Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Common CFS symptoms from a vitamin deficiency despite supplements

Discussion in 'General Symptoms' started by Chocolove, Jul 22, 2016.

  1. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    Overlooked vitamin deficiency can have serious consequences. You might be vitamin deficient despite taking multi-vitamin supplements and eating well.

    One experience described by Meg Hartley is very pertinent to us and she is trying to help prevent this from happening to others. As excerpted from her account in: http://www.sheknows.com/health-and-...6225/a-vitamin-deficiency-nearly-paralyzed-me

    B12 deficiency is just one of a number of vitamin deficiencies that fly under medical radar. I hope all will think to ask their doctors to test their vitamin and mineral levels for such deficiencies. Such a simple issue can create huge problems.
     
    Last edited by a moderator: Jul 23, 2016
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  2. TigerLilea

    TigerLilea Senior Member

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    Anemia was one of the first things that my doctor checked for. I've also had Vitamin and Mineral testing by a specialist I saw several years later and was found to be deficient in B1, Calcium, and Glutathione. My GP questioned the results as she thought the report sent by the lab in the US looked suspicious. She doubted that the results were accurate. I must admit that was my first impression also when I looked at all of the graphs representing the results.
     
  3. barbc56

    barbc56 Senior Member

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    Any doctor worth their certificate should check a person's B12 levels with those symptoms but I guess that's In a perfect world. Sorry you've been going through this.

    I had a B12 deficiency got the shots until my levels were normal. Unfortunately, it didn't really change how I felt other than knowing my blood levels were normal.

    I ended up in the emergency room several months ago and was tested for several vitamin levels not just associated with dehydration which I had no idea could be related to my symptoms. I will have to look up what tests. I was surprised that these tests are becoming more common especially in the ER. Well, according to the doctor.:love:

    I walked around for a year with a sodium and chloride deficiency caused by a medication. It wasn't caught until I was hospitalized. After the third hospitalization they suspected a medication and it was actually caught by a pharmacist whom my doctor consulted. This side effect is now more prominently listed in the side effects. I wasn't the only one who had this side effect. Thank goodness enough doctors reported this to the CDC. My experience was a walk in the park compared to @Valentijn 's experience with low sodium.

    Good luck!
     
    Last edited: Jul 22, 2016
  4. Mary

    Mary Senior Member

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    @barbc56 - Even though your blood levels of B12 are " normal", it doesn't mean you're utilizing the B12. My levels are always high, but it's rather meaningless because most the B12 is not getting into my cells. I did the shots, 5000 mcg., 3 times a week for quite awhile and didn't notice any difference. And I'm only learning now that it really just wasn't enough. Now I'm using Blue Bonnet 5000 mcg. MB12, taking 3 doses a day, and finally notice a difference, a little increase in energy and sleeping a bit better I believe some of the B12 is finally getting to where it's needed. Many others here have had similar experiences about high B12 levels with no noticeable effect. I am going to try either making my own transdermal B12 or buying one bottle of the oil to see what that is like.

    Would you mind stating what drug it was that caused your sodium and chloride deficiency? I'm just curious, there are so many meds with so many bad side effects, and most doctors know very little about side effects or if patients report, they tend to discount them. I've had it happen to me. We can't rely on our doctors or even pharmacists - I think you got lucky!
     
  5. Hip

    Hip Senior Member

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    I am not sure if this is really pertinent to ME/CFS patients.

    Meg Hartley has funicular myelosis, also called subacute combined degeneration, a vitamin B12 deficiency disorder that disorder affects around 1 of 10,000 people. This is the same condition that @Freddd on this forum has.

    The B12 deficiency results from a lack of intrinsic factor, malabsorption of B12 in the terminal ileum, or low gastric pH inhibiting attachment of intrinsic factor to ileal receptors. Ref: 1



    How do you know that B12 is not getting into your cells?
     
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  6. Mary

    Mary Senior Member

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    On hair analysis my B12 was always almost undetectable, regardless of how much I took. This was a test my doctor ran every year. Also, my MCV (mean corpuscular volume) was always borderline high - near or at the top of the normal range and my doctor indicated that was a problem. My energy did pick up when I started taking folate some 6 years ago, but my MCV did not go down. B12 never made a noticeable difference in how I felt until I started taking 5000 mcg. of the Blue Bonnet MB12 3 times a day. I will be curious to see if my MCV does go down with the Blue Bonnet MB12.

    I remember years ago before I developed ME/CFS, that if I took B12, I had a noticeable increase energy within a short period of time. And that stopped happening after ME/CFS.

    Also many people on this board have the same experience with high serum B12 levels but low utilization.
     
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  7. Hip

    Hip Senior Member

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    Presumably it is the cobalt from vitamin B12 that the hair analysis detects (hair analysis just detects the elements present in the hair).

    Though I can't find any info online that confirms that low cobalt in the hair reflects B12 status or B12 utilization.


    A quick Google reveals that elevated MCV can indicate B12 deficiency, but this study suggests it is not that accurate, though a useful guide.



    Are there any known conditions (apart from inherited disorders of metabolism) that could prevent proper B12 utilization, even when blood levels of B12 are normal?
     
  8. Mary

    Mary Senior Member

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    Yes, it was the cobalt that was always just about undetectable. My doctor (who died about 2 months ago) was extremely well-informed. I never asked him where he learned that low cobalt reflected B12 status or use.

    Interesting - I guess we're like detectives, getting clues here and there.

    I don't know the answer to this. I'm sure you've seen this thread: http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/ - I think the people on this thread are more knowledgeable about this than me, and could probably answer your question. Actually the first post I think addresses this issue (at least a bit):
    And Greg, the person who runs this website http://www.b12oils.com/ is very helpful and will respond to questions.

    From my own experience and from what I see on this board and elsewhere, I think in general with ME/CFS there is some sort of defect in utilizing B12. I don't know what it is, but I believe it's there. A few years ago my sister, who was vegetarian (but is no longer), was developing numb patches and tingling on various parts of her body. She had crap insurance so I suggested she try taking B12 - vegetarians are notorious for being deficient in B12. Within a week her symptoms had abated. She doesn't have ME/CFS. Whereas despite the fact that I've taken lots of B12 for years and years, I hadn't noticed any difference until I really ramped up my dose to 5,000 mcg. 3 x a day. which makes sense considering the explanation given above.
     
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  9. Deltrus

    Deltrus Senior Member

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    I've recently been trying to figure out why some days I can absorb 2g of magnesium and some days I can't absorb/tolerate any. One day I could even absorb 14g and got very good effects but got diarrhea later in the day.

    Recently I found this: https://www.adelaide.edu.au/press/titles/magnesium/magnesium-ebook.pdf

    Which says that intracellular free magnesium is almost entirely dependent on ATP levels, because it forms Mag-ATP.

    MTHFR needs magnesium as a cofactor.

    Aldehyde dehydrogenase needs magnesium as a cofactor and acetylhyde inhibits MTR (the b12 dependant enzyme).

    So perhaps methylation is impaired when ATP production is impaired. And this causes symptoms of vitamin deficiency.

    It all leads back to the mitochondria.
     
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  10. Hip

    Hip Senior Member

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    For some reason, the amount of B12 contained in his products is not given on his website.

    Seems a major stretch of the truth that he is claiming B12 can cure ME/CFS:


    I don't see how this necessarily follows, just from the fact that some ME/CFS patients benefit from high doses of B12. It could be the case, but there may be an alternative explanation:

    High dose vitamins and minerals can have effects beyond meeting their recommended daily requirements. For example, very high dose magnesium acts as an inhibitor of the NMDA receptor, which can be beneficial for ME/CFS.

    So the fact that some ME/CFS patients feel better with very high dose magnesium does not necessarily imply they are magnesium deficient, or that somehow the magnesium they take is not being distributed or utilized in the body; it just means that very high doses of ME/CFS do something over and above the normal metabolic functions of magnesium.

    The same may apply to B12: if high doses help you, that does not necessarily imply you are B12 deficient, or that B12 is not being utilized properly; it may just mean that high dose B12 does something over and above the normal metabolic functions of vitamin B12.
     
    Last edited: Jul 23, 2016
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  11. taniaaust1

    taniaaust1 Senior Member

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    I too wouldnt be surprised if ME/CFS patients generally had some kind of defect in their Bs. When I studied 30 different people at this website (it may of been 34). I found that 3/4 of them were helped some by taking one of the Bs (often it was one of the forms of B12). The B supplements turned out to be the most useful supplements amongst us at that rate, no other was found to be close to helping 3/4 of us.

    Maybe we though are just using up more due to the stress of this illness I dont know but B12 deficiency certainly can have the same symptoms as some of the CFS diagnoses and B12 deficiency testing is often inaccurate. They dont even know what is the best amount of B for us to have with what is classifed as being deficient in test results varying in different parts of the world eg what is classifed as ok in Australia was classified as deficiency I think it was in Japan.

    How many do have B deficiencies causing their "CFS"..
     
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  12. Hip

    Hip Senior Member

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    Did you ever try subcutaneous B12 injections for the purpose of comparison? Goldpharma.com do a good value B12 hydroxocobalamin injection (see here).
     
  13. Hip

    Hip Senior Member

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    Ever since I developed ME/CFS, I get dry and chapped lips if I don't take a B complex every day, so I agree that it seems we may be using up the B vitamins faster than normal. I have been taking a B complex tablet every day for several years now.

    One study found a reduced vitamin B functional status in ME/CFS patients. The study said that:
     
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  14. taniaaust1

    taniaaust1 Senior Member

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    oh wow, I never knew they had do a study on that and found this. thanks.
     
  15. alicec

    alicec Senior Member

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    High serum B12 coupled with elevated MMA (either serum or urine), which is indicative of functional B12 deficiency, would suggest this.

    I don't know of studies particularly addressing the question but that is how I interpreted my test results. Supplementing with active B12s (along with various factors needed by interlinked metabolic pathways) certainly reversed my elevated MMA and made a huge improvement in how I felt.
     
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  16. barbc56

    barbc56 Senior Member

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    I had to receive an iron transfusion about five years ago as my ferritin was extremly low even after iron supplementation. I was referred to a hematologist, got the infusion and my ferritin levels have been normal since then. One of the hematologist theories was a possible malabsorbtion from my IBS but it was a theory and nothing definiitive as there were several other factors that could have been the explanation.

    My aunt had the same thing which may suggest a genetic factor. I also had a hysterectomy five years before that and was extremely anemic before the surgery. Supplementation with iron after the surgery normalized my cbc. This was before I had IBS. I don't think my ferritin was checked or if it was, at the time low ferritin was not considered as being anemic but a precursor to anemia since ferritin is your iron storage. It may have been decreasing even more during the between years. Now low ferritin is considered as an anemia which causes symptoms in and of itself, even if your cbc is normal.

    Coincidentally, I am seeing my BIL this weekend. He's a hematologist and I can ask him about this.

    I would however, be a bit skeptical about a result from hair analysis as it's not considered a valid test, at least for nutritional status, compared with blood levels. Hair is exposed to so many things that even washing the sample doesn't get rid of things that can affect the results.

    The medicine was Trileptal which treats bipolar as well as helping with anxiety and potentiates an AD. It really helped with anxiety. When it was discovered this was causing the low sodium my doctor switched me to Lamictal. It has also been effective and my sodium has been normal since then.

    Thanks for the information.
     
    Last edited: Jul 23, 2016
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  17. Mary

    Mary Senior Member

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    I agree, this claim is not substantiated. I think he should have left it at many people obtain benefit from B12 and often transdermal B12 is more effective than other kinds.

    You could be right, I just don't know. Actually the study you cite above (http://www.ncbi.nlm.nih.gov/pubmed/10450194/) states:


    It appears to be stating that these B vitamins are not being used properly as part of normal metabolic functioning in persons with ME/CFS, and it would not be huge stretch to posit that the same is true of B12 - that we have a defect in utilizing these vitamins.

    And of course they could also be performing functions over and above their normal metabolic functioning.
     
    Last edited: Jul 23, 2016
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  18. Mary

    Mary Senior Member

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    I did injections in my thigh, though they weren't subcutaneous. I did both MB12 and hydroxocobalamin. My prescription was for 5000 mcg. 3 x a week. Looking back, I'm thinking it wasn't enough, that maybe if I'd done injections 3 times a day, like I'm doing with the liquid B12, I may have had better results.
     
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  19. Mary

    Mary Senior Member

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    I know there's a lot of skepticism about hair analysis, but my doctor was extremely well-informed. And my results were consistent year after year, such that even though hair is exposed to other elements not removed by washing, it's unlikely that this caused my almost non-existent B12 year after year. One would expect large anomalies here and there if the sample were contaminated, and I didn't have large anomalies - only slight changes and often in the same direction, over a period of time - e.g., my magnesium gradually increased over time. I would not be at all surprised if a lot of the skepticism about hair analysis arises from the same skepticism about anything that doesn't conform to traditional mainstream medicine. I'm sure it hasn't been studied enough. There was a study back in the 1950's I think about abnormal glycine metabolism in rheumatoid arthritis (which my sister has). So I was a little excited and tried to read more about it, and found nothing. All the research goes into drugs, and often very toxic drugs at that.

    Thanks for the info on Trileptal! Several times I've seen people on this board write about various symptoms and only mention in passing (if at all initially) that they're taking such and such a drug, and so often their symptoms correlate with the effects of the drug. It's the first thing I look at.
     
  20. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    Check this out:
    BMC Res Notes. 2015 Dec 12;8:778. doi: 10.1186/s13104-015-1744-1.
    A novel screening tool (Karanth's test) for vitamin B12 deficiency: a pilot study.
    Karanth VK1, Karanth L2, Karanth TK3, Karanth SK4, Bekur R5.
    Author information
    Abstract

    BACKGROUND:
    No practical tests are currently available for screening vitamin B12 deficiency because the available techniques are invasive, expensive, and require a particular level of infrastructure and service that is not available in all places such as rural areas. Thus, we have examined the efficacy of a novel method (Karanth's test) for identifying people with vitamin B12 deficiency as part of a pilot study.

    METHODS:
    An observer-blind study was conducted on 83 consenting patients from a tertiary teaching hospital whose blood was drawn for estimation of serum vitamin B12 over a 2-month period. All of these patients completed the study. In the Karanth's test, the skin color tone is measured at the interphalangeal joint and the phalanx using the Von Luschan skin tone chart. The test result is obtained from differences in the values obtained. This test was performed on the day blood was drawn to measure the serum vitamin B12 levels in the study patients and on every day until discharge for patients tested to be deficient.

    RESULTS:
    Of the 83 patient subjects, 20 showed deficient vitamin B12 levels in the blood test. The Karanth's test readings were significantly different for patients with normal and deficient levels of vitamin B12 (95 % CI, 0.838-2.153). ROC curve analysis suggested that a difference greater than 1.5 should be considered positive. The sensitivity and specificity of the test were determined to be 80 and 84.1 %, respectively. Patients were grouped further according to the Fitzpatrick scale. There were no type I, II or III patients and insufficient IV cases to determine sensitivity and specificity. Sensitivity and specificity were determined to be 57.1 and 94.6 % in type V and 92 and 63.6 % in type VI, respectively. We found that 87 % of our patients who tested positive had normal values on discharge.

    CONCLUSION:
    The Karanth's test is a useful screen for a vitamin B12 deficiency and warrants further evaluation in a larger study population.

    PMID: 26652288
    PMCID: PMC4677048
    DOI: 10.1186/s13104-015-1744-1
    Free PMC Article
     

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