EBV/CCSVI/MS - congenital?nutritional?both?

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

Postby cheerleader » Mon Aug 09, 2010 12:24 pm

jimmylegs wrote:
b12 deficiency is the major differential dx for ms. to my knowledge, b12 deficiency has nothing to do with CCSVI. it's also only one part of the constellation of deficiencies that my vegan diet had created, each of them coincidentally suspect in ms.


Not CCSVI specifically....but low B12 has everything to do with endothelial dysfunction--and a permeable vascular system.
7. Low Vitamin B12 levels-
Anemia/low vit. B12 creates high levels of homocysteine in the blood (a
sulfur containing amino acid) which damages the endothelium
A strict vegetarian diet that excludes all meat, fish, dairy and eggs, or an
unbalanced diet of processed foods could create low vit. B12 levels and
damage the endothelium (10)

http://www.americanheart.org/presenter. ... tifier=535

for those who haven't had a chance, please check out the endothelial health paper...low vitamin D, low vit B, high fat, and many other MS hit list issues are in there--

http://www.facebook.com/note.php?note_id=123456602210
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Mon Aug 09, 2010 12:40 pm

Not CCSVI specifically....but low B12 has everything to do with endothelial dysfunction--and a permeable vascular system.


yes and not just endothelial but more broadly, epithelial function - as does zinc, another key problem nutrient for vegans, with all its links to permeability of blood brain barrier, intestinal wall, etc etc

march 21, 2009
http://www.thisisms.com/ftopicp-54065.html#54065
Zinc deprivation induced a decrease of transepithelial electrical resistance and alterations to tight and adherens junctions...
click link for entire post.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby cheerleader » Mon Aug 09, 2010 1:00 pm

right...endothelial cells are a subset of epithelial cells. Endothelial cells are only found in the lining of blood vessels, and are mitigated by EDF, or nitric oxide. That's been the focus of the vascular doctors looking at CCSVI, but I'm sure there are all kinds of ramifications for disease in epithelial cells, as well (leaky gut, crohn's, etc)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Mon Aug 09, 2010 2:01 pm

READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby 1eye » Mon Aug 09, 2010 3:19 pm

Till I was in this wheelchair, I would have accepted that, OK, maybe it's my fault. Maybe I just never got serious enough with my diet. There was a stretch back around 97-99 where I was OK, and thought I had everything under control with diet.

I also thought I would have it licked with LDN. Since then, I have gone into a stretch of time when I was deemed SPMS, and not treatable, except if I happen to find a miracle in a study. With no DMDs I have gone from the occasional cane user to the permanent wheelchair user in one long slow slide.

It is irksome to hear about how some folks feel they have it licked, and don't need any help. Or that they think if someone would just live right, they would be able to control it.

I periodically meet with a room full of fairly geriatric and disabled MSers, and we occasionally lose one. We'll have to get some more soon... I am sorry, Jimmy, but I take no blame for what has happened to me. There have been times (not real recent, but memorable) when I have said all the same stuff as I hear here, about how if people with 'MS' just did this or that, they'd be as good as I am.

On special occasions I bring a platter of marijuana brownies, and you should see those little old ladies move. They bring them home with them. Never any leftovers.

But unfortunately, everyone grows older. With that, for me, has come progression. Including lots of falls, which happened because I was over-confident, trying to use legs that didn't wanna, and didn't know the rule about never letting your head tilt too far. Including a walker, AFO, and finally a wheelchair, which is much faster than legs, on flat ground.

I don't want to rain on any parades. I saw a testimony from one of Dr. Dake's people who had remission of a fair amount of disability and now does long walks and climbs, and considers himself cured. I am not expecting that, but one can always hope.

Since the heart attack, I have taken as good care of eating, exercise, and bodily concerns as most. I realize that the prevalent lifestyles are unhealthy. I have been through Paleo, Best Bet, Swank, Penthouse (no, skip that one) etc. I increased my D consumption as per Dr. Embry, whom I have seen in a personal talk he gave at Ottawa Hospital. I have been rigorous about cholesterol. The list of things I have not tried is probably still long, but I have tried a lot over the years.

As long as you have something that works for you, great. That will not necessarily help me, though it might, a bit. But never close to enough to make my left foot move. This procedure likely won't either. But, with all respect I'll take that over changes to my diet (again).

I will be ballooned. I may not improve. But I'll have tried. The long slow slide is something I have learned to live with. Once it starts, which it obviously has not yet for you, and I hope it does not, it doesn't stop, until you kick the bucket. My wheelchair is faster than yours. :P :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Donnchadh » Mon Aug 09, 2010 5:56 pm

As the old says goes, "There's more than one way to skin a cat."

All of the causes mentioned above probably have their roles in MS.

But I think that a small percentage of cases (especially it would seem in progressive types) involve some sort of neck, head, or chest trauma, judging from the correspondence I have had. 5% to 10%????

All were normal prior to their accidents, and then depending on how bad the injury was, the emergence of symptoms. I find it interesting that none were RRMS types.

Not scientific sampling by any means but it does make me wonder about the connection.

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Postby Donnchadh » Mon Aug 09, 2010 6:00 pm

1eye wrote:
snip

On special occasions I bring a platter of marijuana brownies, and you should see those little old ladies move. They bring them home with them. Never any leftovers.

snip

:P :)


Does marijuana help with the symptions?

Donnchadh
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Postby 1eye » Mon Aug 09, 2010 6:09 pm

Donnchadh wrote:
Does marijuana help with the symptoms?

Donnchadh


I dunno, they never leave me one. Yes, of course it does. Ask any Compassion Club worker. Cancer and AIDS too.
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'MS' is over - if you want it
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Postby jimmylegs » Mon Aug 09, 2010 6:12 pm

It is irksome to hear about how some folks feel they have it licked, and don't need any help. Or that they think if someone would just live right, they would be able to control it.

I periodically meet with a room full of fairly geriatric and disabled MSers, and we occasionally lose one. We'll have to get some more soon... I am sorry, Jimmy, but I take no blame for what has happened to me.


1eye, you may wish to re-read my earlier post on this thread:
http://www.thisisms.com/ftopicp-128135.html#128135
in particular,
"maybe in some cases it's a worse congenital condition and no amount of prevention will ensure health in the long term." and,
"at this point, where i'm personally at with CCSVI in the context of MS is:
-some cases of CCSVI (in MS patients or otherwise) are congenital (absent jugulars etc)
-some cases of CCSVI might not be congenital
-some people might develop all the signs and symptoms of MS for reasons other than CCSVI "

recalling cases such as spontaneous MS remission after a liver transplant, gives me pause when i see people laying 100% of MS at CCSVI's door. there is more to it. certainly testing and treatment are helping lots of ms patients but i don't believe it's going to apply to 100% of patients.

i hope no one else takes it personally that my situation is likely to be different based on a long history of *serious* malnutrition - well above and beyond issues seen with the standard modern diet in an industrialized nation. example: ms patient zinc is around 11-15 umol/L. mine was 8.6. i had a far worse diet than the average joe's prior to my dx, even though it was predominantly whole foods.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby ozarkcanoer » Mon Aug 09, 2010 7:36 pm

I agree that we can't blame ourselves or our lifestyles for our MS. I don't smoke, drink, am not overweight, my diet is not full of junk food, I don't do illegal drugs (but too many legal ones) I used to exercise moderately (until this summer :cry: ). My BNAC tests show that my brain has a HUGE amount of iron and that I have CCSVI. What did I do to cause that ? I grew up in a town where the tap water caused everything to rust it was so full of iron... is that it ? We could guess from now until forever what we, the patients, have done wrong to cause our problems. But this isn't our fault. The last neurologist I saw, and I kid you not, she is a top-notch professor of neurology at the local medical school, told me my headaches have a psychiatric origin. Now how many times have I heard that in my life from doctors, male and female. If you have symptoms they can't treat they must be all in your head. Shame on you. Well of course they are in your head, where else would they be ? (maybe in your spine?). It's time someone untangled this MeSs and I hope that CCSVI is the first lead. It is about time.

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Postby Donnchadh » Mon Aug 09, 2010 7:55 pm

ozarkcanoer wrote:I agree that we can't blame ourselves or our lifestyles for our MS. I don't smoke, drink, am not overweight, my diet is not full of junk food, I don't do illegal drugs (but too many legal ones) I used to exercise moderately (until this summer :cry: ). My BNAC tests show that my brain has a HUGE amount of iron and that I have CCSVI. What did I do to cause that ? I grew up in a town where the tap water caused everything to rust it was so full of iron... is that it ? We could guess from now until forever what we, the patients, have done wrong to cause our problems. But this isn't our fault. The last neurologist I saw, and I kid you not, she is a top-notch professor of neurology at the local medical school, told me my headaches have a psychiatric origin. Now how many times have I heard that in my life from doctors, male and female. If you have symptoms they can't treat they must be all in your head. Shame on you. Well of course they are in your head, where else would they be ? (maybe in your spine?). It's time someone untangled this MeSs and I hope that CCSVI is the first lead. It is about time.

ozarkcanoer


After your liberation procedure, you might want to consider an iron removal protocol. It is really helping me to cope.

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Postby jimmylegs » Mon Aug 09, 2010 8:11 pm

We could guess from now until forever what we, the patients, have done wrong to cause our problems. But this isn't our fault.

probably true. but more than likely measurably true that i am largely responsible for my own personal situation.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby 1eye » Mon Aug 09, 2010 8:14 pm

jimmylegs wrote:b12 deficiency is the major differential dx for ms. to my knowledge, b12 deficiency has nothing to do with CCSVI. it's also only one part of the constellation of deficiencies that my vegan diet had created, each of them coincidentally suspect in ms.


Why have I never heard that? Nobody ever tested me and said "you have B12 deficiency, so you have MS." As far as I know it has never been tested.

It would certainly be better and cheaper than spinal taps and MRI.
"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 1eye » Mon Aug 09, 2010 8:53 pm

jimmylegs wrote:"maybe in some cases it's a worse congenital condition and no amount of prevention will ensure health in the long term." and,
"at this point, where i'm personally at with CCSVI in the context of MS is:
-some cases of CCSVI (in MS patients or otherwise) are congenital (absent jugulars etc)
-some cases of CCSVI might not be congenital
-some people might develop all the signs and symptoms of MS for reasons other than CCSVI "

recalling cases such as spontaneous MS remission after a liver transplant, gives me pause when i see people laying 100% of MS at CCSVI's door. there is more to it. certainly testing and treatment are helping lots of ms patients but i don't believe it's going to apply to 100% of patients.


Well we CCSVI victims certainly are an odd bunch. A liver transplant may significantly alter venous drainage, I would think. I guess you would be one of those who thinks CCSVI is treatable with chemistry. I'll take Liberation, thanks. I think we are indeed at different levels of sickness. I promise not to be irked by you anymore.

I think maybe part of our profile or something should be our EDSS. There are a wide variety of 'MS' apples and oranges. Part of the wide variety is caused by the problem that MS has sometimes been a catch-all, or last-resort diagnosis. That is partly because of the ambiguity that permeates a disease nobody knows the cause of. I think CCSVI is commonly the cause, and it is assisted whenever it feels like it, by viruses, bacterial infections, probably fungi, traumatic injury, bony growths, environmental toxins, plus probably a host of other things. Some of them can cause MS symptoms (some) all by themselves, as the symptoms are widely defined. I don't even think ''MS" can lay claim to all of what it is blamed for.

So where does that leave us? I guess you'll go one way, I'll go another. I am glad you feel so well.
"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 se1956 » Tue Aug 10, 2010 12:10 am

The keyword is risc factor:

(congenital) CCSVI
+
nutrition
+
infection (EBV, bacteria...)
+
.... ??
= compound risc level for the development/progression of MS

Altering one, changes the overall risc level - more or less.
I think CCSVI may be one major risc factor.

R.


Again the argument for some doctors:

... there are many, many smokers without lung cancer and vascular diseases, therefore smoking cannot be the cause of these diseases....
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