This Is MS Multiple Sclerosis Knowledge & Support Community

Bethr
for some reason, the lab companies usually put 12-300 as the reference for ferritin on the reports. But if you look at any scientific site, they break it down to:

Male: 12-300 ng/mL
Female: 12-150 ng/mL

So maybe copy some of these references, and bring it to your doctors?

My test papers show the ferritin as per the female range (12-150).
It obviously means nothing to my doctors! They have no worries about it, even with all the thousands of medical papers out, saying high iron puts people at much higher risk of all sorts of disease.

I'm living proof of the difference, and there is not a chance in hell I'll ever let my iron get up to those levels again.
I purchased inositol (IP-6) today, so will start on that as well as the phlebs.
Wow, I can't believe I'm taking anything, it's never been my way.
I also got some Efalex.

B ethr, this is devastating news...5 yrs from now they'll be saying it was all iron probs. Infuriating is too mild a word..ignorance when combined with arrogance is downright dangerous!

Bethr-I go to my doctor tomorrow to ask for another phlebotomy and I do not expect him to agree. In Canada we don't even have the option of giving blood every now and then. I will have to be my own blood letter, in all probability I let you know.

Katie-I think they cloned the gene in 1996 and they have to know how to do this to be able to run a genetic test affordably

http://www.springerlink.com/content/c2120085686111u0/

LR1234-mercury binds to thiols, sulfur components. You can stir up a mess of crap with sulfur, I didn't tolerated for years, could not eat eggs or garlic or onions etc. etc. My amino acid tests always showed cysteine high off the range. Also, chelating too fast can really mess people up.

ForeverSpring-are you still following this thread? How are you?

Trent-I think you need a thyroid test, a proper thyroid panel that tests free T3, free T4, TSH, and thyroid antibodies. Cold hands and feet are usually thyroid but I don't know if we understand all of the consequences of iron overload. It can accumulate in the thyroid and cause people to be hypo-thyroid. I am glad that you are going to be able to get some help through phlebotomies. Listen to your body and try to pace yourself! Any kind of detoxing too fast in my opinion is not worth the side effects.

Merlyn wrote:Bethr-I go to my doctor tomorrow to ask for another phlebotomy and I do not expect him to agree. In Canada we don't even have the option of giving blood every now and then. I will have to be my own blood letter, in all probability I let you know.

All the best Merlyn. This is all so darn frustrating!

Thanks for the reply Merlyn. Maybe a should stop with all the sulphur for the moment! (including onions) come to think of it...when I took high dose garlic in 2009 I had a relapse.....I see a pattern forming. I think I will steer clear of all high sulphur foods for the moment and then maybe do it in pulses or something.

Has anyone been tested for the S65C gene in their gene test.

I found this interesting abstract on it. My test only covered C282Y and H63D. I might try and find a test for this gene too.
I'm not giving up yet!

Abstract
Background/Aims: HFE-related haemochromatosis is a common disorder of iron metabolism. Most affected individuals are homozygous for the C282Y mutation of HFE. Some are compound heterozygotes for C282Y/H63D. A small proportion have neither of these genotypes. We have investigated the phenotype of compound heterozygotes for C282Y and another missense mutation S65C.

Methods: Genotype for the S65C mutation was determined in 309 subjects heterozygous for C282Y and negative for H63D, referred because of increased serum iron indices or family screening. A control sample comprising 315 individuals was also studied.

Results: Twelve individuals were compound heterozygotes for C282Y and S65C. Seven, referred for family screening, had normal serum iron indices. Five subjects had elevated serum iron indices; three of these had elevated hepatic iron and have received treatment for iron overload. Transferrin saturation was significantly elevated in C282Y/S65C compound heterozygotes compared with simple C282Y heterozygotes.

Conclusions: Some C282Y/S65C compound heterozygotes have elevated serum iron indices and iron overload. The penetrance of this genotype is low and other genetic and environmental factors may influence the expression of iron loading. Screening for S65C may be useful in individuals with iron overload who are not homozygous for C282Y or compound heterozygous for C282Y/H63D.

Good for you Bethr, Don't give up..I often wonder what good is it that we educate ourselves about this hh but cannot get access to the cure because no drs. have been educated, yet they hold all the power. It just is not right that they can say no while remaining totally ignorant.

Researchers at the Technion-Israel Institute of Technology have developed three drugs to remove excess iron from the brains of patients with neurodegenerative diseases. The presence of too much iron in the brain is a hallmark of such diseases. The drugs, VK-28, HLA-20 and M30, mop up the iron before it can trigger a "brain rust" chemical reaction where highly active oxygen particles destroy brain cells.

Professor Moussa Youdim of the Faculty of Medicine and his colleagues – Prof. Avraham Warshawsky (now deceased), Prof. Mati Fridkin and Ph.D. student Hailin Zheng from China – have received U.S. and worldwide patents on VK-28, HLA-20 and M30. Youdim says the three drugs could treat and perhaps prevent a range of diseases including Parkinson’s, Alzheimer’s, Huntington’s and amyotrophic lateral sclerosis (ALS).



Unlike other drugs currently used against these disorders – which attempt to replace the functions lost by dying neurons – these drugs halt the neuron destruction itself. Normally, iron is a helpful partner in the body’s metabolism, shuttling electrons between molecules in chemical reactions that break down fats, carbohydrates and proteins, and provide energy to cells. Because iron is so reactive, the body usually keeps tight control over the amount and activity of iron circulating in the brain and other organs.

When these control mechanisms fail, however, too much "free" iron can participate in rust-like reactions that produce damaging byproducts such as oxygen free radicals. These highly active particles hurtle themselves at cells with destructive force, collapsing and eventually killing them. The deadly bombardment might explain why neurons die off in the iron-rich brain tissue of Parkinson’s and Alzheimer’s patients, Youdim says.

Youdim and his former student, Dr. Dorit Ben Shachar, were the first to suggest that iron chelators could prevent the neurotoxicity of iron in an animal model of Parkinson’s disease with Desferal, a well-known iron chelator. Iron chelators are small molecules that bind to excess iron and prevent it from participating in chemical reactions that could damage neurons and other cells.

But they discovered that Desferal needed to be directly injected into the brain, leading to the new VK-28, which can cross into the brain via the bloodstream. The other two drugs – HLA-20 and M30 – are combination drugs. They increase Dopamine levels and remove excess iron that could cause further damage to the neurons that transmit dopamine. "Drugs with multiple actions may be more effective in controlling and treating neurodegenerative disorders," he explains.

The work of Youdim and his colleagues appears in the November 2004 Nature Review Neuroscience. The have also published several other papers on their iron chelator research, including articles in the Annals of the New York Academy of Sciences (January 2004) and Neuropharmacology (January 2004) earlier this year. They will also be published in Trends in Pharmacological Sciences later this year. The researchers are now in negotiations with several American, British and Israeli companies for development of these drugs through Varinel Inc.

Youdim also discovered and co-developed Rasagiline, a drug that boosts levels of a brain chemical called dopamine that is normally depleted in Parkinson’s patients; and Ladostigil, which boosts levels of acetylcholine in Alzheimer’s patients. Rasagiline has received a letter of approval from the FDA, while Ladostigil is currently in the clinical trials phase.

The Technion-Israel Institute of Technology is Israel’s leading science and technology university and home to the country’s only winners of the Nobel Prize in science. It commands a worldwide reputation for its pioneering work in computer science, biotechnology, water-resource management, materials engineering, aerospace and medicine. The majority of the founders and managers of Israel’s high-tech companies are alumni. Based in New York City, the American Technion Society is the leading American organization supporting higher education in Israel, with more than 20,000 supporters and 19 offices around the country.

Awesome info! now how do we get drs. to read this?

Went to see my doctor, and told him about my amazing reduction in symptoms especially spasticity. I questioned him why that could be, and he did not have any explanation, but he said whatever works works. I asked him if I could do another phlebotomy, and he was cooperative actually, and just frowned and said we would have to monitor things. He wanted to get another blood test done, but then he said we could go ahead if the results were okay, within a month. I didn't think to clarify whether it was a month from today or a month from the last one which was 12 physic days ago. Anyway, he will be okay with another one in the not-too-distant future, and then every couple months after that if I still feel that is what is helping me. So that is really good for me! I know that people are going to have trouble getting anybody to listen. My doctor was pretty cool today and I really appreciated him. And they took two more vials of today to test my blood, so that will help!