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IM hydroxocobalamin (B12) treatment

Discussion in 'Other: Methylation; B12; Glutathione; GcMAF' started by InitialConditions, Jun 17, 2019.

  1. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Hi folks,

    Was wondering if anyone has self treated with B12 injections? I am looking to trial this. I tick many of the boxes for issues with B12 (fatigue, glossitis, vision issues) though my serum B12 is in the normal range.

    I am minded to try and source hydroxocobalamin and self inject. Anyone done similar? And if so, is there a reputable source?
     
    Last edited: Jun 17, 2019
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  2. theJOYdecision

    theJOYdecision Established Member (Voting Rights)

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    @InitialConditions I have tried B12 injections administered by a nurse. Dr was happy to try it. We tried 1 dose a month for 3 months though I did later learn more frequent doses are recommended for ME. I didn’t have astonishing results. There were many challenges in my life at the same time and I do wonder if it made me less prone to a crash so dr and I have filed it away as something we might re-visit. I’m now trialing oral drops although I realise injections are the recommended method of delivery for ME. I believe it is B12 levels in the cerebrospinal fluid rather than levels in the blood that is at issue with ME. If it is not too inconvenient, receiving doses by a nurse should eliminate issues you might have about reputable sources or any self-injection issues you might have.
     
  3. Trish

    Trish Moderator Staff Member

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    When you say 'recommended', do you mean experimented with, recommended by a doctor, or based on a clinical trial?

    I am not aware of anyone having done a clinical trial of B12 injections for ME in people who are not apparently B12 deficient. I have read various anecdotal accounts of people trying it with varying response which is hard to know whether to attribute to the treatment or something else.
     
  4. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I am very conflicted on this. I've actually had a serum active B12 test which came back in the normal range, so this is perhaps further evidence that I am not deficient. However, I look at the list of symptoms - some of them very specific - and think it is worth a try.

    My Dad's partner is a nurse so I could get her to help out. I have found a site that delivers to the UK. It seems to be harder to source than in the past.
     
  5. Sarah94

    Sarah94 Senior Member (Voting Rights)

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  6. Trish

    Trish Moderator Staff Member

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    Unfortunately that's an advertising site for the product, so any anecdotal evidence they give is worthless.
     
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  7. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Sorry, I should clarify what I meant. I meant, I know of plenty of PWME (including myself and @Hip ) who report great effects from transdermal B12. I then shared that site as being one source of transdermal B12.
     
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  8. Trish

    Trish Moderator Staff Member

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  9. theJOYdecision

    theJOYdecision Established Member (Voting Rights)

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    Recommended as a possible helpful treatment by Dr Vallings in NZ. Her idea of it as something a pwME might want to try is based on the discovery of low B12 in the cerebrospinal fluid. And on anecdotal evidence of some but by no means the majority patients having some benefit from injections specifically. And she observed that, whether it was helpful or not, it didn’t later trigger a crash. I believe her reasoning is that injections are thought to better find it’s way into cerebrospinal fluid compared to oral supplementing but I apologise I don’t have her reasoning on hand for this, whether it is based on findings or a general belief it is a more effective means of delivery. And as only a small number of patients experience a significant improvement I don’t expect to see it as a research priority.
     
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  10. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    https://s4me.info/threads/response-...me-and-fibromyalgia-2015-regland-et-al.10019/
     
  11. Hutan

    Hutan Moderator Staff Member

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    I'd be keen to see any study about this. I'm aware of Dr Vallings' view on this, which has made it into the Auckland guidance to doctors on recommended treatments. But at present I'm inclined to leave it out of the guidance document for our region because of the lack of evidence.
     
  12. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Please note that there is a difference between the serum B12 test and the Active B12 test, and there is no guarantee that results for both will be similar. I paid to get Active B12 and serum B12 tested from the same blood sample out of curiosity - having done it once I won't do it again, but I thought it was an interesting and valuable experiment. My Active B12 level was much lower than my serum B12 when compared using percentage through the range for both.

    For a discussion of active B12 and serum B12 and how they differ, see this link : https://www.biolab.co.uk/docs/vitaminB12.pdf

    It's worth reading all the document above, but the differences between active and serum B12 are described in the paragraph on page 2 entitled "Vitamin B12 status assessment".
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I don't think it is possible for there to be a difference in access to CSF across the blood brain barrier for any B12 that has got into the bloodstream. This sounds seriously misleading and inaccurate. The reason for giving B12 by injection is if the cause of deficiency is failure to absorb in the small intestine specifically because of a lack of intrinsic factor from the stomach. Oral B12 is fine as long as there is intrinsic factor but the common cause of B12 deficiency in the west is lack of intrinsic factor due to pernicious anaemia.

    B12 injections were also used in the past as placebos because injections seem to have more placebo effect.

    There does not seem to be any logic to using B12 if the serum level is normal.
     
  14. Solstice

    Solstice Senior Member (Voting Rights)

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    I'm not self-treating but I do get a dose of hydroxocobalamin twice a week IM and it does help with pain and fatigue a bit. It's in no way a miracle-solution though.
     
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