MS & Iron in brain

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

Postby Donnchadh » Thu Sep 30, 2010 6:23 am

sbr487 wrote:
snip

To Donnchadh,

As an MS patient, where do I put my money. Do I put my money behind these viruses and other theories that may or may not have any solution. Or for CCSVI if proven is the primary causal factor can be fixed in most cases ...


Well, as a MSer, you have to ask yourself, "What therapies have been effective in treating MS?"

Neurologists had repeatedly asked me if I ever had any illness', tested me for viral infections, and just couldn't accept the fact that I never had anything worst then the common cold. And that rather infrequently, and treated by myself. My neurological symptoms were completely unaffected following a cold; neither better nor worst.

They also grossed over the fact I had a severe neck trauma from a fall (and that's when my neurological problems all started-I was completely normal the day before the accident).

In one sense, I wish "MS" was caused by a virus-that would be relatively easy to treat. But after 70 years of research, NO viral agent has been isolated, identified, and proven to be the sole cause for "MS."

Has there ever been a single documented case of a "MS" patient with a viral infection who had been successfully treated AND WHO DID NOT ALSO HAVE CCSVI?

But with the discovery of CCSVI, there is a growing number of case histories of "MS" patients with documented venous disorders. In my own case, after ultrasound+MRV+venogram testing, there is overwhelming evidence that I have bilateral stenosis in the internal jugular veins. There is the formation of a massive network of collateral veins in the attempt to bypass the venous occlusions in my neck.

Dr. Zamboni's work has only become known since late last fall, but already there are hundreds of MSer's have be treated by the liberation procedure. Some report dramatic improvements, some slight, and some with no benefits.

The sole problem I have experienced following my liberation procedure was that of re-stenosis. While my veins were opened up, I experienced dramatic symptom improvements-when they closed back up, the symptoms came roaring back.

Personally, the choice is crystal clear for me.

Donnchadh
Last edited by Donnchadh on Thu Sep 30, 2010 7:29 am, edited 1 time in total.
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Postby Rokkit » Thu Sep 30, 2010 6:45 am

patticake66 wrote:And I know many of you on this site refuse to accept this notion.....

It's not just your vaccine notion I "refuse to accept." This forum is literally drowning in lay theories that have zero value, and (in a lot of cases) don't even have anything to do with CCSVI. Early 2009 called; it wants its forum back.
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Postby gainsbourg » Thu Sep 30, 2010 10:35 am

Sbr487 wrote: do you have any reference paper that indicates that micro damage in MS and CIDP are identical?


No, I don't think they are identical - but they are both diseases of chronically inflamed nerves that demyelinate. The main difference is that peripheral nerve myelin can grow back to some extent. In MS, remyelination is sparse and so you see lesions or scars in the myelin. There is absolutely no question that virus/bacterial infection precedes many cases of Gillain Barre Syndrome. The start point of MS is probably years, or even decades before the big symptoms occur so it's much harder for doctors to look for connections.

Donnchadh - that's very interesting to hear how your MS all started after the neck trouble. I can see now why you are such a big believer in CCSVI, especially after noticing the MS symptoms all come back as soon as the vein problem returns. Hearing cases like yours convinces me more than ever in the value of fixing veins in order to alleviate MS symptoms.

It's so disappointing that the venous problems often come back - but for me, that is even more evidence that they may not be the cause of MS in the first place.

My way of looking at it is that even when the veins have been fixed, the strain that MS puts on the vascular system continues. The chronic inflammation in the white matter doesn't go - and the extra strain this inflammation puts on blood supply and drainage doesn't go away either. In other words the MS re-exploits the congenital weakness of the veins until the venous problems return.

Some people suspect that the venous problems return because of the presence of free iron. I agree that iron is probably a big factor in MS, not least because you can't induce "rodent MS" in mice who have low iron levels. But again, it's a chicken and egg thing. Free iron deposits, like CCSVI could just as easily be products of MS, as the cause.

Either way, I think we need to give our bodies a chance to get rid of any free iron.


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Postby sbr487 » Thu Sep 30, 2010 10:44 am

gainsbourg wrote:My way of looking at it is that even when the veins have been fixed, the strain that MS puts on the vascular system continues. The chronic inflammation in the white matter doesn't go - and the extra strain this inflammation puts on blood supply and drainage doesn't go away either. In other words the MS re-exploits the congenital weakness of the veins until the venous problems return.


What is the basis for this theory?
How does your theory tie off with weakened BBB?
Why is the Tsyabri which targets specific immune cells works with almost pin point accuracy if the issue is local?

:?
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Postby gainsbourg » Thu Sep 30, 2010 3:26 pm

How does your theory tie off with weakened BBB?

For me, weakening of the BBB is yet another outcome of MS - not the primary cause. What's interesting is that BBB permeability has long been known to be a factor in other neurological diseases such as Parkinson’s and Alzheimer’s and CIDP.

As for Tsyabri - it works well for many, but it does not cure MS, it merely limits the harm being done by the immune system.

What is the basis for this theory?

No scientific basis...I'm just a maverick! I don't believe that the immune system starts the chain of MS damage. Immune dysfunction isn't the real culprit, I believe it is yet another product of MS. I'd guess the immune system is stimulated or scared into action by the presence of something like the herpes virus ( EPV or VZV), which hides in nerve tissue - but it's only a possibility. Once the immune attack has started it carries on as long as the virus is seen as a threat. Herpes attacks are often triggered by stressful events - so are many MS attacks.

Whatever starts the immune response - the end result is chronic inflammation. My guess is that inflammed nerves cannot metabolise oxygen, iron or glucose as efficiently as healthy nerve tissue - which would explain why MS-rs seem to hate stuffy environments, suffer from fatigue periodically and often benifit from oxygen therapy. It might also explain why there are free iron deposits surrounding the nerves - a by product of faulty metabolism. Nerves that don't metabolise properly are also likely to use up more nutrients than healthy nerves, e.g. zinc, B12 etc. Heat makes inflammation temporarily worse, whereas cold reduces inflammation. More inflammation means less oxygen absorption. Humidity also makes air less dense=even less oxygen. Oxygen is the most important nutrient to the body.

The worse the inflammation during the day - the poorer the nerve metabolism - the less oxygen and nutrients are available - the more fatigue and disabilty is experienced.

The inflamed white matter chronically disrupts normal blood flow in the CNS which ultimately results in CCSVI in those who have a congenital weakness (which seems to be the majority). This then exaserpates the whole situation.

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Postby sbr487 » Fri Oct 01, 2010 7:06 am

gainsbourg wrote:No scientific basis...I'm just a maverick! I don't believe that the immune system starts the chain of MS damage. Immune dysfunction isn't the real culprit, I believe it is yet another product of MS. I'd guess the immune system is stimulated or scared into action by the presence of something like the herpes virus ( EPV or VZV), which hides in nerve tissue - but it's only a possibility. Once the immune attack has started it carries on as long as the virus is seen as a threat. Herpes attacks are often triggered by stressful events - so are many MS attacks.

Whatever starts the immune response - the end result is chronic inflammation. My guess is that inflammed nerves cannot metabolise oxygen, iron or glucose as efficiently as healthy nerve tissue - which would explain why MS-rs seem to hate stuffy environments, suffer from fatigue periodically and often benifit from oxygen therapy. It might also explain why there are free iron deposits surrounding the nerves - a by product of faulty metabolism. Nerves that don't metabolise properly are also likely to use up more nutrients than healthy nerves, e.g. zinc, B12 etc. Heat makes inflammation temporarily worse, whereas cold reduces inflammation. More inflammation means less oxygen absorption. Humidity also makes air less dense=even less oxygen. Oxygen is the most important nutrient to the body.

The worse the inflammation during the day - the poorer the nerve metabolism - the less oxygen and nutrients are available - the more fatigue and disabilty is experienced.

The inflamed white matter chronically disrupts normal blood flow in the CNS which ultimately results in CCSVI in those who have a congenital weakness (which seems to be the majority). This then exaserpates the whole situation.

gainsbourg


Is this is what MS is then God help us :)
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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Postby gainsbourg » Sat Oct 02, 2010 11:23 am

sbr487 wrote:Is this is what MS is then God help us

You're right, but in the meantime there's always hope. Two years ago I was pretty much a lone wolf on this forum with my views about iron - that's changed now but there's still many who dismiss the herpes link despite the fact that it's staring us in the face. For anyone who's open to the idea that both herpes and iron are factors in MS here's my personal list of what can be done:

1. Cut out free iron NOW! (Note: this doesn't mean cutting out or reducing dietry iron in its natural forms) If there's anyone left on this Forum who still eats fortified bread, rice or breakfast cereal then think about cutting them all out because all these foods contain added iron, i.e. free iron, usually in the form of a dust of minute iron filings. It is unnatural to consume free iron. The body has no use for free iron and it is collecting in the brains of everyone who has MS.

2. Avoid intense mental or physical stress and learn to cope better with unavaoidable stress. Stress is linked to MS attacks and also herpes attacks. The white matter in your brain/spine is inflammed so avoid stressing out or overworking the brain.

Overworking the brain puts even more demands on cerebral blood supply and therefore on cerebral veins - no wonder MS attacks so often follow stressful incidents.

3. Eat an alkaline diet, or at least a Swank type diet with lots of oily fish and leafy green vegetables. Firstly, because an acid diet causes inflammation (MS is basically a disease of chronic nerve inflmmation) and secondly, there is evidence that an alkaline diet is the best prevention against herpes outbreaks.

4. Eat blackcurrants and lemon balm (the foods thought to be best at suppresing herpes)

5. Try MS treatments that use poison (yes, poison) - such as bee venom, snake venom, scorpion venom, jelly fish venom or nettle stings. I used to regard them as quirky and illogical treatments, now I believe the reason they work is that they simply keep the herpes at bay. Cobra venom is the only substance in the world known to destroy herpes for sure.

6. Get enough oxygen and fresh air. Never stay or sleep in a stuffy environment because oxygen is the number one "nutrient" for any human being. I believe that the white matter nerves have problems metabolising iron and oxygen properly in MS and that chronically inflammed, sick nerves need all the oxygen they can get. Note: both hot and humid air contains less oxygen.

7. Keep cool. Inflammed nerves have even more trouble metabolising properly once the body heats up - that is why I believe heat causes fatigue in MS, and also why the basic body temperature is often lower in those with MS.

8. Keep all essentials topped up like B12, D3, zinc and essential oils. I believe these run low easily because of faulty nerve metabolism.


BTW, I just re-read the thread, 2 yeras ago, where Zamboni was first mentioned on TIMS (it's an iron thread) It makes interesting reading:


http://www.thisisms.com/ftopic-5671-days0-orderasc-30.html

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Postby Bethr » Sun Oct 03, 2010 1:41 pm

Thanks for the old thread link Gainsborg, it's an interesting read, especially when Zamboni's research is first mentioned.
You people were thick into the iron research!

Have you looked into Hepcidin in iron metabolism?
Hepcidin regulates iron absorption and storage, it's quite fascinating.
Hepcidin is upregulated by inflammation and downregulated by hypoxia. Hypoxia reduces hepcidin levels, meaning iron can not be moved out of cells.

I saw Pro-hepcidin mentioned in the old thread, but this is the precursor to hepcidin, ie: not the same thing.
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Postby gainsbourg » Thu Oct 07, 2010 1:56 pm

Bethr wrote:Thanks for the old thread link Gainsborg, it's an interesting read, especially when Zamboni's research is first mentioned


No problem! I'm not the most regular member of the forum but dipped in recently and the phlebotomy thread was just what I'd hoped to find - read most of it straight through - brilliant.

Will check out hepcidin's role in metabolism.


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Postby PCakes » Thu Oct 07, 2010 2:08 pm

Bethr wrote: Hypoxia reduces hepcidin levels, meaning iron can not be moved out of cells.


Would this result in anemia and testing positive for iron deficiency dispite having sufficient iron? The iron is in 'stores' but can't get out?
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Postby PCakes » Fri Oct 08, 2010 10:46 am

*bump* really hoping to get an answer to my last ??

thanks
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Postby Bethr » Fri Oct 08, 2010 12:08 pm

I think it shows that testing hepcidin levels may be more informative than the current iron panels. These tests are just coming available.
Ultimately manipulating hepcidin may be more valuable than dosing with iron.
This is new science of course.
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