CCSVI skeptics

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

Postby CureOrBust » Tue May 19, 2009 8:42 pm

Lyon wrote:I'm not a complete skeptic but I can only believe what the evidence points to and a LOT of evidence still isn't in.
Bob, do you consider yourself a "sceptic" of the "Hygiene Hypothesis"? I'm not trying to catch you out, but the "evidence still isn't in" on that one either, yet if I haven't misread your previous posts, you appear to be a strong believer in that theory?
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Postby notasperfectasyou » Wed May 20, 2009 6:28 am

Lyon wrote:helminth com padre!


Was that from the Cat and the Hat? Like the Swedish translation?
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Postby Lyon » Wed May 20, 2009 1:58 pm

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Postby CureOrBust » Wed May 20, 2009 4:42 pm

Lyon wrote:Over the years you've heard it too many times so I won't again subject you to the evidence reinforcing the Hygiene Hypothesis.

I can't honestly say I'm skeptical because I think that definition does denote feeling that there is reason for doubt...and I haven't seen reason to doubt the hygiene hypotheis
"Over the years you've heard it too many times so I won't again subject you to the" reasons to be sceptical to the Hygiene Hypothesis. Its a little condescending to imply someone is ignoring "irrefutable" evidence, when it clearly is not irrefutable.

I am sceptical of a lot of things, even some that "science" currently holds as a truth. I hope you weren't implying I should be as sceptical on CCSVI as you, just because I have some doubt. I have doubt in both theory's at this point, but a lot more at this point in the hygiene hypothesis for MS.
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Postby Lyon » Wed May 20, 2009 5:08 pm

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Postby whyRwehere » Thu May 21, 2009 12:21 am

Calm down everybody, you don't want the pressure to build up too much. Kaboom!
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Postby robbie » Wed Jun 03, 2009 10:10 am

Does everyone with ms have blockage in their jugulars or somewhere? what if a person with ms goes to see Dr Drake and shows no blockage anywhere does this mean that the CCSVI theory crashes?, Would it be common for a non ms person to have blockage? How much would this procedure of installing stents cost? Just wondering
Had ms for over 19 years now.
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Postby cheerleader » Wed Jun 03, 2009 10:30 am

robbie wrote:Does everyone with ms have blockage in their jugulars or somewhere? what if a person with ms goes to see Dr Drake and shows no blockage anywhere does this mean that the CCSVI theory crashes?, Would it be common for a non ms person to have blockage? How much would this procedure of installing stents cost? Just wondering



So far, every patient with MS tested by Drs. Dake or Zamboni (the only 2 doing venography so far) has shown venous stenosis in either the internal jugular veins, azygos vein or a combination of both. Dr. Simka found 6 MS patients and 3 probable MS patients had reflux in their jugulars with doppler testing, and he is appealing to Poland's ethics committee to do venographies.

If someone goes in and doesn't show blockage...nothing "crashes". These doctors are looking for answers, and are only interested in the truth. They have nothing to "prove" and are curious to see this keep appearing in MS patients. 100% so far.

In Dr. Zamboni's tests, he looked at over 200 "normal" people as well as people with other neurological issues as controls, and none showed venous stenosis. Dr. Dake has not looked at normal people for controls.

Jeff and I figure the testing and stenting procedure would cost 40,000-50,000 dollars US, including a night of hospital stay (we've just started to see the insurance bills). THis is why we need more doctors to come on board and look at this paradigm. Dr. Franceschi will be seeing patients for testing in Paris, but no reports from him as of yet.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Wed Jun 03, 2009 12:16 pm

100% so far.

To bad cheer they couldn’t test the millions with ms to see if they all had blockages, what an oversight that would be if they did.
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Postby cheerleader » Wed Jun 03, 2009 12:33 pm

robbie wrote:
100% so far.

To bad cheer they couldn’t test the millions with ms to see if they all had blockages, what an oversight that would be if they did.


If an MS patient can have an MRI, they should someday be allowed an MRV- paid by insurance- the cost is comparable. Why not study a potential cause , rather than just the resultant damage? Counting lesions does no one any good. Finding stenosis and repairing blood flow may help.

But first, the link of venous insufficiency in MS needs to be proven. We'll get there, Robbie...but more MS patients and those that love them need to bang on doctors' doors and ask them to read the research for themselves. We need more curious doctors and more squeaky wheel patients. I send out a dozen e-mails a day to docs and people who have heard about Jeff...
this isn't going away any time soon. Anybody have any luck finding docs in Canada?
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Wed Jun 03, 2009 1:09 pm

Hi cheer I think even if I was able to afford this or get it covered somehow and I did have some blockage somewhere I wouldn’t want the surgery. If I really believed it would help ms in general I would but what you and others are asking us to believe is just too much for me anyway so I will pass on this idea. There will be another just around the corner kind of like we always say about the cure. I just like to ask questions but I’ll stop
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Postby chrishasms » Wed Jun 03, 2009 3:09 pm

123
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Postby LR1234 » Wed Jun 03, 2009 3:49 pm

MS is supposed to be a progressive disease which suggests doing nothing is not an option. (well for me anyway)
Many people have had good results by changing diet, exercise, taking campath, tysabri, revimmune, antibiotics, supplements and now the option to increase blood flow if there is a blockage.

Correcting stenosis may turn out to be just another weapon in the fight against MS alongside the immune modulating drugs. I think its too early to truly say that it is causative but I am going to do everything I can in all the camps (abx/ccsvi/Ldn/diet and exercise) to increase my chances of staying active and mobile.
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Postby Loobie » Wed Jun 03, 2009 4:03 pm

Chris,

I guess just because it is a more "mainstream" thing (putting stents in) than a round of high dose chemo. I could be dead wrong, but that's all I meant I think (I don't remember saying it, but I'm sure I did!). Also because it is so targeted. Unclog the block that's present. With HiCy, and even the CRAB's, I think it's a bit like dropping a cinder block on an ant to kill it. It takes out your ENTIRE immune system (save for the memory in the bone marrow?). This just seems so targeted, and if it were found happenstance by a doctor who wasn't even aware of MS, he would probably recommend intervention.

Now there are some grand assumptions on my part as I read it back, but that's just where I am coming from on the whole safety thing. Maybe I'm just saying that to satisfy myself though because this is, after all, surgery 8O .
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Postby coach » Wed Jun 03, 2009 6:11 pm

Amen LR1234. Enough said. Some of us are running out of time. To try or not to try that is the question. So far as risk/benefit analysis is concerned, I think MRV and possible stents come out way ahead of some of the other things, for example DMD's, novantrone, tysabri just to name a few.

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