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.
Discuss the article on the Forums.

Manganese Superoxide Dismutase - Antioxidant - Mitochondria

Discussion in 'General ME/CFS Discussion' started by Louisa, Sep 14, 2016.

  1. Louisa

    Louisa

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    Hi Everyone

    If I have understood correctly, Manganese Superoxide Dismutase is an antioxidant & is essential for mitochondria to function properly.

    Despite my best efforts my Manganese (mineral) levels are always deficient & get lower every time my blood is tested. So I suspect that my body can't produce enough Manganese Superoxide Dismutase & therefore my mitochondria can't function properly & that this may be the underlying cause of my ME ??

    I take Manganese supplements & snack on pineapple (rich in Manganese) everyday & I feel better for this but still my Manganese levels are dropping.. and my ME progressively worsens. If I do not consume copious amounts of Manganese my ME is severe.

    (I also feel better the day after I eat rare/medium rare beef steak - my iron levels are fine though).

    I have just seen a NHS Consultant who wants to send me on a course of GET. I've done GET before & the more I push my ME, the worse my post-exertion fatigue is so GET just makes me crash.

    I'm feeling quite lost & frustrated. :(

    Is there a branch of medicine that would take my manganese deficiency seriously?

    Thank you :hug:
     
    justy likes this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Louisa

    Hi Louisa

    While your manganese levels may be a part of the picture my understanding of ME is that there is a lot more to it than a straight vitamin or mineral deficiency.

    If the consultant wants to send you for GET and you were worse from the last course--stay away.
    There are good reasons for staying away from GET if you have ME. They are well documented here on PR.

    There is also good biological evidence coming out of new studies in the US and Australia. ME is a multi-systemic disease and there is some hope that a blood test might soon be available.

    Your best bet is to get informed and to not be bullied into something that will cause you harm.
     
  3. Louisa

    Louisa

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    Thanks for your kind reply snowdrop :0)

    Yes, it's probably a bit naive of me to think that a mineral deficiency could be causing my ME.

    The thought of going through GET again, sent me into a panic. I will have to assert myself and say no.
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    The results of the PACE trial that support the use of CBT/GET for ME are not as robust as were claimed by the Principle Investigators. There is so much on this topic--blog's have been written--eminent scientists have written letters it would take some time for you to go through.

    There is also a new study that shows that many metabolites are showing differences between ME pts and healthy controls.

    So as you spend time here you will find all kinds of info. Ask questions--question answers for validity and fact. There are symptomatic treatments that may help depending on your situation/symptoms.
     
    Jennifer J likes this.
  5. aquariusgirl

    aquariusgirl Senior Member

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    Well, I think it is interesting about your manganese levels. Are u testing RBC ?

    I think you should collect your data & send it to someone smart...a toxicologist or mito expert.

    Manganese can be toxic in excess, but I wonder if you have some genetic flaw or if its being depleted for some reason ?

    and yes, seems like it would screw up yr mito function...

    I am kicking around the idea that copper deficiency is messign with my mito function.

    who is yr dr?
     
  6. aquariusgirl

    aquariusgirl Senior Member

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    I know that Mn SOD is tested by Acumen Labs in the UK. Also Mn SOD is problematic in ALS unless mistaken.
     
    justy likes this.
  7. ahmo

    ahmo Senior Member

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    Sweet potato is also high manganese. GET is high in bullshit.
     
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  8. Hip

    Hip Senior Member

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    If you want an antioxidant that is an Mn-SOD mimetic, consider tempol.
     
  9. lansbergen

    lansbergen Senior Member

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    And what when SOD2 is dislocated in the cytosol?
     
  10. justy

    justy Donate Advocate Demonstrate

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    My Acumen results showed a blockage in the MnSODase - does anyone know what this means? (I don't think its good, but Manganese supps didn't do much for me)
     
  11. aquariusgirl

    aquariusgirl Senior Member

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    I thought Tempol was a Cu-Zn SOD mimetic or whatever ...not Mn-SOD?

    Have you tried it Hip?
     
  12. Hip

    Hip Senior Member

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    Tempol can perform the role of all three types of superoxide dismutase, namely:

    CuZn-SOD (SOD1) — found almost exclusively within cells (in the cytoplasm).
    Mn-SOD (SOD2) — found exclusively in the mitochondria.
    EC-SOD (SOD3) — found exclusively in extracellular spaces outside cells.


    I have tried tempol. It's did not seem to help my ME/CFS symptoms, but within a week tempol 20 mg daily did permanently cure a patch (3 inches across) of suspected psoriasis that I had had for several years on my ankle, which I could not get rid of by any other means. That was unexpected, but welcome. One study suggested SOD3 could work to treat psoriasis.
     
    Last edited: Sep 15, 2016
  13. aquariusgirl

    aquariusgirl Senior Member

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    Interesting. Do u know if u had issues w/any of these levels of SOD?
     
  14. Hip

    Hip Senior Member

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    Not as far as I know. I do have the SNP risk alleles for SOD2 (see this post), but I am not sure if that means much.

    You can buy tempol here and here. It's sold on the understanding it is not for human consumption.
     
  15. Alexi

    Alexi

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    Did you have this interpreted by Dr Myhill ?
     
    justy likes this.
  16. Alexi

    Alexi

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    Run a mile from GET! The dept dealing with ME/CFS services in my health trust comes under infectious diseases, ask your GP to refer you to whoever diagnosed you and start from there. Really, it comes down to finding a doc willing to work with you ☹️
     
  17. justy

    justy Donate Advocate Demonstrate

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    yes - but just as in, take some manganese - we don't know what is causing the blockage - I don't really know what a blockage means anyway.
     
  18. Alexi

    Alexi

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    I think Dr Myhill offers a protein translocator test for that ? I'm plodding my way through my mitochondria results. TBH I'd like them to be a lot clearer.
     
  19. justy

    justy Donate Advocate Demonstrate

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    Yes I had that test and I didn't really find it helpful. I had blockages but they couldn't work out what was causing them - the explanation wasn't clear at the time. There was soMe speculation that steroids were causing the blockage, but DRs Myhill and Howard at Acumen said they had never seen that before and didn't really know what it meant . I have been on long term inhaled steroids and I don't react well to very low doses of prednisolone, but no idea if the two things are related. Like many other tests o had done it was not money well spent and really just told me o was ill ( which I already knew )
     
  20. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    This could be ME/CFS in a nutshell. :grumpy:
     
    justy likes this.

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