This Is MS Multiple Sclerosis Knowledge & Support Community

Hi All,

I was diagnosed with rrms June of last year (2009) I have recently started Copaxone (3 weeks) and all my neuro ever suggested for me was 4000 units of D3 and 1300mg of calcium daily........I have read through some threads on supplements,as well as checked out some links that members have posted and I feel absolutely STUPID. I don't really understand too much about them, and know I should probably have some tests run to see where I am deficient, but in all honesty I have no idea what to ask for and wouldn't know how to read the results if they were given to me.........................So many of you elders to thisisms seem to know what you're doing.....any advice would be most appreciated

I am also on .15 MG of synthroid daily

PLEASE HELP!!!!

hi s, sorry you're feeling in over your head

k here goes:

get your 25(OH)vitd3, vitamin B12, zinc, and magnesium... and ferritin.. tested, for starters.
uric acid would be a 'nice to know' test also.

make sure to obtain results with units. not just the 'it's normal' party line.

then when you have results let us know and we can help you figure out the next step.

hope that helps!

Stabilo wrote:Hi All,

I was diagnosed with rrms June of last year (2009) I have recently started Copaxone (3 weeks) and all my neuro ever suggested for me was 4000 units of D3 and 1300mg of calcium daily........
PLEASE HELP!!!!

If you're taking D3 and Calcium already, then I think you're pretty much done.

There are all sorts of opinions about various supplements, diets, herbal remedies, etc. that people believe are beneficial, but little evidence or consensus about the details. Even D3 supplementation is mostly speculative as a therapy for MS, though evidence is building that most people could use some supplementation, MS or not.

I take 6000 IU of D3 (based on neurologists advice), plus a multi-vitamin every day, and that's it for supplements. Well, I guess I do drink green tea most days, which some people believe is helpful.

I'm not trying to discourage you from having tests and/or adding some additional supplements, if that's what you want to do, but you really shouldn't get too worried about it. You're not missing any vital parts of your treatment right now.

/Scut

wrong!

JL thanks for the support

I would like to have the tests done just for my own peace of mind, as so many things I've read on here suggest additional supplements to be helpful (zinc, magnesium etc) I have written a list of what you posted and will take it to my gp next week

Scut I thank you for your response and perhaps you could also find it to be beneficial to you. I have heard through the grapevine that Jimmylegs is pretty versed on supplements in these parts and if she has taken them for so long, she's proof that it's not doing any harm

you're welcome, s

one small correction - since i've been on this learning curve i have in fact done a few things wrong, for example at one time i was taking high dose vit D3 without properly timing my magnesium intake (which was too low anyway regardless of timing, actually).

the high dose D3 taken simulatneously with low dose mag, caused my magnesium levels to drop off until i had deadly problems with my throat - would get stuck mid-swallow with my airway blocked, unable to complete the swallowing motion. i began mentally preparing for the day i would just sit there and suffocate. that was end of 2007.

luckily, i started separating some of my magnesium supplementation from my D3 intake, which was done on the recommendation of a pharmacist after i had been in for a chest xray due to shortness of breath.

it worked like a charm on my throat, and to my surprise it also fixed my difficulty with breathing. i stopped following the pharmacist's recommendation as soon as it worked, fearing placebo. all the problems returned. started timed magnesium again, was fixed. yay!

at any rate i am happy to be guinea pig if others benefit as a result

Stabilo wrote:I would like to have the tests done just for my own peace of mind...

Nothing wrong with that. I had a few extra tests of my own when I first started treatment, just in case there was some easy fix. There's definitely some comfort in knowing you're doing something.

Stabilo wrote: Scut I thank you for your response and perhaps you could also find it to be beneficial to you.

Thanks, but I find most of the arguments for specific supplements to be unconvincing. Supplements are usually (but not always) of little harm except to your wallet, but I'm still waiting for more plausibility and evidence of effectiveness before I add more stuff to my diet.

Stabilo wrote:I have heard through the grapevine that Jimmylegs is pretty versed on supplements in these parts and if she has taken them for so long, she's proof that it's not doing any harm

This last sentence of yours is the real reason I'm replying to this, since I don't really have anything against supplements. Jimmylegs most certainly is not proof that the supplements are doing no harm. I mean, even ignoring the scary suffocation story above, lack of obvious harm is never "proof" of safety. For example, my father smoked for 30 years with no apparent harm, but that certainly doesn't prove cigarettes are safe! And don't forget that radium tonics were once a popular health supplement, too...

/Scut

i think the dangers associated with supplements are by and large known. if you do the research, you find in a lot of cases that potential impacts are associated with ridiculously high megadosing over long, long periods, or lack of knowledge about balancing levels.

patients need to use bloodwork to find out which supplements are needed in their individual case. i can't see the harm in pushing serum levels away from an ms profile and towards a healthy control profile. what is a problem, is doing it blindly and taking things without knowing if you're achieving what you wanted, or overshooting the mark somehow.

for instance, early on i thought it was okay to take lots of B-complex because they are water soluble vitamins. once i bought a new bottle of b100 complex and i didn' t notice that instead of 400 units of B9, it had 1000 units. i started to develop a neuropathic itch. the only thing in my supplement regimen that has changed was the new B-complex, so i read the label more carefully and spotted the 1000 B9. i asked my doctor for a B9 test and the result was 2170, whereas my previous result was 1480. the highest level previously seen at the lab was in the 1700s so i was well out the top of the envelope.

i retired that brand of b-complex my rbc folate normalized again and the itching went away. i have no way to tell if i did permanent damage, but i don't think so, and as far as my ms goes, i don't have relapses so far. i'm just under 5 years in so who knows

Jimmy legs...you mentioned timing magnesium. Can you elaborate? I just pop my fist full o pills...and as of late have had the throat issue.....Thanks!

hi basically with magnesium you take some with d3, and some on its own. if you tell me everything you're taking lately, I could have a look at what goes with what, and when

two related questions: 1) have you had testing recently and 2) have you done the math on your diet, to see how much of the various nutrients you are getting from food?

Diet is the one thing that has demonstrated a long term effect on disease progression. It isn't quite as easy as popping some supplements (which can also be helpful), but it beats the alternative. I strongly recommend reading up on Doctor Roy swank's research. The majority of patients that stuck to his diet were still walking 34 years later. Most of those that didn't were dead or severely disabled over the same timeframe.

definitely diet is the foundation.
http://www.thisisms.com/forum/regimens- ... c2489.html
"ime, elements of success re optimizing nutritional status include:
1) willingness to be proactive about one's own health (what a light bulb moment for me - the doctor is not the responsible party!)
2) willingness to learn about nutrition research and take the info on board going forward.
3) access to a cooperative health care professional, who is willing to use nutrition research and facilitate bloodwork.
4) a clear understanding of the distinct difference between 'normal' lab values and 'optimal' ones. your doctor probably won't get this
5) willingness to undertake a long term nutritional restoration project aimed at achieving healthy serum targets, using adaptive management and monitoring data to adjust one's regimen if and as needed, over time. this is very important. supplements at high doses can create imbalances of their own over time. you can't just start a regimen, especially a high dose regimen, and keep it up for years without testing its effects on other nutrients.
6) understanding that dietary supplements should not be used in place of biologically appropriate whole foods
7) recognition that while results may exceed expectations, a nutrition programme is not going to grow back any missing limbs, teeth, etc.. ;)"

don't know if anyone else heard that news piece recently about the Canadian govt doing tests on Indigenous children, to see if they could live when only given supplements? terrible, shocking

Assembly of First Nations condemns nutritional experiments on aboriginal children
Resolution says experiments reflect a pattern of genocide
http://www.cbc.ca/news/canada/north/sto ... ution.html

Hungry aboriginal people used in bureaucrats' experiments
Food historian published details of nutritional experiments that began in the 1940s
http://www.cbc.ca/news/canada/manitoba/ ... anada.html
" 'It started with research trips in northern Manitoba where they found, you know, widespread hunger, if not starvation, among certain members of the community. And one of their immediate responses was to design a controlled experiment on the effectiveness of vitamin supplementation on this population.' ... They found people who were hungry, beggared by a combination of the collapsing fur trade and declining government support. They also found a demoralized population marked by, in the words of the researchers, "shiftlessness, indolence, improvidence and inertia."
The researchers suggested those problems — "so long regarded as inherent or hereditary traits in the Indian race" — were in fact the results of malnutrition.
Instead of recommending an increase in support, the researchers decided that isolated, dependent, hungry people would be ideal subjects for tests on the effects of different diets.
'This is a period of scientific uncertainty around nutrition,' said Mosby. 'Vitamins and minerals had really only been discovered during the interwar period.
'In the 1940s, there were a lot of questions about what are human requirements for vitamins. Malnourished aboriginal people became viewed as possible means of testing these theories.' "

JL...no I haven't done anything with diet calculations other than stuff I know is bad...stay away from (mostly) no dairy and lots of water and green tea. I check different foods on the nutrition data website but only when I come across it.
Supplements:
All at once in am
D3 4000 iu, mg 500 mg, calcium 1000mg,zinc 50 mg, centrum adults under 50 1 tablet.
I was reading tonite on primrose oil, lipoic acid, ginseng not American ? , those needed to be added also.....not sure how much.
I am on tecfidera...not taken for two days...wasn't head clear like I am now off it. I think it has already in three weeks messed up my immune system...mouth sores three hrs after and throat issue. Being off it I know it (the throat mess) isn't tecfidera related. I'd love to take all the right pills, tea or whatever. I feel my WORST on these drugs....mentally, and physically. If I can take my mg timed differently to help the throat and amount would be great!
I am going to my dr on Wed...was going to have them check my white count for the immune thing. I was sick those few days....maybe? Built up tecfidera in my system. Anything you can say or suggest would help! I am info'd out and overloaded. Your knowledge and research is appreciated! Thanks--mp
Let me know what you think and what tests other than all vita levels....

heya

okay just to confirm, what form is your mg 500? citrate? glycinate?

also, is that all in one 500mg pill? if it's 2 pills, split it up and take half your daily mag in the evening.

you may want to ease off on the calcium - esp. while you have the throat issue going on. it might be best to keep your cal mag intake from supplements at a 1:1 ratio ie 500 of each daily.

do have a look at the whfoods nutrient pages for calcium and magnesium and see how your daily food intake stacks up.

re the zinc 50mg. any copper in there?

as for vitamin tests, ask them to look at b12 and d3. also vit e, if you can manage it.

important to test the minerals not just vits.. ie serum magnesium, zinc, and selenium are more likely to be down. do also test serum ferritin, calcium, and copper to ensure your intakes are resulting in serum levels that are properly balanced.

just for fun, see if they will test your serum uric acid levels too.

unfortunately I can't advise on herbal products or non-essentials like lipoic acid.
i'm more likely to look for the tools the body needs to make LA. sulfur will be important there:

http://en.wikipedia.org/wiki/Lipoic_acid
"Lipoic acid (LA), ... is an organosulfur compound derived from octanoic acid. LA contains two sulfur atoms..."

http://www.livestrong.com/article/28925 ... in-sulfur/

hope that helps!

JL...mg says oxide..yes one pill. Split? Or buy citrate kind..?
Calcium is two pills totaling 1k mg.
Zinc...no copper. Copper in centrum .05 mg....(sounds too low to me) what is a good level?
I will write down the tests you suggest my doctor is pro whatever I ask (within reason of course) and I will get those tests and report my numbers! Thank Jimmy you are a blessing to this site!:)