Too early to fire the electrician?

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

Too early to fire the electrician?

Postby Jugular » Mon Oct 25, 2010 1:30 am

I've been troubled lately about the research I have read on bone marrow transplants used in the treatment of MS. The idea, as I understand it, is to use chemical ablation to wipe out the body's immune system and regenerate it from purified cells taken from the same person. This has been described as an immune system "reboot".

Though risky and intensive, it's hard to argue with the results. This sort of research has been going on far longer that Liberation treatment trials and has collected some impressive data. Disease progression has been halted in most cases and disease reversal has been documented.These improvements seem fairly consistent and enduring.

http://www.sciencedaily.com/releases/20 ... 213441.htm

http://www.neurologyreviews.com/dec04/n ... arrow.html

http://www.vancouversun.com/health/rese ... story.html

Our anti-CCSVI media darling, Dr. Freedman, himself has been involved in a $6.4 mil study funded by the MS Society for the last ten years ($4 mil to start and $2.4 to continue)

http://www.medicalnewstoday.com/articles/77216.php

Is it any surprise that he, and those involved in similar research, should be so diametrically opposed to CCSVI? Patients who have braved the procedure are also less than enthusiastic about CCSVI.

http://themscure.blogspot.com/2010/06/ccsvi-hoax.html

In truth, the results are hard to reconcile with pure CCSVI theory. Such a treatment, because it does not address impaired drainage, should not produce any benefit. And any benefit it does produce ought to be short-lived as the brain is once again assaulted unabated with backed up blood.

So they both can't be right. And I am not about to sweep this research under the carpet or dismiss out of hand the experiences and results of those MS patients who have braved it - one, to his death.

So here you have an apparent contradiction that if left unresolved, disproves CCSVI theory. If BMT then not CCSVI.

Still, they don't seem much further ahead than we are,

Freedman said the treatment does not explain what exactly goes wrong with the immune system in MS, but it tests the idea that the error will not repeat itself if the immune system is replaced.


This reminds me of some of the weaknesses in CCSVI theory to account for why a supposed congenital defect takes so long to assert itself and, possibly, the presence of CCSVI in healthy controls.

Another similarity is both camps seem comfortable in having something that apparently works without being able to precisely explain how. The trickier question is how can they both work???

A potential answer presented itself when I discovered that persons undergoing bone marrow transplants have to be re-immunized for many diseases such as polio because the antibodies would no longer be present. Similarly, that ubiquitous kin to herpes, EBV - the love bug might also be affected. EBV has a strong association to MS.

http://www.mult-sclerosis.org/news/Apr2 ... Virus.html


The immune system reboot might rid the body of EPV antigens, whereas the antigens can be passed on from bone marrow donors.

http://onlinelibrary.wiley.com/doi/10.1 ... 5/abstract

Perhaps CCSVI provides the mechanism by which these antigens can harm tissue in the brain? Iron buildup? So that removing the antigens helps but so does fixing the venous flow by which these antigens are allowed to do their evil.

Does anyone have any thoughts on the conundrum presented by the contradictory successes of Liberation and Bone Marrow Transplant therapies?
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Postby sou » Mon Oct 25, 2010 3:47 am

Just like plasmapheresis does, somehow I feel that regenerating the bone marrow would alter many of the rheological properties of blood and would take care of any possible secondarily acquired sensitivity to neural tissue.

It would be interesting to measure changes in CNS atrophy and axonal density.

In my mind, there is no autoimmunity without an autoantigen. And I find no reasonable argument to aupport that we have to live with blocked veins our whole lives. If BM transplant helps and the benefits outweigh the risks, then why not?
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Motiak » Mon Oct 25, 2010 5:28 am

I think a lot of people would agree that CCSVI is just one factor of MS, not the only factor. I believe a mix of stem cell treatment/CCSVI will be the eventual cure for MS, but we'll see how it all pans out.
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Postby Lyon » Mon Oct 25, 2010 5:29 am

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Last edited by Lyon on Sun Nov 20, 2011 5:35 pm, edited 1 time in total.
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Postby Rokkit » Mon Oct 25, 2010 6:19 am

It seems if MS were any one thing, it would have been solved some time ago. One plausible scenario is that pwMS have a defective immune system which, if given the opportunity, will attack the CNS. It's theoretically possible that CCSVI is the thing that creates that opportunity in a very large percentage of pwMS.

What's baffling to me is why the neurological community isn't pursuing this possibility vigorously. Angioplasty/stenting is probably only variably effective at restoring the impaired venous system. But what if treating CCSVI could double or triple the efficacy of the CRABs? What a boon that would be. No need to fire the electrician then.

If all that worked out, you might not ever have to reboot the immune system except in rare cases where the CCSVI couldn't be addressed sufficiently or rare cases where CCSVI was not the immune system enabler in the first place.

You'd have some benefit from the CCSVI treatment itself and additional benefit (not had before) from the CRABs. You'd have happy patients and happy neurologists. I'm not putting this out there as a theory because I have zero background for that, I'm just wondering why the neurologists aren't exploring something that could unlock the power of their drugs.
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Postby sou » Mon Oct 25, 2010 7:00 am

Rokkit, what comes to my mind after reading your post is the Prineas, Barnet et al study, which found a secondary activation of the macrophages, induced by the presence of already degenerated myelin. Autoimmunity in MS is yet to be proven. There is no definite evidence so far.

If CCSVI caused MS and it were its only cause, it would still not have been found because it did not even exist as a syndrome 3 years ago.

Research is needed to come to conclusions, but rejecting theories without evidence can only harm. An open minded approach is the wisest, IMHO.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Jugular » Mon Oct 25, 2010 9:18 am

Rokkit wrote:It seems if MS were any one thing, it would have been solved some time ago. One plausible scenario is that pwMS have a defective immune system which, if given the opportunity, will attack the CNS. It's theoretically possible that CCSVI is the thing that creates that opportunity in a very large percentage of pwMS.

What's baffling to me is why the neurological community isn't pursuing this possibility vigorously. Angioplasty/stenting is probably only variably effective at restoring the impaired venous system. But what if treating CCSVI could double or triple the efficacy of the CRABs? What a boon that would be. No need to fire the electrician then.

If all that worked out, you might not ever have to reboot the immune system except in rare cases where the CCSVI couldn't be addressed sufficiently or rare cases where CCSVI was not the immune system enabler in the first place.

You'd have some benefit from the CCSVI treatment itself and additional benefit (not had before) from the CRABs. You'd have happy patients and happy neurologists. I'm not putting this out there as a theory because I have zero background for that, I'm just wondering why the neurologists aren't exploring something that could unlock the power of their drugs.
That’s an intriguing idea – that you might be able to boost the effectiveness of the CRAB drugs with liberation therapy.

I wonder how many of the liberati have continued with their autoimmune drug therapy and to what effect? Have they had better results than those without? Zamboni noted that some of his patients in his study were taking them, a practice that he did not discourage.

I wonder if any of the patients who have undergone the immune system reboot have also had liberation angioplasty? They should be in the best shape of all.

Apart from that, should those of us who have discontinued their “disease modifying drugs” consider redeploying them with liberation therapy as a way of triangulating on a cure?
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Postby 1eye » Mon Oct 25, 2010 7:05 pm

What disease modifying drugs? They won't prescribe them for the likes of me.

In my books, BMT and Liberation are not a zero-sum game. In another topic today I speculated that the point of passage of gadolinium into a lesion could be the main source of the whole trouble. The BBB consists of cells, and the cells, just like any others, can signal distress and attract an immune response. If there is both reflux and slow flow, NHE says ICAM-1 may be upregulated, building on the immune response. So immune cells may get left with lots of signals, but no pathogen to fight, just upset BBB cells that don't like reflux or low flow.

Rebooting the immune system makes it naive. Perhaps the initial immune response is 'learned' and making it naive makes it 'forget' how to respond to the BBB distress signals (caused by blood movements). But complete ablation seems a high price, and why not try to stop the reflux?

The stem cells can not directly fix venous malformations. The Liberation can not fix a confused immune system. Nothing will stop it from attacking if it thinks there is an intruder. We are only speculating that it is the distressed BBB cells that invoke the immune system without a clear target. Many things are unknown. If stuff works, don't discount it, nor should you ignore other facts.
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Postby David1949 » Wed Oct 27, 2010 10:04 pm

IMHO, CCSVI theory and auto-immune theory are not mutually exclusive.
Maybe MS results from a 2 step process .
Step1 - The BBB is compromised by CCSVI so that antibodies can cross it and reach brain tissue.
Step 2 The antibodies then mistakenly identify myelin as enemy and attack it. That's the autoimmune part.

Both of those must happen to get MS. If only step 1 happens then you don't get MS. That would explain why healthy people can have CCSVI and not get MS. On the other hand, if your antibodies are programed to attack myelin but the BBB is not compromised then the antibodies don't reach the myelin so you don't get MS that way either.

The good news is that stopping either step could stop MS. So CCSVI treatment could stop the BBB damage and prevent antibodies from reaching myelin. The BMT approach could reboot the immune system so the antibodies would no longer attack myelin, even if they reach it.

But I'm not a doctor so I could be totally out to lunch.
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Re: Too early to fire the electrician?

Postby CureIous » Thu Oct 28, 2010 9:22 pm

Lyon wrote:
Jugular wrote:I've been troubled lately about the research I have read on bone marrow transplants used in the treatment of MS. The idea, as I understand it, is to use chemical ablation to wipe out the body's immune system and regenerate it from purified cells taken from the same person. This has been described as an immune system "reboot".
It seems that even the bone marrow transplant isn't necessary when it comes to MS http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm and although a few cases don't constitute conclusive evidence but here at thisisms we have several people who had been experiencing progressive disability before Campath treatment and are now up to 6 years out with no further progression and in fact are experiencing continually diminishing symptoms.

Like everyone else, I can't say what MS is or what works and doesn't work but the blatantly obvious change of disease course after "rebooting" is hard to discount.



I'm curious if you also are aware of those with the "obvious change of disease course" after angioplasty, and if so, how that factors in to your unabashed skepticism of CCSVI.

My GP finds my own "obvious change of disease course" hard to discount too, so hey, you two have something in common already. In fact, he points his MS patients towards looking into CCSVI.

Sometimes, it's just too hard to ignore the plain brown wrapped elephant in the room...

If someone gets relief no matter what the source along with cessation of progression, I think that's great. Drugs, angioplasty, whatever works. Guess we'll figure out the why and how sometime in the next 100 years.

You seriously think re-setting the immune system is less of a crapshoot than fixing an identifiable pathology? Not to question anyone's decision to go that route, if it works, great, go for it. I'll get out my pom-poms.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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