This Is MS Multiple Sclerosis Knowledge & Support Community

I'm trying to understand one thing. MS is linked to immune system cells that are activated to remove the deposited iron deposits in the brain because of CCSVI. Once we restore a normal venous outflow, how do we "turn off" the cells of the immune system?

It might settle on its own. It might continue, especially if an autoimmune response has been triggered by years of exposure to the myelin. It might be that the blood brain barrier will strengthen once the shear stress is improved and that this will keep leukocytes from crossing over.

The immune cells are activated not just to remove iron, but to remove dead/dying cells that have been injured by the iron, the build-up of toxins, the reduced oxygen, and the reduced glucose in a CCSVI-affected CNS environment.

First we have the condition of CCSVI, which does its own harm, then we have how the immune system reacts to the condition of CCSVI. There are variables in there. It's even possible that the improved blood flow will bring more leukocytes to the area, resulting in an MS exacerbation. There is a very small but concerning minority of patients who worsen immediately after a CCSVI procedure.

The best hope is that the immune system was acting appropriately to the dead/dying cells of the brain. Thus, when blood flow is restored, and the brain stops with the dead/dying, the immune system will no longer be involved. This is how it works in ischemia and strokes. There is immune system involvement, but it does not continue once the ischemia is fixed.

Thank you, Cece. Very clear and comprehensive response.

I feel like I am somehow in the role of renegade. I must emphasize that this is my own opinion. This in no way means I have changed my mind about the counterproductive categorization that has resulted in the terms "RR, "SP", and "PP", or the misuse of the terminology or the people so categorized. But: in the different stages of the disease formerly known as "MS", there may be different levels of immune system activity.

It is to be expected that CCSVI brings with it autoimmunity. The condition is not one that the immune system can easily distinguish from the run of things that attack people. In fact, one of the reasons the genetics are difficult to crack is that it is so often later in its onset (as it was in my case). It is not often the cause of death during the reproductive time of life, so for the female, who is more often the victim, it has less effect on our common evolution. The immune system has not evolved a way to cope with it.

From that perspective, autoimmunity may be a late-onset phenomenon, though the conditions that bring it on may be inherited. Because males may get it, and will sometimes reproduce throughout life, the statistics are murky. We are not all like black widow spiders.

I think the later phase (formerly called "SPMS") has less autoimmunity, therefore attacks seem to stop. In my experience, both in this phase, and when the immune system has been modified by interferons, inflammation has not gone away, but it is less acute, and more continuous background activity. The frequent use of painkillers perhaps does even more, when trying to cope with flu-like symptoms, to reduce inflammation. Maybe it helps confuse the immune system.

Perhaps after the body has done all the adapting it can do, there is a period when it stabilizes, and damage becomes more slow and continuous. For some this time comes earlier, and some never get there.

The bottom line is that if you have had the procedure before autoimmunity has had its way with you, you may be able to avoid some of the disability that would otherwise be inevitable. That is one of the questions that further experience may answer, without having to resort to randomization. Otherwise, you may be at the mercy of further developments with remedial things like chelation.

Hello masci,
Sorry I missed your post, my thoughts are:
- Ensure that your vit D3 levels are high (thread on this)
- Take immune regulating drugs if your neuro offers you any or keep taking them.
Kind regards,
MarkW

I'm trying to understand one thing. MS is linked to immune system cells that are activated to remove the deposited iron deposits in the brain because of CCSVI. Once we restore a normal venous outflow, how do we "turn off" the cells of the immune system?

Dear Masci,

You are asking the $ 1 mil. question for which, fortunately, there is an answer that is scientifically and experimentally proven beyond any possible doubt: HSCT (Hematopoietic Stem Cell Transplantation). HSCT is a procedure by which the immune system is rebooted and rendered 'immune naive'.

As to why the immune system goes banana's and reaps havoc to the nervous system is a question for which there as many answers as the number of MS researchers you may speak to. Viruses, faulty genes, stress, vit. D defficiency, a combination of all, etc.

Whatever the trigger may be, at this point CCSVI and iron deposition remain an unproven theory and speculation, yet to be confirmed or refuted in carefully designed scientific research and trial. As tempting as it may seem, as things stand, there is no basis what so ever to speak of CCSVI and iron deposition as a matter of fact.

adaptivemind wrote:

I'm trying to understand one thing. MS is linked to immune system cells that are activated to remove the deposited iron deposits in the brain because of CCSVI. Once we restore a normal venous outflow, how do we "turn off" the cells of the immune system?

Dear Masci,

You are asking the $ 1 mil. question for which, fortunately, there is an answer that is scientifically and experimentally proven beyond any possible doubt: HSCT (Hematopoietic Stem Cell Transplantation). HSCT is a procedure by which the immune system is rebooted and rendered 'immune naive'.

As to why the immune system goes banana's and reaps havoc to the nervous system is a question for which there as many answers as the number of MS researchers you may speak to. Viruses, faulty genes, stress, vit. D defficiency, a combination of all, etc.

Whatever the trigger may be, at this point CCSVI and iron deposition remain an unproven theory and speculation, yet to be confirmed or refuted in carefully designed scientific research and trial. As tempting as it may seem, as things stand, there is no basis what so ever to speak of CCSVI and iron deposition as a matter of fact.

Welcome to the forum adaptivemind.

I think we can assume that the question was posed within the confines of CCSVI theory . I am emboldened in stating this based on the fact that the question was posted in a CCSVI forum.

But to address HSCT v. liberation, the published results that we have thus far (albeit limited) have demonstrated that liberation treatment is vastly superior to HSCT in producing a beneficial result to MS patients. Further, based on the mammoth supportive anecdotal evidence, treatment trials will likely confirm this beyond all reasonable doubt.

I the meantime, it would seem to me to be both dangerous and ill-advised to tamper with the body's immune system without some understanding as to why it is acting the way that it is. To use an example, say you are presented with a patient with a chronically swollen thumb.

Dr. Freedmon would approach the problem by telescoping in at what the cell's are doing which are causing the thumb's inflammation and devising a treatment that disables the body's inflammatory response. Such a treatment might indeed provide some limited benefit. But at what cost? The body has an inflammatory response for a reason.

Dr. Zamboni would look at the bigger picture and suggest that the patient’s thumb is swollen because the patient is striking it with a hammer. Thus, he would devise a treatment aimed at preventing hammer strikes to great effect.

Who is the better doctor?

Before turning off the immune system, we should make sure that it is active, indeed. Is it? Do lymphocytes cross the BBB to damage poor myelin?

I really doubt and science does so (Hendersson, Prineas, Behan, Chaudhury, Berger etc...). There is no evidence for autoimmunity in MS, except some kind of neurologist (Note: neurologist, not immunologist!) stating that MS is autoimmune, without being able to prove it.

try eating maggots or worms. thats next on my agenda. Turning off the immune attack is the zillion dollar question. Sure as hell wish i knew...

fyi vit d3 is one of the various 'brakes' on the immune system... also a good solid anti-inflammatory diet helps...
www.nutritiondata.com provides inflammation ratings on a wide variety of foods, awesome resource!

a little bit about the thymus gland and the immune system:

"The Thymus gland is situated under the breastbone at the top of the chest, just below the Thyroid Gland. It is the major gland of our immune system, responsible for many functions, including the production of T Lymphocytes – a type of white blood cell responsible for cell mediated immunity rather than antibody controlled immunity...

"There are many nutrients that are important in the production, secretion and function of thymic hormones. Deficiencies of any one of these nutrients can result in decreased thymic hormone function and impaired immune function. Zinc is particularly effective in restoring depressed immunity and low levels of zinc usually cause a lack of sense of smell and taste. Vitamin B6 and vitamin C are also critical nutrients and because they are water soluble and not stored in the body it is vital to maintain a sufficient daily intake..."

zinc also helps you absorb and retain D3 better, that is if you were, like most MS patients, low in zinc to start with!

"liberation treatment is vastly superior to HSCT in producing a beneficial result to MS patients"

I assume that this is a joke?

Step away from the CCSVI Cool-Aid, and do not drink it anymore. Normal cognitive function will resume after it leaves your system.

Have you even read the figures for HSCT?

Vikingquest wrote:"liberation treatment is vastly superior to HSCT in producing a beneficial result to MS patients"

I assume that this is a joke?

Step away from the CCSVI Cool-Aid, and do not drink it anymore. Normal cognitive function will resume after it leaves your system.

Have you even read the figures for HSCT?

I have. They tell me that in one of the earlier studies 40% of the participants died. That's no laughing matter. While some might characterize this as reckless disregard for the lives of MS patients, perhaps others might characterize it as commitment to the autoimmune model of MS. Though researchers have since vastly improved their fatality rates, radical chemotherapy nevertheless represents a rather extreme form of treatment.

The results seem to me to be mixed. In any case, there have been no large scale randomized treatment trials. In that respect, it's no further ahead than angioplasty. The latest I can find is from 2009 in this study

Between January, 2003, and February, 2005, 21 patients were treated. Engraftment of white blood cells and platelets was on median day 9 (range day 8–11) and patients were discharged from hospital on mean day 11 (range day 8–13). One patient had diarrhoea due to Clostridium difficile and two patients had dermatomal zoster. Two of the 17 patients receiving alemtuzumab developed late immune thrombocytopenic purpura that remitted with standard therapy. 17 of 21 patients (81%) improved by at least 1 point on the Kurtzke expanded disability status scale (EDSS), and five patients (24%) relapsed but achieved remission after further immunosuppression. After a mean of 37 months (range 24–48 months), all patients were free from progression (no deterioration in EDSS score), and 16 were free of relapses. Significant improvements were noted in neurological disability, as determined by EDSS score (p<0·0001), neurological rating scale score (p=0·0001), paced auditory serial addition test (p=0·014), 25-foot walk (p<0·0001), and quality of life, as measured with the short form-36 (SF-36) questionnaire (p<0·0001).

This can be stacked up against Zamboni's results:

Outpatient endovascular treatment of CCSVI was feasible, with a minor and negligible complication rate. Postoperative venous pressure was significantly lower in the IJVs and AZY (P < .001). The risk of restenosis was higher in the IJVs compared with the AZY (patency rate: IJV, 53%; AZY, 96%; odds ratio, 16; 95% confidence interval, 3.5-72.5; P < .0001). CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% postoperatively (P < .001) and of MR Gad+ lesions from 50% to 12% (P < .0001). The Multiple Sclerosis Functional Composite at 1 year improved significantly in RR patients (P < .008) but not in PP or SP. Physical QOL improved significantly in RR (P < .01) and in PP patients (P < .03), with a positive trend in SP (P < .08). Mental QOL showed significant improvement in RR (P < .003) and in PP (P < .01), but not in SP.

Don't get me wrong. I admire and respect patients who have braved HSCT. They are heroes in my books. And, indeed, HSCT has produced some initial impressive results. I happen to think that an autoimmune defect might be part of the bigger picture along with impaired blood flow.

But Zamboni's results are equally impressive using a relatively simple procedure with a low complication rate. No way would I consider playing Russian Roulette with my immune system with HSCT. Meanwhile, liberation treatment has brought me amazing results in my decades long heretofore losing battle against MS.

So yeah ....pass me some more of that Kool Aide Dr. Zamboni.

Jagular, with all due respect, you are confusing the 'facts'. So here they are: 1. HSCT fatality rate is currently 0.84%, period, full stop, 2. HSCT cure rate as defined by ZERO disease progression post procedure (there already are patients who show no disease return up to 10 years post HSCT) is well above 80% (depending on whether RE or SP). And one last point, HSCT is in phase III of a large scale randomized trial
So back to the original question, "how to turn off an Immune system?" As things stand now, I would not pin my hopes on "liberations and/or worms". But then again, in the final anqlysis we are all free to decide what we choose to believe.

masci wrote:I'm trying to understand one thing. MS is linked to immune system cells that are activated to remove the deposited iron deposits in the brain because of CCSVI. Once we restore a normal venous outflow, how do we "turn off" the cells of the immune system?

The iron exporter is called ferroportin. This is an iron metabolism function, which is closely tied into the immune system. Just musing, but if ferroportin is messed up, maybe we get the iron in OK, but can't get it out. Some studies have found the ferroportin gene in PWMS is messed up.
Just going out, but I'll try and find some of those studies and post later. Cheers........

adaptivemind wrote:Jagular, with all due respect, you are confusing the 'facts'. So here they are: 1. HSCT fatality rate is currently 0.84%, period, full stop, 2. HSCT cure rate as defined by ZERO disease progression post procedure (there already are patients who show no disease return up to 10 years post HSCT) is well above 80% (depending on whether RE or SP). And one last point, HSCT is in phase III of a large scale randomized trial
So back to the original question, "how to turn off an Immune system?" As things stand now, I would not pin my hopes on "liberations and/or worms". But then again, in the final anqlysis we are all free to decide what we choose to believe.

Hey if you want to chemically ablate your immune system, be my guest. Now that the autoimmune myth has been mostly debunked, I wonder if it is even possible to obtain patient informed consent without disclosing that fact. Worms? Huh? Uhmm, you can take those too if you're into radical spooky therapy.

Progression stoppage is pretty good, but I prefer something that reverses disease process like liberation as it did in my case. The problem with HSCT (besides being dangerous) is that, unlike CCSVI therapy, it's aimed at symptoms rather than causes. I think it might be something patient's can try as a desperation measure if CCSVI therapy doesn't work.