    Against all odds, and despite all my normal B12 blood test results, injected (not sublingual) B12 is working to heal my brain and peripheral nerves.

    $35/shot adds up. A couple of weeks ago I bought a 100-pack of 1mg hydroxycobalamin "Rotexmedica" ampules online from goldpharma.cn for $83. Rotexmedica is a German company, and the ampules were shipped from a German pharmacy. 1mg hydroxy isn't as strong as 5mg methyl, but it's easier and cheaper to give at home. I've self-administered two shots so far, the latest tonight after a slowdown. 10 minutes later, I'm feeling sharp and normal again. It's been five days since my first self-administered shot, so I guess that's how long 1mg B12 lasts for me right now.

    So that's my story. If anyone has any idea why injected B12 would work on my brain and nervous system despite having normal blood tests, I'm all ears.
     
    Last edited: Oct 7, 2018
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  2. shoponl

    shoponl

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    Found this on a Danish website about B12:

    "As there is no ‘golden’ test, patients with clear neurological symptoms, and no other obvious cause for those problems, should be treated with B12 injections. When clinical improvement occurs the treatment should be continued. There are numerous stories of patients who have benefited from B12 treatment, despite normal blood results."

    https://stichtingb12tekort.nl/weten...english/misconceptions-about-a-b12-deficiency
     
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  3. Chiron

    Chiron

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    Methylb12 makes me kind of crazy and after some genetic investigation it's because of poor de-methylation. So I use hydroxob12 only. I've been struggling with iron deficiency anemia for months now, and despite getting iron IVs my hemoglobin has not been rising. Well, they did a B12 test and it was in "normal range", but after developing some restless leg syndrome I had the intuition to try doing B12 injections. In two weeks my hemoglobin went up almost 20 points (which is fast for me) and the neurological stuff went away.

    I have MTR/MTRR mutations indicating increased need for B12 but I never took it seriously until now because I have a meat heavy diet. I must just not absorb it properly.
     
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  4. shoponl

    shoponl

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    A high folate level may induce B12-deficiency symptoms if a person's B12 transport is weak. The study below looked at one variation, but I assume there are others. I've reduced my daily methylfolate supplement from 800mcg to 400mcg as a result.

    "The 776C→G polymorphism of the vitamin B-12 transport protein transcobalamin gene (TCN2) (rs1801198; Pro259Arg) is associated with a lower holotranscobalamin concentration in plasma... When folate intake was >2 times the Recommended Dietary Allowance (800 μg), GG genotypes had 6.9-fold higher odds of neuropathy than CC genotypes"

    https://www.ncbi.nlm.nih.gov/pubmed/27733392
     
    Last edited: Oct 6, 2018
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  5. shoponl

    shoponl

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    Another possibility I just thought of... injections raise the serum B12 massively. I had a serum B12 test run a week after having a 5mg methyl injection, and my level was over 2000. Sublinguals only placed me in the 500-1200 range. Maybe forcing the B12 level so high overwhelms some kind of block?
     
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  6. Hip

    Hip Senior Member

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    Have you looked at subacute combined degeneration?
     
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  7. Moof

    Moof Senior Member

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    I don't fully understand the reasons behind the improvements, but I too have benefitted enormously from B12 injections. My GP thinks I was very deficient; I'd had h. pylori infection in my stomach for years, which caused gastritis, which in turn damaged the parietal cells that we rely on to absorb B12.

    People also absorb B12 less well as they age, and it's frightening to wonder how many cases of dementia in elderly people are caused simply by a vitamin deficiency that could be put right with a course of cheap injections.

    As well as ridding me of the classic symptoms of B12 deficiency, it has improved my ME too – that's the bit I don't really understand, but it seems to work for a good percentage of patients.

    If anyone in the UK is thinking of trialling self-injection, I'm happy to send them links to the German company that supplies the B12 ampoules and to a UK company where you can by everything else you need very cheaply. The cost of 100 injections, which is at least two years' supply, usually works out at about £65 (it varies, depending on the €/£ exchange rate).
     
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  8. Hip

    Hip Senior Member

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    That's not goldpharma.cn you are talking about by any chance, who sell B12 hydroxocobalamin injectables very cheaply?
     
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  9. Moof

    Moof Senior Member

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    No, it's versandapo.de:

    https://www.versandapo.de/vitamin-b12-depot-rotexmedica-injektionsloesung-100x1ml-pzn-03862305

    I haven't come across Goldpharma before, but I guess they're probably quite similar?

    EDIT: The UK company that sells syringes, insulin needles, sharps bins and medical wipes very cheaply is medisave.co.uk – getting everything (other than the ampoules) from one place saves quite a lot on postage.
     
    Last edited: Oct 7, 2018
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  10. brenda

    brenda Senior Member

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    @Moof

    I read that ampules have a shelf life of 18 months.....comment?
     
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  11. Moof

    Moof Senior Member

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    I go on the 'use by' date, @brenda. How much you buy at once depends on how frequently you inject, of course – the loading dose is every second day until you're seeing no further improvements, which for some is likely to be an extended period but may only be a couple of weeks for others. Once beyond that phase, everyone has to work out how frequently they need maintenance injections, which again will be different in each case. But anyway, the manufacturers are best placed to know how long their products keep for, so I just stick to their recommendations.
     
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  12. Hip

    Hip Senior Member

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    That's a useful source, thanks.



    goldpharma.cn are a longstanding reliable pharmacy that have a huge range of pharmaceuticals. They are one of the trustworthy prescription-free pharmacies listed in this post. Goldpharma requires you complete an online questionnaire in order to get a prescription for the products you want to buy, but this is free and takes only a minute to do.

    You can search their website for B12 hydroxocobalamin, but have to register an account before you can see the details and prices.

    But just to give an example, one injectable hydroxocobalamin product containing 200 x 1000 μg ampoules is priced at £69. Shipping to the UK is £6 + 10% of the product price (ie, another £6.90 in this case).



    I think there would be more concern about shelf life with methylcobalamin ampoules, since methylcobalamin especially when dissolved in water is very sensitive to light, and breaks down under light exposure. Whereas hydroxocobalamin does not suffer from this problem.
     
    Last edited: Oct 7, 2018
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  13. brenda

    brenda Senior Member

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    @Moof

    It says mine are good till 2021. Relief.
     
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  14. Mary

    Mary Moderator

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    @shoponl - I'm very glad to hear your story!
    This is absolutely true! Most doctors seem to go by serum levels of B12, which in many cases are just about meaningless.

    I did injections of 5000 mcg. methylB12, 3 x a week (self-injected) for a few years and noticed no difference in how I felt, despite high serum levels of B12.

    I tried sublingual tablets daily with no apparent benefit.

    Then I tried liquid sublingual methyl B12, and when I went up to 5000 mcg. 2 x a day (total 10,000 mcg. a day), I finally got a boost in energy. This is what I'm currently taking, it costs $20 a month, which is reasonable:
     
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  15. shoponl

    shoponl

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    Subacute combined degeneration is a consequence of having low B12 for years, I think. I've heard it discussed on the pernicious anemia forums, where people often have had undiagnosed B12 deficiency. About a third of pernicious anemia patients don't have anemia, they only have neurological damage. Usually they'll have B12 below 300, and often have high parietal-cell antibody, gastrin, and/or intrinsic-factor antibody levels. The root cause of PA is "atrophic gastritis", an autoimmune attack on the stomach's parietal cells. Stomach acidity is low (thereby making gastrin high) because the parietal cells also make stomach acid in addition to intrinsic factor... B12 deficiency is an eventual downstream consequence of the parietal-cell failure. My parietal-cell antibodies are elevated, but the test has a high false-positive rate (it's nonspecific). My gastrin and intrinsic-factor antibodies are normal; the IFA test has a very high false-negative rate (40-50%), but combined with a normal gastrin, plus all normal blood tests, means I probably don't have PA. I think.

    I'm very cheered to read that neurological symptoms in subacute combined degeneration usually resolve after long-term B12 injection therapy, as it shows that remyelination is probably possible for nerves in general, given adequate B12. And I guess in my case, adequate B12 means very high B12.
     
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  16. shoponl

    shoponl

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    Which would suggest that until someone tries all the different forms of B12, and all the different ways of taking B12, they can't know for sure if B12 would help them. I used methyl, adenosyl, and hydroxyB12 sublinguals and drops before trying the shots. I moved away from daily methylB12 usage after my skin began to break out a little, but I was probably taking too much. My fave B12 sublinguals and drops are:
    https://smile.amazon.com/gp/product/B000GFPDB0 Source Naturals sublingual adenosylcobalamin with no added folic acid. 8.6mg dose for $0.46.
    https://smile.amazon.com/gp/product/B01LB3VB7K Pure Encapsulations drops with 50/50 adenosylcobalamin and hydroxycobalamin. 1mg dose for $0.87.

    Do you have any theories about why drops worked for you, when injections and sublinguals didn't?
     
    Last edited: Oct 7, 2018
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  17. shoponl

    shoponl

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    The only mail-order methylB12 ampoules I've found are from VitaminQuick.com, and they appear to be sourced from China, without many reviews online. I would love to try self-injecting methylB12 if I could find ampoules from a reliable source. Did you buy yours online or from a compounding pharmacy?
     
  18. Hip

    Hip Senior Member

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    Unfortunately I don't know very much about SCD diagnosis, so could not comment on this. But I do know that if you don't catch it early and treat with high doses of B12, then permanent damage can occur. So that's why I mentioned it, just in case. @Freddd has SCD, so you might like to chat with him.
     
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  19. shoponl

    shoponl

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    How did you know you had h. pylori? I requested the antibody blood test many years ago, but it came up negative.

    I know I've read this somewhere, but I can't locate the study. If I'm remembering right, many (maybe a third of?) elderly patients in a nursing home recovered from their "dementia" when given a course of B12 injections.
     
  20. shoponl

    shoponl

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    Good intuition...

    I also have MTR/MTRR variations, but since my homocysteine is normal, I'm not sure those are causing the problem. There must be something else.
     

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