Dr. Zamboni's website

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

Postby peekaboo » Sat May 16, 2009 8:37 am

It is maddening the power of lobbyist and pharma co's etc. But this may be a great way to prove it and not just another conspirathy theory! I am so glad for cheer & marie who pushed the reasearch and got the CCSVI train rolling.

Cheer you are so right about cost savings but will that change the momentum? Once Zamboni's work is out in the open and my procedure is competed with obvious results...i will write the president, congress even publications to fight for this cause.

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Postby Loobie » Sat May 16, 2009 8:48 am

If this works, it will take just one of us to get on Oprah and it will be a done deal. I'd say that woman's influence is as far reaching as it gets! Plus you're right Joan, if this is it and Michelle Obama knows about it? Does anyone think that it would really take more than that? At least to get to word out anyway. I'd say if she spoke out on behalf of this, she is the only other person other than Oprah that could do it 'bigger'.
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Postby NHE » Sat May 16, 2009 3:15 pm

mrhodes40 wrote:Shoot it's been decades they've been trying to show an actual autoimmune antigenic target without success but they BELIEVE anyway.......... and that has never stopped them from treating us with suppressives; why would they stop recommending that wonderful super great approach now?? :lol:


I believe that it was very unfortunate that Opexa's phase II study had, in my opinion, problems with both its design and management. However, one of the positive aspects of their work is that they were able to identify several regions within myelin basic protein, proteolipid protein, and myelin oligodendrocyte glycoprotein which are antigenic and recognized by t-cells in their assays. Please refer to pages 24-27 in the presentation linked to in my prior post from last November.

It is my hypothesis that problems with vascular stenoses and the mircrolesions seen on 7 tesla MRI trigger the immune system to start attacking myelin proteins. Moreover, it is possible that the relapse remitting nature of the disease results from several factors. One might be neuroplasticity in the brain as it tries to work around damaged areas. Another might be that the immune system recognizes that it is attacking autoantigens and is struggling to regulate itself sometimes being more successful than others.

In any case, there are known autoantigens in MS and CCSVI presents itself, in my opinion, as a reasonable hypothesis as to why the immune system would start attacking myelin in the first place. I haven't participated much in the discussion of this topic but I have been following along with the various threads. It's great to read about all the improvements that Cheer's husband is experiencing and I'm anxiously awaiting further news from the other people who have contacted Dr. Dake.

Lastly, involvement of the immune system appears to explain why the immune modulating drugs appear to be only partly effective. They stem the immune system's attack on myelin but do nothing about the underlying cause. I currently suspect that successful treatment of MS may involve a two phase approach such as correcting any problems with CCSVI followed by a therapy such as Tovaxin or Revimmune. This hypothesis makes Chris' pending results all that much more interesting.

Anyways, those are my current thoughts on CCSVI.

NHE
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Postby CureOrBust » Sat May 16, 2009 7:25 pm

I did a search out of interest on "Hilarescere" and found the following by accident; was off line for a while, so it may be common knowledge.

http://www.aan.com/annualmeeting/search/index.cfm?fuseaction=disclosures.home&letter=Z

Paolo Zamboni
(Science Program)

Dr. Zamboni has received research support from Hilarescere Foundation, Johnson & Johnson, and BSN.

So, by the looks, pharma may not be totally uninvolved, and hey, someone has to make stents and gadolinium.
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Postby chrishasms » Sat May 16, 2009 8:13 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 11:44 am, edited 1 time in total.
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Postby mrhodes40 » Sun May 17, 2009 4:47 pm

Hi NHE,
I am sorry; I did put snarky alert on that section of my post! I'm just expressing myself :oops:

I agree that Opexa did uncover several target antigens however, not that many MSers had MRTC.... My neuro who was running a trial in is large MS clinc was very disappointed that it was very clearly not pathognomic. In fact when I poke with him he said that in thier clinic they were finding only a 10% minority with them...I beleive I read later materials that suggested it was more like 40-50%, but certainly ont all.

That having been said, perhaps the reason for that is that only a limited number of people actually respond to this anomaly CCSVI with autoimmune "triggering".

But that assumes that what is true is that those MRTC were NOT useful in the process of cleaning up the dead oligodendrocytes/myelin and that the only characterization that can be drawn form thier presence is autimmunity rather than normal activation in a necrotic situation. The main point that MUST be understood is that considering the venous issue the area is damaged by that: it is not healthy tissue. It is normal for the body to clean up necrotic tissue, that is a normal immune function.

I also agree with your idea of the body trying to self regulate in the case of autoimmunity, the true autoimmune diseases like EAE are self limiting. So is rheumatic fever--by "true" I mean a case where there is an antigen that is attacking healthy self tissue and causing damage on its own. In this case the body is cleaning up myelin, no doubt, but it is dead myelin that was damaged from this issue....the immune system did not go to a healthy brain and attack it for no reason.

The question remains if these t cells would attack and damage myelin that is healthy, I believe there will be considerable effort going into solving that exact question.

I am greatly encouraged by the fact that Dr Z has some people he has treated long ago, surely we will hear if these people seem to need additional support to remain healthy.

My personal opinion is that once the body is free of the repeated onslaught of damage from the venous issue, the body will rapidly self regulate with little if any additional support, but it may be that people will use immune suppression for a time too. I absolutely positively do not know that answer to that.

I do know that in the case of spinal cord injury and also stroke, neother of which are immune caused, immune suppression is helpful in limiting the activity of the immune system which can cause extra damage of its own in the attempt to repair. It may be that THAT is what is needed here too.

I'll be really surprised if we need anything like Campath lifelong however...

That having been said I was very VERY disappointed about the tovaxin trial. I liked it a lot as I felt it the safest thing offered in many years...

I hope if we need somthing that is good enough--or that copaxone is fine.

Wouldn't it be cool if this CCSVI treatment made copaxone as effective in people as it is in mice--who are cured by the stuff???

I am BTW taking cop and will continue at least for a while..

We actually all agree!! :D :D I'll start a new thread on being here in stanfor too
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Postby CureOrBust » Mon May 18, 2009 3:27 am

IF this pans out as we all hope and wish and pray, I see the next step being in repair and regeneration medications. Anti Lingo or whatever it was, and Jennifer Anne Somerfields' investigation into why people on Campath experience such improvements.

A series of laboratory techniques will be used to determine if the cells of treated patients work to enhance nerve growth. By clarifying the effect of Campath-1H on nerve growth and repair, this work will contribute to the development of future treatments for multiple sclerosis.

http://www.neurological.org.nz/html/grant.php?documentCode=5090

Who knows what it may involve and for how long. This disease has left many of us with lasting disabilities, that I don't think will clear up too quickly by stopping the disease progress; but I would love to be proved wrong on that one.
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Postby mrhodes40 » Mon May 18, 2009 6:42 am

Man, Cure I agree. I do not expect much recovery of function other than perhaps a little bit. Overall I expect to feel better and to stop progressing: I currently have a leg that is totally stiff all the time I try to walk and a foot that drops on the same leg--deadful for walking it trips me all the time....and a hand on that side that is really clumsy which is why I type so badly, my hands are ot of synch so the letters get mixed up.

The other hand and leg are normal. If I can save those, that will be HUGE. I am independant and will plan to remain so with that, my terror like everyne with MS is what "could" happen.

But regenerative things are coming a bunch of things are in trial for stroke right now that may help us too and I hope we can partake of those!

cure said
A series of laboratory techniques will be used to determine if the cells of treated patients work to enhance nerve growth. By clarifying the effect of Campath-1H on nerve growth and repair, this work will contribute to the development of future treatments for multiple sclerosis


I'm glad you mentioned that work goiing on, how interesting. The campath improvements are really intriguing and I feel certain that if this new idea is proven then the results of those trials will be looked at with brand new eyes. There is going to be a lot of new research hapening.
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 peekaboo » Mon May 18, 2009 7:23 am

I was researching tovaxin on the forum when i read this fom Ihavems-com wrote

Some things to consider if your are in the Tovaxin trials:
1. It isn’t an attack unless it lasts for more than 4 days.
2. I will not consider my EDSS to have changed unless it stays changed for 2 or more consecutive assessments.
3. I will remind myself that the hope for Tovaxin is to stop the attacks. Any restoration of lost functions is up to my body.
4. I will not expect to sense any difference until at least 100 days after my first injection of the “real stuff”, and it is possible that it might take 4 treatments plus 10 days for my immunity to get up to a sufficient level to fend off attacks. http://www.thisisms.com/ftopict-5631.html
5. If I get some lost function back and I lose it again, I won’t think that I am having an attack but rather, that the body needs to do some more restoration to the nerves that control that function. But, if I get back some lost function and that restoration lasts for more than 8 weeks without interruption, it is for real, and in that case, if you lose the regained function after 8 continuous weeks of having it, discuss that with your neurologist.
6. There may be a point during the 100 days that you sense things are starting to get better. Use the day before you get that feeling as your baseline. No matter what ups and downs you encounter going forward, if you don't drop below your baseline, Tovaxin is working.
7. This is a patient-specific vaccine and there are a lot of other patient-specific rules. And most important of all, results will vary
http://www.thisisms.com/ftopict-4133.html
_________________
Best regards, Tim

Some things to consider if your are in the Tovaxin trials:
1. It isn’t an attack unless it lasts for more than 4 days.
2. I will not consider my EDSS to have changed unless it stays changed for 2 or more consecutive assessments.
3. I will remind myself that the hope for Tovaxin is to stop the attacks. Any restoration of lost functions is up to my body.
4. I will not expect to sense any difference until at least 100 days after my first injection of the “real stuff”, and it is possible that it might take 4 treatments plus 10 days for my immunity to get up to a sufficient level to fend off attacks. http://www.thisisms.com/ftopict-5631.html
5. If I get some lost function back and I lose it again, I won’t think that I am having an attack but rather, that the body needs to do some more restoration to the nerves that control that function. But, if I get back some lost function and that restoration lasts for more than 8 weeks without interruption, it is for real, and in that case, if you lose the regained function after 8 continuous weeks of having it, discuss that with your neurologist.
6. There may be a point during the 100 days that you sense things are starting to get better. Use the day before you get that feeling as your baseline. No matter what ups and downs you encounter going forward, if you don't drop below your baseline, Tovaxin is working.
7. This is a patient-specific vaccine and there are a lot of other patient-specific rules. And most important of all, results will vary
http://www.thisisms.com/ftopict-4133.html
_________________
Best regards, Tim



much of this can apply to the few of us that will be going to stanford.
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Postby Sharon » Mon May 18, 2009 9:43 am

Recieved the following email from the Hilareshere Foundation

We write you as the Organizing Secretariat of Hilareshere Foundation.
We inform you that the web site will be update in two weeks.

Please don't hesitate to contact us if you need any further information.
Thank you for your kind attention,

Best regards,

Cristiana Canuto
Laboratorio delle Idee
Via Santo Stefano 32
40125 Bologna (BO)



Two more weeks - o'boy, I can't wait to hear what the neuros are going to be saying.

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Postby zap » Mon May 18, 2009 10:21 am

CureOrBust wrote:
Dr. Zamboni has received research support from Hilarescere Foundation, Johnson & Johnson, and BSN.


Hmmm, or perhaps Zamboni is an agent for big pharma, and his 100 patient study will be manipulated to discredit the notion of a vascular connection once and for all, mwhahahaha ... OK, probably not. :lol:
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Postby cheerleader » Mon May 18, 2009 10:35 am

zap wrote:
CureOrBust wrote:
Dr. Zamboni has received research support from Hilarescere Foundation, Johnson & Johnson, and BSN.


Hmmm, or perhaps Zamboni is an agent for big pharma, and his 100 patient study will be manipulated to discredit the notion of a vascular connection once and for all, mwhahahaha ... OK, probably not. :lol:


Well, Johnson and Johnson also makes baby products...so maybe they're hoping more healthy MS patients can get busy and make some babies...

But seriously, it just took some googling...
J & J own Cordis http://www.cordis.com/ leaders in endovascular technologies.
And as a further disclosure, I've just googled and Dr. Michael Dake holds patents with Cordis. Don't know this for a fact, but he probably hooked them up, since Dr. Zamboni needed money for his research.

Yup, there is money to be made in them thar hills of CCSVI. Honestly, though...if an endovascular procedure can help heal MS, I really don't care who is making money off it. If it works, it's worth it. And it will cost money to diagnose and treat patients for CCSVI, and research dollars are appreciated. This will not change the facts of the research.

BTW...I'm not making any money promoting this research. And I NEVER will take a dime. That's a promise. Seeing my husband awake, alert, not in pain and healing....priceless :) Two years of Copaxone didn't do that, and Teva's spent alot more money on MS research than J & J ever will.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sun Jun 14, 2009 10:39 am

It is taking forever for them to get that web page up........

not that I am impatient mind you :oops:
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 Sharon » Sun Jun 14, 2009 2:30 pm

It is taking forever for them to get that web page up........

not that I am impatient mind you


I know, I know - Do you think they may be waiting 'till they get closer to the symposium on Monaco? I did email the Hilarescere Foundation last week as to the status - no reply yet.
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Postby cheerleader » Mon Jun 22, 2009 8:25 pm

Here's the website....stll under construction, but getting there....

http://www.fondazionehilarescere.org/pres_eng.html

cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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