This Is MS Multiple Sclerosis Community: Knowledge & Support

Recently, I underwent my second liberation procedure here in the USA and the IR was only able to open up the left side internal jugular vein. There were too many collateral veins obscuring the right IJV when the contrast dye was injected during the venogram.

There some improvements to my symptoms, but far from approaching being normal.

I then thought about something: Why is it that while I had the identical venous problems 10 years ago, I could more or less walk normally then and I can't now? I had the exact same stenosis in the exact same location. What is different?

I think the second part of Dr. Zamboni's CCSVI theory gives a clue: it's the iron deposition over time. Iron is what initiates the cascade of symptoms that is called "MS."

So how to get rid of this unwanted iron? I started by donating a pint of whole blood. That really helps with the fatigue factor.

I am also experimenting with some iron chelating substances, and there does seem to be some improvements.

I hesitate to publicly state what they are because I am not a doctor (nor play one on TV, lol) and can not responsible for causing harm to anyone else. Potential bad karma.

Also, I just started this and am still trying to adjust quantities and materials but it does seem a viable route. Even if the liberation procedure was a 100% success and the veins were fully re-opened, there's still question of how to get rid of the iron that has already been accumulated. I have been progressive for twenty years, so there must be quite a lot deposited by now.

I am wondering if the people who had a liberation procedure and did not receive immediate improvements is because of their accumulated iron? Which is still present in our brains and spinal cords after the procedure is finished. Perhaps the body can remove this iron load over time by itself?

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Good luck with your chelating and your second liberation. If the blood went back to regular flow, it will be able to get rid of some or most of the accumulated iron in the tissues. If not, chelating might help but be careful in case you have amalgam in your teeth.

Donnchadh, I have a completely different take and I could be totally wrong ...

Don't underestimate our body's ability to heal itself. Most of us have sustained MS onslaught for years yet we continue to function (although less effectively). So when the underlying factor is removed the gains should be very good except for those parts that have undergone permanent damage. But unlike other organs there is a high level redundancy in brain.
On the assumption that iron has been depositing for years - please remember that if CCSVI were to be true, MS itself is due to frequent iron cleansing that has been taking place.

Let me also say this there have been some days when I have felt almost symptom free (clear head, able to function very efficiently ...). That tells me that our body has retained most of its abilities even when are afflicted with MS.

A very good point.....yes I do have some tooth amalgams. When I questioned my dentist about the mercury in them, she assured me that they are "stable." But I still have my doubts. I think as they get replaced/refilled I am going to insist on something else that doesn't contain toxic materials.

One of the substances I have been taking for years is not a chelating agent but something that promotes/protects brain cells. I haven't had any adverse effects from taking it.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

We are not in disagreement...I certainly hope the body can indeed get rid of the deposited iron. I just want to see if there are effective and safe ways to speed up this process. Giving blood in effect forces the body to salvage iron to make the replacement red blood cells, a natural process.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

There's another aspect to this damn vascular disease, and I can't wonder if I am not the only one to suffer them this.

It's the vicious negative feedback loops. Because it's hard to walk, you tend (even if just subconsciously) to minimize walking. That causes the leg muscles to atrophy from lack of use, making it even harder to walk. And the damn fatigue prevents me from wanting to try...but not moving causes sloppy weight gain.

The neuro's told me to use an exercise bike which does help strengthen the legs but that also raises my blood pressure.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I agree...there are vicious loops on the emotional/fatigue side too...fatigue leads to doing less, maintaining fewer friendships, being depressed, all of which leads back into fatigue.

About the iron, I thought I'd read that people with more lesions actually had less iron in their brains and people with fewer lesions had more? This could be because the body was either getting rid of the iron (and causing a lesion in the process) or not being as aggressive at attacking the areas where the iron is deposited, so fewer lesions but more iron. Either way if there is iron in our brains I don't see why the MS specialists don't immediately put us on chelators. Why would anyone think iron in the brain is a good thing? Even or especially if it goes along with having some of these neurological disorders (MS, Parkinsons)?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

This is quite interesting

Hi Gordon, Cool "dementia world map" at the bottom of that thread.
All those well fed people with iron-filled brains!
I wonder how long this side of it takes to come out.
Maybe we should already be lobbying to stop having iron added to our staple foods! Trying to find a cereal without it added is an interesting experience. Getting doctors to help you reduce your iron levels to a more "just enough" level. Nearly impossible!

Of course, this long-term Mitrochondrial DNA damage doesn't explain why I get rid of my fatigue straight after a good blood draw, or how it wears off over following weeks. Maybe the iron is drawn from my stores and my blood goes back to being quite heavy with it again. I am better, much better, now that I don't have those upper limit iron levels. In fact I don't sleep more than one afternoon a month now, and then usually after hard work. Last year I slept every day. So simple really.

I'd had the lack of energy periodically for the past 20 years!
Lowering my iron levels fixed it.

Donnachadh, great to hear that you find blood draws therapeutic.
They've changed my life!

I have a letter from my neuro in 08 saying I more than likely have MS (like my sister). I reduced my iron levels and I just got a new Neuro letter after an exam in June 2010, and it says I "definitely do not have MS".

I told the Neuro about the blood draws, and he said "Go for it".

Donnchadh, out of curiosity, how do you know for sure what your venous probs were 10 years ago? (Not being contentious, just sincerely interested.) For me, they found "congenitally hypoplastic" (underdeveloped) left jugular so that would mean from birth but I have no way of knowing how long all the collaterals have been there.

As for donating blood, I was told I couldn't donate because of the MS. Also I am slightly anemic. It's confusing. Low iron makes one anemic = fatigue. Too much iron = same.

This kind of makes me wonder if donating blood is *sort of* like plasmapherisis. The blood isn't filtered but perhaps it gets replaced (regenerated) with newer, fresher blood? Is that plausible?

Pam

Can't be certain because CCSVI testing was unknown at that time (1990). An assumption on my part because my symptoms are the same, just worsening in degree.

I have never taken "MS" pharma drugs, nor do I consider it to be an infectious disease. So my conscience is clear in donating. The blood bank screens for every known bug and keeps asking me to donate.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Pam, that's exactly how it feels to me, like my blood is fresh and energised, newly produced and my iron goes lower, nothing much else changes on blood tests before and after, just the iron/ferritin/T.Saturation goes down, my Hb always stays high or goes up. My complication is I don't have a spleen, it was removed after a car accident as a child. So my blood is missing one of it's filters also.

Now days they try to save the spleen (Thanks Dr Sclafani!).....

Donnchadh
check out the thread "Phlebotomy anyone.." for much more about iron
http://www.thisisms.com/ftopict-9480.html

I started following the thread, with some skepticism, and gradually started to see the sense of it--got iron panels done a number of times, seemed to indicate a problem, so got genetic testing--and am heterozygous for the H63D mutation of Hemachromatosis (iron overloading disease).
Had one phlebotomy, and felt amazingly better. Will donate blood once again on the first day they will let me (56 day wait between donations).
But is important to check your bloods about a month after the phlebotomy--you need to check your iron panel (total iron, TIBinding Capacity, transferrin saturation, and ferritin), and a CBC for the RBC, WBC, hemoglobin and hematocrit. When you donate, the CBC bloods go down, and thru the month as new bloodo cells are being made to replace those you donated, the Total iron,Trans sat and ferritin levels come down--that is, you are using storage iron to make the new cells. So if you have hemachromatosis, you are getting the results you want--a lowering of storage iron.
But if you don't have a prob with high iron storage, you could go too low with repeated blood donations.
The mechanism for iron in the brain is not fully known, but does not seem to hinge on excess iron according to info so far--you could be storing iron in brain even if your total iron stores are low.
Yet, the blood donation of a pint gave me energy I have not had for years (is waning as the time goes by--been a bit over a month--but still is a more even energy than before). And as I say, I will donate again, and see if get same great response.
Still doing research to see why got immediate reaction--since immediately after the blood donation, your WBC, RBC, Hematocrit and hemoglobin all go down (the blood panel takes a few weeks to start going down)--and you would think you would have less energy, not more.

EDTA drips might be helpful to get rid of iron in brain.
From what I have read, IP6 will not do it, despite some claiming it does.

I just gave blood. The MS wasn't an issue. They don't bat an eye when you mention it. Gave a few years ago too, wasn't an issue then. Just can't do bone marrow. Obviously being anemic is going to be the bigger issue here.

Mark.

p.s. here's an oft used link: http://ms.about.com/od/livingwellwithms ... _blood.htm

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap