DrSclafani answers some questions

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

Postby Brainteaser » Fri Apr 08, 2011 8:10 pm

drsclafani wrote:so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief

This sounds magnificent, and real progress! Now, how to get other doctors doing CCSVI on board and what to do about hyperplasia?
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Postby Cece » Fri Apr 08, 2011 8:34 pm

tzootsi, that caught my attention! If you follow tzootsi's link, quick summary is that Vitamin D3 is bad after an endovascular procedure (if you are a rat) because it increases the amount of intimal hyperplasia. Eeep.

Brainteaser wrote:
drsclafani wrote:so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief

This sounds magnificent, and real progress! Now, how to get other doctors doing CCSVI on board and what to do about hyperplasia?

Wonderful news.

With hyperplasia, isn't leaving it alone currently the best option? These veins may only be taking a very small amount of flow, but we need whatever flow we have, and the track record for success is at null as far as I know.

I am looking for bestadmom's countdown thread, I do not see one anywhere! I am counting down anyway. Full of hopes. :)
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Postby Johnson » Sat Apr 09, 2011 12:59 am

tzootsi wrote:Dr. Sclafani, what do you make of this? Needless to say most CCSVI'ers are taking lots of D3.

http://onlinelibrary.wiley.com/doi/10.1 ... 0/abstract

Sorry to butt in Doc.

I have been mostly holding my counsel on this, as it can be a contentious topic.

I was a quiet advocate of Vit. D supplementation long before popular medicine got hold of it I took 10,000 - 20,000 IU a day for quite a few years - before I cut it out entirely last September. There were times when I took 100,000 IU in a single dose to kill oncoming cold/flu I was getting worse and worse vis-a-vis "MS" symptoms, and thought that I had gone SP by March 2010.

I embarked on an anti-biotic/immune enhancing protocol at the same time that I cut out all D. I am feeling better than I have felt for years (other than for the month or so following venoplasty in Poland in June 2010, and still pretty shitty), and no longer think I am SP, but back to RR. The rationale that convinced me to give up Vit, D started at http://www.bacteriality.com. The biggest thing that struck me was the idea of blocked Vit. D receptors, making supplementation useless, or even toxic. Make up your own minds on it though - I am not giving advice, just relating my own experience.

It is most interesting about D contributing to intimal hyperplasia, and might be explicative of some of the problems following PTA - as folks dutifully take supplementation. Having had PTA a couple of times (and soon, for a 3d time with our good Dr, Sclafani), I am sure that CCSVI is very involved in our process and progress, but there is more to it. I have denied the auto-immune angle since I was Dx'd 18 years ago, and believe that it is a suppressed immune system. I have not been convinced of the congenital hypothesis either.

I don't have the wit to elaborate further at present. The reading at the link above will elucidate far better than I might. The links to papers on Vit. D are on the right of the page.

For what it is worth; I have not been sick in any way (other than "MS" stuff - and much less of that) since I cut out Vit. D and started A-Bx (minocycline) and olmesartan.
My name is not really Johnson. MSed up since 1993
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Re: Vitamin D3 and hyperplasia

Postby NHE » Sat Apr 09, 2011 1:54 am

Cece wrote:tzootsi, that caught my attention! If you follow tzootsi's link, quick summary is that Vitamin D3 is bad after an endovascular procedure (if you are a rat) because it increases the amount of intimal hyperplasia. Eeep.


That study looked at arteries. A good question would be does vitamin D3 cause the same problem in veins?


NHE
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It's not the D3 that we take

Postby dk » Sat Apr 09, 2011 5:04 am

Read Cheer's reply on tootzi's thread
http://www.thisisms.com/ftopict-16158.html

She explains it was a different type of vitamin D given to the mice for this study than what we take and she has a link to a very recent article about the importance of D to the health of veins. Ashton Embry has done tons of research on vitamin D and I trust his advice as well. I will continue to take it. (Sorry Johnson ! ) :)
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The Power of Vitamin D

Postby Squeakycat » Sat Apr 09, 2011 5:18 am

NOT RELEVANT, JUST FOR FUN

Learned first hand how powerful Vitamin D can be.

We treat our cats with chronic renal failure with a bioactive form of Vitamin D3 known as Calcitriol and had been doing that for years when we started a geriatric, diabetic, spayed, female LabraDork Retriever on a drug for urinary incontinence, imipramine which is a human tricyclic antidepressant.

Within hours of starting Anna, the diabetic dog on imipramine, Poofy and Simba, two neutered, male feline renal boys started mounting her and never stopped, except when I stopped their Calcitriol during periods where I had to adjust the dose. This behavior continued right up until the day Poofy and then later Simba died from renal failure.

Neither cat liked dogs. In fact, Poofy was downright hostile to them, but not when it came to Anna once she started imipramine.

Since we have lots of other male cats who showed no interest in Anna, and the behavior stopped when we stopped the Calcitriol, it is pretty clear that Calcitriol was having some effect.

Of course, imipramine was part of the equation. It is a close cousin of Chlorimipramine, another human tricyclic antidepressant which is famous for causing some women to have an orgasm when they yawn.

YouTube of Monsieur LePoof in Action.

END OF OFF TOPIC COMMENT
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Postby Bethr » Sat Apr 09, 2011 8:58 am

I'm with you Johnson :)
I decided not to supplement Vit.D because of the studies on iron overload and vitamin D.
People with iron overload have low Vit.D levels. In studies it showed that when iron levels were reduced, Vitamin D levels went up by 50%.
Thanks for the website link, it's a good read. Interesting on the VDR issue. It would explain a lot of "women" things.
http://autoimmunityresearch.org/preprints/ProalAnnals2009Preprint.pdf
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Postby NZer1 » Sat Apr 09, 2011 4:01 pm

Hi Dr.S, Is it possible that the vein (wall) size where it has 'stretched' above a valve problem could be or end up like vasculitis, or become an area of 'diseased wall' that could have an effect on the BBB?
I have just been catching up on the posts over the last 10 or so pages and notice that the vein wall damage is a problem that is being well thought through and the use of IVUS for people with the skill to read it will be priceless.
If the vein walls have stretched in the jugulars and azygos then what is happening in the vein walls within the brain. Is it likely that the BBB leakage is happening within the brain because of the structure of the vein/brain?
No room to expand other than fluid space in the CSF?
The talk about hydrocephalus is very compelling and something I believe has been mentioned by another Dr. on TiMS' some time ago.
If the blood cannot 'leave' the skull naturally, there will be signs of pressure build ups in the skull itself?
It seems that the backup of blood is occurring prior to the jugulars?
The mixed results from treatments could be an indication of a problem that is within the skull *and also external of the skull (two parts to the same problem)?
The diet change for most but not all have benefit when there is disease of the vein wall progressing to restrict the blood flow as well as valve and internal brain wall issues restricting flow?

What do you think of Dr Zamboni's collar?
Is it going to be useful other than as a dx tool to use on naysayers?

We have recently been made aware that we have a Phlebologist, Vascular Surgeon, Dunedin, New Zealand
André M van Rij is Professor of Surgery at the Dunedin School of Medicine University of Otago where he directs the Vascular Research Unit. His research has focused on venous disease and the biology of varicose vein recurrence and venous thrombosis. His translational research bridges new basic research into the venous clinic. Professor van Rij is a vascular surgeon and President of the NZ Association of General Surgeons. Professor van Rij is the Deputy Chancellor of the Australasian College of Phlebology.
The Professor has just attended the Melbourne Australia conference where Paulo was speaking!

*****Have you heard of Prof. van Rij?


Regards Nigel.
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Postby NZer1 » Sat Apr 09, 2011 4:04 pm

To Happypoet, I am so pleased to hear of your successes, you deserve it!!!!!!!!!
Nigel, life is good!
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Postby drsclafani » Sat Apr 09, 2011 4:40 pm

Brainteaser wrote:
drsclafani wrote:so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief

This sounds magnificent, and real progress! Now, how to get other doctors doing CCSVI on board and what to do about hyperplasia?


time is brain.....time is knowledge
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Postby drsclafani » Sat Apr 09, 2011 4:42 pm

Cece wrote:tzootsi, that caught my attention! If you follow tzootsi's link, quick summary is that Vitamin D3 is bad after an endovascular procedure (if you are a rat) because it increases the amount of intimal hyperplasia. Eeep.

Brainteaser wrote:
drsclafani wrote:so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief

This sounds magnificent, and real progress! Now, how to get other doctors doing CCSVI on board and what to do about hyperplasia?

Wonderful news.

With hyperplasia, isn't leaving it alone currently the best option? These veins may only be taking a very small amount of flow, but we need whatever flow we have, and the track record for success is at null as far as I know.


anticoagulation and antiplatelet therapy could help.
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Postby drsclafani » Sat Apr 09, 2011 4:43 pm

Cece wrote:
I am looking for bestadmom's countdown thread, I do not see one anywhere! I am counting down anyway. Full of hopes. :)


another round of pressure :cry:
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Postby drsclafani » Sat Apr 09, 2011 4:57 pm

Johnson wrote: Having had PTA a couple of times (and soon, for a 3d time with our good Dr, Sclafani),


more pressure . :cry:
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Re: Vitamin D3 and hyperplasia

Postby drsclafani » Sat Apr 09, 2011 4:59 pm

NHE wrote:
Cece wrote:tzootsi, that caught my attention! If you follow tzootsi's link, quick summary is that Vitamin D3 is bad after an endovascular procedure (if you are a rat) because it increases the amount of intimal hyperplasia. Eeep.


That study looked at arteries. A good question would be does vitamin D3 cause the same problem in veins?


NHE


yes, if i were in the university i might take some energetic student to work on this

i suspect that intima would react similarly
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Postby drsclafani » Sat Apr 09, 2011 5:06 pm

NZer1 wrote:Hi Dr.S, Is it possible that the vein (wall) size where it has 'stretched' above a valve problem could be or end up like vasculitis, or become an area of 'diseased wall' that could have an effect on the BBB?
I have just been catching up on the posts over the last 10 or so pages and notice that the vein wall damage is a problem that is being well thought through and the use of IVUS for people with the skill to read it will be priceless.
If the vein walls have stretched in the jugulars and azygos then what is happening in the vein walls within the brain. Is it likely that the BBB leakage is happening within the brain because of the structure of the vein/brain?
No room to expand other than fluid space in the CSF?
The talk about hydrocephalus is very compelling and something I believe has been mentioned by another Dr. on TiMS' some time ago.
If the blood cannot 'leave' the skull naturally, there will be signs of pressure build ups in the skull itself?
It seems that the backup of blood is occurring prior to the jugulars?
The mixed results from treatments could be an indication of a problem that is within the skull *and also external of the skull (two parts to the same problem)?
The diet change for most but not all have benefit when there is disease of the vein wall progressing to restrict the blood flow as well as valve and internal brain wall issues restricting flow?

What do you think of Dr Zamboni's collar?
Is it going to be useful other than as a dx tool to use on naysayers?

We have recently been made aware that we have a Phlebologist, Vascular Surgeon, Dunedin, New Zealand
André M van Rij is Professor of Surgery at the Dunedin School of Medicine University of Otago where he directs the Vascular Research Unit. His research has focused on venous disease and the biology of varicose vein recurrence and venous thrombosis. His translational research bridges new basic research into the venous clinic. Professor van Rij is a vascular surgeon and President of the NZ Association of General Surgeons. Professor van Rij is the Deputy Chancellor of the Australasian College of Phlebology.
The Professor has just attended the Melbourne Australia conference where Paulo was speaking!

*****Have you heard of Prof. van Rij?


Regards Nigel.


nigel

this is too many thoughts in one email. it is hard to keep track of for me, and presumably for the other readers.

can you separate the thoughts into separate posts

thanks

DrS
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