Antibiotics for ccsvi in Australia

A forum for the discussion of antibiotics as a potential therapy for MS

Antibiotics for ccsvi in Australia

Postby SarahLonglands » Fri Jan 13, 2012 1:33 pm

Copied from General Interest, where I put it first:

Here is a paper just published in Phlebology and Phlebology-Online by the Australian Phlebologist, Paul Thibault, who started off treating ccsvi for people with MS but then realised that There was more to MS since most people relapsed very quickly:
http://www.cosmeticcentre.com.au/client_images/1043332.pdf. He now treats MS people who are shown to have ccsvi with antibiotics from Charles Stratton from Vanderbilt University's Combined Antibiotic Protocol and is having very good results.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Advertisement

Re: Antibiotics for ccsvi in Australia

Postby cheerleader » Fri Jan 13, 2012 5:55 pm

Just to clarify. Dr. Thibault is treating with venoplasty. He believes these are venous malformations and they are changing cerebral blood flow. His hypothesis is that Cpn is creating these venous malformations. He is measuring blood flow pre and post venoplasty, and finding some interesting results.

We've been discussing his paper on the Facebook page Marie Rhodes and I admin. Here is Dr. Thibault on his research:


I believe that the malformations develop over time as they are relatively minor in earlly disease and generally become progressively worse in line with the degree of disability. The nature of the venous "malformations" is primarily obstructive rather than severe "reflux" that we see in the lower limbs. The obstructions over time lead to collateralisation which is the body's way of overcoming the vascular obstruction. The collateralization or new pathways results in the reflux that can be observed either with ultrasound or on venography. As the vascular lesions cause obstruction, the main manifestation is reduced blood flow out of the brain. Collateralisation overcomes this to a degree. However, over time there is also a reflex reduction of flow into the brain via the arteries. This has been shown in a number of MRI studies including one from Prof Zamboni. Thia probab;y accounts for symptoms such as fatighue (there are other mechanisms as well) and decreased cognition. At present I am working on a pilot study measuring blood volume flows into the brain and out of the brain before anfd after venoplasty. With only small numbers so far, the results appear exciting (highly significant) and may help explain the immediate benefits that many MS patients achieve after venoplasty.


I have been in contact with Dr David Wheldon (whose protocol I use - with some minor differences) and he is very supportive of my hypothesis. With all my MS patients now, I recommend the combined antibiotic protocol plus venoplasty if ultrasound is suggestive of a treatable stenosis. My impression is that we are achieving better results with the combined approach. In addition diet, Vitamin D are also discussed and recommended where appropriate. Regarding the ultrasound finding relating to a diagnosis of MS, I find them very reliable. We may not see stenoses in the early cases, but usually some minor blood volume flow abnormalities will be detected. With advanced progressive cases, severe BVF abnormalities will be obvious and these will usually be very difficult to treat with some having complete obstruction of an IJV.

https://www.facebook.com/pages/CCSVI-in ... 297?ref=ts
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Re: Antibiotics for ccsvi in Australia

Postby SarahLonglands » Sat Jan 14, 2012 6:10 am

Cheer, you are half right, but the fact is that if the stenosis can be cleared without venoplasty, as must have happened with me, that is far preferable.
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Re: Antibiotics for ccsvi in Australia

Postby cheerleader » Sat Jan 14, 2012 11:21 am

Sarah--
I am happy for you and the many others that CAP treatment has helped.
But for those who do not benefit--venoplasty should be a viable option.
Dr. Thibault is not abandoning venoplasty. Please read his comments above.
We are all in agreement that MS is not an autoimmune disease, that CRABS are not the answer, and that other treatment options must be investigated. But it's not about being right. It's about helping other people find the healing that both you and Jeff have experienced.
be well,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Re: Antibiotics for ccsvi in Australia

Postby CureOrBust » Sat Jan 14, 2012 5:19 pm

Anecdote wrote:Cheer, you are half right, but the fact is that if the stenosis can be cleared without venoplasty, as must have happened with me, that is far preferable.
Have you or any other of your husbands patients had an ultrasound check? That WOULD be interesting.

Although separated by some years, I have undergone both treatments, and still suffer MS symptoms. :sad:
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: Antibiotics for ccsvi in Australia

Postby SarahLonglands » Sun Jan 15, 2012 8:48 am

Cheer, of course venoplasty should be a viable option for those that need it: I am in agreement with you there. Thibault is a phlebologist so he can't just abandon venoplasty. Most of the people he treats will not have MS but varicose veins and spider veins which need treating. The fact that they are caused by circulation issues is another story.

Cure, I don't know about anyone else, but yes, it WOULD be interesting. I haven't been checked though because I started abx treatment before anyone knew about ccsvi. However, I did have a rather prominent vein on my face above my right temple. With antibiotic treatment this disappeared. With my (rather limited) knowledge of anatomy, this would feed the internal jugular.

I'm sorry thsat you are still suffering from MS symptoms after both treatments, maybe this will be the answer but it is still many years away:
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1845 Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Re: Antibiotics for ccsvi in Australia

Postby CureOrBust » Mon Jan 16, 2012 3:09 am

Anecdote wrote:Most of the people he treats will not have MS but varicose veins and spider veins which need treating.
Dr Thibault has become one of the "centres" for CCSVI in Australia's east coast. I am based in Sydney, he is based in Newcastle (a few hours drive on a free-way), and he is my referring physician for Sydney treatment. I know that he did not start to see MS patients until after CCSVI "broke out". We discussed how in the "Aussie CCSVI" thread; it was us patients that found him. He was not a lone researcher that stumbled upon and ran with Dr Zamboni's work himself.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: Antibiotics for ccsvi in Australia

Postby SarahLonglands » Mon Jan 16, 2012 7:29 am

Thank you Cure, I know all this from David, who was contacted by Thibault for advice. He David because of the iffy results he was seeing with ccsvi treatment, which is why he now treats MS people with the Stratton/Wheldon antibiotic treatment before resorting to venoplasty. The only difference I discovered yesterday is that he uses monocycline rather than doxycycline because mino is cheaper in Australia.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Re: Antibiotics for ccsvi in Australia

Postby CureOrBust » Wed Jan 18, 2012 4:25 am

Anecdote wrote: The only difference I discovered yesterday is that he uses minocycline rather than doxycycline because mino is cheaper in Australia.
In Australia most medicines when not used Off-Label are heavily subsidised by the Govt. WHEN I next see him, I will let him know how most chemists I have been to do not charge me the full price, even though my GP explicitly does not check the subsidised box on the script :smile: When I was on the CAP (ie your husbands protocol) I even had one chemist who actually was surprised by the full cost of Doxy and basically refused to charge me that price, so gave me a discount 8O we really take our discount medicines a god given right.

I actually joke to my GP about this practice (or lack there of...) by chemists (although its good for me!). I now take Lipitor which should cost me $130 per month, but the chemists (ie ALL) just assume the Dr ticked the box; ie dont even look at the box for this medication. Even when one noticed, he asked my why the Dr didn't tick the box, and then proceeded to give it to me at the full subsidised price of $30 as he though it was simply overlooked by the doctor. :smile:
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: Antibiotics for ccsvi in Australia

Postby SarahLonglands » Wed Jan 18, 2012 6:40 am

Hmm, we could do with our pharmacists thinking like that as well! For instance, roxithromycin has been available in this country for years - theoretically. It has to be obtained from France, though, so works out rather expensive. So it is easier for most GPs to just say it isn't available. David persuaded Boots the Chemists to get it but not at a discounted price.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Re: Antibiotics for ccsvi in Australia

Postby CureOrBust » Thu Jan 19, 2012 1:37 am

Anecdote wrote:For instance, roxithromycin has been available in this country for years - theoretically. It has to be obtained from France, though, so works out rather expensive. So it is easier for most GPs to just say it isn't available. David persuaded Boots the Chemists to get it but not at a discounted price.
I do not know the laws in the UK, but in Australia, if the drug is approved to be supplied by a chemist with a prescription, then an individual can personally import it/purchase it from outside the country if they have a prescription; more hassle yes, but its your health.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: Antibiotics for ccsvi in Australia

Postby SarahLonglands » Thu Jan 19, 2012 7:41 am

Hmm, as far as I am aware, our health is in the charge of the inaptly named NICE unless we can afford to order stuff from overseas and now what to get. Most people neither have the money nor the knowledge.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK


Return to Antibiotics

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service