Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby jimmylegs » Fri Jan 16, 2009 5:04 pm

cheer let me know if you get a zinc level for jeff okay? (i asked on the testosterone topic but i think it got buried fast)
i think at the end of the day all the diff points of view do hang together, we have to try to remember that - and also that even if everyone with ms does have crappy blood flow through the brain, that it doesn't have to be the same exact progression for everyone to land them there.
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Postby Cojack » Fri Jan 16, 2009 5:24 pm

Cheer,

say it ain't so! :cry: I think you're really on to something here...and look forward to all your posts...i hope you continue to share your wealth of knowledge and dedication. I've definitely got vein issues, headaches, lower extremity & neck, forehead angle worms...especially at night...so keep us posted!

Jack
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Postby jimmylegs » Fri Jan 16, 2009 5:32 pm

things hangin together:

Background Chronic inflammation has been implemented in the pathogenesis of inflammatory diseases like atherosclerosis. Several pathogens like Chlamydia pneumoniae (Cp) and cytomegalovirus (CMV) result in inflammation and thereby are potentially artherogenic. Those infections could trigger endothelial activation, the starting point of the atherogenic inflammatory cascade. Considering the role of iron in a wide range of infection processes, the presence of iron may complicate infection-mediated endothelial activation...

can't find something on zinc and c.pneumoniae specifically, but there's plenty on susceptibility to pneumonia and zinc deficiency....

New research findings have revealed that low blood levels of zinc may be linked to an increased risk of pneumonia amongst the elderly, suggesting the benefits of supplements for this at risk population.
Lead researcher Simin Meydani said: 'Normal serum zinc concentrations in nursing home elderly are associated with a decreased incidence and duration of pneumonia, a decreased number of new antibiotic prescriptions, and a decrease in the days of antibiotic use. Zinc supplementation to maintain normal serum zinc concentrations in the elderly may help reduce the incidence of pneumonia and associated morbidity.'
Zinc is one of the most plentiful trace elements in the body, second only to iron. It mediates many physiological functions and is believed to be essential for maintaining a healthy immune system.
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Postby Lyon » Fri Jan 16, 2009 7:21 pm

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Last edited by Lyon on Sun Nov 27, 2011 10:18 am, edited 1 time in total.
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Postby CureOrBust » Fri Jan 16, 2009 11:36 pm

Lyon wrote:Now, sadly others might not find it interesting enough to even try to repeat his results...
Luckily "others" include people trying to get the test done on themselves or loved ones. We personally have an investment to know / find the truth. Or at least head towards it.
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Postby CureOrBust » Sat Jan 17, 2009 4:00 am

mrshodes40 wrote:If you have ever read whole research papers it often lays out explicitly how they did the testing; that's why. Zamboni can come along and say that this or that test was not done correctly to get the finding, or conversely others can look and say this was done correctly so the finding stands in their mind as accurate.
Yes he could, but he would almost be contradicting his own paper.
zamboni wrote:The ECD-TCCS protocol was performed once by a single team of investigator (EM and PZ, respectively vascular technician and interpreting physician), so not permitting the assessment of the intra-observer and inter-observer variability coefficient. This is a limitation of our study because the assessment of the reproducibility of the proposed protocol, although beyond the aim of the present study, certainly deserves further investigation. However, it should be noted that the our ultrasonic assessment can be easily performed in the clinical setting, and, despite the operator-dependency of ultrasounds, there is general agreement on the proposed technique.
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Postby mrhodes40 » Sat Jan 17, 2009 8:49 am

Yes he could, but he would almost be contradicting his own paper


Yes, I agree with your point! You are right there! :lol:

I am a person who worries about things. :oops:

my point was that others might try to do something else to contradict the results; ie some other test the new author wants to offer as similar or otherwise equal when it is not. (worry, worry :oops: )

This was seen repeatedly in the CPn/MS research: somone like Sriram did research showing that using PCR, OMP and HSP60 he could demonstrate presence of CPn in MS brains in the majority of patients, then some other person came along showing that MS patients do not have CPn....by using serology. The two methods are not equal, but they were offered AS IF they were.

The upshot is that people/researchers/pharma who do not want to believe the new theory because it threatens their "world view" of what MS is, could reject the new idea as nonsense and go back to what they were doing.

That plays a role on these boards also. Everyone is forced to develop a point of view on which they will act and move forward. It is the only way to function and have some sense of feeling safe in this disease.

Papers and points of view that work with your accepted theory are seen as smart, correct and obviously well done. Other ideas seem not to be as well thought out, missing important detail and otherwise somehow foolish.

Once you form your view of what MS is, other points of view threaten your sense of safety; If I think MS is caused by (autoimmunity, CPn, gluten) and I have analyzed and examined this idea extensively and have taken action along those lines after finding it likely "correct" (entered a clinical trial with possible side effects, gone to lengths to get abx, have discarded all gluten, beans etc) and now I believe I feel better, I cautiously begin to allow myself to think I can have a life and feel a little safe. The experience of improvement seems to affirm what you thought after your extensive research, this thoery actually is "correct". Maybe I'll be OK, you allow yourself to have the formerly forbidden thought.

People end up becoming very dogmatic about their chosen theory, without even thinking about that and without that being their intention at all.

All of a sudden, this Zamboni guy comes along and we do not feel safe because if he's right, the steps I have taken will not "work" and I have somehow been deluding myself. Now I have to worry again that I might get worse when I was just thinking I was lucky and could stop worrying. This dynamic results in flame ups on the boards, bruised feelings and otherwise stratfies us into groups that believe this or that and makes friends of people in similar thought, enemies of those in other camps. And nobody means to be unkind or at all pushy; they are just trying to navigate the ugly waters called MS.

Jock Murray (posted by Lyon page 5 of this thread) pointed out that all these various ideas remain viable because of the lack of widely accepted research that clearly defines what MS actually is. He's right. All the ideas are viable none are off the table....yet.

I personally still believe MS is multifactorial, that is why there are so many different experiences of MSers here. But just because someone had X expereince does not mean that it proves or disproves anything about Zamboni's research, as far as I can tell it can be a co factor to every other idea out there.

Bottom line this SHOULD be easy to show. Schelling has some of Zamboni's doppler findings on his site...........
http://www.ms-info.net/evo/msmanu/984.htm

look at the videos and ask yourself if you think this is just a vague idea or if there is something there people, particularly trained people in the field, can see.

I know what I think....
And yes, it makes me feel safer cause none of the other stuff has worked for me, but I'm not ready to give up (even though I walk with a rollator now) because I still have one fully funcitonal arm and leg; I want to keep them. 8O
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Postby CureOrBust » Sun Jan 18, 2009 7:06 am

mrhodes40 wrote:I am a person who worries about things. :oops:

my point was that others might try to do something else to contradict the results; ie some other test the new author wants to offer as similar or otherwise equal when it is not. (worry, worry :oops: )
I am more worried about if those trying to achieve the same results, hoping for the same results, almost cheating for the same results, do not repeat the results. although I would guess not an easy thing to fix (vascular valves).
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Postby Lars » Sun Jan 18, 2009 9:06 am

Cheer,
Thanks for the post. This is a really fascinating study but my first thought went to the "chicken and egg" question. Is this cause or effect? I'm staying tuned.
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Postby cheerleader » Sun Jan 18, 2009 10:35 am

Lars wrote:Cheer,
Thanks for the post. This is a really fascinating study but my first thought went to the "chicken and egg" question. Is this cause or effect? I'm staying tuned.
Lars


More than welcome, Lars. I think the chicken and the egg is nitric oxide signaling and the endothelium. I wrapped up my thread. If I learn anything new, I'll be back!
http://www.thisisms.com/ftopict-6318.html
Goodbye, and thanks for all the fish,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Jan 18, 2009 11:02 am

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Last edited by Lyon on Sun Nov 27, 2011 10:18 am, edited 1 time in total.
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Postby CureOrBust » Mon Jan 19, 2009 2:24 am

I called the hospital that was given to me as a "tip". The "sonographers" name and contact was actually the contact from the hospitals PR dept. She said she would contact someone from the Dr's team, to get back to me. I didn't get a call today.

I emailed my GP, and we organised a meeting for tomorrow night. I hope to be able to get his contact to look at the tests again, and also get his take on the best way to approach my newest contact. I am sure he understands my frustrations in trying to get these tests performed, and also my aims (ie just find out if it is repeatable)
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Postby CureOrBust » Tue Jan 20, 2009 9:32 pm

WHO-HOO! Image more details later. :D
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Postby CureOrBust » Wed Jan 21, 2009 5:37 am

You can assume every sentence in the following post has a :) after it.
CureOrBust wrote:She said she would contact someone from the Dr's team, to get back to me. I didn't get a call today.
OK, I got a call back from the Dr himself today.

Not only did he say he could perform the tests, but he actually sounded interested in the material / subject. Also, I went for "the second test may not be possible to perform", and when I skim read it out to him, he said that yes, he could also perform that one.

When I was originally researching the associated tests, I kept coming up against recent papers with similar test being used for "Transient Global Amnesia"; which he brought up himself to bring it to my attention. So it appears he follows the latest in published vascular research, and this paper may also peak his interest. He actually asked in which journal it was published.

He has asked that I send him the paper and list of tests, and he will contact me again with a date he could see me (ie perform the tests), he said his waiting time is a couple of weeks. This guy sounds like he could be the one to do the tests.

I also spoke with another sonography lab today. They appeared to do work in the field with "Extracranial Cerebrovascular Imaging" featured on their website, but they ended up not being up for it. Most of their work was on the arterial side, and never on the internal jugular vein. I was a little confused by the diagram associated with their "Extracranial Cerebrovascular Imaging" which appeared to be of the arteries only. :? Anyway, the guy asked me to send him a copy of the paper out of interest.
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Postby wobbly » Wed Jan 21, 2009 8:01 am

hi all /i am 1 of 4 americans who just went 2 italy 2 have this procedure done/ it is a joint venture with the research team in buffalo/ i am very bad w/computers/ however i got 2 no dr zamboni very well / there is some very very hope 2 all this / i have mri s and dopplers 4 sat 2 check what happened but i will tell u it was no big deal / also i feel clearer and my intense heat sensitivity has gone away 4 now / any questions just ask ---PEACE :( :(
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