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copper coloured ring around pupil; copper toxicity?

Discussion in 'General Symptoms' started by leaves, Aug 2, 2010.

  1. leaves

    leaves Senior Member

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    Hey all,

    I have this copper ring in my otherwise blue eyes. I know that autists have problems with copper toxicity. PWC and PWA are so alike so I thought maybe this indicates I have a problem with this too?
    I know that zinc is indicated for this, but what dosage I do not know. Any other suggestions?
  2. anciendaze

    anciendaze Senior Member

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    You are describing a very specific sign of Wilson's disease. Get someone knowledgeable to check.
  3. leaves

    leaves Senior Member

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    i thought that wilsons was a circle around the iris and not the pupil? It is also not really a round ring but more a starry ring, if that makes sense?
  4. zoe.a.m.

    zoe.a.m. Senior Member

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    Have to agree about the Wilson's and the need to have it checked asap. I'm not sure which type of doctor to see about it but it would have to be one who has an interest in finding right answers rather than a doctor who wants to be right. It's definitely a sign (and a visible one!) that something is amiss.
  5. Garfield

    Garfield

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  6. leaves

    leaves Senior Member

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    Ok I will ask my DAN Dr, I am sure he knows how to test for copper toxicity and Wilsons. (Can really recommend it; if you cant find a CFS Dr, get yourself a Dan Dr they are very sympathetic and knowledgeable and are used to work with the patient)
    Thanks all!
  7. leaves

    leaves Senior Member

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    Wow read this from http://chronicfatigue.about.com/b/2010/01/07/british-xmrv-study-results-released.htm

    ifthly, in the search of a diagnosis for CFS/ME, I stumbled upon a disease called Wilsons disease. A widely respected neurologist thought I might have Wilsons disease, because my ceruloplasmin and ceruloplasmin-bound copper levels in the blood were rather low : reduced ceruloplasmin levels and raised non-ceruloplasmin-bound copper levels. After quite some time, it turned out that I did not have Wilsons disease, because I had it all checked out with a genetician.

    Nevertheless, I seemed to have quite a deal of things in common with people who have Wilsons disease. One of these things is that I seem to have Coombs-negative intravascular hemolysis or Coombs-negative immune hemolytic anemia, or Coombs test-negative hemolytic anemia, or Severe hemolytic anemia with a negative Coombs test. Acute hemolytic anemia is found in Wilsons disease : Coombs-Negative Hemolytic Anemia is a recognized but rare (10-15%) complication of Wilson Disease. But also in human T-lymphotrophic virus 1 (HTLV-1) retrovirus, you will find Coombs-negative hemolytic anemia. So, Coombs-negative acute or chronic hemolytic anemia seems to be retrovirus-mediated. High urine copper levels were first thought to be unique to Wilsons disease, but it is also found in cancer, and now there is a growing body of evidence that this problem also seems to be present in CFS/ME.

    In MuLV retroviruses the amount of vascular endothelial growth factor (VEGF) is known to be increased, and as CFS/ME will turn out to be a MuLV-related disease, I can now truely say that there seems to be a high-level of constant compensation going on in CFS/ME for the shortage of red blood cells, so that regular blood tests in CFS/ME will never show a shortage of red blood cells : during the initial stages of CFS/ME even quite to the contrary. Why should that be the case ? In CFS/ME hemolytic anemia is a hidden problem, that you have to discover by a lot of good thinking ! The amount of vascular endothelial growth factor (VEGF) is increased in CFS/ME. VEGF is undoubtedly increased in CFS/ME in order to constantly save the patients life. VEGF stimulates the generation of red blood cells : VEGF stimulates erythropoiesis. A CFS/ME individual is constantly fighting for his life.

    But increased VEGF or upregulation of VEGF is also known to be associated with neurodegeneration in MuLV. So there is constant fighting against neurodegeneration going on, and that is most probably part of all the exhaustion being experienced in CFS/ME.

    So a lot of red blood cells are constantly being destroyed in CFS/ME, resulting in copper being released from the red blood cells into the urine which is frequently shown in high urine copper levels, not at a same beautiful constant level as in Wilsons disease, but more in a waxing and waning way, which is why people with CFS/ME are chronically extremely fatigued and exhausted in the same waxing and waning way.

    And in CFS/ME there is not only this problem with red blood cells, but there is also this problem with neutrophils (a type of white blood cells), because these neutrophils are being recruited especially to areas of infection and inflammation in the brain and the spinal cord, and also to areas of infection and inflammation in the Gastrointestinal (GI) Tract, such as stomach and intestines.

    In order to compensate for all this retrovirus-induced loss of red blood cells and white blood cells (neutrophils), there is a chronic necessity for the production of new red blood cells and new white blood cells (especially neutrophils). All of these cells have to be newly produced at a much quicker rate than normally should have been the case in normal everyday human individuals, who are not infected with this Xenotropic MuLV-related retrovirus (XMRV), and who do not have such a debilitating disease such as is the case with CFS/ME. The result of all this, is that people with CFS/ME are chronically dehydrated, because there are often times when there is too much presence at the same time of not only the old destroyed blood cells, but also the newly produced blood cells, making the CFS/ME bodily environment overcrowded with blood cells, new ones and old ones all at the same time, resulting in a chronic dehydration, which is a hellish experience, you never get quite used to.
  8. Athene

    Athene Never give up

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    Leaves,

    This is really interesting. I have too much copper (seven times the max last time it was measured) adn my doc says this is typical in people with CFs, sometimes much higher.

    If you find out how to make it go down, please let me know.

    BTW, my sister, who does not have CFS, does have this copper problem too and she has the rings you described. She says that when she uses certain skin cleansing products the cotton wool goes green. Witch Hazel is the most extreme.
    I still haven't tested this myself, but I wonder if it happens to you?

    Anyway, the main point about my sister was that, maybe there is a genetic tendency to this (but something different from Wilson's disease), which goes with a genetic tendency to develop CFS?
  9. leaves

    leaves Senior Member

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    Athene that is so interesting !! Copper toxicity for sure can explain a lot of my symptoms...
    I know that they recommend you to take zinc (preferably zinc acetate, but thats hard to find without prescription) and to avoid eating nuts, dried fruits, chocolate and other high copper foods, see also http://www.gicare.com/diets/Copper-Restriction.aspx. Wilson patients are treated with copper chelators as Penicillamine or trientine hydrochloride which has less side effects.
    So I think first for us is to find out how to get tested for it, and then we could ask our dr's to prescribe those chelators, no?
    How did you get tested?
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What is a DAN Dr.?
  11. JT1024

    JT1024 Senior Member

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    I think DAN = Defeat Autism Now
  12. zoe.a.m.

    zoe.a.m. Senior Member

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    Has anyone been tested for copper levels? I do remember reading/hearing about abnormal levels with ME/CFSer's at some point and I think the symptom overlap certainly begs the question of why not get tested for it??

    If anyone has had this test: was it a specialty test, best done through an alternative med doctor?

    Good luck Leaves in finding out what this means!
  13. leaves

    leaves Senior Member

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  14. Athene

    Athene Never give up

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    I had my copper level tested along with many other toxic metals by a lab in Germany. You are given two chelators intravenously and then your urine is collected over a period of hours. If you doc agrees to do the test, they send him the whole kit and instructions, as the urine can be delivered later (it doesn't have to be fresh).
    If anyone wants details of this lab, let me know and I'll dig out the details. It's the one used by KDM. By the way, you need your doctor on board 100 percent with this one. The drugs for administering the test have to be prescribed and administered by him (in some counries you probably have to do it in hospital) and the lab absolutely refuses to give the result to the patient, only to the doctor.

    I have wondered about chelation therapy since then, and I have bought the Andy cutler book about chelation to learn more. The dosage I was given for the test made me so ill that there is on way I could have that therapy over a period of months. I was bleeding out of my joints and I had such a bad headache that I ended up going a bit hysterical and beating my head against the wall. Cutler recommends very low doses of chelation given continuously day and night - also a very heavy going therapy as you have to set an alarm clock and keep waking up to take the tablets.

    I have tried the methylation/supplements approach to chelation and it did nothing at all. In fact some minerals were actually higher after six months of it, not lower. So I am getting a bit sceptical about the whole "restoring the methylation cycle" issue. I suspect that the problem is not lack of certain nutrients but the body's inability to use them as it is supposed to.

    I just wanted to add a mention about zinc acetate. It reacts with H2S and turns into some blue compound. So I wonder if it would actually work in reducing copper, if it were busy bonding with H2S instead? I even wonder if that could be the reason for the copper build up? If the body uses zinc acetate to keep it under control, maybe our H2S problem blocks that process?
  15. antherder

    antherder Senior Member

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    Leaves,

    I've just come to the conclusion that I have excess copper in my system too. I know I have a problem with sulfites and probably also salicylates and have been reading about how too much copper can affect the pst pathway. f you haven't seen it already, this site has some useful information; http://http://www.learningtarget.com/nosulfites/copper.htm. I've started taking molybdenum. It's supposed to chelate copper, and improve the processing of sulfites. Have you tried it? I'm only taking a very low dose right now as I have severe GI problems and can tolerate very few supplements. One strange thing I've noticed is that it dramatically reduces how much I sweat. Very peculiar.
  16. antherder

    antherder Senior Member

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  17. leaves

    leaves Senior Member

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    Thank you so much for that info! That's interesting; I have disturbed pst enzymes and problems with sulph. Pathway. How much zinc do you take?
    I've been taking molybdenum for a year now, at first it helped but the effect tapered off. Lately I was taking 50mcg I will up it to 250.
    I already have a good water filter.
  18. leaves

    leaves Senior Member

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    Hi Athene
    I don't think that zinc acetate is the only thing that works, all zinc types do the job altho maybe less effectively.
    I think I will start avoiding the major sources of copper and increase my zinc and moly intake and do the copper serum test later this year and will then also consider the copper chelators.
  19. antherder

    antherder Senior Member

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    leaves,

    I was taking Metagenics Zinc Drink on and off, until I realised it was making me queasy. It has zinc sulfate 50mg. Also contains magnesium and also B6. Years ago, before my tum trouble started this product really improved my energy levels, but I haven't been able to replicate that. Sigh. I have read that B6 can be bad for sulfite sensitivity, but is okay if taken with magnesium. I'm not sure what form of zinc to try next...

    I have been trawling the internet, trying to piece the pst stuff all together.You might know all this already, but in case don't... I've read that copper toxicity can be caused/exacerbated by adrenal fatigue. If your adrenals aren't functioning properly, they won't produce the stuff that binds copper to make it useable by the body. Unbound copper then accumulates in the brain and liver, causing imbalances in zinc, vit c, iron, molybdenum etc, exacerbating pst pathway problems. So you can be copper toxic, and copper deficient at the same time. Delightful, isn't it. Have you ever had your adrenal function tested? I did that eye test (http://www.adrenalfatiguerecovery.com/adrenal-function-tests.html), no idea if it's really that accurate. Twas seriously scary though! Major flickering! Eek! Anyone else know if it's reliable?

    What perplexes me re the copper problem, is what do you do if your body can't bind the copper, as I've read there's no easy fix for adrenal fatigue. I wonder if there is a bioavailable copper supplement. Gonna google that real soon...

    Just be careful re chelating copper. I have actually got a lot worse lately, since attempting to get excess copper out of my system. I took some chlorella for a few weeks and felt considerably more faint than usual, so have had to take things slow. Hopefully just a detox effect. I am a little wary of the molybdenum as it apparently enhances fluoride, and I have way too much fluoride in my system--clearly evident every time I smile--so maybe that's why I feel worse.

    Not going to give up though as I feel like I'm finally starting to understand why I'm so sick. Just not sure what to do about it. I hope you have some success with your treatment.
  20. leaves

    leaves Senior Member

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    Hmmm yeah, difficult.
    I was also reading that the HIV virus feeds of zinc and now I'm wondering if xmrv would do the same?

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