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

Postby chrishasms » Sun Jul 26, 2009 8:56 am

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Postby Frank » Sun Jul 26, 2009 9:06 am

On page 4 of this thread, the question came up, why the ABX protocol might be helpful in MS given the correctnes of the CCSVI scenario.

Two components of the ABX regime (n-acetyl cysteine and Minocycline) demonstrated some ability to mitigate the impact of ischemic stoke on the CNS.
This mechanis of action could also offer some protection from blood reflux due to CCSVI. Would you agree about that?

Minocyline:
http://www.neurology.org/cgi/content/ab ... 69/14/1404
http://www.news-medical.net/news/2008/05/19/38450.aspx
NAC:
http://www.ncbi.nlm.nih.gov/pubmed/15114624

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Terry » Sun Jul 26, 2009 9:16 am

There are no answers without questions.

I love you all.

We'll get there. Hopefully we'll get there soon.

Terry
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Postby Loobie » Sun Jul 26, 2009 10:11 am

Lyon wrote:
Loobie wrote:So please tell me why in the world you wouldn't just say Good Luck and my thoughts/prayers are with you?

To me, only shooting down ideas and not offering any alternatives is weak.
I'm glad you are the person delegated to define "shooting down ideas" because the rest of the world has been in sore need for a better definition for "objective science".
[/quote]

Bob,

Please, stop picking shit with the chickens is all I'm saying. I don't even care if this is statistically right, statistically wrong or anything in between. I just seems to me that you are getting caught up in the details of the trial protocol. You know damn good and well that not a single person except maybe Zamboni or somebody is equipped to argue the minutia. For some reason, you seem to want to. YOU KNOW that the diagnosis of MS is difficult, yet you act like there's a problem that they DON'T KNOW FOR SURE. You just said yourself that's it's an inexact science.

Let me break it down for you. My jugulars were clogged, they aren't anymore. I HOPE it helps my MS. Should I have left them clogged because they aren't sure that 100% of the people had CDMS? You know that's a crap shoot to a point when you're talking 100%, so why fret over that? I just don't get that. Look at what they are trying to do, not so much on how they are getting the stats. Using your logic of it being next to impossible to be asbolutely certain that all trial participants had the CDMS, then why not go on the Avonex and the Tysabri threads and throw the same argument around? I guess I come on here for support and for people to wish me well going into uncharted waters. I guess you're totally free to remind me ad nauseum that everythings not perfect, but you're forgetting one thing....I already know that and am doing it anyway.

I don't remeber any of this from you surrounding the Tovaxin trial. Maybe that's because you had a horse in that race. But that trial was FAR from anything that resembled a trial if you ask me, yet I still did that too. Were you pointing out that all the serious protocol breaches were going to skew the results of that trial? You just wanted it to work and were involved in that trial, as flawed as it was.

I've questioned this a million times over. And yes I'm putting a lot of faith into the fact that it will work. Is there a better alternative? I understand your problem with the lack of "objective science" or whatever point you're trying to make about the flaws in this symposium summation. But what are you actually trying to do besides play "I'm right"?
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Postby cheerleader » Sun Jul 26, 2009 10:21 am

Frank-
Thanks for the study on mino and NAC's affects on hypoxia in stroke. The best way to stop hypoxia and shut down the macrophages is to end reflux, and get oxygen into the brain and deoxyginated blood out. Until people can do that, these are good supplements to consider, and they can be very helpful in preventing increased damage from reflux. Thanks for showing us the mechanisms of action.

I do not have MS. I never injected a CRAB. Never had a relapse. I didn't have a catheter sent up my body, or metal stents put in my neck. I didn't come home to headaches and nausea. So thanks for letting me ramble. Terry's got it right, we'll all get there....wherever "there" is.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ernst » Sun Jul 26, 2009 11:28 am

After reading lots of different theories about causes of ms - this CCSVI finding is so lovely.. cause it's something concrete (simply block in vein) and you can think of it with common sense. I feel like I'm almost allergic to all those different scientific theories of causes: "t-cells this.." and "b-cells that..". Yuk. And now you have this fact (not theory) that there are blocks in veins, the blood does'nt move like it should. What a hell? Commen sense say that "it has to be fixed". And common sense say also "blocks in veins that are connected to brain.. are bad thing". I love common sense :D
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby skydog » Sun Jul 26, 2009 11:29 am

Right wrong or indifferent none of us will get out of this alive. So keep questioning the answers for those generations to come that will benefit from our mistakes. Cheers, Mark
Plant a BIG Garden Live in the Moment
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Postby LR1234 » Sun Jul 26, 2009 11:43 am

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Postby Lyon » Sun Jul 26, 2009 12:43 pm

..
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Postby patientx » Sun Jul 26, 2009 2:06 pm

LR1234 wrote:My only major worry is that if only a selected group of dr's can identify CCSVI that makes me worry about it being something that is 100% fact.

The problems arise (as they have done with me) That one dr can see something that another dr can't.

This really makes me cautious as how can a study be taken forward to the masses and be considered fact if the average dr cannot see the occlusions?

Is it because the dr's who cannot see the stenosis are inexperienced in knowing what to look for?


Thank you for writing this. This is exactly my concern. We saw the same thing with CPn, where no one could replicate the results seen at Vanderbilt and USF.

I would really like to see others perform these vascular scans, to validate the results seen by Zamboni and Dr. Dake.
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Postby cheerleader » Sun Jul 26, 2009 2:29 pm

patientx wrote:I would really like to see others perform these vascular scans, to validate the results seen by Zamboni and Dr. Dake.


So far, the following doctors/universities have recognized CCSVI/are utilizing the current technology to locate venous insufficiency: Jacobs Neurological Institute (SUNY Buffalo), Dr. Guilio Gabbiani (University of Geneva) Dr. Marian Simka (Poland), Dr. Claude Franceschi (Paris), Dr. Michael Dake and Dr. Zamboni's team. These are the ones that have publically stated their current studies on CCSVI. There may be others who are unannounced at this time. We're just six months in to this. The Bologna conference is a little over a month away.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Sun Jul 26, 2009 2:37 pm

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Postby mrhodes40 » Sun Jul 26, 2009 2:42 pm

I agree the lack of easily being able to see it is a big problem. In his Dec ''08 paper Zamboni said easily reproducible and inexpensive doppler tests which implied to me that this is something you can get at your corner drugstore.

When I went to my local university they saw vertebral vein reflux and everything else was "normal".

The doppler lady at the Stanford clinic saw not even the vertebral vein reflux.

But the MRV showed 80-90% occlusion bilaterally with collateral veins, which demostrates the body's other venous systems can't take the load and it is trying to make a new route. In heart patients this is acknowledged to mean surgery is needed.

PX anyone anywhere could see that on my MRV. YOU could too.

It was like Alex's which is on the research thread now near the bottom of the second post in the thread.

We saw the same thing with CPn, where no one could replicate the results seen at Vanderbilt and USF.

anyone anywhere could replicate my results all they have to do is do an MRV on me and there it'd be, big as life. We don't seem to know how Zamboni does his dopplers though just with current everyday average understanding of how to apply doppler technology, that is fact.

but that is how medicine advances. People learn new things.

I'd wait if I could but I can't so I am a pioneer...... If you can wait then by all means wait for more replication, I don't blame anyone for that
but this is not something that is only in the minds and hypothetical--it is real stenosis.

getting it diagnosed is another story now.... :?
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 patientx » Sun Jul 26, 2009 3:38 pm

mrhodes40 wrote:
PX anyone anywhere could see that on my MRV. YOU could too.


I wouldn't be so sure of that; I can be pretty dense, sometimes.

I'm trying to remember, in you particular case, the local university didn't find anything remarkable in your dopplers, but Dr. Dake did? And why did you choose to have dopplers done, instead of going right to the MRV (assuming you had a choice). Was it because this was the protocol Zamboni followed?
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Postby mrhodes40 » Sun Jul 26, 2009 4:15 pm

cure or bust was the first person to be tested with dopplers. He is an aussie.I was person 2 and all we had to go on was that cure didn't see 2 abnormals but one jug thing, and that the Z paper said it was easy to do.

I wrote and asked the head of vasc surgery at the Univrsity if he could at least test me and he agreed after reading all the papers I sent that he would like to try it he offered no guarantee though he knew it would not be easy. I was paying out of pocket and we had no idea that CT or MRV was the way to go.

They saw the vetebral vein reflux...an artifact of being overloaded from jug blockage...but that was all. and they offered no solutions.

a few weeks later dr Dake saw Cheer's Jeff and after they had success with MRV and set up treatment, he agreed to see me too and my dopplers AND TREAT ME IF NEEDED.

he set me up with his doppler lab for second dopplers bso he could have a complete data set ...the doppler lab saw nothing considered abnormal, but the MRV was as described above. this was MAY 18!!!!

on Alex's mrv you can see the two big veins in her neck. They dwindle down to nothing right at her ears. Mine were the same 80-90% blocked with a lot of other collateral veins trying to pickup the slack. sort of a spider web looking thing where the thin spot is.

It is really hard to get your head around but I was treated person 2, only 9 weeks ago.

We didn't know then what we know now, most of it because of people stepping up here and sharing their tests and what happened.

Now several people have tried dopplers and we have seen they are hard to see abnormals on without specialized training (Jacobs Neuro has Zamboni trained doppler operators who find it all the time)
Last edited by mrhodes40 on Sun Jul 26, 2009 4:19 pm, edited 1 time in total.
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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