CCSVI

[Guest guest]

Thanks for pointing this out to me .....

I would never have known that Janet knew " EVERYTHING " about the BBD even though

I have been on this message board since 2007.

:-)

For others, I am merely pointing out that CCSVI is not the whole answer and diet

surely plays a huge part in any progression or recovery.

Cheers,

Pinda

> > PS I feel that a sound dietary protocol is even more important than

pre-CCSVI treatment so please ensure your diet stays in check!

> >

>

>

[Guest guest]

All the e-mails, both on here and privately, that I have been receiving since my

CCSVI procedure are overwhelming and a lovely testament as to how many people

are genuinely interested.

Please forgive me for not writing much (yet). It is not that I am fatigued, far

from it, but there aren't enough hours in the day to read everything. I will

get to each message in time but this thread touched me -

To clarify - I am THE Janet who is adamant about the BBD and see it even more so

now as my diet for life which I shall not change an iota. I am not though the

Janet who knows everything about the BBD - I just wish I did but am always

learning from all you guys. Thank you.

I see the healing of MS as taking various steps -

A diet compatible with your type, and for me the BBD works well, eliminating all

food allergies I have.

Alternative supplements taken from those suggested by the BBD but tailored to

yourself.

Removal of dental amalgams.

A long detox programme to clear out heavy metals or whatever else is lurking

inside that shouldn't be.

Exercise (for me that is yoga and swimming).

Relaxation, as little stress as possible.

CST (cerebro-spinal therapy)

And now another piece in the jigsaw is CCSVI.

Maybe in time there will be others but for now that is as good as it gets for

me.

It will be one week for me since procedure tonight and already I am feeling

fantastic. I can stand and climb up the first step of the staircase. I am in no

hurry to do the next one until the 2nd week. My body will tell me when it is

ready. 15 years of MS, half of them in a wheelchair, has taught me patience.

Thank you guys for teaching me so much.

Janet

To: mscured

From: nagra101@...

Date: Mon, 1 Nov 2010 15:29:24 +0000

Subject: Re: CCSVI

Thanks for pointing this out to me .....

I would never have known that Janet knew " EVERYTHING " about the BBD even though

I have been on this message board since 2007.

:-)

For others, I am merely pointing out that CCSVI is not the whole answer and diet

surely plays a huge part in any progression or recovery.

Cheers,

Pinda

> > PS I feel that a sound dietary protocol is even more important than

pre-CCSVI treatment so please ensure your diet stays in check!

> >

>

>

[Guest guest]

> It will be one week for me since procedure tonight and already I am feeling

fantastic. I can stand and climb up the first step of the staircase. I am in no

hurry to do the next one until the 2nd week.

>

Janet,

I have tears in my eyes. I'm sooooooooooo happy for you!

Crystal

[Guest guest]

Ameds, Warsaw, Poland and I would wholeheartedly recommend them.

Janet

To: mscured

From: sammarco54@...

Date: Fri, 29 Oct 2010 21:36:39 -0400

Subject: Re: CCSVI

Janet - oh my gosh - that's wonderful! Where did you have the it done?

betsy

[Guest guest]

Thanks (and thank you everyone else).

I climbed one step in the house today )) which is the end of week one since

procedure.

Step 2 is my goal for the end of week 2.

Then I can re-start exercise which will be very interesting.

CCSVI testing and treatment is another little step in our recovery - I recommend

it.

OMG I hear you say, but perhaps she will shut up about the BBD But sorry, I

won't as I still see it as an important part of my healing too.

Janet

To: mscured

From: alpdesigns1@...

Date: Sun, 31 Oct 2010 17:01:34 +0000

Subject: Re: CCSVI

Congratulations! I want to read that you're walking soon and that your

wheelchair is in the garage!

>

>

>

>

>

>

>

>

>

>

>

>

> Treatment late Monday night. 100%!!!! stenosis left jugular when seated, 65%

when lying. Hands not only got warm but sweated as they ballooned the jugular. I

looked up at the ceiling thinking some moisture was falling down as it had been

so many years since I'd perspired I had forgotten about it.

> Total upper body strength and balance restored, normal hands (and I can snap

my fingers which I have never been able to do), clear, clear head, no brain fog

whatsoever. a different way of seeing things - no panic, no worry, all totally

serene. And that was all immediate. NO pain and so many other things.

> Constipation gone, incontinence too - so much so that I have just flown from

Warsaw to Barcelona (3 hour flight) with no toilet on board that I could reach,

stopped at Barcelona airport before the 2 hour car journey up here and couldn't

even pee! Sorry for the graphic info but I know a lot of you would do CCSVI

treatment to cure constipation/bladder issues/pain alone.

> EVERYONE should do this. If you can't afford it, sell something, don't buy a

new car, forego your holidays/Xmas/birthdays, re-mortgage...

> If anyone wants further info, I'd be happy to chat to you off-list.

> Liberated Janet )))))))))))

>

>

>

[Guest guest]

Hi Pam

It stands for Chronic CerebroSpinal Venous Insufficiency.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: plg8388@...

Date: Mon, 15 Nov 2010 03:03:13 -0800

Subject: Re: CCSVI

what does CCSVI stand for?I have secondary Progressive MS Pam G

[Guest guest]

how do you know if you have it?  Pam G

Subject: RE: CCSVI

To: " MSCured " <mscured >

Date: Monday, November 15, 2010, 2:19 PM

 

Hi Pam

It stands for Chronic CerebroSpinal Venous Insufficiency.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: plg8388@...

Date: Mon, 15 Nov 2010 03:03:13 -0800

Subject: Re: CCSVI

what does CCSVI stand for?I have secondary Progressive MS Pam G

[Guest guest]

You'll need to be scanned/tested for it.

The whereabouts of a place to do this, and the method used to find stenosis and

reflux will vary from country to country.

Where are you Pam?

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: plg8388@...

Date: Mon, 15 Nov 2010 11:29:34 -0800

Subject: RE: CCSVI

how do you know if you have it? Pam G

[Guest guest]

I live in Upper Darby,Pa USA

Subject: RE: CCSVI

To: " MSCured " <mscured >

Date: Monday, November 15, 2010, 4:26 PM

 

You'll need to be scanned/tested for it.

The whereabouts of a place to do this, and the method used to find stenosis and

reflux will vary from country to country.

Where are you Pam?

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: plg8388@...

Date: Mon, 15 Nov 2010 11:29:34 -0800

Subject: RE: CCSVI

how do you know if you have it? Pam G

[Guest guest]

OK, well one of the other members of MSCured may have US information for you, or

you could get the information on Facebook if you're a member on there.

As I'm an Australian living in the UK, I can't give you the best information

where you should go unfortunately.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: plg8388@...

Date: Mon, 15 Nov 2010 15:56:10 -0800

Subject: RE: CCSVI

I live in Upper Darby,Pa USA

[Guest guest]

Hi Deborah

I think it's always best to stick to the diet as it does help our bodies heal a

bit. A nice raw food detox for a while would probvably help too.

Giving up smoking is one of the best things any of us can do. Now that we know

about CCSVI, it kind of makes sense that 'MS' has such a huge vascular

connection when we're told that moking can cause onset of 'MS'.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: jadeworldexplorer@...

Date: Sun, 7 Nov 2010 04:48:42 -0800

Subject: Re: Re: CCSVI

i have done everyting except go natural and stick to diet and ldn in beginning

og 2nary diagnosis did ldn and diet twice c got eemission gor .

[Guest guest]

CONGRATS RACHEL!!!!

 

Subject: RE: CCSVI

To: " MSCured " <mscured >

Date: Monday, November 15, 2010, 4:27 PM

 

OK, well one of the other members of MSCured may have US information for you, or

you could get the information on Facebook if you're a member on there.

As I'm an Australian living in the UK, I can't give you the best information

where you should go unfortunately.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: plg8388@...

Date: Mon, 15 Nov 2010 15:56:10 -0800

Subject: RE: CCSVI

I live in Upper Darby,Pa USA

[Guest guest]

The Arizona Heart Institute in Phoenix is doing CCSVI.

http://www.lifeguardclinic.com/VIPProgramforMSPatients.htm

>

>

> OK, well one of the other members of MSCured may have US information for you,

or you could get the information on Facebook if you're a member on there.

[Guest guest]

, the Arizona Heart Institute went belly up last week. People were

suddenly notified that their surgery was cancelled and supposedly they went

bankrupct . That's where I had hoped to go at one point.

Cait

>

>

> The Arizona Heart Institute in Phoenix is doing CCSVI.

>

> http://www.lifeguardclinic.com/VIPProgramforMSPatients.htm

>

>

>

> >

> >

> > OK, well one of the other members of MSCured may have US information for

> you, or you could get the information on Facebook if you're a member on

> there.

>

>

>

[Guest guest]

Thanks !

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: stacywest2003@...

Date: Mon, 15 Nov 2010 18:42:52 -0800

Subject: RE: CCSVI

CONGRATS RACHEL!!!!

[Guest guest]

OMG! I just got the application. We're going to see more of these situations

in the future. I think the clinic who does this does it at the AHI and they

might still be doing this somewhere else. I'm going to call today.

>

> , the Arizona Heart Institute went belly up last week. People were

> suddenly notified that their surgery was cancelled and supposedly they went

> bankrupct . That's where I had hoped to go at one point.

>

[Guest guest]

lol

Hi Edie,

I sent it through to you once privately and I sent a very similar one through to

the group too - you received it the second time because you got the group mail

which I had addressed to everyone in MSCured.

The emails were actually different in small ways, but recommended the same

sites. Your email from me also had papers attached which the group email didn't.

I'm glad you've found the information useful Edie - I thought I'd better explain

your receiving two emails.

I don't want you to think me some sort of stalker or a loon! lol

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: neil_ea@...

Date: Sun, 9 Jan 2011 09:57:25 -0800

Subject: Re: Re: CCSVI

, Thank you for you reply, yes, it will get me started.

[Guest guest]

Hello again, I just went back to view " the extra " inserts.  I appreciate your

including me with additional info.  I'm just glad you thought of me.  I had a

friend/Rn come over to review what you had sent, I haven't found much support in

this area than her.  It was nice to see someone else excited with the

possibilites. 

I sent out two e-mails and am anxious to see what response, if any, I get.

This has been a topic of much prayer and I believe, it's time for some

results. 

I don't believe my getting back the mscured group was a coincidense, I believe

thingshappen for a reason.

I'll be in touch.

Edie

________________________________

To: MSCured <mscured >

Sent: Sun, January 9, 2011 1:50:58 PM

Subject: RE: Re: CCSVI

 

lol

Hi Edie,

I sent it through to you once privately and I sent a very similar one through to

the group too - you received it the second time because you got the group mail

which I had addressed to everyone in MSCured.

The emails were actually different in small ways, but recommended the same

sites. Your email from me also had papers attached which the group email didn't.

I'm glad you've found the information useful Edie - I thought I'd better explain

your receiving two emails.

I don't want you to think me some sort of stalker or a loon! lol

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: neil_ea@...

Date: Sun, 9 Jan 2011 09:57:25 -0800

Subject: Re: Re: CCSVI

, Thank you for you reply, yes, it will get me started.

[Guest guest]

I contacted the doctor who is to perform my CCSVI and asked if the MRV could be

done without the gadolinium contrast. He said that if my Doppler is conclusive,

then we could probably do the MRV without the gadolinium contrast, although he

ususally does like to use the gad contrast as it tells him more. I guess it will

unravel when I go for my testing and procedure--and obviously there will be a

chance they will tell me I have no blockages, but I think everyone they have

seen they found blockages.

Meanwhile I came across on the MSRC CCSVI Diaries page there are about 10

stories of people who had CCSVI done. I was a little disappointed by the

stories. They were mixed--from very good to no changes and some needing

restenosis but not getting any benefit from the restenosis.

So I am still struggling with this decision to an extent. I am not due for the

testing procdure for another 2 months, so I have some time to decide.

[Guest guest]

I feel I should step in here to support 's post.

CCSVI treatment is " the " answer to MS currently as far as I am concerned and

isn't scary whatsoever.

I had treatment at the end of October and whilst I am still in a wheelchair

(after 15 years of PPMS, more than half of which in a wheelchair permanently),

ALL my symptoms other than non-mobility have gone.

As , and I am sure most, I was scared of what the procedure might do. It

was really no big deal and now I feel silly for worrying.

For those who can, get after it! It won't bring 100% solutions but it will

shave a bit off your current problems.

Janet

To: mscured

From: alansamston@...

Date: Thu, 17 Mar 2011 01:48:31 +0000

Subject: CCSVI

I contacted the doctor who is to perform my CCSVI and asked if the MRV could be

done without the gadolinium contrast. He said that if my Doppler is conclusive,

then we could probably do the MRV without the gadolinium contrast, although he

ususally does like to use the gad contrast as it tells him more. I guess it will

unravel when I go for my testing and procedure--and obviously there will be a

chance they will tell me I have no blockages, but I think everyone they have

seen they found blockages.

[Guest guest]

Hi ,

You mentioned you had " no dye that your'e aware of " for your CCSVI testing and

procedure. Generally the dye is given during the venogram. I have not heard of

anyone who didn't have the dye (which is a contrast agent, usually gadolinium),

but I asked my doctor who will be doing the CCSVI and he said he would be

willing to tell them not to use the dye in my venogram if my Doppler is very

conclusive, but that he does prefer to use the dye in the MRV because it tells

him more.....I know that you said that you have been studying CCSVI intensely

for several years and are very familiar with all aspects, so I really would like

to know if you can recall if they used any dye (it would have been an injection,

probably in your arm right before the MRV/Venogram). Because I have to make a

decision whether to take the dye which I know has dangers but that would also

give the doctor more information when he will do the actual CCSVI procedure, so

for that reason I am wondering if you can try to think back to your venogram

(MRV) and try to recall if you got an injection at that time. The dye, as I

mentioned is used during the MRV/Venogram testing, not during the procedure

itself. Would appreciate if you could let me know as I am trying to find others

who were able to get the actual procedure done succesfully without having the

dye during the venogram/MRV testing. Thanks.

>

>

...... I didn't have any dye in my veins - no dye that I'M aware of anyway. I've

stuck to the BBD for the last 2+ years and am just on

[Guest guest]

Hi again

Nope, definitely no dye for anything to do with the CCSVI procedure.

There's no need because the doppler doesn't require dye to see what vascular

situation you have going on.

I've never had a Venogram.

I hope that helps.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Sun, 20 Mar 2011 18:26:22 +0000

Subject: Re: CCSVI

Hi ,

You mentioned you had " no dye that your'e aware of " for your CCSVI testing and

procedure.

[Guest guest]

Thanks very much for your response. That does clear that up for me. I am

really afraid of the dye because I have a lot of water retention for years

secondary to MS that is already possibly tough on my kidneys, so I do prefer to

not have any dye, as this dye apparently stays in some people's bodies for years

and in a small percentage causes a rare kidney disease or other disease. I know

it is a very tiny minority that reacts this way to the contrast, but if I can

avoid it that puts me one step closer to feeling confident in getting the CCSVI.

If the doctor is willing to do the procedure without the dye in the MRV, then I

guess he must feel he can do it, otherswise I guess he would have just said no.

He did however say that my Doppler must be very conclusive in order for them not

to use dye in the venogram. Thanks a lot for your response. As I have mentioned

before myself, Terry Walhs, and one other person I know all had heavy metal

challenge tests and still have gadolinium contrast (the dye) come out of our

urine even though we hadn't had MRIs in years--this show that gadolinium does

stay in the system, at least in some people, just as mercury does. Alan.

________________________________

To: MSCured <mscured >

Sent: Sun, March 20, 2011 3:00:51 PM

Subject: RE: Re: CCSVI

 

Hi again

Nope, definitely no dye for anything to do with the CCSVI procedure.

There's no need because the doppler doesn't require dye to see what vascular

situation you have going on.

I've never had a Venogram.

I hope that helps.