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.
Phlebotomy anyone?
M, I just spoke with Dr Murakami (my dr when I thought I had lyme disease) He is retired now but still active in the lyme research. He has some bl tests of mine..anyway,I explained a little of the hh theory as it relates to ms...He is stopping in later to bring tests etc..I forwarded your letter to him as you said it's ok to use your info?? He still has contacts at ubc and perhaps can help us get the word out there....wish my test results were in... He seemed quite interested in this and has followed zamboni's work...
Last edited by katie45 on Sat Mar 06, 2010 2:43 pm, edited 1 time in total.
Katie-please copy anything you want, and I thank you for doing what you've done! You see, the big advantage that we are going to have is that we are so easy to identify through iron metabolism panels. Nothing could be easier. Testing the genetics would be useful on one level, but if we are iron loading, we are iron loading! You cannot refute the lab results if they are interpreted correctly. So far, most of us have had one category either out of reference range or very nearly so. To me it is enough to just try the phlebotomies. I just wrote to Rebecca Lavoie@consumerhealth.com, I find her article on iron loading very interesting and I will fax off a letter to Dr. Paul Cutler tomorrow.
http://www.consumerhealth.org/articles/ ... 0303204921
http://www.consumerhealth.org/articles/ ... 0303204921
except for my TIBC my levels were in range I think, but when you look at family history we are definitely sharing some abnormality..after the wonderful relief I got after the blood draw,I am noticably back to that painful living hell again..there has to be a reason...The only hope i see are trial phlebs like you say.
Dr. Paul Cutler,
Steve Barfield gave me your name as a possible contact that might be interested in my investigations. I am a 54-year-old woman with Primary Progressive MS. I have been using a wheelchair full-time for about six years. I do not want to go into all of the complicated details that led me to my present conclusion, but suffice it to say that I believe that a great number of people that have been diagnosed with MS actually have iron overload due to undetected hemochromatosis.
I started to wonder where all of the iron was coming from when Dr. Paulo Zamboni appeared on the scene. Using an Internet forum, ThisIsMS.com, a group of us started to discuss iron metabolism. Five of us have run iron metabolism panels and genetic testing. All five of us are heterozygote and clearly in a state of iron overload. My transferrin saturation is 44%, my TIBC is 45, ferritin was 66, total iron was 20. Steve Barfield concurs that I have hemochromatosis. My doctor thinks my iron panel was "abnormally normal!", but he agreed to do a trial phlebotomy. The results of this was astounding for me because I had an immediate reduction in spasticity by about 20%, my hand function returned by about 20%, and I could sleep at night without spasming. I also felt like my brain was communicating with my limbs better.
The second phlebotomy did not further reduce spasticity, but it seems to have lightened my skin tone somewhat (my suntan no longer fades), I have better mobility and strength in my left arm/shoulder, and my bladder is behaving better. And all the while I have maintained the improvements from the first phlebotomy. I now believe that most of my symptoms are the result of undetected iron loading. This is so outside mainstream understanding of MS, I do not know what to do about it. I see a possibility of complete recovery, but no way to make that happen because I think that the iron loading heterozygote population is unrecognized. Well, iron loading is generally unrecognized period. My GP is not going to be willing to do enough phlebotomies to get me well.
One woman in New Zealand donated blood as that is allowed with MS in New Zealand, and she had a complete amazing remission of all symptoms!
Do you know of anyone in the Victoria area that might want to investigate phlebotomy as a way of treating MS? In general or me specifically? It is clear to me that the root cause of my MS is iron poisoning. A clinical trial of phlebotomy would be so economical, a fraction of the usual cost. Us iron loaders can be identified so easily by iron metabolism panels, and I am sure there are thousands of us.
How can I convince a doctor that some MS might just be hemochromatosis? And that we could be treated as having hemochromatosis? Iron panels are a fraction of the cost of an MRI. Phlebotomies are a fraction of the cost of the MS pharmaceuticals, which are not very effective anyway. Everyone that I can convince to do an iron metabolism panel is showing nonstandard results.
I do not normally beg, but I feel desperate. I see the solution within grasp, but trying to convince the standard physician that MS is caused by abnormal iron metabolism is going to be a difficult sell. I want to be the first person in the world to reverse Primary Progressive MS through the very simple treatment of monitored phlebotomy. I am hoping some eminent doctor like you will be motivated to get involved. The world would be amazed at such an efficacious and cost effective treatment!
I no longer believe any of the normal explanations for multiple sclerosis, and it would be so easy to identify what percentage of this population is suffering from iron poisoning. HELP!
Steve Barfield gave me your name as a possible contact that might be interested in my investigations. I am a 54-year-old woman with Primary Progressive MS. I have been using a wheelchair full-time for about six years. I do not want to go into all of the complicated details that led me to my present conclusion, but suffice it to say that I believe that a great number of people that have been diagnosed with MS actually have iron overload due to undetected hemochromatosis.
I started to wonder where all of the iron was coming from when Dr. Paulo Zamboni appeared on the scene. Using an Internet forum, ThisIsMS.com, a group of us started to discuss iron metabolism. Five of us have run iron metabolism panels and genetic testing. All five of us are heterozygote and clearly in a state of iron overload. My transferrin saturation is 44%, my TIBC is 45, ferritin was 66, total iron was 20. Steve Barfield concurs that I have hemochromatosis. My doctor thinks my iron panel was "abnormally normal!", but he agreed to do a trial phlebotomy. The results of this was astounding for me because I had an immediate reduction in spasticity by about 20%, my hand function returned by about 20%, and I could sleep at night without spasming. I also felt like my brain was communicating with my limbs better.
The second phlebotomy did not further reduce spasticity, but it seems to have lightened my skin tone somewhat (my suntan no longer fades), I have better mobility and strength in my left arm/shoulder, and my bladder is behaving better. And all the while I have maintained the improvements from the first phlebotomy. I now believe that most of my symptoms are the result of undetected iron loading. This is so outside mainstream understanding of MS, I do not know what to do about it. I see a possibility of complete recovery, but no way to make that happen because I think that the iron loading heterozygote population is unrecognized. Well, iron loading is generally unrecognized period. My GP is not going to be willing to do enough phlebotomies to get me well.
One woman in New Zealand donated blood as that is allowed with MS in New Zealand, and she had a complete amazing remission of all symptoms!
Do you know of anyone in the Victoria area that might want to investigate phlebotomy as a way of treating MS? In general or me specifically? It is clear to me that the root cause of my MS is iron poisoning. A clinical trial of phlebotomy would be so economical, a fraction of the usual cost. Us iron loaders can be identified so easily by iron metabolism panels, and I am sure there are thousands of us.
How can I convince a doctor that some MS might just be hemochromatosis? And that we could be treated as having hemochromatosis? Iron panels are a fraction of the cost of an MRI. Phlebotomies are a fraction of the cost of the MS pharmaceuticals, which are not very effective anyway. Everyone that I can convince to do an iron metabolism panel is showing nonstandard results.
I do not normally beg, but I feel desperate. I see the solution within grasp, but trying to convince the standard physician that MS is caused by abnormal iron metabolism is going to be a difficult sell. I want to be the first person in the world to reverse Primary Progressive MS through the very simple treatment of monitored phlebotomy. I am hoping some eminent doctor like you will be motivated to get involved. The world would be amazed at such an efficacious and cost effective treatment!
I no longer believe any of the normal explanations for multiple sclerosis, and it would be so easy to identify what percentage of this population is suffering from iron poisoning. HELP!
No, I'm definitely going backwards. I've had afternoon sleeping sessions for 10 days out of the past 12. My hip joint is aching badly, as well as knees. I'm at the point that when I start to feel sleepy in the afternoons it's like being anaesthatised. My husband has been doing some building jobs lately, as I haven't needed any help in our business since the phlebotomy. On Friday afternoon I had to sleep, it hit me like a brick about 1pm, and he was out on a job. I needed to pick up my daughter at school at 3pm so only had two hours spare, so I put the alarm clock on and took the sleep. The alarm apparently went off no problem, but I slept right through it, and finally woke up 45 minutes too late. Poor kid was waiting in the office at school. It was like being in a coma.
My husband always says he can't wake me, but I didn't really believe him until now. What I do is NOT normal sleeping. It comes over like a wave. I'm feeling it now and it's only 11.45am. If i lie down I'll be gone.
Back to the doctor tomorrow. One blood take and I'll be fine, but will they give it to me? This is like torture!
My husband always says he can't wake me, but I didn't really believe him until now. What I do is NOT normal sleeping. It comes over like a wave. I'm feeling it now and it's only 11.45am. If i lie down I'll be gone.
Back to the doctor tomorrow. One blood take and I'll be fine, but will they give it to me? This is like torture!
Hi Merlyn, the only reason I'm allowed to is because I don't have a DX for MS. You must have two episodes, ie: multiple to be diagnosed officially here, that's why my sister can't donate, she has a DX.One woman in New Zealand donated blood as that is allowed with MS in New Zealand, and she had a complete amazing remission of all symptoms!
NZ is in the same boat as Canada.
http://hemochromatosis.blogspot.com/
good info and video...grandmther,aunt,other family w strokes
THIS SHOULD INFURIATE ALL OF US!
good info and video...grandmther,aunt,other family w strokes
THIS SHOULD INFURIATE ALL OF US!