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.

17 comments:

  1. Good find Sarah, this seems to explain a lot of the mystery behind MS.

    What has to be done to check if you have CCSVI? Are they doing this surgery in America yet?

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  2. This is a website that outlines the testing protocol and offers the proper info that should be taken to a neurologist.
    http://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.

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  3. Did you get any response from the University of Utah?

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  4. I 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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  6. The self professed inventor of www.mscures.com, Duane Bennett, who speaks of his son having MS, passed away from MS in November 2009.

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  7. Adding to statement; Duane Bennetts son passed away, not himself.

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  11. After 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.”

    Other 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

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  12. Thanks for sharing a idea....Great post and informative
    CCSVI Cancun

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  13. David Summers, a 37 year old MS patient from Murfreesboro, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs.
    “It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in Duluth Georgia. “The Interventional Radiologist who did it told me that 50% of all MS patients who have the jugular vein-clearing therapy eventually restenose. I didn’t believe that would happen to me if I could get it done. But I have had MS for 16 years and apparently my veins were pretty twisted up”. Within 90 days, David’s veins had narrowed again, and worse, they were now blocked in even more places than before his procedure.
    “I was so happy after my original procedure in 2010. I immediately lost all of the typical symptoms of MS. The cog fog disappeared, my speech came back, the vision in my right eye improved, I was able to regulate my body temperature again, and some of the sensation in my hands came back. But as much as I wanted to believe I felt something, there was nothing below the waist. I kind of knew that I wouldn’t get anything back in my legs. There was just way too much nerve damage now”. But any improvements felt by David lasted for just a few months.
    After his relapse, David and his family were frustrated but undaunted. They had seen what opening the jugular veins could do to improve him. Because the veins had closed so quickly after his liberation procedure, they considered another clinic that advocated stent implants to keep the veins open, but upon doing their due diligence, they decided it was just too risky. They kept on searching the many CCSVI information sites that were cropping up on the Internet for something that offered more hope. Finding a suitable treatment, especially where there was no known cure for the disease was also a race against time. David was still suffering new attacks and was definitely deteriorating. Then David’s mother Janice began reading some patient blogs about a Clinic that was offering both the liberation therapy and adult autologous stem cell injections in a series of procedures during a hospital stay. “These patients were reporting a ‘full recovery’ of their neurodegenerative deficits” says Janice, “I hadn’t seen anything like that anywhere else”. She contacted CCSVI Clinic in late 2011 and after a succession of calls with the researchers and surgeons they decided in favor of the combination therapies.For more information please visit http://www.ccsviclinic.ca/?p=904

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  14. http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be
    Over the past year, CCSVI Clinic and its researchers and specialists have been studying the Combination venoplasty/autologous stem cell infusion protocol developed by Regenetek Cellular Technologies with the collaboration of outside labs and bioproducts manufacturers. As laboratory techniques gain ever-increasing sophistication based on new scientific methodologies for enhancing somatic cells into preferred lineages in vitro, the therapeutic outcomes for patients with neurological disorders have also been improving. Deb O’Connell who was treated at the Clinic in mid-September, 2012 recovered so quickly from her serious long-term degenerative disease condition that she experienced a wave of improvements while still in the hospital.
    It’s a matter of medical record that Deb had been wheelchair bound for 10 years (completely non-ambulatory) with multiple co-morbidities when she entered the program on September 9; she was 9.5 on the EDSS scale as assessed by a neurologist, was down to 80 lbs in body weight, could not breathe effectively, speak, or take in food by mouth due to dysphagia. Her pain was chronic and significant. When she left the Clinic on September 24th , she walked out of the doors and into a waiting van to go to the airport. At the time of her discharge from the Clinic, she could breathe normally, effectively speak once again, eat any types of food she desired and her pain had all but disappeared. At the time of this writing she is back home in Canada and reports that she continues to recover (especially her contractured hands), shows no signs of new disease symptoms, and has gained 18 lbs since her therapies, less than 3 weeks ago. She has now begun a regular physiotherapy program and is gaining walking strength and balance. The recapitulation of the course of her disease (MS) within days, provides evidence that the in vitro requirement of cell pluripotency has correctly been identified with respect to adult cell source origin, time, and manipulation in culture. http://www.ccsviclinic.ca/?p=1084
    http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be

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  15. Everything is very clear.It was truly informative.Your website is very useful.Thank you for sharing.

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  16. A significant world-wide population of multiple sclerosis (MS) patients have a chronic progressive neurological disease that is characterized by increasing disabilities. No treatments are currently available that slow, halt, or reverse the advancement of the disease in established cases of MS. The frustration in a growing number of patients and their readiness to pursue unproven therapies speaks to the lack of effective treatments available and is further indicative of a vast, unmet clinical need. On the basis of evidence that there is a vascular association to MS (characterized by anomalies of primary veins in the neck that restrict the normal outflow of blood from the brain to the heart), and that mesenchymal stem cells (MSCs) have a beneficial effect in acute and chronic cases of multiple sclerosis as determined in various clinical trials, we undertook the assessment of the safety, efficacy, and reproducibility of a novel approach that has vascular-protective, neuroprotective and regenerative therapeutic potential for all phases of multiple sclerosis.For more information please visit http://www.ccsviclinic.ca/?p=1194 or you may call the toll free number at 888-468-1554 or info@ccsviclinic.com

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