Dr Paul Thibault - current position on the role of CPn in CCSVI and MS

From CCSVI / CCSVO specialist Dr Paul Thibault :

The concern I have is that people (medical doctors, patients, and the general public) will become disillusioned by the many studies (including Zamboni et al), which refute the use of venoplasty to achieve a "cure" for MSi. Zamboni has highlighted the connection between MS and a chronic venous disease, which I appreciate. However, since 2011 I have suspected his theory that venous obstructions cause demyelinationi (due to iron-deposition which accompanies vascular reflux) to be incorrect.

In a published pilot study<, we showed that venoplasty appeared to improve cerebral perfusion and I feel this is the mechanism which explains why some pwMS experience symptomatic improvement following venoplasty. But this effect was short term in most, and only occurred in approximately 30% of those treated. We analysed 2 pilot studies in NSW, one at St Vincents Hospital and a later one at Prince of Wales Private Hospital. Both came to the conclusion that venoplasty was generally ineffective in improving the symptoms of pwMS in the long term. The major participants had no enthusiasm for publishing negative results from pilot studies, and no randomised placebo controlled trials were planned. We abandonded venoplasties for CCSVO (Chronic CerebroSpinal Venous Obstruction) in MS in 2012. At that stage, we had performed over 200 procedures. Never-the-less, the objective diagnostic ultrasound examination< that we developed to diagnose obstructive venous disease in the neck veins (in contrast to the subjective Zamboni ultrasound) appeared to be accurate, reproducible and indicated that the venous obstructions were due to a chronic inflammatory venous condition that resulted in obstructions to both the internal jugular veins AND the vertebral veins. Interestingly, the vertebral veins have been largely ignored by Zamboni and others - perhaps because they can't be treated by venoplasty. After seeing David Wheldoni's website suggesting that a chronic persistent chlamydophila pneumonia infection was the likely cause of disease in a large sub-group of pwMS, I developed the theory that MS was due to a chronic infective cerebrospinal phlebitis and venulitis (published in Phlebology in 2012.)<. From that time, we have treated pwMS with the combined antibiotic protocol developed by the Stratton group (Vanderbilt University, Nashville) and David Wheldon. My observations are that the results have been superior to venoplasty, particularly in RRMSi with positive serologyi to Cpni, with relapses completely suppressed and only rare instances of new lesions developing on MRI examinations. Our 6-month follow-up with ultrasound flow measurements in the affected neck veins (published in Phlebology) shows significant improvements in those with positive serologyi testing to chlamydophila pneumonia (Cpn) infection. This article also highlights the possibility that chronic persistent infection with Cpn is widespread in the community but only a small percentage go on to develop MS. Some other factor, such as a genetic or concurrent infection with an agent like EBVi, is likely to be involved at a critical time early in life. Therefore CCSVI (O) is likely to be observed in many "normal" people who are included in randomised trials, which explains why so many studies have shown that the neck vein obstructions are observed in the "normal" population, but generally not at the rate found in pwMS. This is consistent with the epidemiology studies of the most famous MS neurologist, Prof John Kurtzke who concluded that MS was caused by an infection that was widespread through the community, but only a SMALL proportion went on the exhibit MS.

So why do some people have such a good result with venoplasty alone? I suspect that they have a "burnt-out" Cpn infection, that has been completely controlled by their immunei system, but has left resultant venous obstructions that cause reduced cerebral perfusion. These people test negative to Cpn. This state will be improved by successful venoplasty. As for the other > 90% who have chronic persistent Cpn infection but don't have MS, they will be prone to other vascular and "auto-immune" disease including coronary artery disease, cerebro-vascular diseasei, thyroid disease, CFSi, polymyalgia, reactive arthritis, thrombo-embolic disease, rosaceai and possibly lymphomas of the head and neck. PwMS have a high co-morbidity with these diseasesi.

So this is why I have entered into this argument, as the only doctor in Australia with a real interest in investigating the association of MS with CCSVO. I will be presenting the evidence at the UIP 2018 meeting to be held in Melbourne in February in a special "Masterclass on CCSVO". There will also be a demonstration of our Objective Ultrasound Examination, which will show that this is a real entity that needs to be addressed. I apologise that this reply has been so long, but it is an extremely complex problem.

Dr Paul Thibault publications referenced:

1 – A Prolonged Antibiotic Protocol to Treat Persistent Chlamydophila Pneumoniae Infection Improves the Extracranial Venous Circulation in MS. 

2 - Objective duplex ultrasound evaluation of the extracranial circulation in multiple sclerosis patients undergoing venoplasty of internal jugular vein stenoses: A pilot study 

 3 - Multiple sclerosis: a chronic infective cerebrospinal venulitis? 

From Singularity Hub, 2009.

"My own skepticism about CCSVI is partially augmented by a remarkable coincidence around Zamboni’s discoveries. First, his wife Elena Ravalli began to suffer from MSi in 1995. This inspired Zamboni to research the disease. Zamboni  is a vascular surgeon and he just so happens to discover that MS is a vascular condition with a surgical cure. I ask myself, if an orthopedic surgeon had a spouse who developed MS, would the cure for MS magically be a bone graft?"
Well, I guess that many people can and do say that about David and his use of the Vanderbilt treatment for his wife.  The fact that Elena Ravalli does not spend any time taking about her CCSVI treatment on the internet, does not mean that her treatment is now stopping to work.  It is just her choice.  Mine was to talk about my treatment to make it more well known.  Since we are nearly the same age and were noticeably ill for about the same time, although my then RRMSi started much earlier, I do hope her treatment is still working.
As Thibault says, Zamboni highlighted the connection between MS and chronic (venous) disease, which must be applauded.........................Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I have no medical background, whatsoever.  I can understand the premise behind CCSVI,  although neither my current or previous consultants can understand how it could benefit MSi. My husband, naturally,  would sell everything we have, to rid my MS, fortunately I had a small windfall in 2011. I had CCSVI, in  Warsaw, Poland,and, as with all 'miracles', I Shall never know if it made a difference. At the time my sight was the most affected and my colour perception immediately improved. Things have degraded since, but, who knows how I would be now? After all these years my condition could be mch worse, it could be better, but it was worth the money, if only, because it made my hsband feel so much more involved, and there are two of us in this relationship, dealing with this disease, which has, also, been true for David and Sarah and Mr and Mrs Zamboni. I can't think of a better incentive than love!

MSi symptoms from 2001, DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Jane,

 

I’m glad that Sarah didn’t get hitched to her erstwhile admirer, an accountant. Love has a lot to answer for.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Hi there, I too tried CCSVI.  Once in India and once in the US.  I noticed no improvements, but I too am glad I tried it!  First because I may have progressed faster without it????? and secondly because I don't sit around wondering if it could have worked for me ...

If I understand Paul Thibault correctly it may be that I went for CCSVI too soon.  Maybe you need to be on CAPi for enough time to get rid of the infection before you try CCSVI?

No chance of that, David: he came to meet me fom a Friends of the Earth meeting in his ridiculously expensive new car and he would have dumped me as soon as my hand gave out for the fiirst time.........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks Sarah!

It's nice to hear that so many of you have supportive spouses. I can't say the same about myself. My own husband (or better ex husband) slowly but stedily deprived us of moral, physical, emotional and finiancial resourses leaving me and our two year old daughter  fend for ourselves. Anyway, he would have done the same even if I was the healthiest person on earth. That's just the way he is.

Sorry, I don't mean to highjack this post nor to cry overmyself. I just needed to vent.

- Chronic Fatigue Syndromei since late 1980's - diagnosed in 2011 -

Vent if you want to: hopefully it will make you feel better. It is never good to hide things inside.......................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I agree with Sarah! Vent to us if it helps! We can’t do much, but, we will give you our support!

MSi symptoms from 2001, DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Sounds like you are saying you treated your vascualr disease (CCSVI) using angioplasty? The vascular diseasei CCSVI is treated with antibioticsi these days.

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

Paul Thibault is saying you could have avoided the surgery and treated the microbe contributing to your vascular diseasei using antibiotic.

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Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

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