RE: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic enzymes, venous stenosis

[Guest guest]

Thankyou so much for sharing these with the group!!

I've watched them on Facebook, but haven't posted them here as yet - thankyou

for beating me to it!!

He is such a good researcher and I've been as thankful for his

help/thoughts/'ramblings' (lol) as I have Joan's information shared with

everyone in 'CCSVI in Multiple Sclerosis' on Facebook.

You're so right about the internet and our groups - I am so thankful for the

intelligence of members of these groups and their shared good will and

fascination for what makes the big difference - the details! lol

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: cluff_mc@...

Date: Sun, 3 Oct 2010 11:00:29 +0000

Subject: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

I saw this and thought that it should be brought to peoples attention, it may

ring bells with people or offer up more info that makes sense on a personal

level..

[Guest guest]

I`ve heard from a few sources that the CCSVI treatment often works well

but that in nearly all cases it has to keep being redone and that it is

best to wait until more is known. I`d love to know peoples views on

this.

judith

________________________________

________________________________

From: mscured [mailto:mscured ] On Behalf

Of

Sent: Sunday, October 03, 2010 5:50 PM

To: MSCured

Subject: RE: CCSVI & MS: FIbrin, Sleep apnea, systemic

proteolytic enzymes, venous stenosis

Thankyou so much for sharing these with the group!!

I've watched them on Facebook, but haven't posted them here as yet -

thankyou for beating me to it!!

He is such a good researcher and I've been as thankful for his

help/thoughts/'ramblings' (lol) as I have Joan's information shared with

everyone in 'CCSVI in Multiple Sclerosis' on Facebook.

You're so right about the internet and our groups - I am so thankful for

the intelligence of members of these groups and their shared good will

and fascination for what makes the big difference - the details! lol

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured <mailto:mscured%40yahoogroups.com>

From: cluff_mc@... <mailto:cluff_mc%40hotmail.com>

Date: Sun, 3 Oct 2010 11:00:29 +0000

Subject: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

I saw this and thought that it should be brought to peoples attention,

it may ring bells with people or offer up more info that makes sense on

a personal level..

[Guest guest]

Great post. There are a few things that I have in common with the guy who made

the video. I take serrapeptase because it digests scar tissue and apparently

fibrin. I take horse chestnut, a vasodilator. I take protealytic (pancreatic)

enzymes. And I smoke medical marijuana, less now because it makes me weak and I

prefer to be strong. I have also seen improvement. I'm not sick but I'm not

walking.

CCSVI is looking better to me after seeing this video.

>

>

> I saw this and thought that it should be brought to peoples attention, it may

ring bells with people or offer up more info that makes sense on a personal

level..

[Guest guest]

Hi Judith

Who have you heard that from?

It's incorrect I'm afraid to say, and is a bit of a broad assumption.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: jdm@...

Date: Mon, 4 Oct 2010 11:14:32 +0100

Subject: RE: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

I`ve heard from a few sources that the CCSVI treatment often works well

but that in nearly all cases it has to keep being redone and that it is

best to wait until more is known. I`d love to know peoples views on

this.

judith

________________________________

________________________________

From: mscured [mailto:mscured ] On Behalf

Of

Sent: Sunday, October 03, 2010 5:50 PM

To: MSCured

Subject: RE: CCSVI & MS: FIbrin, Sleep apnea, systemic

proteolytic enzymes, venous stenosis

Thankyou so much for sharing these with the group!!

I've watched them on Facebook, but haven't posted them here as yet -

thankyou for beating me to it!!

He is such a good researcher and I've been as thankful for his

help/thoughts/'ramblings' (lol) as I have Joan's information shared with

everyone in 'CCSVI in Multiple Sclerosis' on Facebook.

You're so right about the internet and our groups - I am so thankful for

the intelligence of members of these groups and their shared good will

and fascination for what makes the big difference - the details! lol

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured <mailto:mscured%40yahoogroups.com>

From: cluff_mc@... <mailto:cluff_mc%40hotmail.com>

Date: Sun, 3 Oct 2010 11:00:29 +0000

Subject: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

I saw this and thought that it should be brought to peoples attention,

it may ring bells with people or offer up more info that makes sense on

a personal level..

[Guest guest]

A young woman came into our store walking with a cane, so my mother asked her if

she had MS (after telling her about me). The woman said that she had a shunt

put in her neck and was in a wheelchair before the treatment. Now, of course,

my mom wants me to check into it. I surprised her by telling her all about it.

The woman had CCVSI in Tulsa but they are also doing it in Dallas and probably

all across the country. I lived in the Phoenix area for a long time. I miss

it!

>

>

> i've had ms symptoms for 30 years. i was diagnosed 19 years ago and on

8/27/2010 i received ccsvi treatment. it was by far the best thing i've ever

done for the disease. i was lucky to be able to drive to phoenix to the arizona

heart institute, have the procedure, then go home. it was covered by blue cross

and i'm feeling so much better. i'm still using my scooter and my recovery is

somewhat slow but it feels so much better than being ill all of the time. ccsvi

[Guest guest]

I got to wondering if stenosis causes mercury and other heavy metals, besides

iron, to pool in the body. I have an abundance of copper and though I haven't

been tested in a long time, I had an overload of mercury at one time. I had

aluminum show up in a hair mineral analysis. And is metal the only toxin that

gets blocked? Can this cause food intolerence and allergies?

>

> go for it...you won't regret it.

>

[Guest guest]

http://gme-surgical.com/Procedures/General-Surgeries/Multiple-Sclerosis/Liberati\

on-Treatment-for-CCSVI.html

This has a good diagram of how the blockage works (or doesn't wotk) and what the

Liberation treatment looks like.

[Guest guest]

Sorry for not trimming my last message all - I thought I had before sending but

after sending realised I hadn't.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

[Guest guest]

Sorry but I have many friends who have had the procedure done and have not

had the terrible effects or disappointing outcomes you have just described.

'This is by no means an attempt to dent the theory or denigrate those carrying

out the procedure but there some very optimistic and over zealous accounts out

there.'

The people who I know and who have SHOWN their successes with the procedure can

be nothing but optimistic! I couldn't call them over-zealous though.

As I have said many times before, this is NOT a miracle 'cure'. Our bodies need

time to heal and must be given the help to be able to do so without stress or

pressure. The YouTube videos posted on here regarding Ferratin etc should have

at least given people a bit more of an idea of what we're dealing with.

I think people have to realise that this procedure doesn't guarantee a miracle -

I don't expect to be running marathons a month afterwards.....but, I will be

eating correctly and working my way back up to fitness again gradually and

patiently. The success and difficulties our bodies encounter will be indiviual

to our own conditions.

Because of these differing and individual conditions, we must remember to be

realistic and not to get carried away without being overly negative either. It's

a bit of a tightrope to walk, but negativity and stress has ALWAYS been known to

worsen 'MS', and it now can be understood in refernce to CCSVI.

I'll still be sharing what I find which will help people and will, of course,

keep people up-to-date with MY progress on my personal journey to the procedure.

I've chosen to wait for the procedure to be carried out in the UK so I don't

have to fly to get the procedure done. Zivadinov I believe it was pointed out

that flying isn't a good thing in regards to CCSVI and restenosis etc. *shrugs*

My sharing information/educating anyone on CCSVI has ALWAYS been done from a

researcher's perspective as people have always been made aware - I have given

the examples that I have seen/read and researched/conversed with over the phone.

Having known about CCSVI for over two years now, I've had plenty of time to gain

a thorough understanding of the Ins and Outs of it - where things can go wrong,

the additional complications, the risks, the benefits etc etc.

As ALWAYS, CCSVI is something which some people are comfortable with and who

find great success with, or is something people are not comfortable with for

many of their own personal reasons. Some won't have the same success as others -

sadly, it's a given.

It's an 'each to their own' thing.

I think we each should be respectful of the other perspective and not denegrate

an individual for their beliefs/decisions in regards to the issue of CCSVI. It's

best to be supportive of each other and to be of reassurance and comfort to each

other as much as is possible through a computer screen.

It will, unfortunately, take time for the Medical

industry/Specialists/Professors/Doctors etc to work it all out (if ever) - until

then, in my situation, I'll take charge of what I CAN control which will help me

not to restenose. I'll stay realistically positive and optimistic as it has

helped me through 'MS' thus far - the negativity, stress, pressure and fear has

been what has made of MY differing situations worse since dx, so for me, it's

best to be smart about it......and to make sure that I always have my

'objective' researcher hat on.

, I sincerely wish your wife better results in any future CCSVI procedures

or tidy-ups.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: moochbay@...

Date: Wed, 6 Oct 2010 11:51:36 -0700

Subject: RE: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

Well in our experience there is a quite high rate of reversals to initial

upsurges. My wife had the procedure in Katowice six months ago and after a month

of improvement she now is considerably worse than pre-op.

[Guest guest]

The YouTube videos of CCSVI have been removed by the user.

[Guest guest]

Thank you for your reply and good wishes.

I must however emphasise that my post was not in anyway intended to be negative.

The simple answer was asked. Is it  likely that the procedure will have to be

redone or possibly be of no tangible benefit?  The answer is simply yes.

You only have to trawl through the salient posts on ThisisMS forum to find a lot

of evidence of this and it has been the same case for my wife and the other two

people who had the procedure on the same day.

After two follow up Doppler scans at the Essential Health Clinic we have had two

diverse results pointing to thrombosis/clotting around the stent, re-stenosis

above the stent on the left side  and a damaged valve where angioplasty was

carried out on the other side causing a minor reflux.

Now, ironically or perversely I see re-stenosis as a positive endorsement of the

theory, since if improvements disappear and subsequently it is found that

restricted flow/ restenosis has re-established itself, surely this proves the

point that Zamboni et al are making.

The big question I suppose is why does re-stenosis happen? From what I gather

from Zamboni's papers there is no reason why MS in itself can cause CCSVI so

there is the thorny question what can be done to mitigate it happening.

We are, 6 months after the initial procedure, awaiting another date for another

operation.

So, far from dismissing CCSVI procedures we still believe in some ultimate

benefit but I think people need to be prepared for a long haul and to moderate

their expectations accordingly. That's all.

Subject: RE: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

To: " MSCured " <mscured >

Date: Thursday, 7 October, 2010, 0:54

 

Sorry but I have many friends who have had the procedure done and have not

had the terrible effects or disappointing outcomes you have just described.

'This is by no means an attempt to dent the theory or denigrate those carrying

out the procedure but there some very optimistic and over zealous accounts out

there.'

The people who I know and who have SHOWN their successes with the procedure can

be nothing but optimistic! I couldn't call them over-zealous though.

As I have said many times before, this is NOT a miracle 'cure'. Our bodies need

time to heal and must be given the help to be able to do so without stress or

pressure. The YouTube videos posted on here regarding Ferratin etc should have

at least given people a bit more of an idea of what we're dealing with.

I think people have to realise that this procedure doesn't guarantee a miracle -

I don't expect to be running marathons a month afterwards.....but, I will be

eating correctly and working my way back up to fitness again gradually and

patiently. The success and difficulties our bodies encounter will be indiviual

to our own conditions.

Because of these differing and individual conditions, we must remember to be

realistic and not to get carried away without being overly negative either. It's

a bit of a tightrope to walk, but negativity and stress has ALWAYS been known to

worsen 'MS', and it now can be understood in refernce to CCSVI.

I'll still be sharing what I find which will help people and will, of course,

keep people up-to-date with MY progress on my personal journey to the procedure.

I've chosen to wait for the procedure to be carried out in the UK so I don't

have to fly to get the procedure done. Zivadinov I believe it was pointed out

that flying isn't a good thing in regards to CCSVI and restenosis etc. *shrugs*

My sharing information/educating anyone on CCSVI has ALWAYS been done from a

researcher's perspective as people have always been made aware - I have given

the examples that I have seen/read and researched/conversed with over the phone.

Having known about CCSVI for over two years now, I've had plenty of time to gain

a thorough understanding of the Ins and Outs of it - where things can go wrong,

the additional complications, the risks, the benefits etc etc.

As ALWAYS, CCSVI is something which some people are comfortable with and who

find great success with, or is something people are not comfortable with for

many of their own personal reasons. Some won't have the same success as others -

sadly, it's a given.

It's an 'each to their own' thing.

I think we each should be respectful of the other perspective and not denegrate

an individual for their beliefs/decisions in regards to the issue of CCSVI. It's

best to be supportive of each other and to be of reassurance and comfort to each

other as much as is possible through a computer screen.

It will, unfortunately, take time for the Medical

industry/Specialists/Professors/Doctors etc to work it all out (if ever) - until

then, in my situation, I'll take charge of what I CAN control which will help me

not to restenose. I'll stay realistically positive and optimistic as it has

helped me through 'MS' thus far - the negativity, stress, pressure and fear has

been what has made of MY differing situations worse since dx, so for me, it's

best to be smart about it......and to make sure that I always have my

'objective' researcher hat on.

, I sincerely wish your wife better results in any future CCSVI procedures

or tidy-ups.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: moochbay@...

Date: Wed, 6 Oct 2010 11:51:36 -0700

Subject: RE: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

Well in our experience there is a quite high rate of reversals to initial

upsurges. My wife had the procedure in Katowice six months ago and after a month

of improvement she now is considerably worse than pre-op.

[Guest guest]

That's no probs Judith

BUT, there are a HUGE amount of people who have had GREAT success through the

procedure.

It's always good to do your own research rather than listen to one person and

gain one person's views as opposed to many others' experiences and ideas.

There are some good places to gain further good and reliable information on

groups on Facebook ('CCSVI in Multiple Sclerosis' etc) and through the different

CCSVI groups there also! I'd be happy to share my research with you too

should you be interested.

One thing that I'M interested to know in conjunction with YOUR question though,

is whether those who restenose readily either rapidly or slowly, follow the

recommended diets or not.

Hopefully I'll be able to give a good account of the procedure's success without

stents very soon (next few months) - sticking religiously to the BBD too!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: jdm@...

Date: Wed, 6 Oct 2010 10:19:18 +0100

Subject: RE: CCSVI & MS: FIbrin, Sleep apnea, systemic proteolytic

enzymes, venous stenosis

Hi, it was actually from a non practising (now) doctor in uk who is one

of the main LDN people, that's why I took notice of it as I have a lot

of respect for him.

judith

[Guest guest]

http://lifeguardclinic.com/

I called this number at the VIP Center to get some information about CCSVI and

the woman who answered the phone answered some of my questions and is sending me

an application online. The waiting list is short, 40 people or so.

>

> i had my treatment in august at the arizona heart institute by dr. dietrich.

hi nurse is teresa capriotti. since he is the founder of the hospital he is able

to do what he finds reasonable without fearing he may be shut down. the entire

staff is wonderful and they are genuinely concerned with helping everyone with

ms. the wait time is short compared with other places. give them a call and ask

for teresa. you won't be sorry.

>

>

>

>

>

>

>

>

> Re: Re: CCSVI & MS: FIbrin, Sleep apnea, systemic

proteolytic enzymes, venous stenosis

>

>

>

>

>

> I am a bit confused. I had read on this site a while aback that CCSVI

treatment

> was only available in the U.S. in two places: one place in CA and one place in

> NY, but then both of those closed down. and that it was not available in the

> U.S. at all .... But now people have been writing that they are getting the

> treatment (not just the testing) in various places in the U.S. such as NY,

> Phoenix, and several other places in the U.S.

>

> So is this treatment available in the U.S. now, and how does one who lives in

> the U.S. go about finding the closest center to get not just the testing but

> also the treatment?

>

> Thanks.

>

>