veganism - jimmylegs can we get your input?

A board to discuss various diet-centered approaches to treating or controlling Multiple Sclerosis, e.g., the Swank Diet

veganism - jimmylegs can we get your input?

Postby ikulo » Mon Nov 22, 2010 1:49 am

Jimmylegs,

I remember you said that you were vegan for many years, but can't find the exact thread. You mentioned something relatively negative about your vegan experience. I've been vegetarian for about 7 years and vegan for about 12 months or so. Your post made me think whether I should rethink my veganism. Could you give your personal experience on being vegan and why you decided to stop? I'm aware that deficiencies are possible, so I've been supplementing with B12 and zinc, but still worry whether there are other things i'm overlooking.

Thanks for your help!!
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Postby jimmylegs » Mon Nov 22, 2010 11:00 am

hi ikulo, you are right i was vegan from 1993 to 2006, and had been vegetarian since 1991.

i was diagnosed in late january of '06 and i was certain from the start that i had done it to myself via diet and being determined NOT to supplement (i know that sounds hard to believe coming from me).

i had had undetectable b12 levels, and borderline deficient levels even if i supplemented before a test. i had had numbness in my feet that i would allow to worsen until my legs gave way or my grip weakened. these issues would resolve when i supplemented b12. as soon as it resolved i would go back to no pills.

b12 was my first intense research focus. i was being told by my clinic that a, you're not b12 deficient, b, you have brain lesions those would not be caused by b12 deficiency, c, you have oligoclonal banding and that would not be seen in b12 deficiency, etc etc.

i found research demonstrating that brain lesions and o-bands HAVE been seen in cases of b12 deficiency. the question i didn't ask til later was, what else have i done? what else could simultaneously be going on in a vegan that could lead to those diagnostic features?

i started researching how to be the most responsible vegan ever. i quickly learned that the science of nutrition is relatively young, and while science might be able to suggest vegan alternatives to omega 3s from fish, it certainly has no idea at this point about the synergistic effects of eating those fish omega 3s *in the context of a piece of fish*.

i basically decided that i needed to act fast to correct whatever damage i had done. since it would take time (months and years as it turns out) to learn all the ramifications of having been vegan, i would start by launching a biologically appropriate omnivorous diet and an intense supplement program, with the hope of one day having my depleted nutrient stores (which had been built up over the first 20 years of my life and drained over the subsequent 15) replenished.

i am confident that personal nuances of my vegan diet were largely responsible for the multiple nutrient issues i would eventually learn about. for example i should have eaten more nuts and seeds but i was keeping dietary fats down. the list goes on and on.

it didn't help that every vegan nutrition site i read played down the difficulties in obtaining the various nutrients in question from a vegan diet. also, not once before being diagnosed with ms did any resource anywhere, including my family doctor, indicate to me that b12 deficiency (just to pick one example) could punch holes in my spinal cord leading to permanent damage.

i don't agree with certain aspects of the various MS diets out there, but at the same time i do have a dietary approach.

i alternate between berry based and egg based meals for breakfasts.

lunches are either leftovers, or maybe some raw veggies and some protein, whether it's nuts or cheese or tuna, and maybe an apple in there too.

my rotation for dinners goes, red meat, fish, veggie, white meat, fish, veggie, etc. most fish purchases have a third-party sustainable fisheries certification, and when possible (dirt poor right now) i choose organic or at least abx-free meat.

for starters, in addition to b12 and zinc, i would say be sure you get enough protein. by 'be sure' i mean figure out serum protein in healthy controls, and make sure your lab result matches that number. i can't find free full text to establish what this level should be, but i know the test in question is for TBPA - thyroxine binding prealbumin.

if you consume processed vegan foods, choose fortified ones. part of my problem was that i switched to whole foods only and lost all fortification benefit while still refusing to take supplement pills.

also b-complex is important not just b12. ensure your vitamin E intake is adequate too (i don't have a target level sorry). when i was vegan i largely avoided nuts so lost excellent vit E sources, and i did not eat enough dark leafy greens either. best supplemental vit E is from E8 complex. obtained from natural food sources, not synthetics, if you can find. ensure optimal magnesium. and vitamin d3. as long as you can optimize all the 'usual suspect' nutrients in ms patients you should be okay. how difficult all that will be while adhering to a vegan diet, i can't tell you - all i know is that i certainly was not up to the challenge in '06 and i'm not certain i'll try in the future. it's each person's individual decision.

hope that helped! if you have any other questions please feel free to ask :)
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Postby ikulo » Tue Nov 23, 2010 1:02 am

I appreciate your thoughts on this. I recently read an article by Roy Holman and began questioning my own dietary habits. Similar to Holman's experience, I've bounced around different diets including raw veganism, vegetarianism and lacto-ovo-vegetarianism. I was vegetarian even before my diagnosis, but after reading the myriad of dietary suggestions for treating MS (e.g., Swank, Embry, Wahls) I entered into a world of obsessing about every piece of food I ate. This of course led to ups and down, frequent fasting, gluten/anti gluten, dairy/no dairy, etc. Ultimately I think these obsessions were a response to my diagnosis and a way of trying to control something in my life.

After you posted your history with veganism in the other post, I really began to look deeper and wondered whether my habits could be hurting more than helping. Your post above definitely makes me more curious about my dietary habits. Fortunately, my blood levels seem to be within the healthy range, but the burden of daily living and emotional well-being is a whole other issue.

Roy Holman's Article for those who are interested (worth reading the whole thing): http://www.beyondveg.com/holman-r/bio/h ... o-1a.shtml

Thanks again!
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Postby jimmylegs » Fri Nov 26, 2010 6:57 pm

hi ikulo, thanks! quick question though.. are all your levels in the 'healthy' range, or in the 'normal' range? because even at my sickest all my levels were 'normal' (except b12 and zinc). within 'normal' there is an ms range for certain nutrients/indicators, and a quite distinctly different 'healthy' range for those same nutrients/indicators.
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Postby ikulo » Sun Nov 28, 2010 10:40 pm

I've been following your posts and recommendations on TiMS and I believe all my ranges are within the range you suggest (i.e., the MS range).

Perhaps you should think about writing a reference page for all "normal" v. "healthy" levels for all those who do not regularly follow your posts. I assume most people take the word of their doctors that their ranges are within normal and leave it at that.
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Postby jimmylegs » Mon Nov 29, 2010 2:28 pm

ouch!
yep it's bad. the big dirty secret of health care, the idea that a 'normal' data set (ie bell curve) represents 'healthy'. it would be really easy for me to set up an easy-to-read web site and build on it over time. i could cut down on the size of my signature links list here, too.. kill 2 birds with 1 stone ;D
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Postby Slumby » Sun Jan 09, 2011 12:31 pm

I like to say, "fly 2 kites with one spoolie" :lol:

thank you for the information!
[14mg aubagio]
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Postby jimmylegs » Sun Jan 09, 2011 8:44 pm

yw! :)
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