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

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

Postby 1eye » Mon Aug 09, 2010 8:17 am

L wrote:
elliberato wrote:
1eye wrote:Or that mono makes it easier for areas with malformations to have inflammation?

I seem to remember a Zivadinov effort that concluded there are mostly antibodies to dormant mono, not to a current or re-infection. How those antibodies interacted with 'MS', I do not remember.


I may have this backwards but I believe mono is a byproduct of the Epstein Barr Virus. As well the Virus can stay in the system with the Mono turning on or off...Either way I had it around 16 yrs as well and Ms at 40. Here we go with the chicken and the egg thing. If Zamboni turns out to be correct with the theory of CCSVI in vetro and malformations at birth, unfortunately it doesnt explain the effect of Epstein Barr...


Yes it does. It also may explain why high dose cyclophosphamide and rituximab work with MS. They both destroys B cells where the dormant EBV hides. No B cells, no EBV. I have never read anything about people with whom HDC failed and whether or not they get reinfected. I'd be very interested to find out.


J Neurol Neurosurg Psychiatry wrote:Possible connection to Chronic Cerebrospinal Venous Insufficiency - CCSVI explained.

Re: Epstein–Barr virus is associated with grey matter atrophy in multiple sclerosis
R Zivadinov, M Zorzon, B Weinstock-Guttman, M Serafin, A Bosco, A Bratina, C Maggiore, A Grop, M A Tommasi, B Srinivasaraghavan, M Ramanathan
J Neurol Neurosurg Psychiatry 2009;80:620-625 Published Online First: 23 January 2009 doi:10.1136/jnnp.2008.154906

Dear Editor,

I read the article by Zivadinov (1) with reference to the association of Epstein-Barr virus (EBV) to gray matter atrophy in multiple sclerosis (MS) patients.

Accumulation of EBV infected B cells in meninges and perivascular regions of MS lesions in 21 or 22 patients with MS (2) was noted as well, indicating direct involvement of the brain and perivascular spaces by EBV in MS patients..

A recent study has indicated chronic cerebrospinal venous insufficiency with multiple extracranial venous strictures in MS patients (3).

EBV appears to infect endothelial cells (4), and may be important in the pathology of EBV virus.

EBV virus has been found to cause deep venous thrombosis in a patient with hereditary thrombophilia (5).

EBV may infect the venous endothelium causing venous thromboses and strictures in the cranial and spinal venous drainage system and perivascular regions of MS lesions in patients with MS.

Such venous involvement may be implicated in MS disease involvement.

Chronic EBV infection may involve the venous system with secondary effects on the brain and spinal cord in MS.

References

1.Zivadinov R, Zorzon M, Weinstock-Guttman B, Serafin M, Bosco A, Bratina A, et al.
Epstein-Barr virus is associated with grey matter atrophy in multiple sclerosis
J Neurol Neurosurg Psychiatry 2009; 80: 620 -625.

2.Serafani B, Rosicarelli B, Franciotta D, et al.
Dysregulated Epstein-Barr virus infection in the multiple sclerosis brain.
J Exp Med 2007; 204:2899-2912.

3. Zamboni P, Galeotti P, Menegatti E, Malagoni AM, Tacconi G, et al.
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
J Neurol Neurosurg Psychiatry 2009: 80: 392-398.

4. Jones K, Rivera C, Sgadari C, Franklin J, Max EE, et al.
Infection of human endothelial cells with Epstein-Barr virus.
J Exp Med. 1995; 182: 1213-1221.

5. Mashav N, Saar N, Chundadze T, Steinvil.
Epstein-Barr virus associated thromboembolism: A case report and review of the literature.
Thromb Res. 2008; 122: 570-571.

No conflict of interest.

Steven R Brenner, Neurologist
St. Louis VA Medical Center and Dept Neurology and Psychiatry at St. Louis University

Source: J Neurol Neurosurg Psychiatry © 2009 by the BMJ Publishing Group Ltd


The pathology this seems to be describing is EBV -> MS, and also EBV ->CCSVI. I think that that is what I originally thought might happen, and it yet might prove to be, but I have seen some fairly convincing arguments that VMs are congenital, in this as well as other conditions. The argument that both cause aspects of MS, is appealing to me.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby L » Mon Aug 09, 2010 8:28 am

1eye wrote:
L wrote:
elliberato wrote:
1eye wrote:Or that mono makes it easier for areas with malformations to have inflammation?

I seem to remember a Zivadinov effort that concluded there are mostly antibodies to dormant mono, not to a current or re-infection. How those antibodies interacted with 'MS', I do not remember.


I may have this backwards but I believe mono is a byproduct of the Epstein Barr Virus. As well the Virus can stay in the system with the Mono turning on or off...Either way I had it around 16 yrs as well and Ms at 40. Here we go with the chicken and the egg thing. If Zamboni turns out to be correct with the theory of CCSVI in vetro and malformations at birth, unfortunately it doesnt explain the effect of Epstein Barr...


Yes it does. It also may explain why high dose cyclophosphamide and rituximab work with MS. They both destroys B cells where the dormant EBV hides. No B cells, no EBV. I have never read anything about people with whom HDC failed and whether or not they get reinfected. I'd be very interested to find out.


J Neurol Neurosurg Psychiatry wrote:Possible connection to Chronic Cerebrospinal Venous Insufficiency - CCSVI explained.

Re: Epstein–Barr virus is associated with grey matter atrophy in multiple sclerosis
R Zivadinov, M Zorzon, B Weinstock-Guttman, M Serafin, A Bosco, A Bratina, C Maggiore, A Grop, M A Tommasi, B Srinivasaraghavan, M Ramanathan
J Neurol Neurosurg Psychiatry 2009;80:620-625 Published Online First: 23 January 2009 doi:10.1136/jnnp.2008.154906

Dear Editor,

I read the article by Zivadinov (1) with reference to the association of Epstein-Barr virus (EBV) to gray matter atrophy in multiple sclerosis (MS) patients.

Accumulation of EBV infected B cells in meninges and perivascular regions of MS lesions in 21 or 22 patients with MS (2) was noted as well, indicating direct involvement of the brain and perivascular spaces by EBV in MS patients..

A recent study has indicated chronic cerebrospinal venous insufficiency with multiple extracranial venous strictures in MS patients (3).

EBV appears to infect endothelial cells (4), and may be important in the pathology of EBV virus.

EBV virus has been found to cause deep venous thrombosis in a patient with hereditary thrombophilia (5).

EBV may infect the venous endothelium causing venous thromboses and strictures in the cranial and spinal venous drainage system and perivascular regions of MS lesions in patients with MS.

Such venous involvement may be implicated in MS disease involvement.

Chronic EBV infection may involve the venous system with secondary effects on the brain and spinal cord in MS.

References

1.Zivadinov R, Zorzon M, Weinstock-Guttman B, Serafin M, Bosco A, Bratina A, et al.
Epstein-Barr virus is associated with grey matter atrophy in multiple sclerosis
J Neurol Neurosurg Psychiatry 2009; 80: 620 -625.

2.Serafani B, Rosicarelli B, Franciotta D, et al.
Dysregulated Epstein-Barr virus infection in the multiple sclerosis brain.
J Exp Med 2007; 204:2899-2912.

3. Zamboni P, Galeotti P, Menegatti E, Malagoni AM, Tacconi G, et al.
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
J Neurol Neurosurg Psychiatry 2009: 80: 392-398.

4. Jones K, Rivera C, Sgadari C, Franklin J, Max EE, et al.
Infection of human endothelial cells with Epstein-Barr virus.
J Exp Med. 1995; 182: 1213-1221.

5. Mashav N, Saar N, Chundadze T, Steinvil.
Epstein-Barr virus associated thromboembolism: A case report and review of the literature.
Thromb Res. 2008; 122: 570-571.

No conflict of interest.

Steven R Brenner, Neurologist
St. Louis VA Medical Center and Dept Neurology and Psychiatry at St. Louis University

Source: J Neurol Neurosurg Psychiatry © 2009 by the BMJ Publishing Group Ltd


The pathology this seems to be describing is EBV -> MS, and also EBV ->CCSVI. I think that that is what I originally thought might happen, and it yet might prove to be, but I have seen some fairly convincing arguments that VMs are congenital, in this as well as other conditions. The argument that both cause aspects of MS, is appealing to me.


Oh, I shouldn't have written 'yes it does' (looks like I'm saying 'yes it does explain..') I should have said 'yes it is' - as in 'yes, mono is a by product of EBV..

I would have thought it most likely that venous malformations are congenital too but what do I know?
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Postby jimmylegs » Mon Aug 09, 2010 8:34 am

for myself, i'm still trying to figure out how congenital venous issues could be responsible for all the documented nutritional imbalances in ms patients. it's really beyond me so far.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
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Postby CCSVIhusband » Mon Aug 09, 2010 9:03 am

95% of Americans have Epstein Barr Virus ... I have gotten cold sores all my life.

REALLY REALLY BAD cold sores.

In my nose. On my lips, and I'm not talking like a sore in the corner of your lip, I'm talking like a blister that covers 1/2 of your lip. I get them SEVERAL times a year.

I don't have MS ...

So ... EBV isn't causing MS (ALONE) unless something else is happening too ... think venous malformations.

I'm not even sure the EBV is really related to MS ... not necessarily ... it COULD be don't get me wrong ... but who knows.

All I know is 95% of Americans don't have CCSVI ... it seems likely somewhere UPWARDS of 62% of MS patients do. And that's something you can't ignore.
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Postby cheerleader » Mon Aug 09, 2010 9:34 am

jimmylegs wrote:for myself, i'm still trying to figure out how congenital venous issues could be responsible for all the documented nutritional imbalances in ms patients. it's really beyond me so far.


Jimmy--
this is a good point...but might it be that most people living in industrialized nations have these nutritional imbalances, but they just aren't tested? I've had some blood work done, and had seriously low vit D, low B and low iron, but do not have MS. Many people with chronic diseases (diabetes, RA, asthma, thyroid disorders) are shown to have low D, low B, low zinc, etc.

In doing the endothelial research, I read lots about how all of the diseases we call autoimmune are linked by these deficiencies--which disturb nitric oxide and create endothelial dysfunction. I think this is why living in industrialized society (where we no longer get enough sun, or natural antioxidants, or eat whole, unprocessed foods or move enough) is contributing to unprecedented autoimmune disease around the globe. For each disease, the congenital ignitor (veins, joints, pancreas, heart and lungs) is compounded by environmental issues.
maybe?
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 9:34 am

you could perhaps try selenium and zinc and vit A for those sores, hus. somebody recently told me that they stopped getting cold sores after starting a supplement but i can't remember the details.. i used to get cold sores but i haven't in years since developing a regimen.
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 jimmylegs » Mon Aug 09, 2010 9:59 am

hi cheer

the way i have thought about disease in general is that people have a genetic profile that might not show disease when fitness and nutrition are optimal. when the fitness, nutrition, or both are compromised by some means, the genetic issues have an opportunity to present themselves.

so maybe people can have asymptomatic congenital CCSVI and so long as they look after themselves it won't manifest into anything worse.

maybe in some cases it's a worse congenital condition and no amount of prevention will ensure health in the long term.

maybe in some cases CCSVI is not congenital but can be developed, similar to other types of venous insufficiency.

i think you know i have pretty serious concerns re my own diagnosis.

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

i will probably get tested for CCSVI at some point, more out of curiosity than because i actually feel sick and in need of a surgical solution if one's available.

i have had so much personal success reversing symptoms with nutrients, the basic building blocks of the body (which in my case were sadly eroded at the point of my dx) that in my case it almost doesn't matter to me, at this stage of my life, if i do have CCSVI. if i was having relapses i would probably reconsider.
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 CCSVIhusband » Mon Aug 09, 2010 10:09 am

Jimmylegs,

L - "Lysine" is an amino acid I take ... much like the interferons, I don't know if it actually works, but people with cold sores are told it does and what does it hurt me to have another amino acid in me ... so I take it. It does seem to work (could be placebo though), and I'd recommend it to anyone who gets cold sores, because like I said - it doesn't hurt anything.


I used to get the sores very very bad as a kid (probably 1 a month - even more in the winter, or when I got sunburnt in the summer, when your lips are more likely to crack).

I don't get them nearly as much anymore ... probably one every two years it seems ...

I'm not sure if that's because of the Lysine, or because my body has built up a tolerance for the EBV ...

Everyone in my family gets cold sores, but I'm the only one that gets them like I used to.

I stay away from them (my family) when anyone has one anymore, because if I'm near them I know within a week I'll have one. They are transported through contact but I've read studies that people susceptible to them can catch them through the air.
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Postby L » Mon Aug 09, 2010 10:10 am

jimmylegs wrote:for myself, i'm still trying to figure out how congenital venous issues could be responsible for all the documented nutritional imbalances in ms patients. it's really beyond me so far.


I hadn't thought of that, although an MS patient's mother's D3 deficiency had come to mind.

It would be helpful to know if these deficiencies were present in MS patients before disease onset. Perhaps the body uses up certain things in its response to the illness? Perhaps inflammation and glial scar production place certain requirements on the body. Maybe that can't make sense because, in that case, these deficiencies would be helpful perhaps.

Very interesting. I'll think it over. Not that I'll come up with anything but I'll think it over all the same.

Data for the vitamin D3 status of healthy people with stenosed veins taken from before they were born would be handy! Or at least their date and country of birth.

-edit- I think that cheerleader's probably right. I think we are probably all likely to be nutritionally deficient..
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Postby jimmylegs » Mon Aug 09, 2010 10:20 am

hus, interestingly l-lysine helps the body utilize zinc. still depends on having adequate zinc intake though.
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 jimmylegs » Mon Aug 09, 2010 10:22 am

L, see my reply to cheer, see if any of that makes sense?
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 10:48 am

jimmylegs wrote:hi cheer

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

i will probably get tested for CCSVI at some point, more out of curiosity than because i actually feel sick and in need of a surgical solution if one's available.

i have had so much personal success reversing symptoms with nutrients, the basic building blocks of the body (which in my case were sadly eroded at the point of my dx) that in my case it almost doesn't matter to me, at this stage of my life, if i do have CCSVI. if i was having relapses i would probably reconsider.


jimmy-agree completely. I've had this discussion with Dr. George Jelinek--he remains convinced that MS can be overcome with nutrition and lifestyle...he works with many patients like you. For people who aren't familiar with his work, go to:
http://www.overcomingmultiplesclerosis.org/

I've told him that I believe many people can remain stable this way, but for some, the venous malformation is too severe. Jeff was doing the Swank Diet, on the Endothelial Health program, exercising like crazy, and could not stay awake for more than 3-4 hours at a time. Both of his jugulars were seriously gone (95% and 80% closed) It was the angio that woke him up--and he remains great--even though only his right jugular is 100% open) Dr. Dake believes it was venous insufficiency that created a low O2 situation in his brain...and diet and exercise obviously couldn't completely address it.

I have a hunch people like you have one good jugular...which allows for adequate (not perfect) drainage. It's your lifestyle which is "overcoming" the venous situation. This is a hunch, not fact.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Mon Aug 09, 2010 10:53 am

jimmylegs wrote:for myself, i'm still trying to figure out how congenital venous issues could be responsible for all the documented nutritional imbalances in ms patients. it's really beyond me so far.

Maybe it's because fatigue makes it hard to cook healthy food? And convenience food is nutritionally empty....

Elderly people have nutritional deficiencies too. It's not just the effort of cooking, it's the grocery store shopping too, even remembering if you ate or not.
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Postby sbr487 » Mon Aug 09, 2010 11:15 am

I personally would like to believe that the veins stop developing beyond a certain point. The growth at a micro level is nothing but ability of the cells to divide. The growth in healthy individuals too stops at some point but happens early in MS patients due to some genetic defects (which tries to say - dont divide beyond this). This probably creates imbalance in terms of blood the body needs and the inefficient veins can provide. This maybe the reason why we dont see MS developing in kids.

This, of course, is from a laymen's point of view. And still does not explain
- if this is a genetic defect, why narrowing only at specific points?
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Postby jimmylegs » Mon Aug 09, 2010 12:13 pm

cece, it may certainly be the case that some patients have imbalances due to fatigue.

in my case, for 15 years prior to dx i was not eating properly. for a number of reasons that were convincing at the time, i was on a consciously chosen vegan diet - not biologically appropriate.

i was stubborn about not wanting to take supplements. i was determined to be healthy with vegan diet alone. i got all my information from pro-vegan web sites, not medical journals. i knew about some of the main nutrient issues for vegans. i was careful to eat nutritious vegetable foods and not junk. but i did not take care to eat the right quantities of the right foods.

what really made the wheels come off for me was when i decided to not buy packaged (read, processed) foods at all. that was when i lost the nutritional advantage of the supplements built into things like soymilk and veggie dogs etc.

that was when i started to experience numbness and weakness. i could reverse it if i got to the point of my leg giving way under me, by taking b12 pills. i was getting regular b12 tests, but i wanted the results to be okay so instead of doing a washout period like you're supposed to, i would take b12 pills before my bloodwork. results always came back low normal.

i got curious about the difference between when i supplemented and when i didn't, and did a clean test. they could not detect any b12 in my blood and the result came back 'less than 75', that being the lowest level detectable using that particular assay.

my dx spinal mri shows a lesion pattern that is textbook b12 deficiency. they tested me for deficiency at the MS clinic and my level came back at 300 - i had been supplementing like mad out of fear (and it wasn't working, by this time i had so many concurrent deficiencies that fixing one wasn't going to make a dent).

they asked me to do a washout for a clean test and i said no, because i was terrified.

i imagine they asked my doc to confirm a history of b12 deficiency and she looked back over my past test graph and told them no, it's been low but fine (from me supplementing ahead of the tests, and also because her computer can't plot text to show the one real result on my file - 'less than 75')

AFAIC, a computer glitch and my own doc not realizing i had fudged all those early b12 results, landed me with an MS dx.

the neuros told me that not all of my dx signs were consistent with b12 deficiency so i must have MS. they said my veganism would have had nothing to do with it. they certainly never wondered whether any of my other signs could be due to concurrent other deficiencies.

i objected to being lumped into a statistical diagnostic tool when i was so far from average joe it's not even funny.

no doctor ever sent me for a batch of nutrient tests to see if my other symptoms could be related to my long term vegan diet. that was all work that i had to do on my own. i'm so happy that my doc works with me now and writes up the reqs for me.

i am so. much. better. than at dx, that night and day don't even come close to describing it.

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.
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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