CCVI/ EBV link?

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

CCVI/ EBV link?

Postby Lars » Sat May 09, 2009 5:36 pm

So, I am am firm believer that EBV and/or HHV's role in MS can no longer be dismissed. I also find the CCVI connection to be compelling. Here's my dilemma, after doing a search for both EBV and venous stenosis there was a ton of hits which honestly gave me a headache. I have to wonder if the pattern is that EBV causes CCVI and CCVI leads to MS.
Thinking out loud,
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SOMETHING causes it!

Postby lyndacarol » Sat May 09, 2009 6:00 pm

Lars -- I share your thinking when you said, "I have to wonder if the pattern is that EBV causes CCVI and CCVI leads to MS.
Thinking out loud."

If the venous system is abnormal and has a problem there, I think there must be a cause for it. My candidate, as you must expect, is excess insulin.
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Postby cheerleader » Sat May 09, 2009 6:08 pm

I think the docs have been looking very hard at the wrong trees, and missing the forest, Lars.
95% of Americans carry EBV. Quotes from the CDC--
Epstein-Barr virus, frequently referred to as EBV, is a member of the herpesvirus family and one of the most common human viruses. The virus occurs worldwide, and most people become infected with EBV sometime during their lives. In the United States, as many as 95% of adults between 35 and 40 years of age have been infected


Less than half of those people develop full-blown mono,
When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 50% of the time.

Less than 1% of those folks ever go on to get MS. That's alot (millions and millions) of people walking around who have EBV, have had mono, yet never get MS. I just don't see the connection.

I look more to the genetic link between the MS gene and venous stenosis and venous insufficiency. There is more conclusive evidence showing up there- but that's just my paradigm...
Plus, my hubby's glucose numbers are terrific, and his doc says he was most likely born with narrowed jugular veins...looks congenital to him....them thar northern European, auburn haired, good-looking (!), venously-impaired folk!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lars » Sat May 09, 2009 6:19 pm

Cheer,
Maybe the connection is hard to see because only those carrying EBV in a highly virulent form, thus developing venous issues as a result, get MS. Some people die from the flu, most don't.
I'm flying by the seat of my pants and making this up as I go!
To add to this line of thinking, there are different strains of EBV. This is a quick search link: http://www.ncbi.nlm.nih.gov/pubmed/8700544
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Postby marcstck » Sat May 09, 2009 6:29 pm

Based on much of the recent evidence, the link between EBV and/or HHV-6 to MS seems irrefutable. It is true that 95% of adults carry the EBV virus, but 100% of MS patients test positive for it.

If there is something to the venous insufficiency hypothesis, they're must be a link between such insufficiency and the human herpes viruses...

As I've previously stated, I remain skeptical of CCVI, but I do see that some of the evidence is compelling. Obvious problems with the theory remain, though.

For instance, how does CCVI explain the prevalence of other "autoimmune" diseases in MS patients, such as Hashimotos, psoriasis, etc. A very large percentage of patients suffering from MS (myself included) also suffer from a variety of other autoimmune diseases/syndromes. CNS blood flow problems wouldn't seem to account for these other diseases...

I'm genuinely interested in CCVI as a viable theory, and I would be ecstatic if MS could be treated with a relatively simple surgical procedure, but I'm having trouble seeing CCVI as a causative factor rather than a component of the disease...
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EBV prevalence

Postby lyndacarol » Sat May 09, 2009 6:56 pm

Marc--I have trouble believing your quote:
It is true that 95% of adults carry the EBV virus, but 100% of MS patients test positive for it.
Can you supply me with a reference or source for that information? I have not seen that information from any study. I have never had mononucleosis; I have never been tested for EBV. I DO have MS.
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Postby Lars » Sat May 09, 2009 7:11 pm

LC,
To verify Marc's facts:
http://www.webmd.com/multiple-sclerosis ... nked-to-ms
Many with HHV have no idea they are infected.
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Postby cheerleader » Sat May 09, 2009 7:13 pm

Lars...you got EBV on the CCSVI thread! (remember the "you got peanut butter on my chocolate" ad? I may be dating myself with that one...)

I shouldn't speak in terms of black or white...it's probably a shade of gray. Who knows...maybe a form of EBV contributes to the formation of stenosis in the venous systems of some MS patients. All I know is, there's nothing we can do about EBV now, where as venous function can be repaired. Only time will tell...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lars » Sat May 09, 2009 7:27 pm

Cheer,
What I have on the CCVI thread is a need to understand what may or may not cause it. To go blindly into the night serves no one. We have enough therapies that provide no known "mechanism of action". If it works great, but we should all be interested in what causes it. Compartmentalizing the forum into "my theory" and "your theory" is what MS research has done without success. It is obviously a combination of issues that need to be considered.
Peace,
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Re: EBV prevalence

Postby marcstck » Sat May 09, 2009 7:44 pm

lyndacarol wrote:Marc--I have trouble believing your quote:
It is true that 95% of adults carry the EBV virus, but 100% of MS patients test positive for it.
Can you supply me with a reference or source for that information? I have not seen that information from any study. I have never had mononucleosis; I have never been tested for EBV. I DO have MS.


Lars' post above provides one source of this information. There have been other studies that have also shown a universal infection with EBV among MS patients.

My own neurologist, a respected researcher who runs his own research facility here in New York City, has told me that he's verified this in his own research. Virtually all of his MS patients (which over the course of his career have numbered in the thousands) carry EBV...

The large majority of adults carrying Epstein-Barr virus never had mononucleosis. Very often, the virus is asymptomatic...
Last edited by marcstck on Sat May 09, 2009 7:45 pm, edited 1 time in total.
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Postby Lars » Sat May 09, 2009 7:44 pm

One last bit of hijacking to prove a previous point about degrees of EBV. This is from the link I posted earlier. Please note the wording of highest levels and lowest levels. I promise not to contaminate the thread further.
Lars
"Further analysis showed about a 50-fold increased risk of MS among people with the highest levels of EBV antibodies, compared with those with the lowest levels".
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Postby Sharon » Sat May 09, 2009 8:08 pm

Cheer wrote
....them thar northern European, auburn haired, good-looking (!), venously-impaired folk!


Cheer I had to laugh - last year I was treated for "trigger finger" - you young ones probably have never heard of it. You usually get it when you have matured :wink: . The surgeon who treated it mentioned that I must have a northern European heritage. And, yes I do claim that heritage from my father who also had "trigger finger" on the same finger!! It's genetic. Seems to me the CCSVI could also have a genetic link
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Postby cheerleader » Sat May 09, 2009 8:19 pm

Glad you got a giggle Sharon. And I do know what a trigger finger is! I'm sorry....I've been way too goofy tonight, and I didn't use the smiley face guys.... :lol: :lol: :lol: :lol: :lol:
There, I just thought we needed a bit of levity...sorry to any I offended with my viking/Reese's peanut butter cup jokes.
Really,
cheer

lars...Jeff's jugulars look congenital to the doc. Don't think anything "caused" it. Whether or not fixing it helps his MS will be seen.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Sat May 09, 2009 8:44 pm

I'd love to see the discussion continue. I am hungry for more info.
I just can't get this out of my head.

...is the stiffness of venous wall, it is not external compression. Neither is it alike varicose veins, thrombosis, atherosclerosis, or so. It is very strange, I am sitting in vascular sonography for years and I don't remember to see such a vein before scanning MS patients.
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Postby chrishasms » Sat May 09, 2009 9:37 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 1:19 pm, edited 1 time in total.
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