Connective Tissue Disorders, Collagen and CCSVI

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

Postby ikulo » Sun Mar 20, 2011 10:29 pm

from Dr. Dake's slide:


Until a time when we reach a more sophisticated, higher plane of
diagnostic acumen, not just regarding CCSVI, but all MS therapies, we will
continue to experience dialogues that are polarizing, unedifying and fail to
benefit patients in meaningful ways
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Postby monik_77 » Mon Mar 21, 2011 11:52 am

See this paper has a lot of relation:

http://www.ncbi.nlm.nih.gov/pubmed/18517131

http://www.bmj.sk/2008/10903-03.pdf

Cheers,

Moni
Last edited by monik_77 on Mon Mar 21, 2011 11:59 am, edited 1 time in total.
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Postby CCSVIhusband » Mon Mar 21, 2011 11:56 am

cheerleader wrote:
Rokkit wrote:I'm also wondering if this is why the stenoses seem to progress. Some studies are correlating age and degree of disease progression with severity of stenoses. Could it be that the years of insult produced by reflux and altered hemodynamics resulting in slow, ongoing collagen shift is what accounts for the progression of CCSVI and MS?


Exactly right, Rokkit. We see this in cardiovascular disease, where disturbed blood flow changes the lining of the artery over time, and eventually leads to stroke or heart attack.

CCSVI is a progressive disease. Years of altered hemodynamics create hardened, stiff and stenosed veins. BUT, most likely, the venous malformation is there from the beginning. It is the altered flow + severity of VM + time which creates MS progression.

Cece, we don't know yet is venoplasty creates a switch back. Dr. Gabbiani and others will be looking at that. We do know that health shear stress and flow enhances endothelial function and allows for healing, but to what degree is just not known yet-
cheer


Too bad my "friend" isn't here to argue anymore.
I think I've been saying that for quite a while now (not to take credit for it, because I'm sure I'm not the first one that said it - it just makes sense).
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Postby CCSVIhusband » Mon Mar 21, 2011 11:57 am

cheerleader wrote:
Rokkit wrote:I'm also wondering if this is why the stenoses seem to progress. Some studies are correlating age and degree of disease progression with severity of stenoses. Could it be that the years of insult produced by reflux and altered hemodynamics resulting in slow, ongoing collagen shift is what accounts for the progression of CCSVI and MS?


Exactly right, Rokkit. We see this in cardiovascular disease, where disturbed blood flow changes the lining of the artery over time, and eventually leads to stroke or heart attack.

CCSVI is a progressive disease. Years of altered hemodynamics create hardened, stiff and stenosed veins. BUT, most likely, the venous malformation is there from the beginning. It is the altered flow + severity of VM + time which creates MS progression.

Cece, we don't know yet is venoplasty creates a switch back. Dr. Gabbiani and others will be looking at that. We do know that health shear stress and flow enhances endothelial function and allows for healing, but to what degree is just not known yet-
cheer


Too bad my "friend" isn't here to argue anymore.
I think I've been saying that for quite a while now (not to take credit for it, because I'm sure I'm not the first one that said it - it just makes sense).
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Postby cheerleader » Mon Mar 21, 2011 7:45 pm

Hi husband--
I'm really not in this for argument's sake :)
I do believe this research has the potential to help people. That's the only reason I sitck around and make sure the new papers are posted as they come out. The bickering actually bothers me, since it takes away from the factual evidence.

The connection of venous insufficiency and progression is really Dr. Zamboni's. He wrote about it in his Big Idea paper---where he likened altered hemodynamics and time to the severity of leg ulcers to the accumulation of iron deposition and progression of MS--
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633548/

the same, exact collagen shift happens in the veins of the legs. That is the genius of Dr. Zamboni's discovery.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CCSVIhusband » Tue Mar 22, 2011 4:21 am

Thanks Cheer ... we're so grateful for all you've done and glad you stick around and post more and more research backing up Dr. Zamboni's theory.

Personally, I love your posts and your handling of those who clearly just want to argue with you or mock you ... I know it drives them NUTS that you do so with such class ... :)


I have the wherewithal and professional couth to deal with it at work ... here, their ignorance gets the best of me though (and sometimes I don't mind my hands getting a little dirty)

:twisted:
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Endothelin1 and its affect on Collagen Types I and III

Postby MegansMom » Thu Mar 24, 2011 8:13 am

I should have called this thread ITS NOT JUST PLUMBING!

Per the newest studies they have determines that Collagen type I changes to Collagen Type III in pwMS/CCSVI.

They said this is the opposite of that found in normals.

Could Endothelin1 be the culprit?

Since Endothelin1 production is triggered by changes in sheer stress, hypoxia and hypoglcemia ( and pwMS have E1 levels higher than normal and they don't know why)

I believe the CCSVI condition triggers the endothelium to try to fix itself- it increases E1 because it is being told by signals that the vessel needs to be reinforced- E1 is as potent as a drug!

Then the high E1 level chronically could be the reason the Collagen Type I changes over time and is "remodeled" into Collagen Type III ! E1 causes fibrotic changes and hypertrophy !

there is a relationship between these vessel wall signalers.

http://www.ncbi.nlm.nih.gov/pubmed/8729057

The body works with a series of polypeptide and protein signals and responses- the aim is always homeostasis- the body likes balance and it tries to repair itself........

Just like scar is wonderful in that we heal, its never the same as normal non-scar tissue and can become bad when its adhesions or keloids.



What we need to take away from this is: Veins ( and arteries) are not merely plumbing and conduits, every square inch and there are hundreds of miles of endothelium is an organ- an organ that responses and changes,

CCSVI is not merely blocked vessels......... there is much much more.

And following an endothelial healthy lifestyle post CCSVI is imperitive.

No smoking, a healthy diet and regular exercise are very important to recover maximally from Venoplasty.

PRE-CCSVI do a few things:

Stop Smoking and anything else that may cause vaso constriction such as drinking high levels of caffiene.
Plan an exercise program, use a Physical Therapist if needed, remember any movement is exercise, and start moving if you can.
Learn about a good endothelial healthy diet and change small things with the aim to change over time. Throw out foods that are bad for you.
Stay hydrated all of the time.
Get Dr Cooke's Book " The Cardiovascular Cure" its very cheap on amazon.
Last edited by MegansMom on Thu Mar 24, 2011 11:56 am, edited 4 times in total.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Re: Endothelin1 and its affect on Collagen Types I and III

Postby Cece » Thu Mar 24, 2011 8:33 am

MegansMom wrote:No smoking, a healthy diet and regular exercise are very important to recover maximally from Venoplasty.

PRE-CCSVI do a few things:

Stop Smoking and anything else that may cause vaso constriction such as drinking high levels of caffiene.
Plan an exercise program, use a Physical Therapist if needed, remember any movement is exercise, and start moving if you can.
Learn about a good endothelial healthy diet and change small things with the aim to change over time. Throw out foods that are bad for you.
Stay hydrated all of the time.
Get Dr Cooke's Book " The Cardiovascular Cure" its very cheap on amazon.

You are so right, MegansMom. It's different to think of the endothelium as an organ, just as our skin is an organ.

Before venoplasty, I was constantly drinking either water or diet coke, it really kept me going. It made no apparent difference if it was caffeinated or noncaffeinated diet coke. Perhaps it was hydration and maximizing blood flow. What a relief to be post-venoplasty at last though.
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Postby cheerleader » Thu Mar 24, 2011 8:57 am

Bingo.
The endothelium is our largest secreting organ, and it changes due to many factors. And the change of the endothelium due to disturbed blood flow can shift collagen from the more plient form of type I, to the more rigid form of type III...just like it does in varicose veins.

Stress, toxins, lack of vitamin D, lack of movement, smoking, saturated fats, lack of antioxidants make it worse.
And Megan's Mom is right....buy Dr. Cooke's book, try his recipes and learn from the master. Jeff and I are healthier, happier and lookin' good thanks to Dr. Cooke.
My "cliff note" version is here:
http://www.ccsvi.org/index.php/helping- ... ial-health

You're right Megan's Mom....you need a snappier title to get eyeballs on your thread :)
thanks for continuing the conversation--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bluesky63 » Thu Mar 24, 2011 9:08 am

"Tuning up the hidden organ" :-)

Actually, here's a question -- the answer may seem obvious to someone else but I feel dense. If a person has a collagen disorder such as Ehlers-Danlos Syndrome (or even the ghost of a collagen disorder, from sharing genetic material with people who have EDS) -- then how does that intersect with CCSVI?

As an example of a possible analogy, I am thinking of how a person can initially have hyperflexible joints, but then years later end up very "stiff" because the muscles overcontract around the joint to stabilize it. So perhaps a malfunctioning area of a vein ends up overstiff because of overaction by the surrounding tissues.

??? :-)
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Postby PointsNorth » Thu Mar 24, 2011 9:26 am

Cece - I find that drinking water helps trememdously especially with fatigue. The effect is almost instantaneous! Drinking black tea (tea granny here) has little or no effect. Maybe it is the caffiene in tea? - however caffienated coffee affects me in ways that tea does not. I will buy the book mentioned above by Cheer.

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Postby Leonard » Thu Mar 24, 2011 9:27 am

cheerleader wrote:My "cliff note" version is here:
http://www.ccsvi.org/index.php/helping- ... ial-health



From your cliff note version:

8.High glucose intake

Ingesting too much glucose in the form of simple sugars increases endothelial cell death and increases oxidative stress21.

This establishes the vicious circle. Because of undernourished cells in teh brain (low blood flow, blood exhausted close to drainage, transport impaired due to iron deposits and inflammation of BBB), the body cries for glucose. Simple sugar provides immediate relief but is damaging on the long term causing malfunction of the endothelial cells. I do not exclude the possibility that this vicious circle is the same for diabetes2.
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Postby bluesky63 » Thu Mar 24, 2011 9:43 am

Just thought I'd throw this in -- collagen iii/i and diabetes:

http://www.ncbi.nlm.nih.gov/pubmed/3698469
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Postby 1eye » Thu Mar 24, 2011 12:00 pm

I do not exclude the fact that my father died with diabetes and my mother with vasculitis: both "auto-immune" though I was never clear on exactly what damages the pancreas or the organs in those diseases.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby cheerleader » Thu Mar 24, 2011 5:16 pm

bluesky63 wrote:Just thought I'd throw this in -- collagen iii/i and diabetes:

http://www.ncbi.nlm.nih.gov/pubmed/3698469


Interesting abstract, Bluesky. It appears aging and genetic predisposition contribute to the collagen shift in diabetes.

What really interested me in all of this when I started researching was that diabetes is also marked by endothelial dysfunction, and there is a connection between blockage in the portal vein, venous congestion of the pancreas and pancreatic hypofunction--
http://www.ncbi.nlm.nih.gov/pmc/article ... 51/?page=1
It's hypoperfusion of an organ, once again, that leads to an "auto immune" reaction...this time, it's the pancreas that is not receiving adequate bloodflow, due to venous obstruction.
An intact portal circulation is necessary for glucose homeostasis in both man and animals...


Dr. Eliot Frohman mentioned this in Bologna in '09, and it blew my mind...what if all autoimmune diseases are the result of venous congestion? he posited. What if? Than those with congenital malformations could be related-- as in 1eye's family, where his Dad had diabetes, his Mom vasculitis, and he has MS. A family of endothelial dysfunction.

When I started looking at endothelial dysfunction, I saw that the list of diseases linked to this "hidden organ" included cardiovascular disease, autoimmune disease and neurodegenerative disease. If blood flow and nitric oxide can be disturbed by a lack of vitamin D, or exercise, or smoking, or bad saturated fats...than we are talking about many of the modern chronic illnesses that can be ameliorated, if not cured, by following an endothelially healthy lifestyle.

I just don't know if it is possible to reverse a genetic collagen shift, as we find in Ehler Danlos, bluesky...would that it were so. But maybe lifestyle can help...it certainly can't hurt. And we're really overdue, as a society, for a holistic medical approach.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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