So Canada's MS Society is now backing research for CCSVI, now it is time for the US to follow suite!
http://www.theglobeandmail.com/news/national/ms-group-calls-for-research-into-potentially-paradigm-shifting-theory/article1374954/
11/24/09
CTV story on CCSVI
This Canadian Documentary is really well done and explains CCSVI wonderfully.
http://watch.ctv.ca/news/w5/the-liberation-treatment/
I am so excited about this CCSVI prospect. I have an appointment set up with a vascular surgeon tomorrow. The protocol for the ultrasound and MRI are a little different than the standard, some technicians who have not been trained in it are not finding the stenosises (sp?). So bringing in these protocols is very important. We do not want everyo9ne to rush in and get tested by an untrained radiologist and find nothing when there is something there. This would make the theory seem wrong, even though Dr. Zamboni and Dr. Dake have found it in 100% of MS patients.
You can find the protocols here:
The ultrasound protocol is here: http://csvi-ms.net/en/content/how-perform-doppler-examination-multiple-sclerosis-patient-dr-simka
And the MRI protocol is here: http://www.ms-mri.com/protocol.php and more detailed here: http://www.ms-mri.com/docs.php
I dream about this and think about it all day. I feel like I can live a normal life if these veins are corrected. The only disease progression Dr. Zamboni's patients had was when the vein reclosed. That is why Dr. Dake uses stents, they keep the veins permanently open, whereas the ballooning can be temporary.
I can't wait until tomorrow. I am prepared to stage a sit down in the doctor's office if he says he can't help me. I will not give up. I am confident that I have a stenosis or two and that it can be corrected and that it will stop the progression of MS.
http://watch.ctv.ca/news/w5/the-liberation-treatment/
I am so excited about this CCSVI prospect. I have an appointment set up with a vascular surgeon tomorrow. The protocol for the ultrasound and MRI are a little different than the standard, some technicians who have not been trained in it are not finding the stenosises (sp?). So bringing in these protocols is very important. We do not want everyo9ne to rush in and get tested by an untrained radiologist and find nothing when there is something there. This would make the theory seem wrong, even though Dr. Zamboni and Dr. Dake have found it in 100% of MS patients.
You can find the protocols here:
The ultrasound protocol is here: http://csvi-ms.net/en/content/
And the MRI protocol is here: http://www.ms-mri.com/
I dream about this and think about it all day. I feel like I can live a normal life if these veins are corrected. The only disease progression Dr. Zamboni's patients had was when the vein reclosed. That is why Dr. Dake uses stents, they keep the veins permanently open, whereas the ballooning can be temporary.
I can't wait until tomorrow. I am prepared to stage a sit down in the doctor's office if he says he can't help me. I will not give up. I am confident that I have a stenosis or two and that it can be corrected and that it will stop the progression of MS.
11/14/09
Potential MS "Cure"
This was on the local news (abc4) last night. This procedure uses intense chemotherapy to "reset" the immune system. 90% of those who had the procedure had no MS symptoms (or at least no progression) 1-3 years later.
This is a great prospect, but I still wonder if it is an actual cure. Relief of all symptoms for years with out additional medications is incredible though. I do worry about the effects of chemo, particularly on the reproductive system. I am not done having kids, so I feel this is not an option for me.
I still see CCSVI as a very likely cause and if that can be fixed then maybe chemo would not be necessary.
This is a great prospect, but I still wonder if it is an actual cure. Relief of all symptoms for years with out additional medications is incredible though. I do worry about the effects of chemo, particularly on the reproductive system. I am not done having kids, so I feel this is not an option for me.
I still see CCSVI as a very likely cause and if that can be fixed then maybe chemo would not be necessary.
11/10/09
Inflammation
I just read that during times of inflammation, the blood brain barrier becomes more permeable, which makes avoiding inflammation all the more important in helping to keep MS symptoms at bay.
I enjoyed this article about things that cause inflammation:
http://www.womentowomen.com/inflammation/causes.aspx, a recommended read if you are serious about lessening your inflammation. Also more specific diet suggestions for reduce inflammation: http://www.womentowomen.com/inflammation/naturalantiinflammatories.aspx
Just a quick overview:
Diet is huge, too much insulin causes inflammation, so low carb diets are helpful.
A proper balance of omega-3 and omega-6 oils is crucial.
Avoiding food sensitivities helps.
Intestinal inflammation (which more of us have than we realize have) can be helped by probiotics.
Stress increases cortisol levels which affects insulin and increases inflammation.
Hormonal imbalances can also affect it. This article only mentioned menopause, but I am still interested in learn how hormonal changes in pregnancy and menstruation could affect inflammation.
Environmental toxins can contribute.
Panic attacks or being severely frightened (dream or other wise) causes the blood vessels to dilate. Could a vein malformation and fright cause more blood to be refluxed? Probably.
I enjoyed this article about things that cause inflammation:
http://www.womentowomen.com/inflammation/causes.aspx, a recommended read if you are serious about lessening your inflammation. Also more specific diet suggestions for reduce inflammation: http://www.womentowomen.com/inflammation/naturalantiinflammatories.aspx
Just a quick overview:
Diet is huge, too much insulin causes inflammation, so low carb diets are helpful.
A proper balance of omega-3 and omega-6 oils is crucial.
Avoiding food sensitivities helps.
Intestinal inflammation (which more of us have than we realize have) can be helped by probiotics.
Stress increases cortisol levels which affects insulin and increases inflammation.
Hormonal imbalances can also affect it. This article only mentioned menopause, but I am still interested in learn how hormonal changes in pregnancy and menstruation could affect inflammation.
Environmental toxins can contribute.
Panic attacks or being severely frightened (dream or other wise) causes the blood vessels to dilate. Could a vein malformation and fright cause more blood to be refluxed? Probably.
11/9/09
More on CCSVI
I spent this morning calling different doctors in my area and it seems this is so new and specialized that they are referring me to Dr. Dake at Stanford University. I will be filling out the proper forms to be evaluated by him.
This website: www.ms-mri.com lists collaborators that are currently testing and treating CCSVI. It also has a cool video of what the veins might look like.
This link: http://www.thisisms.com/forum-40.html is a forum dedicated to those who have been treated for CCSVI or are planning on doing so.
This link: http://www.bnac.net/?page_id=496 is a study they are doing in Buffalo. I have emailed them and I am still waiting on hearing back. It sounds like this study is geared toward testing for it and possibly not treating it. We'll see.
I think that someday this will be a routine test and procedure they do when looking at MS. I want to be one who benefits from it now and not wait until it is "proven effective." I have confidence it will be.
This website: www.ms-mri.com lists collaborators that are currently testing and treating CCSVI. It also has a cool video of what the veins might look like.
This link: http://www.thisisms.com/forum-40.html is a forum dedicated to those who have been treated for CCSVI or are planning on doing so.
This link: http://www.bnac.net/?page_id=496 is a study they are doing in Buffalo. I have emailed them and I am still waiting on hearing back. It sounds like this study is geared toward testing for it and possibly not treating it. We'll see.
I think that someday this will be a routine test and procedure they do when looking at MS. I want to be one who benefits from it now and not wait until it is "proven effective." I have confidence it will be.
11/7/09
CCSVI and MS
So I woke up this morning at 5am, unable to turn off my brain. I just keep thinking about this CCSVI in MS. I think it answers a lot of questions I have had. I hope I can convey my thoughts correctly and make sense of all this medical lingo.
CCSVI is short for Chronic cerebrospinal venous insufficiency, basically it is a malformation of a vein, usually in jugular veins.
A doctor in Italy noticed that 100% of the patients with MS have CCSVI and the control group, made up of healthy patients and even some with neurological issues, like Parkinson's, did not have CCSVI. This has been confirmed in the Untied States as well. This is really new and in the process of being studied, but they have been able to fix these veins with stents and are seeing great results; but so far, long term results do not currently exist.
So this doctor Zamboni theorizes that once blood reaches the brain it gets "trapped" or "back-lashed" because of the malformed vein. This leaves iron and other toxic deposits on the brain, actually causing the brain/nerve damage. This is a potential weakening factor in the blood-brain barrier.
Here is a quote I found that I agree with: "The report on the CCSVI meeting. They are 500 for 500 in Italy and both Stanford and Buffalo have confirmed that every MS patient they have examined has CCSVI. We can now say without any reasonable doubt that MS is primarily a vascular disease and secondarily an autoimmune disease. Any reasonable treatment for MS must address BOTH the vascular component and the autoimmune component. The great value and success of the nutritional strategies are because they treat both components."
In response to that post, someone left this comment: "I agree, to a certain point. Jeff was stable and in "remission" on the swank diet and the endothelial health program I devised for him with the input of Dr. John Cooke of Stanford. However, even after living a low fat, healthy and active lifestyle with plenty of vitamin D, antioxidants, and proteolytic enzymes...he still had two closed internal jugular veins, and reflux of damaging blood into his brain. He has most likely had this his whole life. He felt almost an immediate relief of fatigue and heat intolerance after the stents were put in, and four months later, he continues to heal. Less bladder urgency, less spasms, much better sleep, much clearer head. He will continue to remain on his program (just as a heart attack or stroke victim should)....but his stenosis would not have gone away on its own, I'm afraid to say. Diet, exercise, nutrition, etc can help keep blood moving, but it appears (in all the cases we've seen so far) only endovascular surgery can remove a stenosis. cheer"
I agree with both of these statements. These malformed veins were formed in embryo, whether due to genetics or embryonic problems. I feel that proper diet is essential to lessen these "back washes" of blood, but possibly no amount of nutrition can fix a birth defect, a stent could be the best bet for stopping future reflux.
So here are some of the questions that have left me a little baffled that have been potentially answered by CCSVI (again I will state that all of these things are my opinion and interpretation):
When scientists "induce" MS in mice and then treat them with different experimental drugs or supplements they get amazing results, but when testing those same substances on human MS patients the results have been much less amazing and generally left aside. The answer: CCSVI. They have not "induced" a vein blockage in the mice leaving many variables unresolved.
Doctors have these "great" drugs for auto-immune disorders and yet patients with MS still continue to decline while on them. The answer: CCSVI. The vein malformations are not addressed, the damage is still occurring because of this.
Why do we see MS so often in families when supposedly there are only slight genetic markers? The answer: CCSVI. Maybe these "birth defects" are more genetic, or have to do with a specific deficiency that the mother has.
Why me? I have always felt that I have eaten healthier than most standard Americans. I have never smoked, drank alcohol or used drugs, I have even never had caffeinated beverages, well maybe one in my whole life. My dad is a chiropractor and has tried his hardest to provide us with the healthier alternatives. The answer: CCSVI. This is something I was born with and it is now finally causing problems after a lifetime of toxic build-up on the brain.
So what can one do while they are waiting to be tested and treated for this?
This is what wikipedia says: "Being a physical flow problem is expected that Occupational hygiene practices, like Ergonomics could reduce the consequences of the reflux, but again, no studies exist to date. Endothelial disrupters (saturated fats, cigarette smoking, heavy metals, excessive alcohol, toxins, EBV, etc) are dangerous in this condition."
As stated previously, I feel diet is huge. Getting rid of the junk in your diet is imperative. If blood is going to back-splash on my brain than I want it to be the cleanest blood I can make it.
There are lots of diets that claim to help MS (Raw, Swank, Best Bet Diet, Ph Diet, Whole Foods), and personally I believe them, but I think it comes down to three specific things, the elimination of all saturated and processed or cooked oils, getting rid of toxins and excess chemicals in the foods we eat and increasing vegetable and fruit intake, which I feel are life, they heal and cleanse, two things that bread and meat just can't do.
This website, www.mscures.com, has very interesting things to say about oils and claims that by eliminating them you can cure your MS. I feel this is because of CCSVI. Your veins will be healthier and not get as clogged if these bad fats are avoided. By the way, ALL processed foods use these bad fats, sorry, no crackers, no bread, no store bought salad dressings.
I also think that good fats are very important! Don't avoid all fats and oils just because they are fats and oils. Cold pressed, virgin oils actually help lessen strokes and heart attacks, improve you cholesterol and most importantly, YOUR BRAIN NEEDS GOOD FATS TO WORK AND REGROW.
Exercise is also very important for circulation and it triggers the chemicals that help regrow myelin.
CCSVI is short for Chronic cerebrospinal venous insufficiency, basically it is a malformation of a vein, usually in jugular veins.
A doctor in Italy noticed that 100% of the patients with MS have CCSVI and the control group, made up of healthy patients and even some with neurological issues, like Parkinson's, did not have CCSVI. This has been confirmed in the Untied States as well. This is really new and in the process of being studied, but they have been able to fix these veins with stents and are seeing great results; but so far, long term results do not currently exist.
So this doctor Zamboni theorizes that once blood reaches the brain it gets "trapped" or "back-lashed" because of the malformed vein. This leaves iron and other toxic deposits on the brain, actually causing the brain/nerve damage. This is a potential weakening factor in the blood-brain barrier.
Here is a quote I found that I agree with: "The report on the CCSVI meeting. They are 500 for 500 in Italy and both Stanford and Buffalo have confirmed that every MS patient they have examined has CCSVI. We can now say without any reasonable doubt that MS is primarily a vascular disease and secondarily an autoimmune disease. Any reasonable treatment for MS must address BOTH the vascular component and the autoimmune component. The great value and success of the nutritional strategies are because they treat both components."
In response to that post, someone left this comment: "I agree, to a certain point. Jeff was stable and in "remission" on the swank diet and the endothelial health program I devised for him with the input of Dr. John Cooke of Stanford. However, even after living a low fat, healthy and active lifestyle with plenty of vitamin D, antioxidants, and proteolytic enzymes...he still had two closed internal jugular veins, and reflux of damaging blood into his brain. He has most likely had this his whole life. He felt almost an immediate relief of fatigue and heat intolerance after the stents were put in, and four months later, he continues to heal. Less bladder urgency, less spasms, much better sleep, much clearer head. He will continue to remain on his program (just as a heart attack or stroke victim should)....but his stenosis would not have gone away on its own, I'm afraid to say. Diet, exercise, nutrition, etc can help keep blood moving, but it appears (in all the cases we've seen so far) only endovascular surgery can remove a stenosis. cheer"
I agree with both of these statements. These malformed veins were formed in embryo, whether due to genetics or embryonic problems. I feel that proper diet is essential to lessen these "back washes" of blood, but possibly no amount of nutrition can fix a birth defect, a stent could be the best bet for stopping future reflux.
So here are some of the questions that have left me a little baffled that have been potentially answered by CCSVI (again I will state that all of these things are my opinion and interpretation):
When scientists "induce" MS in mice and then treat them with different experimental drugs or supplements they get amazing results, but when testing those same substances on human MS patients the results have been much less amazing and generally left aside. The answer: CCSVI. They have not "induced" a vein blockage in the mice leaving many variables unresolved.
Doctors have these "great" drugs for auto-immune disorders and yet patients with MS still continue to decline while on them. The answer: CCSVI. The vein malformations are not addressed, the damage is still occurring because of this.
Why do we see MS so often in families when supposedly there are only slight genetic markers? The answer: CCSVI. Maybe these "birth defects" are more genetic, or have to do with a specific deficiency that the mother has.
Why me? I have always felt that I have eaten healthier than most standard Americans. I have never smoked, drank alcohol or used drugs, I have even never had caffeinated beverages, well maybe one in my whole life. My dad is a chiropractor and has tried his hardest to provide us with the healthier alternatives. The answer: CCSVI. This is something I was born with and it is now finally causing problems after a lifetime of toxic build-up on the brain.
So what can one do while they are waiting to be tested and treated for this?
This is what wikipedia says: "Being a physical flow problem is expected that Occupational hygiene practices, like Ergonomics could reduce the consequences of the reflux, but again, no studies exist to date. Endothelial disrupters (saturated fats, cigarette smoking, heavy metals, excessive alcohol, toxins, EBV, etc) are dangerous in this condition."
As stated previously, I feel diet is huge. Getting rid of the junk in your diet is imperative. If blood is going to back-splash on my brain than I want it to be the cleanest blood I can make it.
There are lots of diets that claim to help MS (Raw, Swank, Best Bet Diet, Ph Diet, Whole Foods), and personally I believe them, but I think it comes down to three specific things, the elimination of all saturated and processed or cooked oils, getting rid of toxins and excess chemicals in the foods we eat and increasing vegetable and fruit intake, which I feel are life, they heal and cleanse, two things that bread and meat just can't do.
This website, www.mscures.com, has very interesting things to say about oils and claims that by eliminating them you can cure your MS. I feel this is because of CCSVI. Your veins will be healthier and not get as clogged if these bad fats are avoided. By the way, ALL processed foods use these bad fats, sorry, no crackers, no bread, no store bought salad dressings.
I also think that good fats are very important! Don't avoid all fats and oils just because they are fats and oils. Cold pressed, virgin oils actually help lessen strokes and heart attacks, improve you cholesterol and most importantly, YOUR BRAIN NEEDS GOOD FATS TO WORK AND REGROW.
Exercise is also very important for circulation and it triggers the chemicals that help regrow myelin.
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