question for experienced ones

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Postby tzootsi » Tue Jul 27, 2010 9:08 am

meet, have you seen the direct-ms website? There is a TON of information out there on diet, supplements, and lately CCSVI. From what I read, tumeric is not readily absorbed, but black pepper and bromelin both help absorbtion.
I strongly advise you looking into CCSVI, this seems to be as close to a 'cure' as we've come yet. LDN also helps a lot of people.
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Postby L » Tue Jul 27, 2010 10:08 am

tzootsi wrote:meet, have you seen the direct-ms website? There is a TON of information out there on diet, supplements, and lately CCSVI. From what I read, tumeric is not readily absorbed, but black pepper and bromelin both help absorbtion.
I strongly advise you looking into CCSVI, this seems to be as close to a 'cure' as we've come yet. LDN also helps a lot of people.


Aha yes Piperine! The days of a heaped teaspoon of turmeric and half a teaspoon of peppercorns are long gone though.. Now I just add a pinch or two of each when I'm cooking..
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Postby jimmylegs » Wed Jul 28, 2010 8:24 am

hi again, back to b12.

i had reversible numbing in my feet for years before my ms dx. i could reverse it by taking b12 supplements, but this was something i strongly resisted doing.

i would test my b12 now and then, but would regularly take a supplement a day for a few days beforehand because at that point in my life, i wanted the numbers to look good. i would regularly come back with results around 200 pmol/L which is borderline low end.

once i did a clean test to see how much my supplementing before testing was affecting my results. the test came back and they had no result because their test was only sensitive down to 75, and they could not detect mine. so my official level is 'less than 75'.

when i was getting diagnosed with ms i argued with the neuro about my b12 status and told them about my long vegan and b12 deficient history.

they tested me at 300 (i had been madly supplementing during the dx attack, to no avail) and said no, you're not deficient.

they wanted me to do a washout with no supplements and then measure but i was terrified and wouldn't stop supplementing.

my spinal lesions were classic b12 deficiency syndrome lesions. still they said no, your other lesions and SF findings are not consistent with b12 deficiency (they were right - i didn't realize at the time but they WERE consistent with multiple OTHER deficiencies i was not aware of then).

one of my big probs with the ms dx process is that it's based on statistics. i ask you how likely a vegan is to fit properly into an 'average joe' model.

in the last couple years my doc was still arguing that i had not been b12 deficient. she pulled up a graph showing a horizontal line hovering around 200 pmol/L over time. (now i aim for more like 500 by the way - b12 deficiency definitions are flawed). i told the doc her graph was wrong and that i knew why - her software could not plot the text 'less than 75' on a graph.

over the last 4 years i have read about then tested and then fixed a variety of deficiencies which are implicated in MS and also to be expected in a vegan who is not monitoring their blood and keeping their nutrient levels optimized. b12, b-complex, vitamin D3, zinc (and its impact on uric acid levels), essential fatty acids (PUFAs are one thing i haven't tested yet..) and in my case more from dietary preferences than anything, magnesium and vitamin e.

i would also like to state here that i object to the basic premise of the best bet diet as being extremist (yes, that's rich coming from an ex vegan, i know) and i also think that to try to do a vegan version of best bet would be pretty much suicidal. in particular i have serious concerns about protein for a vegan after omitting legumes and reducing grains.
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