This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,
I can not look at the computer for extended periods and can not reasearch the science, but has anyone made the connnection between CCSVI and Chlamydia Pneumonia? I see a relationship.

http://www.CPn Help.org/thoughts_appertaining_ccs

http://www.cdc.gov/ncidod/eid/vol4no4/campbell.htm

http://www.med.wayne.edu/Scribe/scribe0 ... rigger.htm

Audrey

Hi Kinora-
Marie Rhodes, a frequent poster on TIMS and the RN who wrote the book CCSVI: the science behind the controversial theory www.ccsvibook.com
was treated for many years for Cpn, using the Wheldon antibiotic protocol. It wasn't the answer for her, but it has helped many.

Marie believes that it is the venous congestion and reflux found in CCSVI which allows many viruses and bacteria to break the blood brain barrier and harm the central nervous system...which is why we see neurological Lyme, EBV, etc. The blood brain barrier should protect brain and spinal tissue from these invaders, but cannot, due to venous congestion.

It is very important that pwMS understand what their nutritional status is (vit. B12, vit D levels, etc., co-infection status (Lyme, Cpn, EBV, herpes, etc) may be, as treating CCSVI with venoplasty may not be the complete answer for some. But it is impossible to find one, exclusive pathogen linked to MS. Many have been implicated. None have been isolated.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Dear Cheerleader,

A very interesting and enlightening idea. I will look at the book maybe.

Thanks,

Kinora

Hello Joan,
You and Maria are oracles on CCSVI, sometimes I feel your advocacy oversteps the science. You posted:
Maria, who wrote the book CCSVI: the science behind the controversial theory www.ccsvibook.com was treated for many years for Cpn, using the Wheldon antibiotic protocol. It wasn't the answer for her, but it has helped many.
Marie believes that it is the venous congestion and reflux found in CCSVI which allows many viruses and bacteria to break the blood brain barrier and harm the central nervous system...which is why we see neurological Lyme, EBV, etc. The blood brain barrier should protect brain and spinal tissue from these invaders, but cannot, due to venous congestion.

I have a problem with your statement:
The blood brain barrier should protect brain and spinal tissue from these invaders, but cannot, due to venous congestion.

The BBB problem is poorly understood. I have not seen firm evidence that venous congretion causes BBB porosity. I have not seen good evidence when BBB porosity occurs nor what triggers it. Happy to receive any evidence you have.

I suggest we stick with the mantra for CCSVI:
"if you have stenosed veins get them treated"

I have used the Wheldon protocol and it helped slow my MS progression. I agree with Maria, it is worth trying if you have MS (the Wheldon protocol is cheap).
As a first step, I recommend getting a diagnosis for CCSVI but for many people this is not possible for financial reasons.

CCSVI is a syndrome says Zamboni, let's treat it while we try to understand the science.

Said as gently as I know how..........

MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

The only evidence I remember seeing on the BBB porosity being adversely affected by blood flow, was a reference made by Dr Simka to a bovine (ie cow) study. The only other study that even came close (I have not actually seen the paper) is the"Pullman" (I think that was his name) paper which was performed on dogs. Now that study I would love to read.

Not sure that you actually meant what this statement says at face value. MS has long been associated with BBB porosity, which from my understanding increases during a relapse; and I would assume has been shown to do such. In the past, I have read many articles discussing how steroids are used to not only reduce the immune system attack, but to also reduce the BBB porosity.

I am also confused. Gadolinium is used to highlight active lesions in MRI as it crosses the BBB where the BBB has broken down. This not only indicates areas of active inflammation, but also demonstrates that the BBB has increased porosity. I know this seems obvious, but maybe I'm missing something in the prior discussion.


NHE

Hello CureOrBust and NHE,

I meant exactly what I wrote:
MarkW: I have not seen good evidence when BBB porosity occurs.
It is commonly stated that BBB porosity increases during relapses. I have not seen any research which shows that the BBB does this. Blood cells need to pass through the BBB during a relapse but not during remission if the commonly held view is correct.
I hoped to see research on when the BBB porosity alters in pwMS over disease progression. Please share any info you have.

My understanding is that Gandolinium passes thru the BBB in relapses and remission. It just highlights active lesions.

My main point is that we do not understand the BBB in pwMS because there is little evidence available. This is also important for the red blood cell/iron theory of myelin damage.

MarkW

Discusion history:

CureOrBust wrote:
MarkW wrote:
I have not seen good evidence when BBB porosity occurs nor what triggers it.

Not sure that you actually meant what this statement says at face value. MS has long been associated with BBB porosity, which from my understanding increases during a relapse; and I would assume has been shown to do such. In the past, I have read many articles discussing how steroids are used to not only reduce the immune system attack, but to also reduce the BBB porosity.

NHE posted:
I am also confused. Gadolinium is used to highlight active lesions in MRI as it crosses the BBB where the BBB has broken down. This not only indicates areas of active inflammation, but also demonstrates that the BBB has increased porosity. I know this seems obvious, but maybe I'm missing something in the prior discussion.

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

My understanding is the same as NHE's understanding of when Gad crosses the BBB -- during relapses. If the BBB hasn't broken down anywhere, the Gad won't cross the BBB.

This link is to a fascinating article that provides new insights into the BBB; there is also a great live video of T-cells crossing in/out of the BBB (Ewwww):

http://www.physorg.com/news176652011.html

www.direct-ms.org/sites/default/files/M ... n%2003.pdf

This does not answer the question but it is an indepth article on the BBB with some useful images.

Thanks for the posts. However these do not answer the basic question:
When does the BBB porosity change in pwMS ? What triggers the change is even more difficult.
I am looking for evidence rather than opinions, which may be correct.
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

I'd look at #19. Breakdown of the BBB precedes symptoms and MRI signs of new lesions in MS. I wonder how they define the breakdown of the BBB. I haven't read it, these were cited in the article listed above, which is where my quote is from.

Are you questioning if MS is associated with BBB porosity? or if it changes during the course of MS?

How about one from your own post. By "congretion" I am guessing you mean flow changes such as reflux? which to me would mean non-laminar flow

http://www.thisisms.com/ftopict-17538-.html

I haven't read the referenced studies, but I would guess they trump the cow study.

Is this the sort of thing you were looking for above?
....edit...
I'm still reading this same paper, and thought this may also count.

I remember looking at steroids effects on the BBB a number of years back (2007). I found the old posts, and this quote basically covers it I think.

ummmm..this is meant to be a partial answer to the questions "When does porosity change in pwMS? What triggers it?" Steroids change the porosity. Steroids trigger a change.