Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.The posts are searchable---simply type in your topic of interest in the search box at the top left.Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.To learn how this journey began, read my first post from August, 2009. Be well! Joan
Wednesday, October 6, 2010
October 6, 2010 at 8:33am
We're seeing many neurologists and MS specialists responding to CCSVI research reflexively. The common attack is
"This CCSVI angioplasty is no different than bee stings! It is simply snake oil."
I think it's important for patients and caregivers to understand history when trying to respond to this claim. You know me and history (Rindfliesch, Putnam, Swank) I LOVE history.
The term snake oil comes from the late 19th and early 20th century in the US, when you could actually purchase real snake oil to help your health. Snake oil was claimed to have many healing properties and was sold by traveling salesmen, who put on shows with feverish sales pitches, hysterical claims, and miraculous healings which rivaled religious revival meetings. But these products didn't really do much for one's health, and soon the public caught on to the quackery and the term snake oil became associated with false medical claims.
When Dr. Zamboni discovered Chronic Cerebrospinal Venous Insufficiency (CCSVI) he actually discovered a new disease.
Other international researchers, like Dr. Chung in Taiwan, were noting how internal jugular vein valve incompetence (IJVVI) affected by valsalva manuevers was related to transient global amnesia and hypoxic events. Dr. Zamboni, while utilizing ultrasound equipment and scanning the neck of an MS patient-- noted venous reflux. Something that was not normal, and had not been detected before--reflux in the absence of valsalva, independent of body position. He spent the next five years conducting blinded doppler studies, writing research, bringing other doctors on board and learning all he could about this disease mechanism. He tried to address the truncular venous malformations he found in MS patients' veins with angioplasty. It helped his patients. And then he published his research, and I read it--along with patients, caretakers and doctors around the globe.
Venoplasty to relieve CCSVI is not a product. It is not sold as a cure.
It is not quackery. Angioplasty is used to relieve venous congestion and stenosis in many known diseases, including Budd-Chiari, heart disease, kidney disease, and jugular insufficiency in dialysis patients. Sometimes, the organ with venous congestion is too damaged to have much healing after venoplasty (as in Budd Chiari, when a liver transplant is necessary.) But, if caught early, treated venous malformations can lead to symptom relief and stop disease progression in the affected organ.
Maybe we want to turn the question around to these doctors-- what is snake oil? A product that makes unsubstantiated claims to heal, without a known mechanism. I suggest that they themselves are the snake oil salesmen---telling their patients to take disease modifying drugs and cancer treatments, while they admit the cause of MS is STILL UNKNOWN. We do not know if the immune activation seen in MS is secondary, as it is in ischemic stroke and other neurovascular disease. Perhaps these drugs are the snake oil?
In any event---over the years there have been procedures and treatments used to relieve MS symptoms and many have been touted as curative and called snake oil--they are not cures, BUT they have helped pwMS achieve symptom relief.
What do bee stings, hyperbaric oxygen treatment, diet and exercise and many other "alternative" MS treatments have in common?
They all address the VASCULAR SYSTEM.
Bee stings are vasodilators (via histamine release) and help blood travel throughout the body. Venom from scorpions and other animals also does the same, by reducing fibrin in the blood, and has been linked to relief in pwMS by many scientists. Hyperbaric oxygen is easy to understand within the CCSVI paradigm--it is delivering much needed oxygen to a brain that is suffering from diffuse cerebral hypoxia. Removal of amalgam/mercury fillings gets a toxic metal away from the brain. Mercury is a known endothelial disrupter and harms blood vessels. Diet has long been touted as a relief for MS symptoms. in fact Dr. Roy Swank completed many studies that were never deemed "acceptable" to the MS researchers. But he showed long term remission in his MS patients, using nutrition alone. Dr. Terry Wahls is doing the same today. Exercise is good for MS, smoking is bad. Why?? I believe the connection to all of the above is found in the endothelium, the lining of our blood vessels. You can check out my research on endothelial health here:
So, when a doctor uses the snake oil phrase to describe Dr. Zamboni's research, ask he or she if they understand the irony of that comment.
Who is selling the snake oil---really?