CCSVI/EBV

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

CCSVI/EBV

Postby Rokkit » Fri Jul 10, 2009 1:54 pm

My symptoms started 2.5 years ago, a couple of months after some lymph nodes swelled up in my neck. When the lymph nodes didn't go down, they were removed and biopsied, dx: Mono.

I know a lot of people say their MS was triggered by an infection like mono. (I've not been diagnosed with MS and have not yet seen an MS specialist, but my neuro suspects MS because of my symptoms and positive spinal tap. My MRI shows no MS lesions.)

The swollen nodes in my neck were deep cervical lymph nodes. Wikipedia says: "The deep cervical lymph nodes are a group of cervical lymph nodes found near the internal jugular vein."

I've contemplated various ways to connect the dots, so here's one idea: EBV lays dormant for years like it does in 90% of the population. A jugular stenosis (rare in the population) reaches critical mass causing CCSVI and enough reflux that the immune system is unable to continue controlling the EBV, and voila: Mono.

Swollen lymph nodes are of course a hallmark in mono, and in no way an indicator of CCSVI or MS. But I think those are much more superficial nodes. In my case the surgeon commented about how deep the nodes were. He left one of them which eventually went down after almost 2 years.

The location of the nodes makes me think jugular vein, somehow connected to CCSVI. As hard as I try to be succinct with these posts, they end up seeming way too long. Sorry.

Any thoughts or ideas appreciated.

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Postby gibbledygook » Sat Jul 11, 2009 1:49 am

Hi Rokkit,

I have had swollen nymph nodes for years and years and am also curious as to whether the jugular problems are related as they do sit very close together. I can tell from the pain from the stents!!!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Sat Jul 11, 2009 4:19 pm

. A jugular stenosis (rare in the population) reaches critical mass causing CCSVI and enough reflux that the immune system is unable to continue controlling the EBV, and voila: Mono.


I don't understand how stenosis would harm the immune system and cause EBV to go out of control? :?

However
The location of the nodes makes me think jugular vein, somehow connected to CCSVI
:idea:

that makes a lot of sense especially when you mention having a swollen node for 2 years!!!! 8O Did your MS start right after that ?
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Postby Rokkit » Sat Jul 11, 2009 4:45 pm

I don't understand how stenosis would harm the immune system and cause EBV to go out of control?


I was thinking reflux could hamper the immune system and let infection develop in the area, hence the lymph nodes.

Did your MS start right after that ?


My initial leg tingling started within a month or two of the nodes swelling.

Basically, I had a very healthy 43 years, then swollen nodes and then a tingling leg. I'm convinced they're related. The doc said lymph nodes swell for a year or two all the time, no one knows why, doesn't mean anything. Maybe, but since my nodes were very near the jugular I'm thinking there could be some kind of connection to CCSVI. Given the EBV/MS connection in the research, I'm wondering if my case could be a clue, just don't know how to connect the dots.

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Postby mrhodes40 » Sat Jul 11, 2009 6:10 pm

Rokkit I think you may have something there. It does not seem good to block the jugs with a lymph node either!! If you saw the new links t the bottom of the research sticky that show Gibbledegook's MRV's and show the jugular stenosis she had---much like mine by the way-- it is clear that if a lymph node did it that would be no better than other tissue blocking the vein. Your story really adds to the over all idea in my mind. But caution that it takes years for stenosis to add up to lesions in legs....so there is probably something mre there that just lymph nodes.

But the immune system is not in the head; it is everywhere I can think of no reason to think that venous stenosis would hamper immunity at all. :?
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Postby Sharon » Sat Jul 11, 2009 6:56 pm

About thirty five years ago I had a very bad tooth infection - lower left wisdom tooth. I was in the mountains, and by the time I was able to get back in town to see a dentist, I probably had taken an overdose of ibuproven for the pain. The tooth was removed and within a month I had what I now think were my first MS symptoms - loss of balance and hearing loss.

My thought is that maybe I had the left jugular blockage at that time. The facial veins on the left side would have also been blocked since they drain into the left jugular. I also had swollen lymph nodes in my neck area. I am thinking that some of that infection drained into the venous blood which was refluxing into the brain. The infection could have crossed the BBB. My immune system was already on overdrive because of the infection ----

Maybe something similar for EBV

Just random thoughts :roll:
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Postby mrhodes40 » Sat Jul 11, 2009 7:31 pm

Interesting. I am not sure the total story is in on the germs angle. Certainly in the legs germs get into the wound but then again that is aerobic-exposed to air where the brain is not. The abx I took for 3+ years helped me.

Obviously some TIMS members have had good results with abx, others had only partial results as I did or not results at all with regards to stopping progression.

It seems to me that once you have an area like that with poor circulation it is going to be more vulnerable to bugs setting up house than it would be in healthy tissue... So I can believe your idea Sharon.
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby thisisalex » Sat Dec 19, 2009 7:16 am

i did some research on the possible connection between CCSVI and EBV (Epstein-Barr virus) and i have found an interesting article written by dr. Brenner.
(sorry if this is a repost, i searched TIMS for this, but no success)
here it goes:

Epstein-Barr virus may cause Multiple Sclerosis through involvement of the venous system.

* Steven R Brenner, Neurologist
* None

St. Louis VA Medical Center and Dept Neurology and Psychiatry at St. Louis University

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.


original source: http://jnnp.bmj.com/content/80/6/620/reply
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Postby jay123 » Sat Dec 19, 2009 8:43 am

Excellent research, thanks for finding that one! It's so interesting that everything is getting tied together.
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Postby ozarkcanoer » Sat Dec 19, 2009 9:12 am

This is good. Dr Brenner also responded favorably to Dr Zamboni's original 2008 paper with an E-letter. And he is right here in St Louis although he is not my neurologist.

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Postby Rokkit » Sat Dec 19, 2009 9:26 am

Wow, really excellent find, thisisalex. It's my hope that if Zamboni's CCSVI is validated by Buffalo, the light bulbs will really start to go off for researchers around the world who have a piece of the puzzle and just don't know it yet.
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Postby cheerleader » Sat Dec 19, 2009 9:40 am

Zamboni and his team are currently studying several "endothelial disrupters" and their affect on CCSVI. EBV was on the list he presented in Bologna, as well as Cpn, low vitamin D, saturated fats, toxins, cigarette smoke.

As I learned from researching Jeff's endothelial health program, there are many external factors that can harm the endothelial layer of blood vessels, and cause further constriction and breakdown. It amuses/distresses me that so many studies have come out recently (EBV, cigarettes, obesity) in the mainstream MS world, and the docs haven't figured out the endothelial connection between all of these factors....Dr. Brenner did, and it's only a matter of time for the rest, I think-
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby 10yearsandstillkicken » Sat Dec 19, 2009 12:09 pm

I had mono (had a blood test) 20+ years ago and my throat almost closed. There was just enough room for water to get through and that was about it. It was like that for a week or more. I was sick for months. Are the jugs in that area?
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