IT/Buffalo study pub--significant improvement after PTA

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

Postby scorpion » Mon Aug 15, 2011 1:08 pm

Professor Alistair Compston of the University of Cambridge told the BBC:

[quote]“Eighty per cent of the genes that are implicated by the 57 hits are immunological. This shouts out that this is an immunological disease at the beginning. This is a very important confirmation.”[/quote]


It is great news that they seem to be getting to the bottom of the cause of MS.
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Postby the_r » Mon Aug 15, 2011 1:18 pm

What does it have to do with this thread though? :p
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Postby marcstck » Mon Aug 15, 2011 2:09 pm

MrSuccess wrote:.... over in the " drug pipeline " section of TIMS ..... Rainer has brought forth a very interesting gene therapy article.

what Mr.Success finds most telling was that these patients actually got much sicker - self described as the worst flu - ever in their lives ...

then the great results .

I believe this is called " herxing " ?

hmmmm ..... this has Mr.Success wondering if those few cases of pwMS reported as doing worse after CCSVI treatment .........
may be having a similar situation ?

Does this explain the singular case Dr.Zamboni reported ?

Either way ..... the gene therapy story for treatment of leukemia ....is certainly cause for excitement.

Note the similar situation experienced by these medical pioneers .... a lack of funding to explore and expand their great scientific work .....

Sound familiar ? :twisted:




Mr.Success


Herxing is a short way of referencing the Herxheimer reaction, which occurs during the treatment of chronic infections (such as syphilis, Lyme disease, etc.) with antibiotics. The action of the antibiotics leads to widespread death of the infectious agents, which release toxins into the blood, often resulting in the patient suffering an acute and severe worsening of symptoms. It was first observed when antibiotics were initially introduced in the treatment of syphilis.

As such, the Herxheimer reaction has nothing to do with gene therapy or CCSVI venoplasty. There may be some physiological explanation for the worsening of symptoms before benefit is seen in these cases, but it would entail an entirely different mechanism than a Herxheimer reaction.
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Postby Cece » Mon Aug 15, 2011 3:04 pm

luca75 wrote:Hi everybody,

my name is Luca I'm writing from Italy (Pisa) and I've just registered to this very interesting and stimulating forum.

Does anyone know something about the inital rate of relapses associated to the two groups ? I think it's importanto for the end sudy comparison to have homogeneus initial paramenters. Thank you !!!

I don't know the answer to this but wanted to acknowledge that it is a good question. Perhaps there is more on it in the full paper. Would love to read this one. To see the impact of CCSVI treatment on MS lesions is huge. It worked for nearly all the patients except one.

MRIs are expensive to include in study design but if results like this can be had, it could be an open-and-shut case in favor of CCSVI.

I've been considering my own CCSVI treatment a success even if it doesn't affect my MS relapses or progression, because I feel so much better and am seeing better. But if I can have it all, I will take it.

welcome, Luca!
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Postby Cece » Mon Aug 15, 2011 3:11 pm

marcstck wrote:As such, the Herxheimer reaction has nothing to do with gene therapy or CCSVI venoplasty.

There have been a few reports of patients with Lyme disease and CCSVI who, after CCSVI venoplasty, experience a severe Herxheimer reaction.

This would suggest that CCSVI venoplasty is as effective as antibiotics at reaching and killing Lyme? Maybe.

MrSuccess, I haven't had a chance to read the research you're mentioning, but I will when I can, it sounds interesting. I would not think the flu would be herxheimer if only because it sounds like it was across the board in all subjects, not just one or two misdiagnosed subjects who really have Lyme disease. But we have from the beginning had some patients describing really bad flus after CCSVI venoplasty, which I always put down to being from the exposure to new bugs when travelling, but who knows.
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Postby marcstck » Mon Aug 15, 2011 4:07 pm

Cece wrote:
marcstck wrote:As such, the Herxheimer reaction has nothing to do with gene therapy or CCSVI venoplasty.

There have been a few reports of patients with Lyme disease and CCSVI who, after CCSVI venoplasty, experience a severe Herxheimer reaction.

This would suggest that CCSVI venoplasty is as effective as antibiotics at reaching and killing Lyme? Maybe.



Doubtful, because the Lyme spirochete is very difficult to kill. It often takes a combination of antibiotics, and very long-term antibiotic care to get rid of the Lyme bacteria, which takes on different forms in the course of its lifetime.

I suppose one could hypothesize that increased blood flow through the CNS would allow greater surveillance by the immune system, which might then attack the spirochetes on its own. Then again, using the same logic would lead one to deduce that MS symptoms would flare after CCSVI treatment, given the same increase in immune response. Of course, this is not what we've experienced/seen described…

BTW, a Herxheimer reaction can manifest as extreme flulike symptoms.
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Postby Cece » Mon Aug 15, 2011 4:13 pm

What if the increased blood flow resulted in better waste removal? Would there be enough 'lyme waste' to provoke a herxheimer reaction?
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Postby scorpion » Mon Aug 15, 2011 6:04 pm

the_r wrote:What does it have to do with this thread though? :p


I don't know because that is not what I wrote. You will have to ask the moderator who deleted what I said.
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Postby Lyon » Mon Aug 15, 2011 6:09 pm

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Last edited by Lyon on Sun Nov 20, 2011 3:54 pm, edited 1 time in total.
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Postby cheerleader » Mon Aug 15, 2011 6:38 pm

This thread is on the 15 patient combined Italian/American PTA trial. There were 2 groups, delayed and immediate treatment, as well as a control group. PTA showed significant improvement in MS symptoms and slowed relapses and lesions.

For a look at the Compston genetic study and Dr. Ferlini's breakdown of CCSVI and MS genes on the HLA locus already associated with MS, here's some more info.
http://www.thisisms.com/ftopicp-173735.html#173735
Perhaps the genetic discussion could migrate there?
Again, no need to argue or name call.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Mon Aug 15, 2011 6:50 pm

cheerleader wrote:This thread is on the 15 patient combined Italian/American PTA trial. There were 2 groups, delayed and immediate treatment, as well as a control group. PTA showed significant improvement in MS symptoms and slowed relapses and lesions.

For a look at the Compston genetic study and Dr. Ferlini's breakdown of CCSVI and MS genes on the HLA locus already associated with MS, here's some more info.
http://www.thisisms.com/ftopicp-173735.html#173735
Perhaps the genetic discussion could migrate there?
Again, no need to argue or name call.
cheer


Thanks Cheer. We will look at the study of 15 people that have shown significant improvements after being treated with angioplasty. Please keep in mind"
One-third of the genes identified in the study are also associated with other autoimmune diseases like Type 1 diabetes and Crohn’s Disease.
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Postby MrSuccess » Mon Aug 15, 2011 8:51 pm

hi marc - I already knew '' herxing '' was a Lyme term. And of course Lyme has been confused-linked to MS ..... which in turn is confused-linked to CCSVI ........ and then some think MS and antibiotics are the way to go.

Yes , Cece ..... that gene therapy story with leukemia is fascinating ....... much like our CCSVI voyage . Many identical problems ..... and like CCSVI , it appears the solutions , do not involve Big Pharma.

I do hope the unfortunate singular pwMS in Dr.Zamboni's latest study get's the best care possible.

As much as I admire Dr.Zamboni .... I must not forget that this is a TEAM effort ....... and this latest research effort list's those on that all-star team ...... which include THREE neurologist's ....... Dr.Silvi.... Dr. Zivadov ....Dr.Bianca-Weinstock .......

...... and all those wonderful people Dr.Zamboni has included in his historic discovery - CCSVI-. ...... yet remain nameless.They work quietly in the background.

Dr.Sclafani say's 2 years ......... Mr.Success say's less-than ..........




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Postby Cece » Mon Aug 15, 2011 9:56 pm

MrSuccess wrote:I do hope the unfortunate singular pwMS in Dr.Zamboni's latest study get's the best care possible.

And what an opportunity to discover what is different about some of us with MS from others with MS. It is such a variable varied disease. Cheer, I think, suggested that different combinations of venoplasty and/or immune modulators might work for different people. That singular pwMS might need to be on Tysabri but maybe some of the people on Tysabri might just need CCSVI venoplasty.

As much as I admire Dr.Zamboni .... I must not forget that this is a TEAM effort ....... and this latest research effort list's those on that all-star team ...... which include THREE neurologist's ....... Dr.Silvi.... Dr. Zivadov ....Dr.Bianca-Weinstock .......

...... and all those wonderful people Dr.Zamboni has included in his historic discovery - CCSVI-. ...... yet remain nameless.They work quietly in the background.

Stuff like this is why I like you. Completely agree.
btw, typo, it's Dr. Salvi, not Dr. Silvi.
Salvation, not woods.
Dr.Sclafani say's 2 years ......... Mr.Success say's less-than ..........

He previously said one year, now it's gone up to two years, either way there is an August a year or two out from now (or some month in between) in which I expect some serious celebration.

Scorpion and Lyon, y'all are invited too, I think once proven is proven, this will all be bygones.

Now that is something to look forward to, barring incomprehensible negative study results in a large scale well conducted trial. :)

Cheer, I am terrible at staying on topic, I blame it on the MS because who can remember a train of thought or thread, but I agree that the topic of this thread is the impressive results from Dr. Zivadinov and Dr. Zamboni and their team, particularly with MRI lesion improvements, which is a preliminary finding well worth further research and duplication.
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Postby MrSuccess » Mon Aug 15, 2011 11:07 pm

[ Mr.Success standing at the black board ..... ]

Dr.Salvi Dr.Salvi Dr. Salvi

Dr.Salvi Dr.Salvi Dr.Salvi

Dr.Salvi Dr.Salvi Dr.Salvi

Dr.Salvi Dr.Salvi Dr.Salvi


whew ..... I've learned my lesson ! :wink:

LOL ....... thank's kid ........ you alway's make me smile !




Mr.Success [ - a rapscallion if there ever was one ...... - :P ]
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Postby Lyon » Tue Aug 16, 2011 2:34 am

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Last edited by Lyon on Sun Nov 20, 2011 3:54 pm, edited 1 time in total.
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