immunomodulatory therapies after Liberation

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

immunomodulatory therapies after Liberation

Postby Asher » Tue Apr 13, 2010 4:12 am

"Dr. Zamboni suggested that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that it is still not proven whether CCSVI is a cause of MS or related to MS in some other manner. Dr. Zamboni also noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgical procedure".

Is this indeed recommended, or is this just a politically correct statement by Zamboni :?:
User avatar
Asher
Family Elder
 
Posts: 336
Joined: Sun Jan 31, 2010 4:00 pm

Advertisement

Insufficient Evidence To Stop Other Therapy

Postby MarkW » Wed Apr 14, 2010 7:38 am

Hello Asher,
MS is a very complex multifactorial disease. It is entirely logical to stay on other therapies which are helping your MS symptoms. At this time there is insufficient evidence to stop other therapies once you have had CCSVI therapy. My guess is that CCSVI is part of the MS story because some pwMS do not have blocked veins. Why are you trying to overturn Prof Zamboni's words without evidence ?

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1122
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Postby Billmeik » Wed Apr 14, 2010 7:51 am

so lets say you have a sliver in your hand that's got all inflamed and red.

The crabs kind of say "the problem is the inflammation let
's see if we can get rid of the red."

ccsvi tries to take out the sliver.


really treating the red makes MORE sense once the sliver has gone. It's just, well say it was a real sliver and the doc gave you antibiotics, that would work.

but the crabs and the auto immune theory kind of say 'that person is getting red and inflamed because their immune system is too strong'

medicines that make your immune system weaker aren't medicines, they are mild poisons.

it's definitely a good idea to take a medicine but would antibiotics work?
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

MS is complex and multi-factorial

Postby MarkW » Wed Apr 14, 2010 8:12 am

Hello Billmeik,
Antibiotics work for some pwMS, see www.CPn Help.org for info.
Interferons work for some pwMS, maybe 30-40%. The complexity of MS says we do not know why some therapies work for some pwMS and not others. It will probably take years to work out why some pwMS do not have blocked veins.
In the meantime use therapies which work for you.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1122
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Postby Asher » Wed Apr 14, 2010 11:20 am

MarkW, I'm not "trying to overturn Prof Zamboni's words without evidence". I am on the waiting list for the procedure and I was hoping to also be liberated from the dependancy of what I consider to be poison. Thanks for your clarification, I was sincerely puzzled.
User avatar
Asher
Family Elder
 
Posts: 336
Joined: Sun Jan 31, 2010 4:00 pm

Postby MaggieMae » Wed Apr 14, 2010 11:27 am

Very good question Asher. Many people will be asking the same and I for one did not think you were trying to cause any problems - just asking for clarification. Makes me wonder too.
User avatar
MaggieMae
Family Elder
 
Posts: 381
Joined: Wed May 23, 2007 3:00 pm
Location: Pennsylvania

Postby Algis » Wed Apr 14, 2010 10:09 pm

Let's say (wild thought) that the immune system attack the myelin bond with iron because of the iron that percolated from veins. With the "procedure"; further supply of wild iron is suppressed; but it does not get rid of the existing situation in the brain. Therefore; even after CCSVI fixed; immune system would still attack the myelin - thus the need to (momentarily?) keep the immuno-suppressants meds.

My tuppence...
User avatar
Algis
Family Elder
 
Posts: 782
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Postby costumenastional » Wed Apr 14, 2010 11:59 pm

i do not believe that Zamboni's wife is on Copaxone. i believe he is saying what he must say for reasons Asher described.
even if she is on meds she is probably not on Copaxone since this crap works only for a couple of years. i have been told by numerous neurologists that it's effect (if any) tends to fade away once the patients organism gets used to it. this goes for interferons too. why do you think we have to change crabs every few years?
why do you think Tysabri, Campath and other, real drugs have been developed?
since i know all these stuff, i am pretty sure Zamboni knows even better.
i am not saying that one sould stay off drugs due to the liberation procedure. all i am saying is that crabs effect (if any) dont last otherwise Zamboni would not have been searching for a real cure.

if the liberation works for someone i take it as an indication that his/her problem is solved. Zamboni himself sayed that once some patients were liberated they avoided the use for cortisteroids for their relapses.
i dont know what copaxone would provide further in such cases.

on the other hand, for people that have had no relief after liberation it;s only logical to stay on whatever crap they are on since they simply have no other choice.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Insufficient Evidence To Stop Other Therapies

Postby MarkW » Thu Apr 15, 2010 2:37 am

I use words very precisely and have been called a pedant. So here goes again:

MS is a very complex multifactorial disease. It is entirely logical to stay on other therapies which are helping your MS symptoms. At this time there is insufficient evidence to stop other therapies once you have had CCSVI therapy or if you are waiting for CCSVI therapy.

Prof Zamboni repeated his recommendation to stay on immodulatory therapy after undergoing CCSVI therapy on 14 April 10. Changing this advice would take years of research, in my view.

My opinion remains:
- there is a correlation between CCSVI and MS. PwMS must be allowed to get tested for CCSVI.
- if CCSVI is identified, then pwMS must be allowed to undergo treatment for the symptom CCSVI, provided they are fully appraised of the risks involved.

Trust this is clear.
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1122
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Postby Asher » Thu Apr 15, 2010 3:30 am

Thank you Mark, I’m sure this question lingers in many people’s minds.
Last edited by Asher on Thu Apr 15, 2010 3:36 am, edited 1 time in total.
User avatar
Asher
Family Elder
 
Posts: 336
Joined: Sun Jan 31, 2010 4:00 pm

Postby costumenastional » Thu Apr 15, 2010 3:36 am

Mark, i heard you the first time friend.

I really think that at this point noone really knows what to expect from the liberation treatment whatsoever. Having that said, we all know what to expect from multiple sclerosis and the current therapies.

I am fully convinced that if one indeed has been shown to have SEVERE stenosis across the main veins that drain the CNS, he/she should get treatment (angioplasty) in order to correct the blood flaw regardless of MS.
As too good to be true CCSVI may seem, there is some logic in it. And it beats immunosupresion/modulation which admitedly doesnt work too good and has potential devastating side effects.

My doppler showed serious flow issues in both my jugs. I will travel to Bulgaria soon and if Professor Grozdinski tells me that there is a problem (or more) that require stent placement i will surely go for it. I am certain that a doctor of that magnitude knows veins better than we do. To be honest, i could have angioplasty in Greece but i have reasons to believe that going to Bulgaria is better. I should also point out that out of hundreds of stent that have already been placed, only ONE made serious damage so far.
I really cant deny a stent or two because Zamboni says WHAT HE HAS TO SAY. Both he and Zivadinov are playing the PR game the best way they can. There is a war going on.

I have had a huge dose of campath 1 H upon diagnosis about one and a half years ago but still i am deteriorating. I wont do that to my body ever again. Neither i will take shots of some protein that noone knows if and how it helps. I have not had any more relapses since chemo (thank God) but i feel like shit most of the time. The hypothesis is that since my t cells are gone for good relapses cannot take place. But axons are still dying for SOME reason...
So, i HAVE to wonder: if Zamboni is right it well explains why my brain is dying and i have to do something about that.

Just a silly question: IF CCSVI IS REALLY A PROBLEM SHOULD SOMEONE WAIT UNTIL THIS IS PROVEN??? IF CCSVI IS REALLY A PROBLEM WHAT CAN ANY TYPE OF DRUG CAN REALLY OFFER?
AND MOST IMPORTANT: IS IT A FACT THAT 90% OF MS PATIENTS GO DOWN THE SLOPE WHATEVER THEY DO OR NOT?

What do i really know? Nothing. Who can i trust?

Patients that get better after liberation. It is a risk that some of us are wiling to take while others are not. In any case, it all comes down to this:
it will take years for the liberation treatment to become mainstream and i really dont think that time is on my side. For any of us that feels different i can only say that i am happy for him/her.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby Billmeik » Thu Apr 15, 2010 6:59 am

It will probably take years to work out why some pwMS do not have blocked veins.



this is an interesting one to me. the guy from boston yesterday spoke it like revealed truth that only half of ms patients have ccsvi. Really this flies in the face of zamboni and simka's numbers. I think that ziv and a few others just don't have the imaging dialed yet. Otherwise Most people with MS will have an abnormality.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby Asher » Mon Apr 19, 2010 8:56 am

Here is Zamboni's full answer:

http://www.youtube.com/watch?v=_0bDdwbtdvg

"people that did not take medication achieved the same reslts as those who did".
User avatar
Asher
Family Elder
 
Posts: 336
Joined: Sun Jan 31, 2010 4:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users