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.
11/7/09
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Good find Sarah, this seems to explain a lot of the mystery behind MS.
ReplyDeleteWhat has to be done to check if you have CCSVI? Are they doing this surgery in America yet?
This is a website that outlines the testing protocol and offers the proper info that should be taken to a neurologist.
ReplyDeletehttp://www.ms-mri.com/protocol.php
Dr. Michael Drake of Stanford University in California is currently preforming many of these tests and corrections. I am going to ask my neuro if he wants to participate in this, if not, my next step is to go to one of the head neuros at the University of Utah. I feel a strong urge to correct this problem before more damage occurs.
It is Dr. Dake, not Drake.
ReplyDeleteDid you get any response from the University of Utah?
ReplyDeleteI have not tried to get a hold of anyone at the University of Utah. My Aunt had mentioned they were going through some sort of transition at the time, but it has been a couple of months since.
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ReplyDeleteThe self professed inventor of www.mscures.com, Duane Bennett, who speaks of his son having MS, passed away from MS in November 2009.
ReplyDeleteAdding to statement; Duane Bennetts son passed away, not himself.
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ReplyDeleteAfter 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
ReplyDeleteOther recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.
Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.
Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.
Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit http://ccsviclinic.ca/?p=838