Alrighty then, my "interview" is up on MS Central.

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

Postby zap » Sat Sep 12, 2009 8:25 am

I really don't know how many people read that site or the comments, but thought I'd mention there is a skeptical commenter on Lew's interview that could use responding to (it's mostly just misunderstandings resulting from not really reading much about it, but if nothing else it'll be good practice 'cause we're probably going to be hearing a lot of this stuff - not all MS patients are as "researchy" as we are here) ... his main questions/issues being:

the biology of the whole thing doesn't make sense to me. I don't really understand how our own blood can essentially attack our nervous system.


they talk about blocked veins a lot. Now, I reiterate I'm not a doctor, but when I think of a "blocked vein" I think of a blood clot. So are they saying that people with CCSVI are throwing a lot of blood clots, which then leak blood...etc. Isn't a blood clot in a vessel in the brain a stroke?

(repeats notion that MS is autoimmune - that axons are destroyed AFTER sheath, which is not true)


Maybe I'm being picky here but, isn't the myelin sheath the "antigenic target"?

There have been a few published studies, yes, linking CCSVI with MS. That in NO way means that we ALL have it. Maybe we do, maybe we don't. But without further studies and a way to screen people for that, it is just a gross generalization.

(mistakes Lew's discussion of newer drugs that wipe out the immune system with CRABs)

etc


at http://www.healthcentral.com/multiple-s ... 1/comments
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Postby CureIous » Sat Sep 12, 2009 3:28 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:48 pm, edited 1 time in total.
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Postby mrhodes40 » Sat Sep 12, 2009 5:24 pm

but I refuse to do people's homework for them either. They got the links they can check it out for themselves, if not then why bother trying to convince them? Got better stuff to do.


Yes!! That is exactly how I feel about it. This person is making a lot of assumptions and mistakes but not just about CCSVI.

For example the person comments about the "fact" that myelin is attacked in MS as a counter to the comment that Lew made that the antigenic target has never been found in MS.

Lew is right. In fact the current Ectrims reported that some have found what they *think* may be an antigenic target--again--and it ain't myelin. Furthermore that same research made it clear that MS deterioration is pre phagocytic--which means the deterioration happens before the phagocytes (immune cells) get there. There have been a good number of papers on the fact that the immune system comes after the fact now....

You can't do anything with people that unaware of what is really going on in MS research, they simply quote the party line and feel sure that as long as they got it right, it is the truth about MS.

In reality this masks a deeper issue, one of safety. It is dangerous for CCSVI to be right, because if it is, then whatever it is that you are doing is not going to work, people can't accept that . When you say that MS is CCSVI it is the same as saying "you are going to get worse unless you address your veins"

People will aggressively fight that and "defend themselves" UNLESS they are failing or for some other reason have decided standard therapies are not right for them.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby CureIous » Sat Sep 12, 2009 5:33 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:47 pm, edited 1 time in total.
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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Postby mrhodes40 » Sat Sep 12, 2009 6:09 pm

One thing is for sure, people merely years from now are going to have much more in the arsenal to combat this, much sooner, than generations previous...

:D :D :D
I agree finally we are looking at years not decades it seems......and I am with you about the science...it is looking really good
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CureOrBust » Sat Sep 12, 2009 8:19 pm

As soon as I read the first line, I had to skim read the rest:
I don't really understand how our own blood can essentially attack our nervous system.
ummmm... doesn't the currently accepted theory have the white blood cells attacking our nervous system?
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Postby Loobie » Sun Sep 13, 2009 8:35 am

I just posted a response also. I just answered the question I could remember without having the text right in fornot of me, but I just pointed him/her back here. I'm just not equipped with the innate understanding of these like others.
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