MS Nutrition-summary pts 1st post, p.1

Tell us what you are using to treat your MS-- and how you are doing.

Postby jimmylegs » Wed Jan 16, 2008 5:47 am

i was lying in bed this morning, and felt a sudden spiky itch, like a pinprick, in my right foot. a couple of days ago my leg would have shot up in the air in response, but today i just felt a very slight suggestion of tension. mind you i felt sick to my stomach after my bedtime 100mg dose of zinc last night, so i'll probably back it off to 50mg per meal for today, and report back on the jimmylegs later. i'll set up an appointment for my D3 megadose prescription, and a zinc test requisition too, so that we can see if my zinc level is attaining normal range as the legs settle back down.
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Postby jimmylegs » Wed Jan 16, 2008 6:03 am

aside: i just went looking to see whether zinc deficiency could be tied in with some other problems i've enjoyed over the last few months. i just posted an article i found in the general discussion forum, title 'trace elements and abdominal pain'
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Postby CureOrBust » Wed Jan 23, 2008 2:50 am

Another opinion.
Vitamin D deficiency, long interpreted as a cause of disease, is more likely the result of the disease process, and increasing intake of vitamin D often makes the disease worse. "Dysregulation of vitamin D has been observed in many chronic diseases, including many thought to be autoimmune," said J.C. Waterhouse, Ph.D., lead author of a book chapter on vitamin D and chronic disease (2). "We have found that vitamin D supplementation, even at levels many consider desirable, interferes with recovery in these patients."
http://www.medicalnewstoday.com/articles/94642.php
Although, the name "Marshal" (in other parts of the article) is worth a second check...

and I just did. Trevor Marshal is the same name as the guy pushin the Marshal Protocol. Apply salt liberally.
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Postby CureOrBust » Wed Jan 23, 2008 2:57 am

Vitamin D2 Is As Effective As Vitamin D3 In Maintaining Concentrations Of 25-Hydroxyvitamin D
Researchers from Boston University School of Medicine (BUSM) have found that vitamin D2 is equally as effective as vitamin D3 in maintaining 25-hydroxyvitamin D status. The study appears online in the December 2007 issue of the Journal of Clinical Endocrinology & Metabolism.
http://www.medicalnewstoday.com/articles/92952.php
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Postby jimmylegs » Wed Jan 23, 2008 7:57 am

an interesting set of contradictions, but that's what the process is about

would be a good idea to compare the methodologies out there that evaluate efficacy of D2 and D3 and arrive at opposite conclusions.

re: the disease process, i've heard that concept voiced regarding uric acid too, that levels are down as a result of the disease process. now i think it is a pretty ridiculous assertion when you talk about something like vitamin D, which clearly varies with sun exposure regardless of disease, and which is clearly supplemented through natural dietary ingestion, never mind pills. again, i'd be interested to see the methodologies that arrive at opposite results. and which form of ingested D was used when negative impacts were noted. without having seen specific research, i'm relatively confident that ingested D is pretty damned useful in the arctic.

Supplemental vitamin D has been used for decades, and yet the epidemics of chronic disease, such as heart disease and obesity, are just getting worse


i'd suggest that could be because the supplementation amounts to date have merely been aimed at prevention of rickets, and have not been implemented in sufficient levels to deal with other chronic diseases.

at first glance, these articles appear to be pretty good at leaving out some inconvenient portions of the picture!
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Postby Jim_P » Mon Jan 28, 2008 7:48 am

Jimmy I don't mean to throw off the subject, but have you tried a combination of Acetyl-Glucosamine, Acetyl-Carnitine and Glucosamine Chondroitin?

I have to be honest, I've tried whopper doses of vitamins and minerals and ended up feeling really sick from them, not to mention some nasty MS symptoms. Not that I don't take my vitamins, but I don't over do them anymore.

I was just wondering, I know we have passes messages before, but I can't recall if you have tried these things.

As far as I'm concerned, these three things are the safest feeling substinces I've put in my body, since I got the MS axe.

I'm feeling in many ways much more energetic and certain symptoms seem to be less frequent.

It started out feeling miraculous, but leveled off. But, I'm having much better days.

Anyway, just had to share, and I've sure you've heard me rant about all this before, so my apologies.

Be well

Jim
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Postby jimmylegs » Mon Jan 28, 2008 8:28 am

hiya jim, no i haven't tried those, but it's not that i won't, i'm just on a particular path. i have experienced overage of particular vitamins in one documented instance (folic acid) and i suspect that for a while i screwed up my d3 intake not taking enough daily magnesium. when i boosted the magnesium it got pretty much fixed. in general, i have documented deficiencies in b12 and zinc. my d3 isn't where it should be for immune health, and my uric acid keeps being spot on the ms average. so. i have noticed lots of improvement from supplementing before, and that's why i keep on doing it. it's not for everybody, but i ate in a very restricted way for 15 years and now i need to build my stores back up. at some point, i may reach the stage when the supplements you mention are on the front burner, but i'm still dealing with vitamins and minerals mostly, so far. thanks for the names of those supps though :)

so the d3. did you test your serum values before and after? did you take calcium and magnesium and zinc at the same time?

i'm glad you're feeling better and it just sounds like the usual deal - ms is a grab bag of issues with a deceivingly convenient label, and at the end of the day, each of us has to find our own right path through it!
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Postby Jim_P » Tue Jan 29, 2008 4:28 am

Cheers Jim, you know I've never gotten tested for D3 deficieny, but I did get checked for b12 and was normal.

Are these test that have to be requested or are they in routine overall bloodwork tests? Before I got diagnosed with MS, I told my GP to check for anything abnormal in my bloodwork. He told me all was well... My main concern was a B12 deficiency, but I did tell him to do thurough blood work. I wonder what else was checked. At the time, all I wanted to hear was, "everything looks normal".... Back then I was ignorant as to what else could cause the symptoms I was having.

Anyway, a few months ago, when I was upping my D3 intake, I was taking two 1000 I.U. tablets in addition to my "natural food state" multi vitamins.

This was after a relapse started to "want" to fade that included my hands being numb all over. Now I could keep my hands feeling almost normal, but when I uppped my D3 they were numb much more often. I also found I was getting gas pains and upset stomach from so much D3

I also got on a B-complex kick. Reading the side of that telling me it plays a role in keeping a healthy central nervous system had me taking more B vitamins than I probably should have. I also experienced more MS symptoms overdoing the B vitamins.

Anyway, speaking of hands, I gotta do my daily therapy and play some instruments for a while :lol:

Jimmylegs, let me know how this works out for you. Perhaps one day I should try again with the vitamin/mineral boost, when I'm not recovering from a relapse.... In fact, I'm doing well now. My hands are never numb anymore, so maybe I'll keep a little extra D3 in my diet.

One last thing, in your opinion, from your research, how much D3 could potentially make a difference? Supposing I'm comparing it to 1000 IU pills... how many a day are you personally aiming to take?
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Postby jimmylegs » Wed Jan 30, 2008 7:50 am

short answer, no the tests are not all routine in relation to MS, except b12. they do a lot of bloodwork when they dx, but mostly it's for functionality of body processes. they don't tend to look too closely at the components that facilitate those body processes.

for d3 to make a difference, i'd say go for a serum value at least 100nmol/L 25-hydroxycholecalciferol. i aim for 150. there's only 30-odd years of research on the subject so far so it's still pretty arbitary. 8O

long answer, if you're going to work with supplements, get tested don't do it blind. be as systematic as you can. don't trust normal lab results - find out from the literature what you want your values to be, and work towards them.

don't let any old symptom get lumped into your msdx. for me, a strange nerve problem with itching turned out to be folic acid toxicity because i had started a new bottle of b-complex that was out of balance.

i know my "normal" uric acid result is actually right on the ms average and should be 290 to be optimal, so i'm going to have to work on that.

i know i'm zinc deficient from bloodwork i requested, and whatever was going wrong due to that would have gotten lumped into the MS round file too, if i had not asked for the test.

finally, the numbness in my hands is now actually carpal tunnel syndrome, due to recent testing (not bloodwork that time) but for 2 years it was part of my MS.

so when you supplement and feel an effect, be very cautious about labelling the results "MS symptoms".

for d3, the daily amount really depends. Just talking about targets to aim for, for serum 25-hydroxycholecalciferol levels you want to be above 50nmol/L to keep rickets away, above 80nmol/L to keep osteoporosis away, and above 100nmol/L to keep the immune system in shape. (note that in sunny half-naked environments, unsupplemented serum levels can be much much higher than that with no adverse effects, such as hypercalcaemia).
The literature out there asserts that human skin with arms legs and torso exposed (without having read all the details lately, i’m assuming the pale youthful variety of skin) can make 10,000IU of D3 in 30 minutes. (that’s also assuming a clear day, with at least 18 (i forget the units) of solar energy hitting the skin, so that the d3 manufacture will start up - where i live the sun is only strong enough for that between may and October-ish). It has also been asserted that humans generally utilize 4000IU of d3 per day, so that is posited as a 'maintenance' dosage.

there’s also research out there that lets you calculate how long you will need to supplement at a given daily rate to achieve a certain serum level. i’m pretty sure it’s all posted on the site here somewhere but let me know if you want me to dig for it, i compiled some of this stuff off the site not too long ago so if you want it, just say.

overall let's just say, you want to get your serum levels up to 150 nmol/L for part of the year, and no lower than say, 80nmol/L for the rest of the year. Without doing any calculations at all, you can schedule two d3 tests per year, one in the early fall and one in late spring say, and you’ll know from that if you’re taking enough. Always take magnesium and calcium and zinc with d3. You need 1000-1200mg of calcium daily [2013 update not me!! not from supplements anyway.. I just can't handle that much] when you’re supplementing higher levels of D (the exact daily amount is posted on another study here somewhere, which we can track down if you want). I’m still working on the magnesium and calcium ratio because when i just ramped all the minerals up, my kidneys ached. When i just took one cal-mg-zn-d3 pill with my 4000IU d, it may not be directly linked, but i ended up zinc deficient according to the lab, and i think i caught and corrected the mg deficiency before it had a chance to show up on paper.

and of course that won't be more than the tip of the iceberg for the complexity of d3 interactions, but those are the big ones that i know about right at the moment.

Anyway, on to my other tasks for the day!
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Postby jimmylegs » Mon Feb 04, 2008 1:16 pm

okay well i asked my doc about magnesium ratios when supplementing d3, and she didn't know, and gave me the number for the ontario eat right line. i called them, and they didn't know either. then i pm'd nick, and he said check out embry's cited refs, and those articles were familiar but i didn't get into the full text and only one seemed to involve magnesium. so next, i googled embry cholecalciferol, and there it was at last! boldface and in red, no less:

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=39
It is essential that, while supplementing with vitamin D3(cholecalciferol, you also supplement with 1200mg essential calcium and 600-1200mg magnesium, to prevent osteoporosis.


i had just decided on 600mg as the most i can realistically handle, so there we go!

and i got another prescription for 50,000IU x 10d again today, plus 4000IU per day x3m, in the liquid drops form that i used to take shortly after dx.

an interesting aside, regarding mg absorption, eat right was able to tell me that the mineral oil for of mg supp can interfere with the absorption of d.
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zinc deficiency and MS

Postby jimmylegs » Mon Feb 25, 2008 3:23 pm

somehow, after two years of studying ms and nutrition, and having used zinc to some effect in the past without (to my imperfect recollection) connecting it directly to ms, and after finally having requested a zinc test out of curiosity and been found deficient, today for some reason i finally ran across this:

It has been observed that those suffering with any of the auto-immune diseases (such as multiple sclerosis, rheumatoid arthritis or psoriasis); atopic problems (allergy, eczema, asthma or migraine); or many of the inflammatory diseases (such as osteo-arthritis, ME or irritable bowel syndrome), have a consistent, and often severe, zinc deficiency, which is greatly benefited by a programme of zinc replacement therapy.

Zinc supplements in MS will increase both energy and vitality, increase muscle strength, improve sleep and prevent fatigue. Perhaps in company with vanadium, another common mineral deficiency in MS, which contributes to the occurrence of depression, it will also prevent this distressing symptom.


so, interesting. and now i have to start reading about vanadium apparently!
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magnesium

Postby jimmylegs » Tue Feb 26, 2008 3:21 pm

hi all. okay i suspected that my D3 intake was not quite balanced with my magnesium, and although i did not get tested for magnesium deficiency when my problems were worst, that pharmacist recommended magnesium and it really helped. i took bunches and i can't recall the exact timing of my eventual bloodwork, but i was not deficient at that time. i went to a throat specialist today and he analyzed my swallowing and the news is good - the throat is not showing signs of sending things down the wrong way, or any of the types of deterioration typical of ms.

the specialist listened politely to my magnesium story and then gave me his protocol for throat clearing behaviour modification. basically, i have a bad habit and there isn't really anything there in my throat to clear.

this made me need to revisit the connection between the throat and magnesium, because i know it fixes my throat. i had not taken any for a week leading up to the appointment, so that he could see the problem when it's pretty bad. right before i left for the hospital, i took 200mg of magnesium.

as soon as the appointment started, he was tracking me at a clearing per minute (used to be every few seconds before the original magnesium recommendation). later, as we waited for the radiology department to get organized, i asked him if he'd noticed that the rate of my "habit" had dropped off compared to when i first arrived, and he said yes. i said do you know what i did right before i left for this appointment? took magnesium!

and while i was with him, i felt the little flutter in my throat that means the magnesium is kicking in. i told him about that too, and asked him how the pharmacist had known about the magnesium issue, and he said he didn't know.

so, i'm home again now and just went looking for some symptoms of magnesium deficiency, and potential reasons. the one symptom list which really floors me doesn't cite its sources properly, but it is a FANTASTIC descriptor of so many things that are wrong with me. check this out:

http://www.healthy.net/scr/Article.asp?Id=541&xcntr=1
Symptoms of Magnesium Deficiency?
What are some of the symptoms of magnesium deficiency? They are outlined beautifully in a recent article by Dr. Sidney Baker. Magnesium deficiency can affect virtually every organ system of the body. With regard to skeletal muscle, one may experience twitches, cramps, muscle tension, muscle soreness, including back aches, neck pain, tension headaches and jaw joint (or TMJ) dysfunction. Also, one may experience chest tightness or a peculiar sensation that he can't take a deep breath. Sometimes a person may sigh a lot.

Symptoms involving impaired contraction of smooth muscles include constipation; urinary spasms; menstrual cramps; difficulty swallowing or a lump in the throat-especially provoked by eating sugar; photophobia, especially difficulty adjusting to oncoming bright headlights in the absence of eye disease; and loud noise sensitivity from stapedius muscle tension in the ear.

Continuing with the symptoms of magnesium deficiency, the central nervous system is markedly affected. Symptoms include insomnia, anxiety, hyperactivity and restlessness with constant movement, panic attacks, agoraphobia, and premenstrual irritability. Magnesium deficiency symptoms involving the peripheral nervous system include numbness, tingling, and other abnormal sensations, such as zips, zaps and vibratory sensations.


and i did find some support for my thought that the prolonged vit d3 supplementation was part of the problem (again not from a journal but i will track it down if anyone wants)

http://www.diagnose-me.com/cond/C78121.html
Supplemental vitamin D or calcium reduces magnesium uptake.
Magnesium elimination is increased in people who use alcohol, caffeine or excess sugar, or who take diuretics or birth control pills.
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vitamin D bed

Postby bricks » Mon Apr 21, 2008 6:09 pm

Good luck with your experiment, I hope it goes well for you.

Mercola.com has a D-Lite tanning bed that I thought about getting, but a bad experience with amber lights while trying to improve some sleep issues I was having made me wary of doing anything too radical with artificial light. Light really really affects one, you have to be careful...

That being said, if I was going to go mega-D I would definitely do it with light rather than oral supplements, because that is the way your body is made to process vitamin D, and I think it is less likely that you would have ill effects if you get your D through the skin rather than through synthetic supplements that could cause any number of problems.

Just a thought--if you can get your D levels where you want them through a D tanning bed, you could skip the oral supplements...

all the best to you
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Postby jimmylegs » Mon Apr 21, 2008 7:47 pm

thanks bricks! we shall see how it pans out. we're getting into the right season for me to get some d3 au naturel.

by the way, the human body is 'meant' to get d3 from both light via skin, and from diet. consider:
The Inuit Paradox
How can people who gorge on fat and rarely see a vegetable be healthier than we are?
http://discovermagazine.com/2004/oct/in ... MZL4oNQWpU
One might, for instance, imagine gross vitamin deficiencies arising from a diet with scarcely any fruits and vegetables. What furnishes vitamin A, vital for eyes and bones? We derive much of ours from colorful plant foods, constructing it from pigmented plant precursors called carotenoids (as in carrots). But vitamin A, which is oil soluble, is also plentiful in the oils of cold-water fishes and sea mammals, as well as in the animals’ livers, where fat is processed. These dietary staples also provide vitamin D, another oil-soluble vitamin needed for bones. Those of us living in temperate and tropical climates, on the other hand, usually make vitamin D indirectly by exposing skin to strong sun—hardly an option in the Arctic winter—and by consuming fortified cow’s milk, to which the indigenous northern groups had little access until recent decades and often don’t tolerate all that well.
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Postby jimmylegs » Tue Apr 22, 2008 9:46 am

this poor man. reminds me of me, re: vegan for so long. too bad they only tried b12. i had to cast the net far wider than that to get back any of my lost functionality. too many other things go downhill when you're vegan, whether they're linked to your b12 status or otherwise.

http://linkinghub.elsevier.com/retrieve/pii/S089990070700175X
Abstract

Objective

We describe a case of irreversible subacute sclerotic combined degeneration of the spinal cord in a Western vegan subject.
Methods

A 57-y-old man, member of a vegan cult for 13 y, developed weakness, paraplegia, hyper-reflexia, distal symmetric muscular hypotrophy, impairment of superficial sensation in the hands and feet, loss of deep sensation in the lower limbs, and neurogenic bladder and bowel. Magnetic resonance imaging of the cervical and dorsal spine disclosed abnormally increased signal intensity on T2-weighted sections in the posterior and lateral columns. Subacute sclerotic combined degeneration of the spinal cord was diagnosed and treatment with cobalamin was started.
Results

Despite rehabilitative treatment, the patient developed spastic hypertonia with mild improvement of paresthesias. Six months later, vitamin B12 plasma levels and hematological analysis were normal. One year later, spastic paraplegia was still present and the patient was unable to walk despite improvement on magnetic resonance imaging.
Conclusion

Irreversible subacute sclerotic combined degeneration of the spinal cord is a rare but possible effect of a strict vegetarian diet.


not necessarily irreversible!!!!
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