This Is MS Multiple Sclerosis Community: Knowledge & Support

HI CUr-o!
A Hippie! No you are a great asset to TIMS and I am glad you are here to speak out. I always appreciate your ideas and like to read what you say.
From the BIg Idea 2006 Zamboni

and


From Schelling page 19

Dilated can be considered "stretched".......... We are talking about a lack of venous drainage and a backup of blood and engorgement of vessels in the area of lesions. I am not sure anyone else used that word -stretched- in their paper though

I am on Zamboni's side from the standpoint I would like him to gather enough to "prove" his point without a lot of pollution...pollution being other researcchers with a different ax to grind. But I 100% agree with your point of view that this stuff ought to be freely shared! Yeah Hippies!

I have a wonderful seminar on CD by Candace Pert, the famous researcher that found the mu receptor and neuropeptides. She says in her speech, paraphrasing here, that people think science is this big objective thing, but in reality the researcher has a point of view and he sets out to prove he is right, and he designs his experiment to get the result he believes is accurate....HIS point of view. I think the pharma would have a "point of view" on the idea MS is a venous issue and not autoimmune. I can understand Zamboni's desire to cross all the T's and dot all the it's so it's kind of iron clad.

That having been said, do I personally let myself go down the toilet so someone else can sit on their findings?

Nope, like you I am looking locally for help in this arena. I like your POV that it is all about getting the testing done and seeing what is there. I am glad to hear you looked into how standard these things are and they seem to be regular everyday tests. I also think you have it right: don't insist anyone agrees with you just get the tests and see what you see.

I am not talking to my neuro either........
marie

Give that paper to a vascular doc, and you're going to get some raised eyebrows. I'll be interested to hear Arti's vascular/neuro's take on it.

Zamboni's keeping his research on his turf. SUNY Buffalo is sending some of their MS patients to him in Italy for his Liberation treatment. He's written many papers w/the docs at the Jacobs Neurological Inst. and has relationships there. He wants to broaden his non-profit corp. to include US chapters, but for now, the treatments stay in Italy. Marie's right about him not wanting his research to be polluted...but she's also right about not sitting around, idly waiting. If you have a hunch you may have venous abnormalities, you don't want to wait a year to get on that. This isn't about FDA approval, it's about the truth.

We had a dear colleague die of a "heart attack related to his MS". I remember thinking...how could a heart attack be related to his faulty immune system going after his myelin???? My obsession is for the late and great Michael Kamen, for my husband, for all my friends with MS.
Happy New Year,
AC

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

..

oh get this i just found a related article by coincidence.. well okay a blog for a commercial nutrition product... but still. on inflammatory heart disease:
http://www.proteinpower.com/drmike/unca ... lammation/
The lipid hypothesis of heart disease is rapidly being supplanted by the inflammatory hypothesis, which, for my money, is much more on the mark. The researchers who have spent their careers doing cholesterol research are not going down without a fight, however. Whereas most of the speakers at medical conferences always used to show graphs demonstrating that as cholesterol levels went up, so did the risk for heart disease. Now most speakers are showing graphs demonstrating that elevated cholesterol in combination with an elevated C-reactive protein (a measure of inflammation) is a better gauge of heart disease risk. I predict that over the next few years, the cholesterol part of these graphs will slowly disappear.

and then he cites this:

Bob-
Zamboni's article was peer reviewed ....
From the Journal of Neurology, Neurosurgery and Psychiatry


The Zamboni research is fact, based on scientific research, which has been reviewed. Zamboni wants to write a paper on his treatment protocol which he is testing now in Italy. After he has the results, he will publish that- in a year's time. That will be peer-reviewed, as well. Let's reserve judgment.

Also, Doppler technology in scanning venous anomalies is a new science. It wasn't around when Jock and many other neuros were discounting the vascular connection. Some things DO change...
AC

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

I'm curious though about one thing:

Are people getting better after becoming unblocked? Has anyone heard?

I totally agree that if we can get the blood to stop crossing the BBB we stand a much better chance. But in theory then, I would ASSUME it's like HiCy. Get rid of the bad stuff in the CSF/BBB and you can start to repair. I realize it would be longer to let what is there to die (blood cells) but once they were gone it would make sense.

Des this sound reasonable?

Happy New Year, Chris!
No results on Zamboni's procedure, yet. I would assume that folks might see some healing, but it's too early. He's promised to complete his study this year and get a peer-reviewed paper published. He's working with Buffalo/SUNY, the Dept. of Neurology in Bologna, Italy and the Neurology Dept. at Imperial College in London.

Here's the story of a woman who had been diagnosed with Meniere's and the docs found a clot in her jugular vein. They "anticoaglated" her, and her symptoms went away. Will it be the same in MS? Too early. Zamboni believes yes, or he wouldn't be working like crazy to get this to the marketplace.
http://findarticles.com/p/articles/mi_m ... _111111836

Can we speculate...sure, but it only gets Bob worked up

In the meantime, living a heart/vein healthy life can't hurt. Finding out if you have clots is a good idea. Jimmy mentions C reactive protein in her post above, re: heart disease. She's right, we're going to be reading alot about Crp this new year. Going snow shoeing today..that should work up a sweat and get the blood pumping. Going to try and step away from the pie, too!
AC

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

Below is a letter from Marian Simka, a specialist in angiology, to the Journal of Neurology Neurosurgery and Psychiatry in response to Zamboni's latest research. I think she raises a lot of important points to consider.


Chronic cerebrospinal venous insufficiency: a potential weakening factor of the blood-brain barrier

Multiple sclerosis is believed to be an autoimmune pathology, yet the mechanisms triggering the disease remain elusive. Therefore, I read with great interest the paper by Zamboni and his team who investigated the venous hemodynamics in patients with multiple sclerosis. His findings that this disease might be attributable to venous refluxes shed new light on the facts that have been known for decades, but have been mostly ignored by the scientific community. It should be answered, however, how this pathological outflows in the extra- and intracranial veins could trigger autoimmune reaction.

to read the rest of the letter:
http://jnnp.bmj.com/cgi/eletters/jnnp.2008.157164v1

..

Hi.

I have been following this very interesting thread. I have found this study:

<shortened url>

It has been found that healthy people have their 2.5% of their B cells population auto-reactive by "manufacture". However, they are put in anergy by some unknown mechanism. They reactivate, though, when they are intensely stimulated.

Could it be that the thinning of the BBB exposes these normally shut-down cells to very high amounts of the stimulus?

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Boo!

I found my way here finally!

Everyone at TIMS started a party I didn't know about. I've started reading the first paper, but I don't get the 100% of MS'ers 0% of others numbers. Am I reading wrong? This is based on an initial skim.

Stop taking Iron?

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Not without getting a few things checked out at the lab!!!!!

Please consider:
-MSers are likely to have the elevated serum ferritin of the anemia of chronic disease /inflammation.

-MSers typically have lower zinc than healthy controls. In my case, dramatically below the bottom end of the normal range.

-Zinc is anti-inflammatory. (so's magnesium apparently, not just anti-spasmodic)

-Zinc repletion helps you make more uric acid.
[update...adding a link to a study on this - rats only so far ]
http://linkinghub.elsevier.com/retrieve ... 6306002269

[update... a human in vivo study not related to ms specifically though]
http://www.ncbi.nlm.nih.gov/pubmed/3777013
Oral zinc therapy normalizes serum uric acid level in Wilson's disease patients.


-Zinc deficiency changes your iron metabolism.
i found an in vitro study; will look for more:
http://www.jbc.org/cgi/content/abstract/283/8/5168
Zinc Deficiency-induced Iron Accumulation
snippets:

and just because it's the weird kind of thing that google pitches one's way sometimes, here's an interesting digression:
http://www.springerlink.com/content/k21061r025437346/
Zinc-deficiency-induced retinal dysfunction in Crohn's disease
[...hmm more inflammation, zinc deficiency, and eye trouble too...]

and i think i already linked to this before too:
http://www.jacn.org/cgi/content/abstract/27/5/577
Zinc Deficiency Induces Vascular Pro-Inflammatory Parameters

and for good measure:
http://www.ebmonline.org/cgi/content/full/223/2/175
Zinc Deficiency Exacerbates Loss in Blood-Brain Barrier Integrity Induced by Hyperoxia Measured by Dynamic MRI

oops that's all for now gotta run for a bit...
JL

Hi Napay!
Welcome to the party!
Yes, do read though it again and also see the chart and effort Cur-o did to evaluate the numbers.
http://www.thisisms.com/ftopic-6318-day ... sc-60.html

It actually is all of the MS patients showing 2 out of 5 abnormalities. None of the other people even with OND or other vascular problems had that.

The papers are great read them all, I have a file just for these papers. The more I read things associated the more it comes together.

I know you & your wife, like me, have been doing abx and have had some success there, but I can see how this might tie in from the standpoint CPn is a vascular germ and once the BBB is damaged as described it WOULD get in if you had it in your macrophages monocytes etc. Potentially a CPn infection could be secondary to this process.

The researchers who have found CPn in MS brains have not necessarily claimed it *is* the cause of MS only that it's there, because that is all they can show for sure at this point. One of the main complaints against it by MSers is that if everyone gets CPn how can that cause MS since it's rare. Could this theory explain that conundrum?

OTOH, it will be interesting to watch this develop from the standpoint that we will hear with time if all MSers end up having this when tested and of other vascular specialists can actually see it as well. I hope so!

Jimmylegs,
Not sure how Iron and Zinc work together here, but I know you know what you're talking about. I can't really read up on Iron/Zinc because I got 125 PAGES of Schelling to read. I know nothing about veins and all this makes me feel a bit queezy. I feel like the party ended just as I found this thread.

Marie,
Thank you. You know I'm going to comb through this. I'm dying to know if it works in conjunction with ABX thinking. New big words to learn!

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Yep, I know you'll be thikning deeply on it.....

I really appreciate everyone here. I would never have stumbled on it by myself. Thanks to Dignan and Cheer and Cur-o this thread is offering a new line of thought for us to read and I am glad for it........

I am really excited to see how people's venous studies turn out....
worry that maybe "regular" venous specialists might not be able to see it but am comforted by Cur-o's post that these turn out to be normal everyday tests...
and really can't wait for the Zamboni results later this year...