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.
Have you or any other of your husbands patients had an ultrasound check? That WOULD be interesting.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.
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.Anecdote wrote:Most of the people he treats will not have MS but varicose veins and spider veins which need treating.
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 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 we really take our discount medicines a god given right.Anecdote wrote: The only difference I discovered yesterday is that he uses minocycline rather than doxycycline because mino is cheaper in Australia.
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.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.
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