Diet and CCSVI

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

Diet and CCSVI

Postby astro » Sun Dec 13, 2009 8:44 pm

I feel that I am mostly educated on MS, right up to where it comes to diet (and I know I could eat better). I've rededicated myself to learning more, although now I'm curious what everyone is thinking (or re-thinking) in the context of CCSVI. Do we lower our iron intake at the risk of anemia? Do we increase our intake of "blood thinning" foods at the risk of other problems?

I would appreciate any ideas or lessons learned, or please just point this newbie to the right post. Thanks!
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Re: Diet and CCSVI

Postby CureIous » Mon Dec 14, 2009 12:47 am

astro wrote:I feel that I am mostly educated on MS, right up to where it comes to diet (and I know I could eat better). I've rededicated myself to learning more, although now I'm curious what everyone is thinking (or re-thinking) in the context of CCSVI. Do we lower our iron intake at the risk of anemia? Do we increase our intake of "blood thinning" foods at the risk of other problems?

I would appreciate any ideas or lessons learned, or please just point this newbie to the right post. Thanks!


We get the iron question a lot, as most people know iron is in the blood, and anemia and all that. No, as far as anyone knows, all that will do is make you sick and anemic, and won't stop iron from getting in your brain, or so sayeth the model, but DEFINITELY do not just start dumping iron out of your system or lowering it without doc recommend. Well intentioned but bad idea, and does nothing to affect your iron deposition in the brain. We have anemic people with MS, nuff said.

Not sure if taking blood thinning foods is going to make a huge impact either way. However diet is muy importante along with exercise, and not just to keep your muskels all lean and mean, but to keep your BLOOD flowing too, particularly the blood in your head that needs to amscray out of there and get back to the heart posthaste. And of course, that happens when you exhale, and the stronger you exhale, the more the blood takes a hike down the jugular trail. Can you see how couch potatoing can contribute to this disease model? Btw I'm talking actual CP's like me not those who are disabled and unable to be physically active. Important distinction. Make sure to check out Cheerleader's endothelial health program and print it out and read it. I can't copy it into the post but here's the link if you have facebook:
http://www.facebook.com/note.php?note_id=123456602210

Oh and welcome to the boards Astro...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby jimmylegs » Mon Dec 14, 2009 5:39 am

welcome astro, in addition to cheer's program you can also find nutrition info on ms at the links in my signature below.

i have a supplement topic under regimens, Ortho Biochem for short. it's all about exploring nutrient issues in ms.

i second mark, and i have stated repeatedly here at TIMS, do not dump iron intake. especially if you are female and pre-menopausal.

i agree with much of cheer's program, but personally i switch it up a little.

for example, i don't bother with:

DHEA (to balance hormonal levels) 25mg.
CO-Q10 200 mg.
Alpha Lipoic Acid 300 mg.
Inosine
Glisodin (antioxidant catalyst) 500mg.
Glutathione (antioxidant) 1000 mg
Cod Liver Oil (DHA/EPA) 1000 mg. .
Microalgae Oil 200mg.
Grape Seed Extract 200mg.
EGCG (green tea extract) 600mg
Quercetin 400mg
bromelain 400mg
Serrapeptase-enzyme 500mg
Nannokinase-enzyme 2000FU
Milk Thistle (liver tonic) 350 mg. everyday for one week out of the month
Salvia 60mg.
Ginko 60mg
Curcumin 500mg

i take a multivit/multimin, vit D, extra cal/mag, extra se, extra zn, extra C, vit E8 complex, [edit: i forgot, extra b-complex and sometimes some iron] and fish oil (really good for blood thinning btw). recently picked up some potassium to help the magnesium out. i am also careful with my diet, although i don't agree (to date) with the common idea of ruling out gluten, legumes, and dairy (i could be wrong but i think zinc repletion can counter a lot of the sensitivities involved there - it's a tough subject to research)

i do lots of bloodwork to make sure i'm getting the right results from my program.

i am a huge proponent of zinc for ms as you will find out if you read pretty much any post by yours truly (i go through phases - B12, vit D, very important stuff but zinc is really connected to so many things that it has become a primary recommendation from my point of view).

zinc is known to be low in ms patients. while you can take inosine to raise uric acid levels, (also known to be low in ms) i have found in the literature and then experimented on myself to confirm that supplementing zinc raises uric acid levels. it does a couple hundred other things for you too, which you can't say about inosine.

when my zinc was 8.6 my uric acid was 194 (dead on the ms average) or lower. years later when i got my zinc up to 16.1, my uric acid was 278 (approaching healthy controls).

optimizing zinc also raises glutathione levels (similar to certain drugs for ms), so i don't take glutathione either.

zinc repairs liver damage.

zinc helps your body handle vitamin A, so it's important for vision. zinc deficiency can result in optic neuropathy, a presenting symptom in 25% of ms patients.

in zinc deficiency, autoimmune reactions are heightened.

inflammation increases in zinc deficiency.

zinc is required for maintaining structural integrity of endothelial cells. without zinc, tight junctions between endothelial cells fail. an exception is the BBB, which is resistant to zinc deficiency, but BBB permeability is still exacerbated in zinc deficiency.

i agree that 50mg zinc per day is a good therapeutic amount for ms patients. once you have your levels in up to 18.2 umol/l, you would be in the 'healthy control' zone.

now with all that said, i don't think i was ever as sick as cheer's hubby jeff. he needed surgery to accomplish his largest recovery and the regimen could only take him so far. i still don't know what problems with circulation i might have. but my active job and diet and supplement regimen combined have me in decent shape so far.
Last edited by jimmylegs on Tue Dec 15, 2009 5:07 am, edited 1 time in total.
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Postby Johnnymac » Mon Dec 14, 2009 7:23 am

something else to consider is Horse Chestnut.

http://www.nlm.nih.gov/medlineplus/drug ... stnut.html
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Postby tzootsi » Mon Dec 14, 2009 8:50 am

I think diet is a definite factor. Dr Swank was on the right track 50 years ago when he developed his low saturated fat diet. He knew there was a vascular element to MS. Ashton Embry and Ann Sawyer also recommend eliminating dairy, gluten and legumes, mainly because they can upset the immune system in many people. Vitamin D is also an immune system regulator, and can possibly help the circulatory system too. There are so many factors at work in ms, and CCSVI could explain why diet, supplements and exercise help so many.
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Postby astro » Mon Dec 14, 2009 9:11 pm

Thanks for the input. I must admit that reading the replies and Cheerleader's endothelial health program are somewhat intimidating. I'm actually more concerned about the diet issue now given my current diet breaks many of the rules. I am especially saddened to see that dairy is a no-no. I eat quite a bit of dairy. Having three small children, and the crazy lifestyle that comes with it, makes following a strict diet regimen a little tricky, too.

Oh well, if it makes me feel better, I'm willing to try! Maybe if I start small, and build from there...
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Postby cheerleader » Mon Dec 14, 2009 10:13 pm

astro wrote:
Oh well, if it makes me feel better, I'm willing to try! Maybe if I start small, and build from there...


Astro...don't be intimidated...I was doing the cooking and food and supplement buying, all Jeff had to do was pull a chair up to the table :)

It's harder if you're the one doing the food preparing. Small steps to take: try low fat cheeses and dairy, use more fish and white meat, less red meat, eat more fruits and vegetables, cut back on "white" foods (pastas, breads and simple sugars) Try not to buy processed foods that have trans fats and corn syrup. Snack on walnuts, dried blueberries, fruit smoothies. These are all good, easy things to do now. A magnesium/calcium/zinc supplement (they sell them all together) is a good idea, like Jimmy suggests. Maybe read up on the Swank or Best Bet diets if you get a minute. You'll get there.
A CCSVI diet is a heart healthy diet-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby skydog » Mon Dec 14, 2009 10:49 pm

Welcome Astro, JL is pretty much right on it when it comes to diet/supplements and cheers done a fantastic job with her program for Jeff which would benefit anyone regardless whether the had any health issues or not. I on the other hand am trying to get as much from strictly diet. I eat mostly raw and organically grown foods. By consuming the right combination of food I feel that it is possible to get what we need. Oysters for zinc, Salmon for a omega-3 boost ect. but try to get most from the raw fruits and vegetables. And yes I eat the fish and oysters raw also. I do supplement vitamin D in the dead of winter and take a occasional high quality men's multi just for the vitamins I might be missing. I know this is not an easy venture for some because of location but anything you can grow and consume fresh is always best. For me this possible from my nearly year round gardening. Most vegetables loose 80% of there food value within hrs after harvest and a 100% after mother nature freeze dries the land. Kinda a frugivore for the time being. Eat well Be well, Mark
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Postby BBE » Tue Dec 15, 2009 3:28 am

Honestly, do you take all the 20 and more supplements every day? I can`t convince my girlfriend to take them every day. We make many breaks and take the daily dose in e.g. three days. She is concerned there is something inside that accumulates.
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Postby jimmylegs » Tue Dec 15, 2009 5:15 am

i USED to try to get everything from food without pills, like mark, but i was a vegan so that was pretty stupid. once i started getting symptoms i still tried to ignore it. so, eventually ms changed my mind for me but i did not believe that a dietary change only would correct 15 years of letting things slide. also, my diet is pretty darned healthy but if i drop the supplements i start seeing the signs quickly. it's a bummer, but maybe i'm just not quite back to status quo in terms of 'stores' yet?? we'll see.
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Postby jimmylegs » Tue Dec 15, 2009 5:25 am

BBE right now i only take these:

daily:

at breakfast
-multivit/multimin,
-cal/mag,
-1000mg vit C,
-400IU vit E8 complex,
-600mg potassium
-200mcg selenium
(sometimes 2 betaine hydrochloric acid pills)

i don't take pills to work so nothing at lunch..

at supper
-multivit/multimin,
-cal/mag,
-B-50 complex
-1000mg C,
-50mg zn,
(sometimes 2 betaine hydrochloric acid pills)

at bedtime
-2000mg fish oil

weekly:
1 drop liquid vit D3 (25,000iu)

monthly:
-iron, 37.5mg per da, usually for a few days

i can't even reliably get through all of that small regimen on a daily basis. but that's the target and i'll keep trying to stick to it!

JL
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Postby jimmylegs » Tue Dec 15, 2009 5:46 am

astro i ate no dairy whatever for 15 years and still got ms.

since i got sick i learned more about nutrition, stopped being vegan, and when i heard about removing certain foods to deal with ms, it was so counter-intuitive to me. i needed more variety of foods in my life not less.

cheer's recommendations are great you don't have to change it all at once, just try different stuff and track what makes you feel better.

i eat dairy but not tons - milk in my tea, cream in my coffee, and some mornings a few spoonsful of yoghurt. i use butter on my veggies. once every few months, a nice cheezy pizza, or an omelet with grated cheese on top.

i don't eat much bread, the odd english muffin in the morning maybe... in the summer i ate quite a few multigrain wraps, and i do have the odd 6" tuna sub from subway :)

i go through maybe 2 or 3 eggs per week.. when i was doing my first protein boost in 2006 i ate 2 eggs every day... don't need it any more.

i don't eat pasta that often either.. but it's multigrain when i do.

i snack on dark chocolate covered raisins, sunflower seeds, and 'finn crisps' and hummous.

i try to eat fish (cooked, except for the occasional sushi!) 3x per week. i fail, but at least i do get some fish in me on a regular basis. many of my dinners are a serving of beef or pork or chicken or fish with a huge salad.

last big cookup i did was on sunday, for dinner i baked 4 chicken breasts, and roasted a big pan of onion, garlic, rutabaga, carrot, apple, sweet potato, and potato, in oil, soy sauce, sage and maple syrup. plus a dozen brussels sprouts, steamed on the stovetop. the leftovers are all split up to be my lunches through the week.

and with that said, i had better go get ready for work :)
JL
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Postby jay123 » Tue Dec 15, 2009 7:36 am

Jimmy - have you checked out the ip6 idea? Also, there is a lot of info on the net about "excessive zinc causing MS", do you think thats a bunch of bunk?
Thanks for your rsearch!
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Postby Algis » Tue Dec 15, 2009 8:04 am

Drink sesame oil and eat curry :)
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Postby skydog » Tue Dec 15, 2009 9:00 am

I make and eat allot of Kimchi. Sesame seeds and oil are part of the ingredients I use in my own version that changes with the season and my intuition. Very heart healthy and would recommend it on anyone's diet. Easy to make and last us a couple of weeks per batch. Eat well Be well, Mark
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