This Is MS Multiple Sclerosis Knowledge & Support Community

Wow Trent
looks like you have your answer, and a pathway to health!!!!!
Thanks for sharing this info, and good luck

Thanks LR1234.

Yes, I am sometimes able to stand briefly now.

I inject the B1 and liver extract daily, and take a whole range of vits, of which the magnesium citrate and cacium citrate, particularly, help, stopping much spacticity and twitchy legs which used to prevent relaxation at night.

The Klenner site I posted looked as if it could be misinterpreted: it's www.
mymultiplesclerosis.gr It's run by a young Greek chap, Homer. There's a lot of good info on the site.

Trent, that's great!!
HH (hemochromatosis) can make you feel lifeless, so you can look forward to many improvements I'm sure.
Which gene did you have? It's probably a good idea for us to keep track of this, as the different genes seem to affect different parts of the body and severity. It's great that your doctor took notice. I had to wait two years before I received any attention and that was only after a stand up fight in the end to get some action and a referral to the hemotologist.

Cheers............

Bethr
I still don't really understand all the meanings and interactions of the iron tests. I think of ferritin as an internal chelator-attaching to iron to control it--if cell needs it, iron is released from ferritin to cell, if don't need more, keeps it attached to the ferritin (so won't cause damage). So wouldn't ferritin be the imp #, and the higher the better, because it is holding iron so won't do damage????

It's a very compicated science, this iron metabolism, and a lot is not yet known. I believe it is the transferrin that is loaded with iron and moves it around. If it is very saturated, ie: full bucket, then you get non-transferrin iron circulating which is free to do as it wishes. Hence the Tsat being raised, and the ferritin still within limits can be dangerous for health.

In some studies I have read recently, they are starting to come around to the belief that the immune system regulates iron in some way. Most viruses need iron to populate the body, so the body removes iron from their path and puts it somewhere the virus can't get to. That's my basic take on it. And I've also been following the link between lymphocytes and iron. Apparently lymphocytes can also take iron and move it around (I have huge amounts of lymphocytes because of my missing spleen). Lymphocytes are Killer-T's blamed for attacking myelin?

I hope i have my understanding right, it's very hard to get your head around, even for doctors.

Cheers......

My neurologist is looking into iron. He believes MS patients have a metabolic problem that results with excess iron deposition.

LR1234 wrote:My neurologist is looking into iron. He believes MS patients have a metabolic problem that results with excess iron deposition.

I think that's where the research will head. The sooner the better!

I am going to throw in a wrench this whole thing. If Chris Whittington is right (ironichealth.com), the hemochromatosis genetic mutation developed as a response to celiac disease... people with celiac disease have a hard time absorbing iron, and in the Celtic geography long ago, iron was very hard to get enough of in the diet... so the hemochromatosis genetic mutation made up for that, and allowed for very easy iron absorption whenever it was consumed... this was a protective mechanism and worked well when there was very little iron to be had. But now, it is a very damaging thing to have because iron is everywhere, they are adding it to everything.

Considering Katie's iron profile, I suggest she is the mirror opposite... TIBC out of range, high, low WCB... this combination is very often found in celiac disease. My guess is that we are going to find two groups of people... one camp will be the hemochromatosis heterozygous iron loaders, and the other group will be borderline anemic or anemic with the celiac problems of absorption. The latter group, probably also of Celtic ancestry, will probably do better on the Best Bet Diet. All of the celiac people that I have ever known have been "Mac's"... MacArthur, McDonald, McIntyre...

Katie's TIBC was high off up the reference range... I think this indicates your body is trying to hold on to any iron you can get. Her transferrin saturation is totally normal, borderline low ferritin, on the lower range of total iron... and also the low WBC, which is often the case in celiac disease as the gut lining keeps shedding... the whole celiac thing seems to be a very Celtic thing also... I don't know that I am right about this, but it seems probable. So not everybody is going to be an iron loading heterozygote... but I bet we have a whole bunch of celiac people on board.

I have met three different people who reversed their MS by realizing they had celiac disease... anybody remember Dave Q.? I put him up for a night, he was about 6 foot three, skinny as a rail, had red hair! Was pretty much a wheelchair, kept a food diary, realized he had no tolerance for wheat after he eliminated it for a few months... celiac disease is another totally underdiagnosed condition... another disease that causes brain lesions...

Trent-congratulations! Another iron loading heterozygote! We are getting to be quite a club...

I am also wondering about our ability to handle phlebotomy... we have been iron loading for quite some time, and my guess is that this has really screwed up calcium metabolism. With hemochromatosis, osteoporosis is rampant, because bone does not get replaced properly, and I think we are going to have to be very careful with making sure we are replacing calcium at a pretty high rate... but of course you have to get into the whole magnesium/calcium balances... some boron etc. Also, lots of protein. My shoulders are sore, I have only had one phlebotomy, and it occurred to me this morning that it was probably due to lack of calcium... so I'm sending my husband to the pharmacy for a box of chocolate chews, it is a great calcium supplement made by Jamieson vitamins... the only calcium supplement I have ever really liked and they taste good. But if we have 10-20 g of iron stored in our systems, we have been doing this at the expense of calcium absorption I believe. Some of us are going to be pretty depleted of minerals, and I wonder just how fast phlebotomy should be done. If I go through a naturopath, I might do a couple Meyers cocktails if I could afford it and I might just absorb the minerals this time.

It seems that there is also a genetic test for celiac disease now! Had cheek swab... I also know that people with MS are often financially wiped out that such a test will often be out of reach...

https://myceliacid.com/?source=Celiac.c ... 20February

Anemia can be an indication of celiac problems... Katie's high TIBC could be an indication of it, and I don't believe phlebotomy would be at all suitable for her, nor IP6! Actually, I believe that the iron panels will help us sort out which problem people have...

Found this on the BBC site and thought it might be of interest. I wonder if they continued with these investigations???


Multiple sclerosis could be linked to difficulty in processing iron and aluminium, a study has suggested.

Scientists at Keele University, Staffordshire, compared levels of the metals in the urine of people with MS and others without the condition.

Significantly higher levels than expected were found in those with MS.

Experts said the research was interesting, but MS was a complex disease and more work was needed before a link could be confirmed.


These are interesting and unexpected findings
Dr Lee Dunster, MS Society

The study compared 10 MS patients with the relapsing-remitting form of the disease and 10 who had the more advanced secondary progressive form with 20 people who did not have MS.

They looked at iron levels because the metal has been linked with the facilitation and acceleration of oxygenated damage.

It was found that iron levels were significantly higher in people with MS, particularly so in those with the secondary progressive form of the disease.

People with the relapsing-remitting form of the disease were found to have very high levels of aluminium - up to 40 times those seen in the group who did not have MS.

The levels are as high as those seen in people with a condition known as aluminium intolerance.

Susceptibility

MS is an autoimmune disease caused by the immune system turning in on itself and attacking the body's own tissues.

In MS, immune cells destroy the myelin sheath that surrounds nerve fibres in the brain and spinal cord and enables them to transmit impulses.

Dr Christopher Exley, a bio-organic chemist at Keele, who ran the study, said: "We know from animal studies that myelin is the preferred target for aluminium.

"As myelin breaks down, something called myelin basic protein is found in urine.

"It could be that aluminium is coming out with that. We are going to do further tests to see if that is the case."

The present understanding is that developing MS is due to a combination of having a genetic susceptibility and environmental factors.

Dr Exley said: "We hypothesise that susceptibility genes may have something to do with how iron is metabolised in the body - something may be going wrong.

"And it may be that aluminium is a previously unrecognised factor that exacerbates that problem, which then manifests itself in some as MS."

Dr Lee Dunster, head of research and information at the MS Society, said, "These are interesting and unexpected findings but MS is a highly complex, multi-factoral disease and further research in a larger study is needed to see how significant they may be."

Aluminum and iron, iron and aluminum... both are heavy metals, and it does not surprise me that if people are iron loading they accumulate more and more and more heavy metal... if they did a study comparing iron and cadmium, or iron and nickel, or iron and barium... they would find elevated levels of other heavy metals. These idiot doctors do not understand heavy metals at all, they have no idea that one excess causes the accumulation of other heavy metals because it shuts down the liver pathways. Isn't it interesting that all of a sudden they are looking at iron, when they been doing it for 30 years already. I'm sorry, but I'm fed up... I think we can figure it out ourselves.

I think you are right Merlyn. It goes along with the symptoms of the extremes, iron overload and anemia, they are similar in the early stages.

I don't want to get off the track, but depending on genetic makeup many diseases swing between "iron overload" and "anemia", but are both disregulation of iron. Porphyria is another one. The South African Genetic strain of Porphyria swing to anemia which brings on attacks, and are helped by iron supplementation, and the other end of the scale is PCT Porphyria Cutanea Tarda (genetic or acquired), where iron overload acquired or hereditary Hemochromatosis can exascerbate the disease and phlebotomy helps with clearing symptoms.
MS seems to be somewhere in that boat. A disregulation of iron. My lack of MS symptoms compared to my sister may be because of my high no. of T cells because of a spleenectomy (Hemochromatosis sufferers have low T Cells generally) and the fact that she was injected with iron as a teenager which put her on to a path to iron overload earlier.

I've found a thesis on MS and Iron, it's long, and I haven't managed to get through it yet, but looks like a worthy read.

Iron and Multiple Sclerosis
http://etd.sun.ac.za/bitstream/10019/340/1/Bloem.pdf

Thanks for all those positive responses. Can any one suggest how many / frequency of phlebotomies I should initially push for?

I don't know which is the mutant gene. Here in the UK it is uncommon for patients to hold their own records. I have to ask each time for a copy of my blood test results..

I am intolerant of most cerals other than rice and maize/corn, and dairy and egg, so I avoid these. Also chocolate as it contains iron