Suggestions on how to get the "rust" out?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Suggestions on how to get the "rust" out?

Postby Donnchadh » Tue Mar 23, 2010 8:36 am

If I understand Dr. Zamboni's CCSVI theory correctly, it's the harmful effects of iron disposition in the brain and spinal cord which starts the MS symptom cascade.

Any suggestions on how to get rid of 20 years of accumulated iron?

Blood donation has helped me.

EDTA chelation has helped.

Anything else?

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Postby Villagemaid » Tue Mar 23, 2010 8:59 am

I started looking into this too.......I have heard about chelation, but never really knew what it was!

I told my husband to go and find a bunch of leeches and blood-let me like they did in the medieval times...lol... :o

I guess cutting down on foods that are iron rich could be helpful. I didn't think that the Canadian Blood Services would take people with MS....I should find out! I have 0+ blood, the best to give and receive!

-VM-
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Merlyn » Tue Mar 23, 2010 10:48 am

Donnchadh-so glad that blood donation has helped! How often can you do this?

I really really think we need a clinical trial of phlebotomies for people with MS that are iron loading. Did you do a blood test for iron metabolism? Or did you just go on instinct? I keep wondering whether reducing the iron would correct the stenosis. I mean, would phlebotomy draw the iron out of the blocked veins in the jugular? We don't know obviously because it's never been tried! I don't know whether I have CCSVI, and I am so debilitated I don't know whether I would be able to get on a table or anything to test for it... can't get to the clinic in Vancouver that is testing for it. Can't travel.

My advice is to try to keep reducing the iron, but if testing as possible to do that to see where your ferritin levels etc. are at. I think it's crazy that phlebotomy is so hard to access considering that they will spend thousands and thousands on MRIs etc., but people can't convince doctors to help them do this. Phlebotomy seems to be the quickest way to reduce iron levels, the most effective according to the iron overload diseases organization. Those people with hemochromatosis sometimes have to remove 2 pints of blood a week for up to three years! I am still amazed that the body can handle that, a gallon a month! You think this would totally deplete the body of all minerals, but I guess it's that or cirrhosis or heart attack or something.
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Postby Merlyn » Tue Mar 23, 2010 11:04 am

The other thing that bothers me about the whole Zamboni CCSVI campaign in a way is that they totally ignore that iron is found in the brain of other conditions, like Parkinson's, Alzheimer's, Huntington's... I think to be totally honest they should be including that fact when talking about MS and iron in the brain. It is not unique to MS!


I second that invitation!



http://www.ironoverload.org/brain.html

We invite brain researchers to share with us articles from medical journals and presentations
on this subject. This will add to our on-going research. We have heard from MS victims
that they are starting the de-ironing process that is the protocol treatment for hemochromatosis.
We will continue to post on their progress. We are very hopeful they will have complete recovery.
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Postby Rokkit » Tue Mar 23, 2010 12:05 pm

Merlyn wrote:The other thing that bothers me about the whole Zamboni CCSVI campaign in a way is that they totally ignore that iron is found in the brain of other conditions, like Parkinson's, Alzheimer's, Huntington's... I think to be totally honest they should be including that fact when talking about MS and iron in the brain. It is not unique to MS!


Here is part of the control group from Dr Zamboni's 2008 paper "Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis":

45 patients affected by other neurological diseases (OND) (table 2); this group was composed of patients affected by neurodegenerative disorders (Parkinson disease and amyotrophic lateral sclerosis-ALS), other neuroimmunological disorders including myasthenia gravis and multifocal motor neuropathy (MMN), and cerebrovascular disease (ischaemic stroke, transient ischaemic attack (TIA)).


(Edited out my ill-advised commentary.)
Last edited by Rokkit on Tue Mar 23, 2010 1:27 pm, edited 1 time in total.
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Postby esta » Tue Mar 23, 2010 12:44 pm

ouch..
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Postby Donnchadh » Tue Mar 23, 2010 12:58 pm

Merlyn wrote:Donnchadh-so glad that blood donation has helped! How often can you do this?

Donnchadh=Before the CCSVI procedure, on an eight week schedule. I have not done it since then because I am on Plavik for 30 days.

I really really think we need a clinical trial of phlebotomies for people with MS that are iron loading. Did you do a blood test for iron metabolism? Or did you just go on instinct?

Donnchadh=The idea came originally from the "Neanther-Thin" forum. A previous blood profile panel showed that my blood was within normal parameters.

I keep wondering whether reducing the iron would correct the stenosis. I mean, would phlebotomy draw the iron out of the blocked veins in the jugular?

Donnchadh=I seriously doubt if giving blood by itself would correct stenosis of the veins. It deals with the consequences of BBB reflux. A stenosis is not a "blockage" but rather a constriction in the vesicular walls. Iron is deposited in the brain and spinal cord. The question is can iron be removed from existing lesions sites?

We don't know obviously because it's never been tried! I don't know whether I have CCSVI, and I am so debilitated I don't know whether I would be able to get on a table or anything to test for it... can't get to the clinic in Vancouver that is testing for it. Can't travel.

My advice is to try to keep reducing the iron, but if testing as possible to do that to see where your ferritin levels etc. are at. I think it's crazy that phlebotomy is so hard to access considering that they will spend thousands and thousands on MRIs etc., but people can't convince doctors to help them do this. Phlebotomy seems to be the quickest way to reduce iron levels, the most effective according to the iron overload diseases organization. Those people with hemochromatosis sometimes have to remove 2 pints of blood a week for up to three years!

Donnchadh=Hemochromatosis and MS are two different animals.

I am still amazed that the body can handle that, a gallon a month! You think this would totally deplete the body of all minerals, but I guess it's that or cirrhosis or heart attack or something.
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Postby Rokkit » Tue Mar 23, 2010 1:31 pm

I don't think iron in the blood has anything to do with iron in the brain, am I wrong? As for how to get rid of the accumulated iron in the brain, that is the $64K question. I'm hopeful that the work of Mark Haacke will cause some things to start happening in this regard.
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Postby Bethr » Tue Mar 23, 2010 1:34 pm

Donnchadh=Hemochromatosis and MS are two different animals.


I think these animals may be interbred :lol:

It was proved in a clinical study that although an HH gene does not predispose a person to MS, MS will develop earlier in life.

So a hereditary predisposition to retain more iron in the body does effect onset.
If iron levels are kept low, (pure supposition on my part), it may never develop or develop later in life, or help limit progression?
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Postby Merlyn » Tue Mar 23, 2010 3:00 pm

Rokkit Yes, they tested people with other neurodegenerative conditions, but where do they mention iron in their brains? I think I've missed it if it's there.

http://www.hemochromatosis.org/Internal ... hromatosis

Therefore, undiagnosed and untreated HHC increases the risk for diseases and conditions such as diabetes mellitus, irregular heart beat or heart attack, arthritis (osteoarthritis, osteoporosis), cirrhosis of the liver or liver cancer, depression, impotence, infertility, hypothyroidism, hypogonadism, and some cancers. Mismanaged iron in the brain is seen in those patients with neurodegenerative diseases: Alzheimer's, early onset Parkinson's, epilepsy, multiple sclerosis, and Huntington's disease.
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Postby Zeureka » Tue Mar 23, 2010 3:53 pm

Rokkit wrote:I don't think iron in the blood has anything to do with iron in the brain, am I wrong? As for how to get rid of the accumulated iron in the brain, that is the $64K question. I'm hopeful that the work of Mark Haacke will cause some things to start happening in this regard.
Indeed Rokkit..I asked this question in Ferrara and they told me the iron level in blood has nothing to do with the brain issue.

So it's better not to try to reduce iron in the diet (I admit that also in the start tried to do so as sounded logical and however stopped avoiding iron-rich foods after they told me this in Ferrara)- as getting anaemic for no real benefit could even worsen symptoms such as fatigue and dizziness... How to get rid of heavy metal in our brains still a mystery and under research. I've actually never been a fan of heavy metal 8O, have you?!
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Postby berriesarenice » Tue Mar 23, 2010 4:23 pm

Zeureka wrote:
Rokkit wrote:I don't think iron in the blood has anything to do with iron in the brain, am I wrong? As for how to get rid of the accumulated iron in the brain, that is the $64K question. I'm hopeful that the work of Mark Haacke will cause some things to start happening in this regard.
Indeed Rokkit..I asked this question in Ferrara and they told me the iron level in blood has nothing to do with the brain issue.

So it's better not to try to reduce iron in the diet (I admit that also in the start tried to do so as sounded logical and however stopped avoiding iron-rich foods after they told me this in Ferrara)- as getting anaemic for no real benefit could even worsen symptoms such as fatigue and dizziness... How to get rid of heavy metal in our brains still a mystery and under research. I've actually never been a fan of heavy metal 8O, have you?!


I think Dr. Simka also made a statement regarding iron deposits in the brain having nothing to do with iron in the blood. I am anxious to find ways to remove iron deposits from the brain after my liberation, but the CCSVI experts seem to agree it doesn't have to do with iron in the blood.
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Postby Bethr » Tue Mar 23, 2010 4:35 pm

Indeed, he is probably right too. But blood is not what crosses the BBB, it's the transferrin that crosses over as per the article below.
Transferrin can be highly saturated with iron, it binds to it, therefore carries it across the BBB. It probably doesn't matter how much iron is in the blood, it's the "Saturation" of iron in transferrin.

Which is why we have been pushing people to get their "transferrin saturation" checked. This is not a standard iron test.

All theoretical of course.

The article below is testing how to get drugs across the BBB bound to transferrin.

2006: Mishra Vivek; Mahor Sunil; Rawat Amit; Gupta Prem N; Dubey Praveen; Khatri Kapil; Vyas Suresh P
Targeted brain delivery of AZT via transferrin anchored pegylated albumin nanoparticles.
Journal of drug targeting 2006;14(1):45-53.
Hydrophilic drugs/peptides have poor cross Blood-brain permeability. Various drug delivery systems with diverse surfacial characteristics have been reported for effective translocation of drugs across Blood-brain barrier. In present investigation, the potential of engineered albumin nanoparticles was evaluated for brain specific delivery after intravenous administration. Long circulatory PEGylated albumin nanoparticles encapsulating water-soluble antiviral drug azidothymidine (AZT) were prepared by ultra-emulsification method using chemical cross-linking by glutaraldehyde. Surface of the PEGylated nanoparticles was modified by anchoring transferrin as a ligand for brain targeting. Nanoparticles were characterized for their size, polydispersity, surfacial charge, drug loading and in vitro drug release. Fluorescence studies revealed the enhanced uptake of transferrin-anchored nanoparticles in the brain tissues when compared with unmodified nanoparticles. In vivo evaluation was carried out on albino rats to evaluate tissue distribution of engineered nanoparticles after intravenous administration. A significant ((*)P < 0.01) enhancement of brain localization of AZT was observed for transferrin anchored pegylated albumin nanopariticles (Tf-PEG-NPs). Hence, the specific role of transferrin ligand on nanoparticles for brain targeting was confirmed


I hope people can get their heads around this theory.
Eating less iron rich foods is just silly. One phleb takes out 750 meals and under normal circumstances reduces transferrin saturation.

If iron has no significance, why do people with HH genes develop MS younger? People with HH genes have on average higher transferrin saturation than people with normal genes.
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Postby Cece » Tue Mar 23, 2010 5:02 pm

For getting iron out of brains, there is research somewhere here supporting green tea supplements.

I too would like for Dr. Haake to come up with a solution for this! Proving that iron is there is all well and good, but let's get it out.
"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
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Postby bluesky63 » Tue Mar 23, 2010 5:30 pm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1963417/

Iron in Chronic Brain Disorders: Imaging and Neurotherapeutic Implications

Really great read -- includes chelation info as well as other intriguing stuff.
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