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


Postby chrishasms » Fri May 01, 2009 8:38 am

Last edited by chrishasms on Sun Dec 06, 2009 1:30 pm, edited 1 time in total.
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Postby mrhodes40 » Tue May 05, 2009 7:56 am

Hi Chris,

This is an interesting question, but we are working from the idea there is no autoimmunity at all in this model: The immune system is responding to the damage caused by the breach of the BBB and is not acting in an autoimmune way.

If you have studied this model deeply then you understand how the body is acting to clean up damage. In the same way that your body reacts and responds to CVI in the leg, it responds to CCSVI in the brain.

From "the Big idea..."

Altered venous haemodynamics + 1,4–12 ? 17–19
Perivenous inflammation + 2,4,5,9,10 + 17–25
erythrocyte extra-vasation + 4–9 + 18–21,24
Haemosiderin deposits + 4–9 + 20,21
Adhesion molecules and white cells activation+ 10–12 + 26,27
Macrophage migration-infiltration + 4–6,12 + 26,27,30
T cell migration-infiltration + 12 + 26,27,30
Iron laden-macrophage + 4–6 + 20,21
MMPs hyper-activation + 4–7,15 + 30
TIMPs hypo-expression + 4–7,15 + 30
Local iron overload + 4–9 + 18,20,21,28
Urine haemosiderin test + 9 + Personal unpublished
HFE mutation + 5,6 + 29
Fibrin cuff (on going reparative process) + 2 + 20,21

the numbers are references to material that supports the assertion. this is not just something Dr Z is making up; it is well supported that these things are present in both MS and venous lesions.

All of those things have been considered "evidence" of autoimmune activation in MS. All of them are, as you see, present in venous ulcers of the leg--and no one thinks that is autoimmune at all.

There has never been proof of autoimmunity in MS, only this evidence that the immune system is present in the lesion area.

For a disease to be autoimmune by defnitiion it can't just be present in the tissue: it has to be targeting it and going there ON PURPOSE when the tissue is perfectly healthy to begin with.

This requires that there be evidence of some kind of activation in the immune system for an antigen in the brain, ie there has to be an antibody specific to MS that is specificaly targeted to a brain cell so that this antibody goes to the brain and attacks it on its own--when the brain is perfectly healthy.

The brain in this model is being damaged by the CCSVI, so the immune system has a legitimate reason to be there.

SOMETIMES when the immune system has a legitimate reason to be in a tissue it causes through epitope spreading automminity. AN example of that is strep throat becoming rheumatic fever and your joints and heart being attacked as an aftermath of strep.

the good thing about that is that it is TEMPORARY. No one needs any long term immune suppression for that, in about 6 months it is gone, although there can be huge damage to the heart valves in the attack that is permanent. EAE is temporary too. It also is self limiting.

But the million dollar question for you, considering your advocacy for revimmune, is whether or not you, or other people in the future if this model is shown, will need revimmune.

Considering that immune system reaction to brain injury can cause damagein excess of what the body has to begin with in the case of stroke, and that some MILD TEMPORARY immune suppression helps stroke in animal models there may be some strategies to give people steroids temporarily before they get their veins fixed.

maybe like this: you have some symptoms, they realize it is MS and therefore CCSVI, you are then given steroids or some mild immune moduating thing while you wait a week for your stent to reduce the inflammation and injury secondary to immune activity in the damaged area (caused by CCSVI and your immune system responding). Once the stent is in place the damage stops and there is no reaction by the immune system in the area at all.

My guess is that there will be no need for stronger suppressives like revimmune. If you took that, even though it is a temporary hit to the immune system, it is a significant drug with extensive consequences and it would probably make it harder to heal from the endovascular surgery.

all this is speculative of course there is an immense amount of research that will need to be done before all this is well understood and elucidated.

But the model and the idea is that MS is not autoimmune at all. An autoimmune disease by definition is a situation in which the immune system targets and attacks a perfectly healthy tissue.

If we all have CCSVI the tissue is damaged not healthy
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Postby mrhodes40 » Tue May 05, 2009 8:00 am

By the way, they know that a significant amount of the damage to venous ulcer tissue is from the inflammation also, but they do not use any immune suppression at all for that issue.

I have looked several times and can't find anyone trying it for venous ulcer...
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