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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 Senior 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 Senior 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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  15. pangolin

    pangolin New Member

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    Just to say that - although most doctors don't know about it - functional B12 deficiency (B12 deficiency despite normal or even high levels in blood) is in fact recognised by the NHS: 'Functional vitamin B12 deficiency Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood. This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord.' (https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/causes/). Am I right that the only way you can tell if you have Functional B12 deficiency is by trying B12 injections and seeing if they help?
     
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  16. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  17. Aslaug

    Aslaug Senior Member (Voting Rights)

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    You can test for functional b12 deficiency by looking at methylmalonic acid levels in the blood.
     
  18. Hutan

    Hutan Moderator Staff Member

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    The following are some excerpts from a response I drafted to Dr Vallings promoting B12 injections in the treatment of ME/CFS in a recent editorial in a journal for doctors:

    Vitamin B12 injections is one treatment that illustrates a number of the issues. Dr Vallings suggests in the editorial that B12 injections have been shown to be useful, noting that ‘cerebrospinal fluid levels maybe depleted’. The reference given for this is a 2015 Finnish study that did not in fact measure levels of B12 in cerebrospinal fluid (CSF) or in blood. The retrospective study consisted of 38 patients who had been having at least weekly injections of B12 and folic acid for varying lengths of time, from 6 months up to 20 years. All of the included patients had previously ‘reported an evident and favourable response to B12 injections in an open clinical environment’. None of the possibly many people who did not find B12 injections useful were included in the study.

    There are many more issues, summarised here as:
    · No patient had been treated exactly the same over the years, with dosages and types of B12 varying.
    · B12 was combined with folic acid, making separation of the effect of B12 impossible.
    · Patients self-reported global improvements on a scale of 1 to 3, making the study open to a range of biases, particularly as ME/CFS is a fluctuating condition.
    · An evaluation of current illness level was made and it was this that was used to determine whether a person was a ‘good’ or ‘mild’ responder (15 and 23 people respectively). But current illness level says little about improvement. Furthermore, the evaluation gave points for both fatigue and fibromyalgia symptoms, so those with both fatigue and fibromyalgia unsurprisingly scored worse.
    · It was confounded by high rates of analgesic and thyroid medication use.

    That 2015 study quotes a 1997 study as finding that ‘levels of CSF B12 were generally low’.

    The 1997 study had its own set of problems:
    · Small size - 24 patients ranging in age from 22 to 64. However, CSF B12 data is only reported for 12 patients, with no explanation for the drop outs.
    · Poor selection criteria - the criteria did not require that the patients had the core ME/CFS symptom of post-exertional malaise but did require fibromyalgia symptoms
    · There was no control group to ensure that approaches to CSF collection, storage and processing were consistent with comparison data
    · The authors noted that the ‘method we used to analyse the concentration of CSF-B12 needs to be further validated’.
    · There is no information as to how the normal range of CSF B12 was determined including whether it was appropriate for the patients’ age range.
    · Only one of the 12 patients was found to have a level of CSF B12 that was deemed low (with most of the others being deemed borderline, and two in the normal range).

    Therefore, the recommendation for B12 injections is based on a single 1997 study with 12 participants (who may or may not have had ME/CFS), no controls and a quantification method that the authors acknowledged ‘needs to be further validated’. Even then, the study did not find overwhelming evidence for low levels of B12 in cerebrospinal fluid. And the 2015 study of 38 hand-picked self-reported responders to B12 injections described the majority as being only ‘mild responders’.

    Clinicians may say ‘I don’t need trial evidence’, I see some of my patients responding, they tell me it helps’. But the placebo treatment in the blinded rituximab trial produced a self-reported improvement in 40% of the participants in that cohort. ME/CFS is a fluctuating disease and patients typically reduce activity over time, by for example, giving up work, in order to reduce symptoms. In these circumstances, especially when both patients and doctors want to believe that an intervention is helping, self-reported improvement is not a reliable measure of efficacy.

    Some may say, ‘well, what does it matter? If the patient is happy that they are doing something that helps, isn’t that giving them hope, isn’t that good enough?’. Similar arguments may be made for other treatments Dr Vallings suggests such as acupuncture, ‘good breathing technique’ and self-hypnosis.

    But it does matter. A person with ME/CFS is having to make hard decisions about how to ration their energy. They may only have one shower a week instead of two, in order to have enough energy to get to the clinic for the treatment. They may be sick from the exertion of the trip for several days afterwards and not be able to interact with their child during that time. A person with ME/CFS is probably not able to work and so is having to make difficult decisions about how to ration funds. The cost of the B12 injection, or the acupuncture, may mean that they cannot afford to have fresh food delivered or donate to research efforts. If there is no reasonable chance of a benefit, there is harm.

    Furthermore, listing unevidenced and probably ineffective treatments obscures the fact that there is really very little that significantly helps the actual disease other than reduced activity levels. It can suggest to skeptics that all people with ME/CFS need is a good placebo and some encouraging words.

    Dr Vallings is absolutely right that so much is lost by people with ME/CFS; it is a devastating disease. Care needs to be taken to ensure that clinical practice is based on sound evidence and acknowledges remaining uncertainties.
     
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  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    And urine
     
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  20. Amw66

    Amw66 Senior Member (Voting Rights)

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    Sue Jacksons blog carrys a lot of info presented in an easy to understand way.
    B12 is a NO scavenger and this may be why it has an effect for some.

    https://livewithcfs.blogspot.com/2014/04/vitamin-b12-and-mecfs.html?m=1

    Certain genetic expressions also control the rate of B12 use / need for b12
    You could have high blood serum but low cellular use - a kind of functional deficiency.
    Tagging @Aslaug who may be able to better explain this.
     

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