Non-Surgical Options for CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Non-Surgical Options for CCSVI

Postby daniel » Mon Jun 15, 2009 2:08 pm

Hi All,

I'd like to get everyone's input regarding what can be done to help with CCSVI for those of us who can't get the stent placements at the moment.

I've been reading that breathing exercises could be good for vasolidation, as well as b3/niacin, and possibly even LDN. Anyone more knowledgeable please correct me if I'm wrong with any of these and add any more information you have if possible (diet/exercise/etc)

Thanks,

Dan
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Re: Non-Surgical Options for CCSVI

Postby cheerleader » Mon Jun 15, 2009 2:30 pm

daniel wrote:Hi All,

I'd like to get everyone's input regarding what can be done to help with CCSVI for those of us who can't get the stent placements at the moment.

I've been reading that breathing exercises could be good for vasolidation, as well as b3/niacin, and possibly even LDN. Anyone more knowledgeable please correct me if I'm wrong with any of these and add any more information you have if possible (diet/exercise/etc)

Thanks,

Dan


All good, Dan. Here's a paper I wrote up last fall - my program for Jeff...includes proteolytic (protein-eating) enzymes, and lots of info on vasodilation and nitric oxide balancing. Alot can be done to help encourage venous health with stress reduction, low fat diet, exercise, sunshine, and supplements- especially if you are young and early in the disease course-
endothelial health

I sent this paper to Dr. John Cooke at Stanford, to get his input on helping the vascular/endothelial system in MS patients. He has written a wonderful book on endothelial health and diet called The Cardiovascular Cure. This was before Dr. Zamboni's research was published, and Dr. Cooke was very gracious in reading the paper and encouraging me. After Dr. Zamboni's research came out, he put me in touch with Dr. Dake, and the pieces started coming together.

I hope this program can keep your blood flowing until you are able to be scanned and treated- a heart healthy lifestyle is a venous healthy lifestyle- it's all one body!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ernst » Mon Jun 15, 2009 11:20 pm

Cheer,

I just red your exellent endothelial health document. It was wonderful to read and lots of good info and points.

You wrote that you were "queen of google" :D I must say that I have been "king of google" :D :D , reading lots of researches and articles. One of my main interests have been circulation, vascular functions. The list of diseases (in your document) with endothelial malfunctions was very good one and ideas why veins are not healthy in modern society, so true.

When I found this CCSVI and red Zamboni researches, I became convinced that "this is it"! It all makes sense, and now I feel like puzzles go-together. Now I understand, why the diet and life-style change helped my wife radically - big changes in blood values, metabolism, immunesystem, etc. --> her blood moves better, her veins are healthier. Biggest problem was fatigue, which disappeared ini 2-3 months. It doesn't mean that ms is cured, maybe better to say that it's in control, at least so far.

But back to your endothial document - very good work, thank you :wink:
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby javaneen » Tue Jun 16, 2009 6:24 am

I am interested in reading that paper Cheer but not sure how to open it. Do I have to join that site as a meember in order to be able to download it?
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Postby daniel » Tue Jun 16, 2009 6:54 am

javaneen wrote:I am interested in reading that paper Cheer but not sure how to open it. Do I have to join that site as a meember in order to be able to download it?


javaneen, you just need to click the download link and wait 50+seconds (there's a countdown under the download button) until it lets you download the file. It's a PDF file so you may need adobe reader if you don't already have it installed.
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Postby cheerleader » Tue Jun 16, 2009 7:55 am

Glad you found the paper helpful, guys. I've been on the circulation/blood trail since Jeff's diagnosis. I came to this site, and people like Jimmylegs, gibbledygook, Dim, Nick and others helped me to understand the importance of supplements and nutrition...there was a lightbulb moment when I saw how much better Jeff was doing on the low fat Swank diet, with proteolytic enzymes and antioxidants. He was healing! I knew this wasn't the "cure" or mechanism for MS, but I could see that using vasodilators and detoxifying his blood was keeping him stable. Dr. Zamboni's research was the missing piece.

I believe that a "heart healthy" program, like the one recommended to those with cardiovascular disease, will be a large part of keeping MS patients healthy. And yes, our modern life has changed our chemical balance. There are so many nitric oxide disrupters we come in contact with everyday- (smog, plastics, heavy metals, pesticides) - in the last 100 years we have changed ourselves and our planet. We need to reestablish endothelial balance in the body in order to heal.
PM me if you have trouble downloading the paper- I'll e-mail it-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Tue Jun 16, 2009 8:22 am

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Last edited by chrishasms on Sat Dec 05, 2009 6:36 pm, edited 1 time in total.
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Postby zap » Tue Jun 16, 2009 6:11 pm

Zamboni is interested in keeping iron levels down - even deficient, apparently under the theory that the high iron levels in the MS brain are causative of damage, and not just incidental to it ...

http://jrsm.rsmjournals.com/cgi/reprint/99/11/589

so perhaps avoid iron supplements, and if you're feeling experimental, set anemia as a goal - if you're feeling downright adventurous, go for some old-fashioned blood letting ... err, therapeutic phlebotomy.

http://www.ironoverload.org/treatment.html
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Postby cheerleader » Tue Jun 16, 2009 6:41 pm

Zap....There's lots on iron here. Search function "chelator" or "iron" and you'll get all the past discussions. Here is a snippet from a thread from December, discussing binding iron naturally.

Hi Dmitris!
I mentioned those natural chelators on the endothelial health thread, since Jeff takes them. You must have missed it...now it's here on the iron thread as well. Thanks for mentioning them.

We've been discussing iron and its role in endothelial damage in the general thread- and I wanted to list the supplements in this protocol which are known iron chelators, these bind free iron in the blood thru the digestive tract and liver and excrete it:

Bioflavonoids (what gives fruits and leaves their color):
Quercetin (onions and apples), EGCG (green tea) and resveratrol
Phytic acid : found in whole grains, sesame, rice brain, seeds and nuts

Most important, a healthy liver! Milk thistle (silymarin) helps the liver cells handle all of the extra iron and toxins that come thru- outward signs such as petechia, varicose veins, rashes, jaundice and high liver enzymes all speak of an overwhelmed liver.

AC


Merry Christmas and a healthy and happy 2009 for you and your dear wife,
Joan


Here's the iron thread-
http://www.thisisms.com/ftopict-5671-chelator.html

This is actually the first place the Zamboni CCSVI research is posted by Dignan...fascinating to go back.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby zap » Tue Jun 16, 2009 6:53 pm

Cool - thanks for the link, but I posted this in here though since it was potentially relevant to the OP's question about pre-surgical diet/treatment options ...
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Postby daniel » Tue Jun 16, 2009 7:49 pm

Thank you all so far.

I've been lightly following the BBD by avoiding wheat/dairy/legumes (not so much always cutting down all fats.. can't say i'd know how to give up steaks entirely :( ), and eating more fruits and vegetables... but I believe there's lots of room for improvement. I do however miss cheese and other foods as well...

I'm going to use this information to compile everything into a do/avoid list and hopefully come up with an easy routine I can follow daily/weekly to make things easier. I find if I at least have a plan/schedule... it's a lot easier to follow than having to think every day what to choose to eat, where to get it, etc

eg.
Daily:
- take copaxone shot
- yoga 20min
- cardio exercise 20min
- weightlifting exercise 20min
- fruit + vegetable smoothie
- take daily supplements

Sunday:
- rest
- prepare all supplements into sandwich bags for the following week
- prepare work lunches for the week
- cut up lettuce/greens for salads
- grill some chicken to use in salads
- go shopping for bananas, apples, nuts, snacks for work week

One Week of the Month:
- daily milk thistly supplement

maybe I should post in the regimens section and ask for tips there as well...
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Postby javaneen » Wed Jun 17, 2009 12:07 pm

Great read Cheer! Did you write that before or after you knew that Jeff had stenosis in his IJV? Do you think you would add anything differnt now?

I take the Alive Multi Vitamin with many other additional suppliments. I'll have to re-evaluate my daily intake and see what I can change or add. The only problem is that my husband and I currently are thinking of having another kid and I saw a high risk OB group to discuss my meds with them and they told me I should stop all my vitamin and suppliments...even the cod liver oil. I am very dissapppointed about that and I am going ot look into this in more detail. The crazy thing is that they told me to stop the vitamins but I could continue to do my once a month IV steroid and my once a month IVIG. Crazy that I have to stop what is healthy for me but can continue using something that is a medication. She told me to take a flinstones vitamine once a day that it is equivalent to the prescription strenght prenatal vitamins. I'll have to figure out what works best for me.

Thanks again for sharing that paper with all of us and for all your hard work! Your the best!
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Postby cheerleader » Wed Jun 17, 2009 12:46 pm

javaneen wrote:Great read Cheer! Did you write that before or after you knew that Jeff had stenosis in his IJV? Do you think you would add anything differnt now?

I take the Alive Multi Vitamin with many other additional suppliments. I'll have to re-evaluate my daily intake and see what I can change or add. The only problem is that my husband and I currently are thinking of having another kid and I saw a high risk OB group to discuss my meds with them and they told me I should stop all my vitamin and suppliments...even the cod liver oil. I am very dissapppointed about that and I am going ot look into this in more detail. The crazy thing is that they told me to stop the vitamins but I could continue to do my once a month IV steroid and my once a month IVIG. Crazy that I have to stop what is healthy for me but can continue using something that is a medication. She told me to take a flinstones vitamine once a day that it is equivalent to the prescription strenght prenatal vitamins. I'll have to figure out what works best for me.

Thanks again for sharing that paper with all of us and for all your hard work! Your the best!


I wrote this paper back in October of '08, before the Zamboni research, and way before we saw Jeff's stenosis in his jugulars. I wrote it because I saw that there was something going on in his circulation and blood, and the program addressed ways to return to "endothelial health"....meaning nitric oxide balance and healthy bloodflow. It was this paper, which I sent last fall to Dr. John Cooke at Stanford (an endothelial researcher/author of The Cardiovascular Cure) that put me in touch with Dr. Dake. Don't think there's anything to change or add...although Jeff's recent diagnosis as CCSVI and stent treatment sure make a good ending! I think there's much we can do to keep the blood flowing and veins and arteries healthy. This is why so many MSers find stability with Swank, BBdiet, supplements, yoga, lifestyle, prokarin, vitamin D...you name it. All are conducive to endothelial health, nitric oxide balance and good circulation.

I'm sorry your prenatal docs don't understand why you want to take these supplements, Javaneen...perhaps explain this paradigm to them. You know your body better than they do...

Daniel, I encourage you to write up your regimen and post it in that forum. That's how I started with Jeff's routine...and lots of people gave me input and great ideas. It's a good way to help others and chart your progress.

We're all learning together here at TIMS....which is why it's such a vital and important resource for all of us.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Non-Surgical Options for CCSVI

Postby NHE » Wed Jun 17, 2009 1:55 pm

javaneen wrote:...even the cod liver oil.

I'm just thinking out loud here so I could be totally off base. However, I was wondering if it was the vitamin A content in cod liver oil that they objected to? Cod liver oil tends to be pretty rich in vitamin A. When I was taking it, just two 500 mg capsules (much less than a teaspoon) would provide 2500 IU of vitamin A which is a good number for a daily maximum intake for an adult. If it's the omega-3 oil and the vitamin D you were after, then you might be able to take regular fish oil supplements and separate vitamin D.

NHE
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Postby Ernst » Thu Jun 18, 2009 2:23 pm

Vascular health was one big goal, when I and my wife changed our diet. We eat lots of raw vegetables and salad - and fruits. We are lucky to have blueberries in our forests, so every summer we pick enough blueberries to eat every day, even winter time. I think that CCSVI stent operations are something that happens in future, for ms patients. So now we'll just slow the disease process.. and we've had success with it, at least symptoms disappeared after wife's dx.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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