Supplement in question

[momoffour]

I just received my MSFocus magazine, and in it there is an article by a nutritionist stating NOT to take certain vitamins and supplements. Some of the things that she says not to take are things that have been recommended here and on other websites, as well as on the MS Diet, etc. Some people swear by them, for example Nancy Davis of the Nancy Davis Foundations won't go without taking CoQ10.

This article says not to take CoQ10, Echinacea, genseng, Gingko Biloba, DHEA and garlic, as she said it may decrease the effeciveness of your primary medication. I do take the CoQ10, and just read elsewhere that Gingko Biloba is good for MS as well.

She also said supplements that stimulate the immune system should be avoided in high doses, including selenium, zinc, B1, B2, folic acid, B6, vitamin A, biotin, magnesium, copper, and manganese. She basically said to just take a multi vitamin and get tested to see if you need vitamin D or B12 (I'm totally paraphrasing!). And her key words were also anything over 100% of the recommended daily allowance.

I guess I'm confused on all the conflicting reports out there. I thought I was doing well by taking vitamins and helping myself. Other than my MS, I haven't been sick at all since my diagnosis...not even a cold.

Any thoughts on this? Anyone else read this?

[Sequoia]

This appears to be a very conservative approach to supplementation, but it's one held by many doctors and nutritionists. By no means all medical professionals agree on this subject, though.

One thing's for sure...we should always check to be sure any supplements we take don't interfere with our prescription medications.

As for supplements that boost the immune system, it's been an article of faith for most of the medical community that people with MS should avoid them. I say "article of faith" because, to my knowledge, no studies have been done to prove that--for one example--echinacea is bad for MS. Andrew Weil, M.D. says that taking echinacea is a good idea for MSers during an acute infection (cold, flu etc.) because it may help speed recovery, and being sick definitely exacerbates MS symptoms. But he also says not to take echinacea on a long-term basis because (in his view) the jury is still out on whether it's bad for autoimmune conditions.

The assumption is that because MSers have overactive immune systems (although another model says that our immune systems aren't overactive, they're confused), anything that boosts immunity will make our MS symptoms worse.

In other words...it's all very confusing.

[Twenty Miles]

I've taken and not taken many. Trial and error, based on the non-scientific approach of how I feel.

My experience:
Gingko, Ginseng- were bad

CoQ, Echinacea- no experience, but never taken Echinacea because it seems all sources say it is bad.

All the other ones listed I take every day.

Regarding a mutli-vitamin- good luck finding one that has the right combination. In my experience they always contain too much, too little, or just stuff I don't want. The closest I've found is a multi-mineral that works.

IMHO- I believe the immune system with MS is more "misdirected" than heightened. So, immune boosters aren't as much of a worry.

[Ranwah]

Hi Twenty Miles,

Would you please explain how bad were Gingko and Ginseng, and the type/form/dosage you've used.


I think trial and error seems to be a better option if the info out there is only based on assumptions/theories.


Thanks
Ran

[Twenty Miles]

Hi Twenty Miles,

Would you please explain how bad were Gingko and Ginseng, and the type/form/dosage you've used.


I think trial and error seems to be a better option if the info out there is only based on assumptions/theories.


Thanks
Ran

When I was dizzy etc. Ginseng would set me off with a dizzy spell. I even noticed when even drinking Arizona tea with Ginseng (which must be a nominal amount) I would feel worse.

Regarding Gingko- I took it for years and and couldn't quite place the problem it was causing. I posted a bit about it. It was giving me a heightened sense of awareness. Almost creating a feeling like I was ahead of my thoughts and speaking. I felt uneasy. I wasn't sure what was causing the feeling. I posted about stress and the feeling of almost a paranoia. Then I tried going without the Gingko. I felt better without it. After weeks, I put it back and felt "weird" again. So I eliminated from my list. Not scientific, just my experience.

[momoffour]

Thanks for the responses, I appreciate it. I guess it's trial and error, and what works for the individual person.

And I think I spoke too soon...now I do have a cold and I feel miserable. First one since my diagnosis.

I made the mistake of drinking after my daughter...she was at cheer camp, and it was almost 90 degrees at 10:30! So hot, and I took a sip of her water. She was fine at the time, next day she was sick and then so was I. Guess I really do need to know about vitamins and the immune system now, lol! Thanks, again.

[Bob698]

For me, the bottom line of supplements vs. prescription drugs are that supplements only have to meet the FDA guidelines for food (as long as it doesn't make you sick, let the buyer beware).
I've learned to trust my neuro. I'd mention supplements and she's smile and shake her head "no" then ask me if I'm still eating a healthy diet and taking my meds.

[GayGay]

Supplements NOT needed

There is too much false information going around about what to take and what not to take. Most of the information comes from the manufacturers of the vitamins, minerals, herbs and supplements. Most of the info. is to get you to take MORE. Guess you is becoming wealthy with their false claims?

[GayGay]

There is too much false information going around about what to take and what not to take. Most of the information comes from the manufacturers of the vitamins, minerals, herbs and supplements. Most of the info. is to get you to take MORE. Guess who is becoming wealthy with their false claims?

Typing errors, tried to correct

[Sequoia]

There is too much false information going around about what to take and what not to take. Most of the information comes from the manufacturers of the vitamins, minerals, herbs and supplements. Most of the info. is to get you to take MORE. Guess you is becoming wealthy with their false claims?

While it's true that supplement manufacturers push their products with false claims (as well as true ones), there is a lot of information available from unbiased, reputable sources too.

Rule of thumb: evaluate the source of anything you read carefully, and don't automatically accept (or reject) what manufacturers and anyone else who stands to gain financially has to say.

[nutritiontara]

by Momoffour, "She also said supplements that stimulate the immune system should be avoided in high doses, including selenium, zinc, B1, B2, folic acid, B6, vitamin A, biotin, magnesium, copper, and manganese. She basically said to just take a multi vitamin and get tested to see if you need vitamin D or B12 (I'm totally paraphrasing!). And her key words were also anything over 100% of the recommended daily allowance."
About this list: selenium and zinc have a role in the immune system. B1, B2, Folate, B6, B12, biotin; all B vitamins...the problem for B vitamins are the majority are synthetic, isolated nutrients and actually take energy from the system to detox. The kidneys then have to get rid of these synthetics...you should not get yellow urine from a 'real' B complex and will not if it is a whole food based product. Magnesium is required in almost every cellular reaction and most people are in need of supplementation. Magnesium relaxes the muscle; calcium contracts. I use it for spasticity in MS, HBP; relaxes blood vessels and diabetes; helps w sugar metabolism. Mangenese, ? uh not necessary. Copper; have to be careful w can compete w other minerals for absorption sites in the body.
And of course: follow your physicians advice because they research supplements all the time.