Posted: Sat Mar 06, 2010 12:50 pm
I wrote to the columnist at my local paper this morning that has been covering Zamboni and CCSVI:
Hello Richard,
You did not know me, I am a woman with MS that is 54 years old and in a wheelchair for six years. I live in Sidney, and have long been a medical researcher of sorts. A group of us have been making some rather startling discoveries that I don't know what to do with. When Zamboni appeared on the scene, I didn't pay much attention at first. He had said outright that this angioplasty procedure would not be applicable to Primary Progressive MS, which is what I have. He said there were too many veins with PP MS clogged with iron, too close to the brain.
I have been interested in the effects of heavy metals on health for many years because I tested very high in mercury. However, chelation therapy did not help me, nor did sitting in an infrared sauna for a year have any positive impact. What Zamboni did was pique my interest in the iron. Where was at all coming from? People with normal metabolism do not collect gobs of iron that clog up major veins! So I Googled "twisted veins in the neck" and came across Marie Warder's blog. She founded the Canadian Hemochromatosis Society, the South African Hemochromatosis Society, and the Association of Hemochromatosis Societies! And on her blog she has information on "varcies", twisted veins that are the result of hemochromatosis, a genetic condition of course that causes people to over absorb iron. Normal people will absorb maybe 10% of the iron that they consume, people with hemochromatosis can absorb up to 40%!
Long story, but I did the genetic testing and I came back as a carrier. My background is Irish, one in six Irish carry this genetic mutation, one in nine Northern European carry it. I have five brothers and sisters, none have MS. Having a single mutation does not always cause problems, but it can. My iron metabolism panel showed that I have near hemochromatosis... meaning that I am one point below the transferrin saturation percentage for hemochromatosis (cut off is 45%), mine is 44%. Low TIBC (total iron binding capacity) can also indicate hemochromatosis, mine was 45, reference range 45-75. So once again, I would be out of reference range with one point lower. When I have talked to the Iron Overload Disorders organization in Florida, they basically said, you are a hemochromatosis patient.
But it is not just me! People with MS that are testing iron metabolism are coming out for the most part with abnormalities. We have five out of five people testing as heterozygote (single genetic mutation) for hemochromatosis. They all have elevated iron. I think what Zamboni is treating could very well be the result of iron overloading.
My doctor has kindly let me do a couple of trial phlebotomies (bloodletting) to see how I would react. It's a miracle! 20% reduction in spasticity, 20% return of hand function, bladder improvements, more mobility in arms! You have to understand that with primary progressive MS improvements are virtually unheard of. Each phlebotomy would remove 225 mg of iron, so I have only removed 450 mg. My ferritin was not alarmingly high, but transferrin is the protein that pick up iron and deposits it where it should not be, like the brain! Mine was at the upper limits. A still mobile woman in New Zealand donated blood because you can do that in New Zealand with MS, and she is now symptom-free. We have three others that would like to try phlebotomy because they are obviously iron poisoned, but nobody has ever heard of treating MS like hemochromatosis, which is treated through phlebotomy.
The reason I am writing to you is that this has to be investigated! When I look at the genetics of MS, it seems to me that it is the genetics of hemochromatosis. We can identify very easily people that are in a state of iron overload, and they can be treated immediately! I will be making an appointment with my doctor to discuss the latest astounding results of my second phlebotomy, but I feel compelled to make this as public as possible. Can you help me publicize what we are finding? It would be so inexpensive to run a clinical trial phlebotomy for those that are clearly iron poisoned. It is so astounding. The scientific literature clearly indicates the single genetic carriers can over absorb iron. I am one, and I am sure there are thousands of us.
Hello Richard,
You did not know me, I am a woman with MS that is 54 years old and in a wheelchair for six years. I live in Sidney, and have long been a medical researcher of sorts. A group of us have been making some rather startling discoveries that I don't know what to do with. When Zamboni appeared on the scene, I didn't pay much attention at first. He had said outright that this angioplasty procedure would not be applicable to Primary Progressive MS, which is what I have. He said there were too many veins with PP MS clogged with iron, too close to the brain.
I have been interested in the effects of heavy metals on health for many years because I tested very high in mercury. However, chelation therapy did not help me, nor did sitting in an infrared sauna for a year have any positive impact. What Zamboni did was pique my interest in the iron. Where was at all coming from? People with normal metabolism do not collect gobs of iron that clog up major veins! So I Googled "twisted veins in the neck" and came across Marie Warder's blog. She founded the Canadian Hemochromatosis Society, the South African Hemochromatosis Society, and the Association of Hemochromatosis Societies! And on her blog she has information on "varcies", twisted veins that are the result of hemochromatosis, a genetic condition of course that causes people to over absorb iron. Normal people will absorb maybe 10% of the iron that they consume, people with hemochromatosis can absorb up to 40%!
Long story, but I did the genetic testing and I came back as a carrier. My background is Irish, one in six Irish carry this genetic mutation, one in nine Northern European carry it. I have five brothers and sisters, none have MS. Having a single mutation does not always cause problems, but it can. My iron metabolism panel showed that I have near hemochromatosis... meaning that I am one point below the transferrin saturation percentage for hemochromatosis (cut off is 45%), mine is 44%. Low TIBC (total iron binding capacity) can also indicate hemochromatosis, mine was 45, reference range 45-75. So once again, I would be out of reference range with one point lower. When I have talked to the Iron Overload Disorders organization in Florida, they basically said, you are a hemochromatosis patient.
But it is not just me! People with MS that are testing iron metabolism are coming out for the most part with abnormalities. We have five out of five people testing as heterozygote (single genetic mutation) for hemochromatosis. They all have elevated iron. I think what Zamboni is treating could very well be the result of iron overloading.
My doctor has kindly let me do a couple of trial phlebotomies (bloodletting) to see how I would react. It's a miracle! 20% reduction in spasticity, 20% return of hand function, bladder improvements, more mobility in arms! You have to understand that with primary progressive MS improvements are virtually unheard of. Each phlebotomy would remove 225 mg of iron, so I have only removed 450 mg. My ferritin was not alarmingly high, but transferrin is the protein that pick up iron and deposits it where it should not be, like the brain! Mine was at the upper limits. A still mobile woman in New Zealand donated blood because you can do that in New Zealand with MS, and she is now symptom-free. We have three others that would like to try phlebotomy because they are obviously iron poisoned, but nobody has ever heard of treating MS like hemochromatosis, which is treated through phlebotomy.
The reason I am writing to you is that this has to be investigated! When I look at the genetics of MS, it seems to me that it is the genetics of hemochromatosis. We can identify very easily people that are in a state of iron overload, and they can be treated immediately! I will be making an appointment with my doctor to discuss the latest astounding results of my second phlebotomy, but I feel compelled to make this as public as possible. Can you help me publicize what we are finding? It would be so inexpensive to run a clinical trial phlebotomy for those that are clearly iron poisoned. It is so astounding. The scientific literature clearly indicates the single genetic carriers can over absorb iron. I am one, and I am sure there are thousands of us.
