Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Oct 16, 2012.

  1. our supps or not? I thought I had read a while back that those of us with CFS should omit copper and iron from our supplements (I forget why). So I bought a multi vitamin that doesn't have either one some time ago and been on it a while now. But now I read in Dr. Myhill's info that Superoxide dismutase (SODase) is the most important super oxide scavenger in muscles and that it is dependent on copper, manganese and zinc. She says that deficiency can explain muscle pain and fatigability in some patients. She recommends 1mg of copper in the morning along with the manganese and zinc, taken seperately throughout the day. She doesn't mention iron. I'm assuming we should still avoid iron in our supps, but I'm not sure why. Can someone please explain this to me? Rich was always the one who could answer these questions... I sure hope there's someone else out there who can clear this up for me... I need all the help I can get... thanks!

    [This Message was Edited on 10/16/2012]
  2. IanH

    IanH Active Member

    Actually little is known about this in ME. some work was done on FM where a study published in 2010 showed a significant difference in serum ferritin (iron) levels between healthy people and those with fibromyalgia. Researchers concluded that low iron created a 6.5-fold increase to the risk of fibromyalgia.

    I am not sure about their conclusion though.

    In Parkinsons disturbances in brain iron metabolism are linked with synucleinopathies ie. in Parkinson's disease, iron levels are increased and magnesium levels are reduced. So a person with Parkinsons should be cautious about taking iron. Magnesium supplementation is recommended for Parkinsons.

    There is some evidence that high levels of magnesium supplementation do decrease copper absorption and iron absorption. This is possibly only in certain groups of people generally (Not known for ME/CFS). However some clinicians report low levels of copper and iron in ME/CFS. I think this is why Dr. Myhill recommends these. The low levels of copper in ME are consistent with another study which found high urine levels of copper in people with ME.

    I would be cautious. However the amount of these in multivites would generally be safe. Best is to get blood test done. If iron is on the low side then a slow/timed release supplement might work or just what is in multi.

    Almost all people with ME and FM should be taking magnesium as it has been consistently shown to be low.

    Most people (even healthy) are deficient in zinc. However again in certain localities the zinc levels in the veges, fruit and fish/animal proteins can be higher. Some seafoods are high in zinc. If zinc is low then a 20-25mg supplement of zinc could suffice (depending on whats in the multi). If blood levels are unknown a multivite level of zinc would be safe.

    Re enzymes: the metalloprotein levels of most enzymes, such as SOD is very low so a moderate diet will fulfill these needs. However ME is not normal.

    I take the following, even though my levels were normal-low (except for Magnesium which was very low)

    Magnesium 350mg elemental Mg (this is a high dose but safe)
    Zinc 12.5 mg daily (comes in multi and my vitamin D formulation)
    Manganese and copper in multi ( about 2mg each)
    Iron 18mg in daily multi and we take a 20mg slow release once weekly

    Normally iron supplementation is ill-advised in healthy people. This form the NIH:

    Because known risk factors cannot explain all cases of heart disease, researchers continue to look for new causes. Some evidence suggests that iron can stimulate the activity of free radicals. Free radicals are natural by-products of oxygen metabolism that are associated with chronic diseases, including cardiovascular disease. Free radicals may inflame and damage coronary arteries, the blood vessels that supply the heart muscle. This inflammation may contribute to the development of atherosclerosis, a condition characterized by partial or complete blockage of one or more coronary arteries. Other researchers suggest that iron may contribute to the oxidation of LDL ("bad") cholesterol, changing it to a form that is more damaging to coronary arteries.

    So, since ME is a disease involving higher than normal ROS production and poor detoxification then one would assume that taking iron would require much caution. However I suspect the NIH statement does not take into account magnesium levels. ie. if magnesium levels are high it may offset these effects of iron on cardiac tissue and ROS production in general.
    [This Message was Edited on 10/16/2012]
  3. Thanks so much for taking the time to share this info with me, Ian! I so appreciate it!

    So basically, there is no easy answer... as is usually the case with this disease... I had been taking a multi that had iron and copper in it till I read, I believe in Dr. Cheney's basic protocol, that we should avoid it. So I found a multi that had neither iron nor copper and have been taking that one for a while now. But when I read Dr. Myhill's protocol, I was confused on this issue. I do take a good bit of magnesium... esp at night to help me sleep.... so maybe the little bit of iron and copper in the multi would be ok then. Just didn't want to take it if it could exacerbate my ME.

    Btw, when you refer to ROS production, can you tell me what that stands for? My brain isn't as sharp as it used to be... esp lately! Thanks again, Ian!

  4. IanH

    IanH Active Member

    Yes I do think the copper and iron in the multi will be OK (as long you don't have heart disease)
    R.O.S. means reactive oxygen species and is the basis of oxidative stress resulting mainly from the making of ATP our main energy source in the mitochondria of cells
  5. Is R.O.S., then, a byproduct of the manufacture of ATP in our mitochondria as just part of the chemical process in all human beings (whether ME or not) but is a problem in ME because of our mitochondrial dysfunction and compromise ability to detoxify?? Or is R.O.S. a consequence unique to ME? Just trying to understand... not easy these days! Thanks Ian!
  6. IanH

    IanH Active Member

    Yes ROS are a by-product of burning energy to make ATP in all animals. People with ME have a variety of "deficiencies" or "blocks" in function. The most well known being glutathione which is a key anti-oxidant in the mitochondrial membrane. Not enough is known about this but it is clear that IFN-gamma (Interferon gamma) is upregulated and when this happens without proper "depression" the IFN attacks the mitochondrial membrane and increases the amount of ROS produced, probably because it is interfering with the function of the glutathione enzymes or maybe just because the electrical potential of the membrane is lowered making the membrane more permeable.

    Also vitamin D is critical protector of cells via glutathione regulation. So if vitD levels are low then glutathione is low. vitamin D also minimises the production of another set of damaging substances, the RNS (reactive nitrogen species). These are also produced in energy production. In particular these are what also cause skin cancer from sun damage. This is why vitamin D protects our skin from the sun. (sorry I digress)
  7. As always, you are a wealth of information and I appreciate it more than I can say! No need to apologize for "digressing".... ALL info is much appreciated. I am always trying to glean as much info as I can in the hopes of finding things that will help reverse the effects of this disease (as I know we all are doing). I just have trouble with my memory now as a result of this DD. That's why I try to print off great info like yours so I can refer back to it.

    Based on what you mentioned about vitamin D, my system must REALLY be messed up.... because I take 5000 IUs of vit. D twice a day and yet I STILL got this squamous cell carcinoma. I don't even get out in the sun much anymore since my disability has increased with the ME over the years. However, in my younger days, I spent A LOT of time at the beach and tanning... sometimes getting terrible burns.... so maybe that's why I've had two skin cancers now. As a result of all the sun damage that was done... I don't know.

    But thanks so much, Ian, for taking the time to share this valuable info with me (and anyone else on this board who reads it). God bless you!

  8. IanH

    IanH Active Member

    I grew up in zimbabwe and suffered sun-stroke twice and severe sun burn many times. My brother also.

    The difference between him and me now :
    is that I have taken ascorbic acid since I was 20, taken magnesium for the last 15 years, zinc for last 10 years and vitamin D for the last four years

    Also after coming to NZ I knew that the sun was a problem here (worse than Africa) because of the ozone hole right above us and because the coolness gives a false impression. I never believed in the sunscreen and have never used it. I always believed in getting sun exposure through the winter (not easy here) so that when the summer came I wasn't getting sun on very white skin. When I started taking vit D I took 10,000 IU through the winter even with as much sun as possible. Turns out I was right. The more vitamin D you have in your skin the better shield you have against UVA. You are correct in saying that the early years damage puts you into a high risk category.

    Whereas my brother has avoided the sun and uses sun-screen, takes no vitamin D, K2, magnesium or zinc or vitamin C. Since coming to NZ he has had two carcinoma and one melanoma all removed by surgery. I had a mild keratosis on my nose which I cleared up using flouro-uracil and ascorbic acid. I am 64 and he is 61.