Epstein Barr Virus, CCSVI, and MS so confusing...

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

Epstein Barr Virus, CCSVI, and MS so confusing...

Postby orion98665 » Tue Jul 20, 2010 1:35 am

Hi all, newbie to this forum and have a couple of questions. Wife was
just diagnosed with MS last month after having an episode of optical
neuritis that was stress induced. Anyhow, MRI revealed 15 to 20 lesions
on the brain including lesions on both optical nerves. Yesterday the MS
nurse came over to the house to show my wife and i how to properly
inject the CRAB drugs. Well, during this educational moment I mentioned
to here about CCSVI. She did not dispute it however she felt the disease
is more related to the Epstein Bar Virus.

I started to do some research on this virus because wife came down with
mononucleosis when she was a teenager. And what an eye opener!
http://www.webmd.com/multiple-sclerosis ... nked-to-ms http://www.mult-sclerosis.org/EpsteinBarrvirus.html Anyhow, what are your thoughts about this..????
Is CCSVI a cause or an affect of MS..??? I had a lot of faith in CCSVI and
still do but I'm beginning to think that CCSVI may not be the root cause of MS.

Bob
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Postby TMrox » Tue Jul 20, 2010 2:41 am

Epstein-Barr virus can also trigger Transverse Myelitis (a demyelination of the spinal cord only). I've got TM, but my condition was not caused by Epstein-Barr virus. I was tested for it along with dozens of other viruses known to trigger TM.

I had looots of tests and I only gave positive for CCSVI. I had an angioplasty in March 2010 and I feel much better.

I have much respect for nurses and neuros. But they are not vascular doctors and not many of them have actually read about CCSVI. If you are interested in reading more about CCSVI see:
http://www.fondazionehilarescere.org/eng/index.html

And here a video where Zamboni explains his research on CCSVI and the role of opportunisitic viruses.
http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

Here an article that summarises all the known theories (excluding CCSVI) linked to MS:
http://www.ncbi.nlm.nih.gov/pubmed/19932200
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Postby CCSVIhusband » Tue Jul 20, 2010 5:12 am

Epstein Barr (herpes virus) cannot be an "effect" of MS. It's a virus in and of itself.

Once you have EB virus, it's with you for life ...


However, 50% of kids are exposed to it by the age of 6 ... how come 50% of people aren't developing MS?

Often times Epstein-Barr is spread without the infected person even realizing they are infected as symptoms may not be apparent.

95% of MS patients have Epstein Barr --- BUT --- so do 95% of non-MS patients by the age of 40 ... so ... how come they don't have MS? Probably because of CCSVI or some other set of factors.

Though EB virus is the same virus as what causes mono, only 5% - 10% of people have mono ...



Let's be clear, having EB virus alone is NOT causing MS.

Having EB virus AND CCSVI could be causing MS.


Thanks for reminding everyone of that.
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Postby BooBear » Tue Jul 20, 2010 5:27 am

I had mono as a teenager, too. I tend to agree with CCSVIhusband- I believe CCSVI is the dominant player, perhaps with a combination of other factors that can ultimately determine the course and aggressiveness of MS.

Tell your wife to hang in there- you did the best thing you could do for her by coming onto this board and associating with this group. On this non-biased board, we share everything (sometimes a bit too much :P) with our fellow MSers in the interest of education and getting better. Good for you!
Three veins angioplastied.  One renewed life.  
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Postby ikulo » Tue Jul 20, 2010 6:22 am

EBV and CCSVI don't have to be mutually exclusive. In fact, it could be possible that EBV causes CCSVI, which then causes the multiple lesions seen on an MRI and symptoms we associate with MS.

Some viruses have been linked to cancer, but that doesn't mean that everyone who has that virus will get cancer - it merely increases your risk. For example, HPV has been linked to cervical cancer, but not every woman infected with HPV will get cervical cancer. Similarly, EBV has also been linked to cancer. These viruses change the genetic makeup of the individual, but it doesn't cause cancer outright. In the same vein, a virus (maybe EBV) could change the genetic makeup of the endothelial cells, causing a breakdown in the veins and leading to CCSVI in some people. We don't know yet.

Exciting to think how CCSVI changes the rule of the game for MS research.

btw - lyon posted a good article about viruses in the general forum. check it out!
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Postby aliyalex » Tue Jul 20, 2010 7:13 am

i personally believe EBV and other opportunistic infections depleted my immune system to develop vascular anomalies and other, which set the scene for MS to develop.

i have been treating infections for years and got stem cells to strengthen immune system. my hope is hat when i do get liberated, chance for restenosis is lessened.

i have an aggressive form, am non-ambulatory, and couldn't just wait. i want the best for us all. we were all just diagnosed once. researching options is important. we were so afraid in he beginning, it was easy to just comply and not do our own research.

obviously you are researching, b/c you are here. :)
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Postby Rokkit » Tue Jul 20, 2010 8:03 am

ikulo wrote:EBV and CCSVI don't have to be mutually exclusive. In fact, it could be possible that EBV causes CCSVI, which then causes the multiple lesions seen on an MRI and symptoms we associate with MS.

aliyalex wrote:i personally believe EBV and other opportunistic infections depleted my immune system to develop vascular anomalies and other, which set the scene for MS to develop.

Don't forget that vascular experts from 47 countries (the uni0n of Phlebology) have concluded that the malformations causing CCSVI are congenital.
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Postby aliyalex » Tue Jul 20, 2010 10:46 am

they should know, however, my ANS specialist added congenital, genetic, opportunistic infections and environmental toxins. i also think he should know. he is more progressive than most, IMHO.
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Postby orion98665 » Tue Jul 20, 2010 10:54 am

OK, thanks sooo much guys. I'm glad I discovered this site. I feel
its best to get information knowledgeable people who clearly have
indulged into this dam disease to find solutions. And another reason
why I donated to this forum it's unbiased and doesn't accept corporate
sponsorship. Anyhow, when wife was first diagnosed with MS I new
very little about it. But after here diagnoses I've been doing nothing
researching and trying to find out as much as I can about her disease.
Believe me I've been on this forum daily.

As I said here optical neuritis was triggered by stress. Mom diagnosed
with aggressive breast cancer followed by brother in-law taking his own
life. I guess things do come in threes. Anyhow, right now she doesn't have any symptoms other than a numb or tingling sensation around her lower back at hip area when bending her neck forward. She got an MRI
but has yet to get the results. What I find interesting is she has none
of the hallmark symptoms of MS which is Fatigue, or heat intolerance.
So I'm just curious. Is this or could this be a side affect of the CRAB drugs..?? I'm definitely going to get her tested for CCSVI but I'm a little
hesitant of getting her treated at this time. But yet, I don't want to wait
too long since she was just diagnosed with RRMS. Decisions, decisions!

Oh, one more thing. I found this link as it relates to CCSVI.
http://csvi-ms.net/en/content/media-coverage

I think your a great bunch of knowledgeable people with a wealth of
information willing to help out. Thanks so much!:wink:


Bob
Last edited by orion98665 on Sat Jul 24, 2010 1:29 am, edited 2 times in total.
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No inconsistency

Postby nicknewf » Tue Jul 20, 2010 11:00 am

There is no inconsistency here. The CCSVI researchers are saying that MS = CCSVI + time + something else. (I.e., if only I had normal veins, I wouldn't have been so susceptible to MS being a complication of my mononucleosis infection).

The something else could be some other trauma which aggravates the already diminished blood flow due to congenital venous malformations. Over time, the slow build of of iron is hypothesized to cause the problem. EB virus may be the something for some people, another stress or injury may cause it for others. Particularly malformed veins for others may not require additional stress (perhaps this explains children with MS).

The correlation between disease severity and vascular malformation severity and the correlation between symptoms and location of the malformations is also extremely convincing.
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Postby Cece » Tue Jul 20, 2010 11:04 am

orion98665 wrote:What I find interesting is she has none
of the hallmark symptoms of MS which is Fatigue, or heat intolerance.
So I'm just curious. Is this or could this be a side affect of the CRAB drugs..?? I'm definitely going to get her tested for CCSVI but I'm a little
hesitant of getting her treated at this time. But yet, I don't want to wait
too long since she was just diagnosed with RRMS. Decisions, decisions!

Fortunately with it newly diagnosed and it is RR and not PP, she has some time to make those decisions. Welcome to the forum. :)

For me the fatigue and heat intolerance of MS were present long before I started taking Copaxone. So for me, no, it is an effect of the MS, not a side effect of the lousy drugs we take to slow the MS.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby orion98665 » Tue Jul 20, 2010 1:29 pm

TMrox wrote:Epstein-Barr virus can also trigger Transverse Myelitis (a demyelination of the spinal cord only). I've got TM, but my condition was not caused by Epstein-Barr virus. I was tested for it along with dozens of other viruses known to trigger TM.

I had looots of tests and I only gave positive for CCSVI. I had an angioplasty in March 2010 and I feel much better.

I have much respect for nurses and neuros. But they are not vascular doctors and not many of them have actually read about CCSVI. If you are interested in reading more about CCSVI see:
http://www.fondazionehilarescere.org/eng/index.html

And here a video where Zamboni explains his research on CCSVI and the role of opportunisitic viruses.
http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

Here an article that summarises all the known theories (excluding CCSVI) linked to MS:
http://www.ncbi.nlm.nih.gov/pubmed/19932200

TMrox, Thanks for the links. :wink:
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