This Is MS Multiple Sclerosis Community: Knowledge & Support

I am somewhat new to the MS world. The media and the neurological community continually analogize CCSVI to 'bee stings in Mexico' and 'hyperbaric chambers in Florida' ? Is there a nutshell comparison of the reaction in the MS world to CCSVI and these supposed treatments.?. the degree of plausible of CCSVI is very high.. from the lay perspect "it just makes sense" (nothing scientific there.. is my feeling) Was the reaction to the others as high? Was there a placebo response in these cases? and was it comparible to the amazing results we see now?

thanks

I'm very curious about this, too. Not the validity of the supposed treatments, but the reaction of the MS community when they were brought forth.

What causes CCSVI to make sense to my very unscientific mind, is that it's an actual physical condition that can be corrected. Is it genetic? Is caused by trauma? Who knows, and it's going to take a very long time to prove, or disprove, it's connection to MS. But, it's very true that the vascular connection to MS is not a new theory.

So, since nothing else has been proven to be the cause, and there are treatments that have limited benefit and high risk side-effects, it's definitely time that a not so new avenue be explored.

I just googled "MS bee sting therapy" and looked at the results for just a few minutes. I think what I saw is what neurologists want the CCSVI-treatment to end up. Nothing proven yet, pro and anti-positions, anectdotal reports of benefits, has generated some buzz, followed by some small preliminary studies, experimental/alternative therapy, nothing proven yet...

The main difference I think is that this is said to be a therapy for the symptoms only from the beginning. Interesting: "It is also used for a number of other diseases and conditions, including depression, skin conditions, menstrual cramps and varicose veins.

But maybe I'm wrong and it is already disproven.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Two weeks ago, I had a relatively non-invasive laser treatment for varicose veins. The cause of varicose veins was completely explained to me, and the procedure was completely explained to me. It all made perfect sense to my unscientific mind. On the other hand, bee sting therapy would never have been something I would have considered as a viable option to treat my varicose veins. It makes absolutely no sense to me.

I didn't want to say that it makes any sense or not. I just don't know, and it's hard enough to keep up with the informations about CCSVI.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

I think one response to the argument that CCSVI theory is just like bee sting theory is to point out the number of scientific papers on bee sting theory (are there any?), then point out the number of scientific papers on CCSVI, by a variety of authors at this point.

One is a serious story and one is fluff and it minimizes the serious story to lump it in with the fluff. But the science will win out.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Thanks everyone.. I guess I was wondering if the response in the MS community, in those cases, was as overwhelming as it is for ccsvi? and if the media as 'informative'. There are many articles drawing these analogies and it would be good to clear the air with informed rebuttal in their comments sections.

I am new to all this as well and have been wondering the same thing.

I am not sure how old this message board is but I did notice one thing:

On a brief glance at the main first page of the forums there are more that 40,000 posts re: CCSVI while the most other topics do not exceed 4,000. Things like bee stings and hyperbaric chambers don't even seem to rate their own heading.

Interesting

I think people hear what they want to hear instead of digesting the information and coming to their own conclusions. I think CCVSI, for all its hype, could be another viable option in treating MS. I don't think it's a cure but if it slows down or stops progression while relieving some symptoms then it's worth it to many MS'ers. I suffer horrible heat intolerance and cold intolerance. If it will relieve these symptoms and slow or stop my ms progression I will consider trying it.

Marcia

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Marcia

What makes CCSVI different is that it is not about "cure"--it is about disease mechanism. Whether or not it is the 100% answer of the process of MS--it is looking like a large part of the disease.

The "cures" mentioned as bogus: hyperbaric oxygen, low fat diets, bee stings, snake venom, etc--all affect the vascular system. Which is probably why MS patents find symptom relief using these methods.

Dr. Swank saw that a low fat diet helped his patients remain in remission--in the CCSVI paradigm, that would be because saturated fats create endothelial disfunction, inflammation and hypercoagulation. The brain is oxygen deprived in CCSVI--which seems to be why patients would have temporary relief using H-bot. And venoms and bee stings provide temporary vasodilation: an opening of the blood vessels. Which makes sense if you're vessels are narrowed.

It is hard to cure a disease if you don't know what causes it. CCSVI is a medical condition, not a cure.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

@Cheer - Your much better at explaining things than me. Thanks!

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Marcia

One can't really compare that. By the time the bee sting therapy came up, facebook didn't even exist. Times really have changed, and if people are aware of the powers provided by the internet and use them as wisely as they can, well... really could make this planet a little bit better, I think!

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"There is only one good, knowledge, and one evil, ignorance." Socrates

CAH,
I couldn't agree more...

Thank you, Cheerleader, these are the words needed..
"The "cures" mentioned as bogus: hyperbaric oxygen, low fat diets, bee stings, snake venom, etc--all affect the vascular system. Which is probably why MS patents find symptom relief using these methods. "...
next time i see the parallel drawn..i will not argue it, but thank the author for raising these points in support of the vascular theory

and.. i understand.. CCSVI is a medical condition, not a cure.

Saturated fat free food for thought..Vasoconstrictors.. stress is high on the list.. diagnosis of MS = stress.. a vicious circle created..

The direct correlation between all those "bogus" treatments and the vascular system completely explains why they could cause symptom relief. Which, in turn, causes them to make perfect sense.

Now that, to me, makes the theory of CCSVI even more compelling.

Thank you for explaining that, Cheer.

As the son of some Dx'd over thirty years ago, i can say that while it wasn't huge on teh internets, it was a media blitz. My mother got bee stings and it was on news magazine shows quite often. (W5 probably even did a show).