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What I'm hoping for is that my Hematologist takes me as an example of how dangerous iron levels "within normal limits" can be. That doctors must take symptoms as a very big part of diagnosis. When I was suffering from heaviness and daily sleeping, stiff and sore joints and my Tsat was 62% two years ago, I should have been referred straight to a hemotologist, HH tests given as a matter of course, a proper examination by the doctor. I mean I had the start of the hyperpigmentation back then, but no-body looked for it. I had the classic symptoms. I was healthy at that point. Then I got the MS symptoms, and was straight in with the neurologist. I told him on the first appointment that I had "high iron", and he totally brushed it aside.

So at least two doctors have failed so far.

The third doctor noticed the hyperpigmentation, but only after I pointed it out to her. She spent the next appointment telling how I shouldn't expect doctors to know about "rare diseases". Holy hell!!! One in 10 Europeans have this gene, and it RARE..........................

We have to push on with this and shame them into doing better!

My brother is nearly dead from liver problems, sleeps 19 hours a day. Even he has never been tested for HH, and he's been under a liver specialist for 20 years!

It is not good enough!

Am going to wash that iron right out of my skin...

http://www.antiaging-systems.com/iassto ... clean.html

I spoke to Terry Wahls recently and she mentioned Iodine,, Riboflavin and niacinamide as well as magnetic clay (to put in the bath)
Might try the iodine. I already do B3 and a multi with ribo. Magnetic clay sounds interesting....anyone tried this?

Shye-and frankly I don't quite understand your resistance to the whole discovery of the relationship of hemochromatosis to MS and phlebotomy as a possible treatment! This is so profoundly exciting I don't get your caution. So far we have five out of five people testing positive for the carrier status! They are showing distorted iron metabolism panels! This is mind blowing! We can identify people that are iron loaders and we can fix them! Get your head around the discovery and celebrate that there may be answers for at least a huge portion of us! Yes, there are going to be people with other iron metabolism issues, but we can right now, at the present time identify these people and get to work! What is your status? Have you tested your iron metabolism?

LR 1234-I did the whole Lil's magnetic Clay baths because they were reporting good results with autism... unfortunately I was getting so spastic I could not sit in the bathtub, so I did more footbath approach. Also did the whole ionic footbath with a Befe machine, and when that didn't work I bought a HighTechHealth infrared sauna and sat in that for a year every morning for an hour! I told you I have been obsessed for 12 years with heavy metals, because I was convinced they were at the root of my problem. Except I thought it was all mercury. Who'd a thunk it was iron? I have had more results with one phlebotomy than 12 years of chelation and I have done at all.

LR1234-there is a woman in Victoria that runs an alternate health group, I think she spends time on the cure zone... she said people that were taking very high levels of iodine were noticing the iron going away... all very unscientific, but there might be a relationship between iodine and iron for all I know. She was going on the basis of Harold Foster's work

HDfoster.com who said that MS and Parkinson's follow the same geographical distribution, he was a medical geologist. And he said that it all starts with iodine deficient soil, that this lack of iodine causes the brain to develop far too many dopamine receptors... his work is online, you can download the book, it is interesting, but he does not relate your condition to genetics.

LR1234-I just want to say that while I admire Terry Wahls greatly, most of us do not have access to the medical community the way that she did. I also don't have the time to do it she did! Plus I don't think we have to! It's a lot easier than when she went through if we are right and I think we are.

This is an excellent summation of iron overload.

http://www.consumerhealth.org/articles/ ... 0303204921

eg:

Not all doctors test for serum ferritin. Serum ferritin is actually just a storage bin which can hold a large number of iron molecules. In an infection, the iron will go into ferritin where it is safer than if it gets into the cells where it can cause more damage. The normal level of serum ferritin shouldn't go above 50. Some people can get sick when it's as low as 50. At the level of 80, there is an increased risk of heart attack.

I nad 2 or 3 fabulous spasm free days after my 6 vial blood test...today I am back in hell. My brain mri showed severe damage in 2007. I nave had clear sx of cong. heart failure etc etc etc M, I don't know which organ the iron is going to the most..I had 2 kidney stones, pituitary cyst, every joint is screaming...after bloodleting shoulders were very painful...I don't much care which disregulation of iron it is...if phleb works..use it and figure out the details
along the way. For God's sake we shouldn't be forced to suffer while they fumble around with their theories..most couldn't find their a&& with both hands. We would be in for a long wait.

I agree Merlyn about TW and her plan being pretty full on.

I am having my first infared sauna treatment tomorrow, I know you have done it for 12 years...did it help at all? Are you able to sweat normally?

I don't think I have high iron issues. My serum Ferretin is low but still within normal levels. My serum iron is normal. I have not got my TS levels tested yet as I can't get my dr to do this for me as all the other iron tests are normal.

Serum Ferritin 30 (6-159)
Serum iron 15 (7.5-32)

I am so pleased for you that Phlbotemy (Sp!) has worked for you but can it help with other heavy metals?

was just doing research on manganese and came across this re Iron:

On the other hand, taking higher amounts of Milk Thistle will in time decrease manganese and

iron stores, which can be an advantage with hemochromatosis (excess iron storage disease), where regular

consumption of milk thistle, RNA / DNA, magnesium and Vitamin B2 - as individually matched - will return

iron levels closer to normal, and frequently eliminate the need for phlebotomies. ¤

from http://www.acu-cell.com/femn.html

I've been taking milk thistle for years for liver problem; could be why my iron levels are okay.

Merlyn
am not resistent to idea of hemachromatosis and its correlation with SOME cases of MS--yours is the perfect example. I just think it is only one cause, but that possibly iron dysregulation could be cause of all, and iron disregulation is from many many causes.
My iron listed previously, is okay--could be lower to be in prefect health, but is well within references.

LR1234-no, I do not sweat properly. In order to sweat in the sauna at all, I had to take large amounts of sodium sulfate. But then I would retain water/edema so I did not always want to do that. But it was the only thing I found that helped me sweat. I don't want to be totally dismissive of chelation, Andrew Cutler PhD says he sees the best results with MS chelating with alpha lipoic acid, but only done on his three or four hour schedule. As an interesting note, in The Bronze Killer Marie Warder notes that people with hemochromatosis are very heat intolerant. But that is also common with other heavy metal poisoning like mercury. I think it all depends how much of a body burden that you have accumulated, and what organs it has affected. I think what we really truly need is a truly time released alpha lipoic acid. Andrew Cutler says this is not yet been developed... R-lipoic seems to be more effective, but Bert Berksen (The Alpha Lipoic Acid Breakthrough) says that the present R-lipoic is made in a very toxic manner and is not recommended...

Start slow with the infrared sauna and take something to absorb any released toxins. I found activated charcoal useful, but infrared saunas mobilize metals, and if you do not sweat properly they will not get excreted and you will cause redistribution. Andrew Cutler says he has seen a lot of people get very sick in them for a very long time. I found that it crashed my adrenals. I would not want to be on the receiving end of my blood because it is full of toxins. The last heavy metal challenge test I did I was chock-full of barium, and I have no barium exposure, have never done any barium medical tests. When you look@Terrywahls.com and you see the amount of poisons that she is carting around, I shudder. But it is very hopeful also, that we can survive the amount of poison accumulation and still recover. And that was the other thing I wanted to say, people survive and recover from poisoning... we are fixable. Heavy metals can screw up any enzyme system, can distort any biochemical pathway, create inflammation, activate the immune system in all kinds of weird ways, but when you get rid of the irritant, remove the catalyst, the body will heal. It wants nothing more than homeostasis... I learned from studying heavy metals for 12 years that doctors focus on the symptoms of heavy metal poisoning, and never address the root cause, the the metal poisoning itself. If you do not iron load to a heavy degree, your body burden is probably less than mine, and chelation might work for you. I think my problem is I accumulate faster than I can rid. Like Terry Wahls, I probably have a bunch of other toxins on board, if you accumulate one heavy metal in excess, you can count on the fact you have more onboard. It will depend on your lifelong exposure, how many excretory pathways have been compromised... the thing about heavy metals, is that we don't generally just die, we just get sicker and sicker as we accumulate more more... I have read that the Beluga whales at the mouth of the St. Lawrence River are so toxic that when they die they have to be incinerated as toxic waste! You can carry around one heckuva load of toxins without dying, it's just that your life will be eviscerated.

just thought i'd say that I took 50mg iodine/day for 2 yrs. when I was sooo hyperthyroid I nearly died. It saved my life..no doubt about it. I still take at least 12-25 mg/day iodine as well as milk thistle and skip a day occaisonally.

Shye, I am not an authority on iron metabolism. I simply started by questioning where all that iron was coming from, enough to clog up entire veins! Zamboni did previous work on venous insufficiency in the legs of people with MS and iron deposits found in their legs... I doubt we all have a whole body full of inadequate veins, I think we have too much iron.

I also suspect that the increase in MS could be due to the fact that we are now adding iron to everything and overloading heterozygotes. Maybe people that would've been okay absorbing iron from normal food, but now it's in the flour and breakfast cereals and and and...

I also think that unless you correct the faulty iron accumulation, People's things are going to re-clog and obviate the surgery. Can you test for the genetic mutation? Do you have clogged veins?