Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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copper dysregulation

Discussion in 'General Treatment' started by aquariusgirl, Sep 29, 2016.

  1. aquariusgirl

    aquariusgirl Senior Member

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    hi, i wanted to start a new thread about this. I think I may have copper and iron dysregulation.

    Super low zinc. Low copper RBC and serum. Both turn the lights on....or at least mitosynergy copper turns the lights on.

    I asked Dr Richard Frye ...mito guy at Arkansas childrens' hospital about this... and he was really leery about supplementing copper ....as most practitioners are.


    I had a noticeable decrease in brain inflammation with zinc and copper...and I tested deficient for SOD years ago.

    Also you need zinc and copper for metallotheineins and copper for methylation.

    William Walsh and Carl Pfeiiffer have looked at this.. but not sure about their treatment per se.

    I wish someone could shed some light...
     
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  2. aquariusgirl

    aquariusgirl Senior Member

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    I think it's a conversion problem..Charles Barker has some interesting videos on his facebook page for his product... Worlds First Proper Copper.

    this sounds right to me....I seem to dump copper quite easily..but I'm just flying by the seat of my pants... I have wondered about consulting Rick Malter in Arizona.

    We should try and get Ron Davis interested!
     
    Last edited: Sep 29, 2016
  3. TrixieStix

    TrixieStix Senior Member

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    Yeah the neurologist who discovered my low copper and ceruloplasmin suggested (after ruling out Wilson's Disease) that I start supplementing with 1mg of Elemental Copper daily, and then retest my levels 2 months later. However I am a bit reluctant to start supplementing copper until I am seen by an ME/CFS specialist.
     
  4. TrixieStix

    TrixieStix Senior Member

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    Sounds like they ruled out Wilson's disease then? I too was tested for Wilson's after my copper and ceruloplasmin came back low. My urinary copper level was normal and no KF rings seen in my eyes. My zinc level was also tested and it came back well within normal limits.

    With Wilson's your body is unable to excrete the excess copper into the stool and it then builds up over years in the liver, brain, and eyes until. And in the urine once someone has built up a lot in their body thus why their urine copper will be so high. It's fatal if left untreated.

    So if your doctor thinks you are building up copper in your liver he or she must think it's happening on a very small scale as to not be worrisome? How are your iron tests? (Ferritin, Iron Saturation %, etc) Like I posted before iron overloading can cause low copper and ceruloplasmin. My doctors also ruled that possibility out.

    Low ceruloplasmin is also a feature of Parkinson's disease. There is information about this online. https://www.ncbi.nlm.nih.gov/pubmed/19159062
     
  5. TrixieStix

    TrixieStix Senior Member

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    My neurologist tested my serum copper and ceruloplasmin levels a few months ago and I am deficient in both...below normal range. Being low in copper is rare in the developed world and I eat plenty of high copper foods and do not consume too much zinc. We ruled out Wilson's disease, but I'm really puzzled why I have low ceruloplasmin and low copper.
     
  6. hixxy

    hixxy Senior Member

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    Australia
    Yes wilson's was ruled out. With normal copper excretion but low serum copper and low ceruloplasmin, the copper must be coming from somewhere yes? I had a naturopath prescribe me a copper supplement and I took it for a while but my doctor told me to stop because he didn't want the copper building up in the liver with my poor copper transport.
     
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  7. TrixieStix

    TrixieStix Senior Member

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    Hmm I'm not sure about the assumption that a person's is not copper deficient because their urine copper level is normal. We excrete almost all our excess copper in our stool. Only tiny amounts of copper are excreted via urine.

    Also I wonder if this is true as stated.... ( http://www.westonaprice.org/health-topics/metals-and-the-mind/ )

    "The tendency of copper to build up in the body is similar to iron, which is another essential nutrient that is also a heavy metal. They’re both highly electrical, very conductive metals that produce a lot of free radical activity and have to be bound by special proteins, such as ceruloplasmin and metallothioine. The production of these proteins is controlled by the adrenal glands, and they are produced in the liver. If the adrenals are not functioning properly and the liver is impaired, possibly from copper buildup, you will not produce these binding proteins, so copper remains in free form. That makes it a toxic and reactive free-radical generator capable of causing a lot of damage.

    When this happens, the body starts to sequester it. It tries to stash it somewhere so it will do less damage. Thus, while you may be building up a lot of copper in your body, you may also have the symptoms of copper deficiency because the copper is bio-unavailable. The copper is not in a usable form so you will have both deficiency symptoms and symptoms of toxicity"

    This would makes sense to me given my limited knowledge. Copper can not move about the body on it's own. It must be bound to Ceruloplasmin. Some people will calculate their "Free Copper". If it is high then you may be copper toxic even if blood serum levels are low. Copper is tricky like that me thinks!
     
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  8. TrixieStix

    TrixieStix Senior Member

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    RosieBee and Little Bluestem like this.
  9. aquariusgirl

    aquariusgirl Senior Member

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  10. TrixieStix

    TrixieStix Senior Member

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    I am back to looking into the copper thing. I saw Dr. Chheda at Open Medicine Institute last week and she is also wanting to explore this more. She is wanting me to find a doctor here in WA State where I live who can shed more light on it. She says she did some reading up and there are other conditions besides Wilson's that cause copper deficiency. And as you know copper deficiency and me/cfs share a lot of the same symptoms.

    Have you found out any more since we last messaged?
     
  11. aquariusgirl

    aquariusgirl Senior Member

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    There is no one treating this
     
  12. aquariusgirl

    aquariusgirl Senior Member

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    http://www.ticktalkireland.org/biofilms.html
    Cohen: They’re fantastic. It’s like the missing piece. I had one little autistic boy who lives in the city who is loaded with viruses and infections and is now almost fully recovered. His mother used to complain about the terribly high levels of copper in his bloodstream and that his hair was like a copper mattress. We measured the hair but there was a marginal amount of copper in it. He was not eliminating. As we got into the thick of the biofilms his copper blew out of his body in his stool, for months and months. He’d been loaded with copper. I’ve had other children struggling for ages to get mercury out, and out it came.
     
  13. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Having normal, or even low urinary copper , and the absence of KF rings doesn't rule out WD, so if you think you could still have it, you might want to pursue it further.

    I would be very wary of supplementing copper.

    Someone with confirmed WD but low/normal urinary copper has posted about this here;

    https://www.inspire.com/groups/wils...on/low-or-normal-24-hour-urine-copper-levels/

    and here;

    https://www.inspire.com/groups/wils...y-daughter-has-wilsons/?ref=as&asat=478528585
     
  14. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    There is another drug that looks promising;

    https://en.m.wikipedia.org/wiki/Ammonium_tetrathiomolybdate
     
  15. aquariusgirl

    aquariusgirl Senior Member

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    Is anyone using it?
     
  16. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    I'd like to.
     
    Last edited: Jan 18, 2017
  17. aquariusgirl

    aquariusgirl Senior Member

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    No one is going to prescribe it because we can't show we have excess oxidized copper.
     
  18. TrixieStix

    TrixieStix Senior Member

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    Have you had your serum copper and ceruloplasmin retested recently? I am thinking maybe I need to be seen by the "Biochemical Genetics" Clinic at large hospital near me. I am going to contact them.

    I just dug this up last night. Seems they have discovered a new copper dysregulation disease.
    This is true however...it is seen most often in ppl with hepatic Wilson's Disease symptoms rather than neurological symptoms. In my case it is neurological symptoms so not having KF rings nor increased urine copper makes WD highly unlikely.

    There are other copper related diseases as well. One (info below) was just discovered recently and the fact that copper deficiency can cause neurological problems/damage was only discovered recently as well. Lots we still don't know.

    "Remarkably, a newly discovered ATP7A disorder—isolated distal motor neuropathy—has none of the characteristic clinical or biochemical abnormalities of Menkes disease or its milder allelic variant occipital horn syndrome (OHS), instead resembling Charcot–Marie–Tooth disease type 2."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214867/
     
  19. TrixieStix

    TrixieStix Senior Member

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  20. aquariusgirl

    aquariusgirl Senior Member

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    Apparently Laszerin is in phase 2clinical trials
     

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