How do we turn off the immune system activated?

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

Re: How do we turn off the immune system activated?

Postby Cece » Sat Nov 05, 2011 2:43 pm

I don't think this has to be an either/or situation. Get venoplasty to treat the slowed perfusion and hypertension/reflux issues from CCSVI. Get HSCT to reboot the immune system. If CCSVI is a promoter of autoimmunity, then it would be one risk factor removed from the possibility of autoimmunity recurring after the HSCT.

I think there may well be an autoimmunity component in some people's MS. I think this because of the genetic association with immunity genes. I think CCSVI sets the stage for this to occur, because of the effect it has on the blood brain barrier with an increase in adhesion molecules that bring more leukocytes over into the brain where they get a taste for the dead/dying glucose-deprived, toxin-damaged, hypoxic nerve cells of CCSVI in MS. Fixing the CCSVI blockages might not turn this off, once it's started. There is still a role for HCST and DMDs. There is also a role for testing for CCSVI and treating early in life, before any autoimmunity can be acquired and before CNS damage. And I also think there may be pwMS who have CCSVI but not autoimmunity.

More research on HSCT, more research on CCSVI, more research on combined stem cell/CCSVI treatment.
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Re: How do we turn off the immune system activated?

Postby Jugular » Sat Nov 05, 2011 3:33 pm

Of course that makes sense Cece, which is why it will have no impact on addledmind, I mean adaptivemind. This is just some neuro who subscribed to our forum in order to take anonymous potshots at CCSVI. You would think there would be room in these people's MS sandbox for others, but so far they're not sharing. You'd think they would be inspired to look at MS in a synergistic way rather than getting all bent out of shape because someone else stole their thunder.
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Re: How do we turn off the immune system activated?

Postby Cece » Sat Nov 05, 2011 3:40 pm

I didn't like seeing one alternative treatment set up against another alternative treatment, because frankly we need what alternatives we can get.

I believe CCSVI will be standard treatment, not alternative treatment, in a short number of years, but that's a belief based on my understanding of what the doctors are seeing. Time and research will tell.

I liked your arguments, Jugular. I too have had great results from CCSVI treatment. I'm not at a stage with my MS that HBST starts sounding like a good idea, but I know there are those who are, and I hope everyone finds something that works for them, and that the researchers find something that works for everyone.
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Re: How do we turn off the immune system activated?

Postby Vikingquest » Sat Nov 05, 2011 5:38 pm

"Autoimmune theory is almost debunked"

Seriously, all credibility just went out of the window. MS has a substantial autoimmune component and that is a fact. CCSVI has a success rate which is all over the map, it is the most unreliable treatment out there. HSCT has an 80% success rate across the board with a 100% rate with RRMS, give or take a few percentage points, that's pretty spectacular. If ablating the immune system does this, then to claim that that ms isn't an autoimmune disease is just silly.
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Re: How do we turn off the immune system activated?

Postby Cece » Sat Nov 05, 2011 5:47 pm

MS has a substantial immune component. Ischemia (stroke) does as well, as the immune system cleans up after the vascular event. Immune does not mean autoimmune.

I don't know what the success rate of angioplasty for CCSVI is, and I am surprised if anyone does. The research is coming in. I know, for myself, it has been successful. Angioplasty in general is a tested, much-used, reliable treatment for obstructed blood flow.
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Postby Lyon » Sat Nov 05, 2011 6:08 pm

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Re: How do we turn off the immune system activated?

Postby Jugular » Sat Nov 05, 2011 6:37 pm

Lyon, it's frustrating to have traveled around the world and then trying to convince someone who still believes that the world is flat. Anyway, this guy is mocking your worm therapy. Are you going to stand for that?
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Re: How do we turn off the immune system activated?

Postby Vikingquest » Sat Nov 05, 2011 6:41 pm

Agree whole heartedly, Lyon.

Cece, I'm glad that you are better after your ccsvi treatment, and I wouldn't want to take anything away from that, but the fact is that if the ccsvi treatment has made some people actually worse, then how can you claim it as a potential cure?
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Postby Lyon » Sat Nov 05, 2011 7:02 pm

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Re: How do we turn off the immune system activated?

Postby Jugular » Sat Nov 05, 2011 7:24 pm

I get it. So what your saying is the enemy of your enemy is your friend? :)

To address VQ, that some people get worse is invariably tied to restenosis, which actually validates the underlying theory rather than contradicting it.
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Re: How do we turn off the immune system activated?

Postby Cece » Sat Nov 05, 2011 7:25 pm

Vikingquest wrote:Agree whole heartedly, Lyon.

Cece, I'm glad that you are better after your ccsvi treatment, and I wouldn't want to take anything away from that, but the fact is that if the ccsvi treatment has made some people actually worse, then how can you claim it as a potential cure?

We need real data....

Some people may get worse because of a failure of angioplasty. Either it reverts to how it was initially or, worse, it scars or clots and the patient has more serious outflow obstructions. This sort of risk, however, would fit into the overall picture once benefits/risks are known. All minimally invasive surgical procedures still carry risks, but they are done everyday despite those risks, because the risk/benefit ratio is considered to be acceptable. I am very interested in the improvement of angioplasty techniques to minimize complications. The procedure is not yet standardized, and that is not a good thing.

Some people may get worse because MS gets worse, and this was the course they were already on, and perhaps the stress of the procedure or the travel took a toll.

I don't think that improved cerebral blood flow is detrimental to one's health.

I also don't think I claimed CCSVI treatment as a potential cure? The 'c' word has a lot of connotations and emotional baggage of which it's good to steer clear. I would claim CCSVI treatment as an exciting new weapon in the arsenal, and that the paradigm shift of understanding CCSVI in MS is an opportunity for new pharmacological treatments as well. I don't consider myself cured. I am better, though.
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Re: How do we turn off the immune system activated?

Postby Lyon » Sat Nov 05, 2011 7:44 pm

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Re: How do we turn off the immune system activated?

Postby Jugular » Sun Nov 06, 2011 8:39 am

In any case, turning off or rebooting the body's immune system seems to me to be more chasing after a symptom rather than a cause. Perhaps bad old leukocytes work in conjunction with CCSVI to wreak the havoc that is MS. At this point I am more interested in potential remyelination therapy as we won't have a cure without it.
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Re: How do we turn off the immune system activated?

Postby KateCW » Sun Nov 06, 2011 9:00 am

I would just like to meet one person *in real life* that has actually had some improvement from CCSVI. Inread about it here but the improvements are vague and subjective and anyone that I know or have been able to talk to over the phone (about 12 people) are the same or worse.
n
I think the HSCT supports the autoimmune theory based on the documented stability of the patients who had the procedure. I would jump at the chance to travel to Ottowa and have HSCT treatment. Please don't discredit this forum by making sweeping statements about autoimmune theory being de-bunked and "proven"benefits of CCSVI. it does nothing for the CCSVI cause if people can't keep their facts straight. I can only imagine how confusing this must be for the newly diagnosed. We have a responsibility to stick to at least a version of the truth.
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Re: How do we turn off the immune system activated?

Postby Cece » Sun Nov 06, 2011 10:09 am

Jugular wrote:In any case, turning off or rebooting the body's immune system seems to me to be more chasing after a symptom rather than a cause. Perhaps bad old leukocytes work in conjunction with CCSVI to wreak the havoc that is MS. At this point I am more interested in potential remyelination therapy as we won't have a cure without it.

Agreed, mostly. Remyelination and/or plasticity may occur on its own for some pwMS, especially the RR MS types who have demonstrated plasticity in between episodes. But a double-whammy of stopping the damage (if CCSVI venoplasty can stop the damage) and then remyelinating is a beautiful idea.

There are people with failed CCSVI treatment or with too-small of veins, such as hypoplastic jugulars, that can't be made to carry enough flow. There are pwMS who will still have CCSVI despite the best efforts of their IRs. So I am interesting in pharmacological solutions such as Diamox (to relieve cerebral pressure) and anything to do with the blood-brain barrier or the sequellae of CCSVI. HBST might fit in that category. I expect though that CCSVI venoplasty will prove to be the front-line treatment.

I know I enjoyed the Dr. Sclafani's NY symposium patient day for the chance to meet everyone in person. I met people who were better and I met people who were the same. I do not think I met anyone who had successful venoplasty with their veins remaining open who was worse. Maybe Jason DaSilva, of the very moving 'When I Walk' documentary? Primary progressive must be different than relapsing-remitting or secondary progressive, and I don't think we have a solid CCSVI-based explanation for that, other than that PP might have a greater likelihood of hypoplastic lumbar veins.
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