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I finished this book last night. Marie Warder the founder of the Canadian Hemochromatosis Society, the founder of International Associations Of Hemochromatosis Societies, the founder of the South African Hemochromatosis Society... the story is unbelievable. This was not a wealthy woman, and she devoted her life to educating doctors and the general public about the dangers of too much iron. Her husband was homozygous, meaning that he had both genetic mutations and therefore developed full-blown hemochromatosis. Marie it turned out was a heterozygote, carried one gene... but because of this her daughter developed full-blown hemochromatosis. Fortunately, I then Marie and her husband knew enough to have her tested and got the diagnosis early before she developed organ damage.

People with hemochromatosis lack an enzyme in the gut the controls iron absorption. Normal people of absorb maybe 2% of the iron they eat, but people with genetic mutations can absorb up to 10% of what they eat and therefore accumulate iron in the liver, pancreas, kidneys, heart muscle, all over the body... there seems to be a strong Northern European factor going on... these genetic mutations are very rare in the Inuit, North American Indian, not very common in Asian ancestry. The book was written in 1999, so I'm not sure how current some of the information is. Because in the book she says there has never been a case of HH (Hereditary Hemochromatosis) in North American Indian populations or the Inuit... isn't this the group that very rarely develops MS????

What blew me away is the treatment. In cases where the hemochromatosis has been undiagnosed until the person is in middle age, phlebotomy (bloodletting) must be continued for life... but get this! In order to get the iron down to normal levels, blood must be given/let twice a week for up to three years!! People have to get a gallon of blood a month for 2 to 3 years before their levels get down to normal. Iron is stored in the liver and other organs causing all kinds of damage.

What this tells me is that chelation will take a long time. Also, what is interesting is that in the last decade they are discovering new mutations for iron loading. We do not know who all is at risk, one because they do not test people properly, serum ferritin is not a very standard test yet (I had to ask my doctor to run this, and then he said that I could not have a problem with iron because the hemoglobin was always normal... this is totally false hemoglobin is always normal in hemochromatosis!) My doctor is Irish of all things, and he didn't even know about how common hemochromatosis is the Irish. In fact, he said "well I'm Irish, I would know about it!"

This woman's story flattened me with awe. She dedicated her life to educating the medical profession and the lay public about the ravages of hemochromatosis, living on a shoestring to do so. I suspect that MS is a iron loading condition, and I am going to press for DNA testing to see if I am a heterozygote. Marie Warder says in Darwinian language, that when iron was hard to get in the diet way back when, it meant survival to have the ability to absorb more iron in your diet. But now, especially because they are adding iron to absolutely everything, it is a dangerous dangerous mutation. Just reading this book made me want to join the campaign to get nutritionists to demand that they stop iron addition to absolutely everything like white flour. Nobody needs that much iron! Some products that are already made with white flour, are then "enriched" with even more iron. And I am as guilty as sin. For some stupid reason, despite studying nutrition and heavy metals, I have believed that the more iron the better. Thank you Marie Warder for opening my eyes. This woman was absolutely brilliant.

http://blogcritics.org/scitech/article/ ... is/page-2/


One possible involvement I had steered clear of was that of esophageal varices or enlarged veins in the throat. To me this was just too horrible to contemplate. I now consider that I erred in this omission from my booklet, for I now believe that to have shrunk from all mention of this complication was sheer cowardice. Could this have been simply another manifestation of my never-failing inclination towards euphemism? Since the time when one of my earliest correspondents had described to me her husband’s death as the result of a massive hemorrhage, I had added to my files several accounts that were similar. If I had written about them, I might have done much good.

In general the word “varices” refers to distended veins (from "varix," a word derived from the Latin word for “twisted”).

Merlyn,

Is your skin tone bronze, your liver and spleen swollen?

this is a good article on the symptoms of and diagnosing hemachromatosis
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I would not say I am bronze, but I do have a tan still from the summer, my skin turns brown very easily. However, I don't know the you have to have full-blown HH for iron overloading, you only have to carry one genetic mutation, you only have to be a heterozygote to accumulate more iron than you should... I just had my ferritin test which came out of 66, but I want further investigation into the transferrin saturation, and hopefully can get that testing...


http://www.ncbi.nlm.nih.gov/pubmed/18408021

for argument's sake, it does't matter whether you are full blown HH or not--either you are accumulating iron, or you are not. The symptoms would be the same--bronze tone skin, swollen liver and spleen (and believe me, you know you have these if you do--I've been there with severe liver damage, which affected spleen). Aand it would show up in your blood tests.

I work for the publisher of The Bronze Killer which you have mentioned, and I passed the link on to Marie Warder who made an amazing remark.
"Like all authors I love it when people praise my books - but The Bronze Killer is special. The joy I derive from reviews such as Merlyn's is the satisfaction of knowing that one more person knows about HH and will help to spread the word:"

I also discussed with her the subject of venesection (blood letting) versus chelation, and she explained that just as the more you milk a cow, the more milk you will get, and chelation is thus too slow. Iron stores re-accumulate and tissue damage could occur.

Chelation can be used, for instance when someone is being treated to with Interferon for Hepatitis C, as the drug does not work well when the patient’s ’s iron stores are high. Another interesting thing she told me was she had written a newsletter in 1993 in which she had stated that Parkinson’s an MS patients have too much iron an in the brain and that malaria could be treated by chelation because the parasites cannot survive without iron!

In case you are interested, you can go to her website www.dromedarisbooks.com , click onto The Bronze Killer page, and scroll right down to the bottom where you can see a video featuring some of the people featured in the book, and also the first phlebotomy ever shown on TV.

Hello Hemie! My jaw dropped when I read your message. And I thank you very much for the input on chelation, because it is something I have been questioning. I am of Irish descent, and I have 1 billion questions roaming around my head. My father died of a heart attack at 70, but he had been dealing with high blood pressure for many years. Seems to me that if one has too much iron they would have thick blood and suffer from arteriosclerosis. I know when I have blood taken, the lab technicians always end up using butterfly needles because they cannot get the blood out by ordinary means.

I swear, because I am Primary Progressive, wheelchair bound and getting more spastic all the time, I am interested in pursuing phlebotomy. I will get home kits if I have to. I got much worse at menopause, and the progression has upticked to a frightening degree, especially my hands. A friend of mine with the same diagnosis of primary progressive is now in an adult group home with a baclofen pump in her spine. She has been on the type of birth control pills that prevents bleeding... she is only 45. I wonder if the lack of bleeding has made her that much worse. Thanks to Marie Warder some of my own health history make some sense, although I do not really fit the profile of hemochromatosis. But again, as they are making new discoveries about genetic mutations for iron overload, and transferrin and how it relates to iron depositions in the brain, our understanding is as yet infantile.




I did not pay any attention to iron because I was anemic as a teenager and a young adult. I was also extremely hypothyroid, with an inability to convert T4 to the active form of the thyroid hormone T3. I sincerely thought the more iron the better due to early health history. When I was studying nutrition in 1977/78 at the University of New York, they said do not eat too much wheat bran or psyllium because it had phylates that would bind to important minerals like iron and zinc and you would end up anemic, so I ate lots of iron rich foods and used cast-iron cookware! Even when I was severely hypothyroid, before medication, my ferritin was 88 and I remember the Dr. being puzzled because she said people that are hypothyroid like that are usually anemic... I attributed my recovery from anemia to the cast-iron cookware and I kept using it, sometimes I was very pleased that my spaghetti sauce would be almost black from cooking it in a big cast iron cauldron!

Thank you again for your message.

Chelation is just expensive snake oil. What on earth is becoming of this website?