Sept 8, 2009 Bologna CCSVI conference- finalized notes

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

Postby cheerleader » Thu Sep 10, 2009 3:40 pm

Sawdoggie wrote:Where I think that the iron oversupply can become an issue in MS is through "iron-enriched" microbleeding so to speak which could exacerbate the localized damage caused by CCSVI. The big hole in my theory still revolves around the fact that women have a higher rate of MS compared to men. .


Absolutely, Sawdoggie! And welcome to the forum- it's great to have you here. I'm sure you're right that hemochromatosis would make a bad situation in CCSVI even worse. As far as the male female ratio, venous and lymphatic malformations and chronic venous insufficiency is more common in women than men.
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby mrhodes40 » Thu Sep 10, 2009 4:39 pm

I have very much enjoyed reading this wonderful synopsis of the conference. Thank you is not enough to express the gratitude that I feel towards you Cheer for undertaking this expense and effort.

The "romantic" notion of going to Bologna cannot be anything like a 14 hour flight with Norwegian bikers, followed by a small gelato instead of dinner then off to bed, the next day a dinner meet and greet that was entirely documented by you, a post to us then a quick sleep and a long day of conference, a third sleep then 14 hour fly home again made more interesting by compiling the notes from the conference. I mean, that ain't no picnic in Bologna. It was good of you to do it for all of us.

The thing that struck me was how many experts from other disciplines have already been aware of and working on this model, for example, the work of the geneticist who mentioned the HLA types and the expanded genetic codes that are related to the venous malformation. It made sense that this was true given CCSVI, but I expected someone to look at that sometime later, it blows me away that this type of work is already begun.

We are further down the path than I imagined and it fills me with gratitude.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby radeck » Fri Sep 11, 2009 9:14 am

cheerleader wrote:
Sawdoggie wrote:Where I think that the iron oversupply can become an issue in MS is through "iron-enriched" microbleeding so to speak which could exacerbate the localized damage caused by CCSVI. The big hole in my theory still revolves around the fact that women have a higher rate of MS compared to men. .


Absolutely, Sawdoggie! And welcome to the forum- it's great to have you here. I'm sure you're right that hemochromatosis would make a bad situation in CCSVI even worse. As far as the male female ratio, venous and lymphatic malformations and chronic venous insufficiency is more common in women than men.
cheer


Thanks for this explanation. As I understand it, CCSVI is the root of the problem, but over-supply of iron would exacerbate inflammation and therefore symptoms.

Maybe not completely coincidentally, my problems started after beginning to supplement with iron last summer and fall. My wife started using Floradix, and we thought maybe I should try it, maybe it'll increase my energy levels, which could have been low because of the CCSVI.

The question is, what to do about this, i.e. how can I as a men achieve the more favorable course of a pre-menopausal women? Probably it would be al little dangerous to drain myself of some blood every once in a while ;-). My diet is rich in whole grains and vegetables high in natural iron, but I stopped supplementing a month ago. I doubt that changing my whole foods diet is the key.

Are there any herbal supplements or other non-prescription drugs that chelate the iron?
Last edited by radeck on Fri Sep 11, 2009 6:35 pm, edited 1 time in total.
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Postby Sawdoggie » Fri Sep 11, 2009 10:25 am

radeck wrote:The question is, what to do about this, i.e. how can I as a men achieve the more favorable course of a pre-menopausal women? Probably it would be al little dangerous to drain myself of some blood every once in a while ;-). My diet is rich in whole grains and vegetables high in natural iron, but I stopped supplementing a month ago. I doubt that changing my whole foods diet is the key.

Are there any herbal supplements or other non-prescription drugs that chelate the iron?


The way I understood it was the only way to get rid of iron is to bleed a little. When my ferritin count was found to be high about ten years ago I gave a pint every two weeks (the blood bank can take it though I am not sure how/if MS meds would affect that). It dropped me to almost nothing over the course of a year and was easy and safe. Have some blood tests done for ferritin as well as an "iron battery". Normal people absorb 10% of the iron that is consumed while those with hemochromatosis absorb around 20%. If anything it can't hurt to see where you stand in the Fe department.
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Postby LR1234 » Fri Sep 11, 2009 10:31 am

Apparantly Grape juice (red) prevents iron being absorbed.
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Postby CureIous » Fri Sep 11, 2009 1:08 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:50 pm, edited 1 time in total.
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
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Postby radeck » Fri Sep 11, 2009 1:55 pm

Because I don't know yet what caused my issues, I personally wouldn't feel comfortable donating my blood or bone marrow. Of course this may be a bad/paranoid decision, and may cause more harm than good...

I'm looking into the grapefruit juice stuff but first should have my iron levels checked.

One question I have is: could anti-coagulants like aspirin and garlic, apart from being beneficial in keeping the blood flowing, increase the micro-bleeds caused by the stenosis?
Last edited by radeck on Tue Sep 13, 2011 9:33 am, edited 1 time in total.
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Postby cheerleader » Fri Sep 11, 2009 2:11 pm

mrhodes40 wrote:I have very much enjoyed reading this wonderful synopsis of the conference. Thank you is not enough to express the gratitude that I feel towards you Cheer for undertaking this expense and effort.

The "romantic" notion of going to Bologna cannot be anything like a 14 hour flight with Norwegian bikers, followed by a small gelato instead of dinner then off to bed, the next day a dinner meet and greet that was entirely documented by you, a post to us then a quick sleep and a long day of conference, a third sleep then 14 hour fly home again made more interesting by compiling the notes from the conference. I mean, that ain't no picnic in Bologna. It was good of you to do it for all of us.

The thing that struck me was how many experts from other disciplines have already been aware of and working on this model, for example, the work of the geneticist who mentioned the HLA types and the expanded genetic codes that are related to the venous malformation. It made sense that this was true given CCSVI, but I expected someone to look at that sometime later, it blows me away that this type of work is already begun.

We are further down the path than I imagined and it fills me with gratitude.


Thanks, Marie...I wish you were there with me. I know you would have been hanging on every word next to me :D and you would have loved meeting all the docs in person.

It was a grueling few days, but I felt honored to be there, and realized it was a culmination of all the research and searching of the last couple of years....to see it come together was magical.

I was impressed that every single doctor that spoke seemed to place another missing piece of the puzzle...from the congenital and genetic evidence, to the evidence of what really goes on in the MS brain as shown with SWI technology...all of these different fields said that they were surprised that NO ONE HAS EVER STUDIED THE JUGULARS AND VENOUS RETURN BEFORE in relation to neurological disease. Everyone kept scratching their heads and saying, "we need a birds' eye view!" or "We need to step back and study the venous system."
And of course...this is what we've been crying out for awhile on here. Look beyond on the brain!!!!! The body is one organism!!!! So that part felt really validating.

We are much further down the path in research, you are right. However, it seems we are just beginning in explaining this, as evidenced by all the questions I'm getting...

I would recommend that all folks who are new to the forums, please read the big CCSVI thread first...many of the questions are answered there, and it's like reading a novella...you can see how we all learned about CCSVI together. Also, try the search function to find a topic of interest, like "Natural chelator" or "Stanford + Dake" to find some of the items already covered.

I'm taking the weekend off (got the Emmys tomorrow, wish Jeff luck!) so if you don't hear from me...I'll come back 'round in a few days. But really, use that search function, and read all you can...
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Fri Sep 11, 2009 2:21 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:49 pm, edited 1 time in total.
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
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Postby Jamie » Fri Sep 11, 2009 2:50 pm

Judging by the reports we should be looking 18 months+

(Shorter term benefits too hopefully!)
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Postby CureIous » Fri Sep 11, 2009 3:47 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:49 pm, edited 1 time in total.
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
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Postby marcstck » Fri Sep 11, 2009 5:11 pm

Cheer, thanks for the wonderful job of globetrotting medical journalism that you did. Bravo!

I hope you don't mind, but I forwarded your notes to the neuro down at the NIH that is handling my case. She thanked me for the info, and promised to give it a very thorough read.

Good luck at the Emmys. Has Jeff won any hardware before? The best I could do before MS put the kabosh on my career was win a "Platinum DVD" award for a Pearl Jam DVD that I worked on. It's hanging on the wall near my computer, kind of a bittersweet memento...
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Postby radeck » Fri Sep 11, 2009 7:36 pm

Cheer, about Haake and the iron deposition issue. I read your notes again and it is not clear to me from those notes alone that iron is in any causative relation to MS disease activity. As I understand it, CCSVI causes reflux and micro-bleeding. Areas with micro-bleeding take up iron, therefore a brain with lots of microbleeds has lots of iron deposits. There's mention that iron itself is inflammatory, but is this a fact or theory? Sorry if I'm missing something that maybe was discussed elsewhere before. All I see at this point is a correlation, no causation. Thanks to you or anybody who could clarify this further. Radeck
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Postby mrhodes40 » Sat Sep 12, 2009 7:14 am

Rad, you need to read The Big Idea and also to read general MS literature on iron and MS. It is not reasonable to expect notes from the Cenaculum to address something like that, there is a certain amount of information/understanding that is expected as a baseline.

example; Is there any evidence that lesions are the cause of MS? I mean all I have seen is an association, yes they are there when you do an MRI but does that mean they are the cause?

That second question is loaded because we know that white matter lesions are only a small part of the MS progression story and we know for sure that inflammation is almost immaterial to progression becaue SPMS people can get all the way to EDSS 10 (death) with no inflammation.

Yet you'd be insane to say that lesions on MRI mean nothing. For the last decade the presence of lesions have been adequate for an MS diagnosis, prior to that we had the 2 events separated by space and time requirement.

The fact is that if there is something that is in the lesions always, it is part of the pathology. Iron is always there and if you read some of the background literature it is more associated with EDSS that lesion load.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby radeck » Sat Sep 12, 2009 9:53 am

Hi Marie, I wasn't doubting that there is causation. I also wasn't claiming that inflammation is correlated 1-1 with disease activity (my own brain/body seems to be a good example against that). All I'm wondering is whether regions where neurological symptoms originate simply suck up iron, or whether the iron exacerbates those neurological symptoms.

This is because we had asked the question here whether one should worry about iron supplementation or not, and how important it is to look into ways to chelate it or blood-led. Following your advice, I will go back to "The Big Idea" (which for those who are new to the discussion is available for free at http://www.fondazionehilarescere.org/en ... zioni.html) and follow the references therein that seem to support the causative role.

For me personally, the correlation in combination with my own negative low number-statistic experience with supplementation is enough reason to be careful.
Last edited by radeck on Sat Sep 12, 2009 10:09 am, edited 2 times in total.
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