This Is MS Multiple Sclerosis Community: Knowledge & Support

I've searched this site and others.

Over a year ago I heard alot about people having their Immune System Rebooted and it showing results in very early trials. People had chemotherapy to destroy their immune system and retransplanting their own immune stem cells into their bodies and thereby "resetting" their immune systems.

My question in does CCSVI and the above theory make any sense together?

Does one have to be wrong?

Most CCSVI proponents, including Zamboni believe that there is an immune system aspect to MS. From what I can gather, CCSVI may be the root cause of MS, but after years of iron buildup in the nervous system, the immune system goes haywire and starts attacking. The overexcited immune system may cause all kinds to things to happen like food sensitivities, etc. Rebooting the immune system would probably bring it back into some kind of balance, but my gut feeling is that CCSVI is the underlying cause.

Several people on this forum have had Revimmune treatments, which haven't helped them long term.

CCSVI is a mechanical issue with our veinous sysytem and it isn't going to be repaired thru chemotherapy.

According to dr. Zamboni, MS is a protective re-action of a perfectly healthy and normal immune system to the circumstances found. It is an immune system trying to protect the body with everything that it has learned in 700 million years of evolution. The commonly held believe that MS is caused by an overactive or pro-active immune system is wrong.
I assume that once the normal blood flow is restored and the conditions normalise, the immune system will quieten down. I do not believe that this needs any special therapies or rebooting.

We had one member who had Revimmune go to Stanford, where she had her malformed jugular veins treated for stenosis. This question is one which only time will answer.

Dr. Zamboni only saw immune activation after restenosis of the veins. If peoples' veins remained open and flowing, there was no longer any autoimmune reaction, as evidenced by MRI and lack of relapses. He has patients that are 3 years out from treatment. My husband is only 8 months out with no relapses or progression. These are early results in the MS time frame.

The over-arching question is, to me, what is responsible for the continued damage in MS? In progressive MS, the immune system is no longer creating the damage in the white matter, but there is still gray matter degradation and axonal death. And immune rebooting won't change that.

The proponents of revimmune and other new immune ablating treatments believe that the sooner the intervention and addressing the immune system, the more likely the possibility of preventing progression and axonal death. But this is unproven as well.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

It's an interesting question. In one of the long CCSVI discussion threads I believe there was some speculation that in addition to getting venous issues resolved, rebooting or at least dampening the immune system for awhile, might theoretically help healing, at least in some cases. Again, just speculation.

Personally I've always been of the opinion that the immune system is not the villain it's often made out to be in MS. I think it's probably doing exactly what it's supposed to do and trying to clean up whatever underlying problem is going on... damage resulting from poor blood flow, excess iron deposits, bacteria, virus, whatever. Maybe even different underlying problems for different subsets of MS patients?

I always wondered if high dose chemotherapy not only reset the immune system, but somehow resolved the underlying problem in those it was successful for. Maybe makes sense if the problem was a long standing bacterial infection for example. Not sure how that would fit with the CCSVI paradigm though.
As bestadmom pointed out, chemo was/is not successful for everyone.
Again; all just speculation, and very simplistic speculation at that.

But as long as I'm speculating...
If CCSVI is proven to be the underlying problem in MS, will fixing it be enough to "reset" the immune system and stop an established pattern of involvement? If so, theoretically progression should stop and our focus could then be on repair. Wouldn't that be amazing!
Or will there still need to be some kind of clean-up of existing damage and/or retraining of the immune system before it backs off?

I'm excited about CCSVI research, but it is very early, and there are lots of questions still to be answered.



FWIW
There is at least one TIMS member who has had both treatment with Revimmune and surgery to correct CCSVI. Check the first page of the CCSVI tracking project thread for a post by Jamie re: Melissa. Last I read Jamie wasn't planning on hanging out here as much as in the past since Mel was continuing to do well and they were getting on with their lives. Very good news! Hopefully he will still pop in occasionally to keep us updated.

In pure logic terms you weaken the CCSVI argument in saying that it is the cause of MS. This is because it is known that pwMS have some different groups of genes to the average person and genes are usually in control. MS is very complex so please don't try to explain it by CCSVI.
Let's stick to the story - CCSVI and MS have a strong correlation, let's test for CCSVI and treat it if present, cos CCSVI is not good for pwMS.
In 10 years we may know what is the first problem pwMS get from our genes. Then discover the factors which may cause MS to develop. Speculating on causes of MS is damaging to getting the CCSVI message over.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Mark only more research will tell if fixing the veins is a permanent fix or temp...Don't come on here pretending you know what the outcome in ten years is going to be. It is still very possible that CCSVI is the cause of MS and ofcorse CCSVI may be genetic. Please let time and research run their course.

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI

Hi Mark,
What genes have they found that are specific to MS patients?

I had heard that there is an issue with Vitamin D and its interaction with genes in MS patients but not about any specific genes.
(but there is so much I still don't know)

DRB1 1501 HLA seems to have a strong association with MS...but as to its affects in MS, jury's still out.

http://www3.interscience.wiley.com/jour ... 6/abstract

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

MarkW,

The OP asked how 2 different theories may or may not make sense together. Obviously we don't have definitive answers to his/her question, especially since neither has been widely embraced and/or studied on it's own merits, much less looked at in combination. I'm sure everyone understands that.

If your comments were directed toward me, I prefaced my personal musings with the disclaimer that it was my opinion only. I also clearly stated that much of what I posted was speculation and even said it may be weak speculation at that. I also ended by saying that CCSVI research is very new and many questions still need to be answered.

How all that translates to proclaiming CCSVI, or anything else for that matter, THE cause of MS and damaging the entire CCSVI message I certainly don't understand.

This is a discussion board, no?

lemme just toss this out there into the discussion...

Thanks to the self-reporting of MS patients around the world, we've seen venous cysts, congenital venous malformations, venous stenosis, short jugular veins, missing veins, postural issues, and a plethora of venous issues affecting drainage from the brain and the spine. Who's to say what's caused these venous issues...maybe in some it's genetic, maybe in some it was lack of maternal vitamin D, maybe in some it was EBV, maybe in some it is a collagen defect. The MAIN POINT is- that in every one of these patients with venous stenosis and reflux, diagnosed with CCSVI- all had MS. But does this mean that all people with venous stenosis will develop MS? If the controls at Jacobs are showing CCSVI, but no MS...there's obviously more to learn.

I know Dr. Zamboni doesn't come out and say "CCSVI is the cause of MS." And he is right not to. But the venous evidence is amassing.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

and we keep waiting for those dang numbers from Jacobs that we were told would be out in November!!!

.

CCSVI is there first, and in many cases perhaps already there from birth. It is only after many years of venous insufficiency (an insufficiency that may be aggravated when growing older as the vascular system becomes less flexible and the compensation via the other veins more difficult) that the immune system will kick in. Therefore, it is likely -in fact it is what you would expect- that people will be found with CCSVI (I guess mostly young people) that have not yet developed MS.