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Old 02-16-2010, 11:58 AM   #1
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Supplements

Hi all, and Tiffany too (I know you were asking about this) I read an interesting article today in a recent Medical Journal about MS and supplements. Once again touting the necessity of supplementing PROPERLY and not taking the wrong supplements. This particular article talked about both Vitamin D and Vitamin C and fish oil.

The article went on to say that Fish oil is the absolute best thing we can take for our condition, as it really does stimulate brain health...however, you should be taking a pharmaceutical grade, one which does NOT contain mercury and be taking at least 1000 mgs a day. This falls under the Omega 3 Catagory. If you ever see the combined Omega 3-6-9 pills, stay away from them. They dont have enough of the necessary ingrediants. Whatever you take should have at least EPA: 650 mg, DHA: 450 mg
The brand I take has exactly this, per 1000 mgs and I take 2 of these pills each day. Totalling 2000 mgs.

If you are eating a basically healthy diet, you should be getting enough Omega 6 and 9s from your diet...its the 3s which are important to supplement with MS.

With Vitamin D, make sure you are taking D3, not D2, which isnt absorbed as well....the FDA has increased the daily amount to 450 IUs per day, however the MSers feel that you should take at least 1000 units per day. But its important to know that Vitamin D can be toxic if you take too much and the only way to know where your levels stand is to have your blood work done and find out. I just had my blood work done and found that my D levels were absolutely perfect for the first time in 3 years...Ive been supplementing with 1000 units each day for the past 6 months.

As for vitamin C...its controversial. Many MS specalists feel that it really does stimulate the immune system and that it is NOT recommended beyond the normal daily allowance of 100 mgs a day, however that dose can be gotten from one cup of Orange juice, and therefore not have to be supplemented in pill form. Others are touting that if you take up to 500 mgs a day, it can help prevent attacks. I dont buy that, personally. I know when I take too much C, I get nauseas and honestly feel terrible. The one thing ALL the doctors agreed was that you should avoid Echinacea which is found in most over the counter "cold fighters" because it does overly stimulate the immune system, which we MSers cant tolerate. Zinc also can stimulate the immune system and should be avoided...

So thats what I read today and I thought Id share it. Does anyone want to add anything?? Im seeing my nutrionalist later this week and will ask her what she thinks...but Ive been experimenting for about 3 years now and this is basically what works for me. Im curious to hear if anyone else has found anything different...
nikki
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Last edited by MSNik; 02-16-2010 at 11:59 AM.

 
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Old 02-16-2010, 06:21 PM   #2
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Re: Supplements

Good info, Nikki. Thanks. I just recently started supplementing with vit D and fish oil (omega - 3), per the guidance of my chiropractor. It's only been about 2wks. My vit D levels are low, he suggested 2000 mg / day.

How long until you "felt" any different? I'm still feeling all-over numbness and was just wondering how the supplementing makes you feel?

 
Old 02-16-2010, 06:56 PM   #3
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Re: Supplements

Honestly Silver, Im not feeling any different. I have been taking these supplements for 3 years, but was taking all sorts of other things, like E, Tumeric, and Probiotics as well. When I had surgery a year ago, I went off everything (many of these supplements thin your blood, especially E and Fish Oils) and when I was cleared to start taking them again, I stopped the Tumeric, stopped the E and stopped the Probiotics...mainly because I didnt feel any different a month after being off any of the supplements.

When I went back on them, I only started the D, the Fish Oil and the Calcium and something called a heart Sterol, which is for Trigycerides, that Ive always taken...I still have numb fingers and hand (that was my original MS symtom which led me to a dx) and they say its permanent nerve damage...but I dont feel any different, I just know that finally, my blood work is normal. It hasnt been normal in a very long time. Im going to stay on my current dosage, just to see if 6 months from now it remains normal. I feel pretty good overall.
Tomororw is MRI day- we'll see what that brings!
Good for you for listening to your chiro...let us know if the D supplements help.
Nikki
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Old 02-16-2010, 08:31 PM   #4
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Re: Supplements

Nikki,
This is very interesting. I can't begin to list the stuff Kim takes and why, and I suppose I can't put links in with all the papers I've read, but I have to say, IMHO, supplementation is a tremendous area for MS'ers to think about.

Kim needs to be on probiotics because of the antibiotics she is taking. She's been taking 5gms of ascorbic acid and NAC daily for years. She's now up to 9000 iu of D3 and isn't it interesting that all this stuff inhibits NF-kB? And then there's curcumin.

One area of note is the use of COX-2 inhibitors. Some take issue with them because of possible impacts with D3 supplementation. But, that's a pretty deep topic to start researching.
Ken
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Old 02-17-2010, 05:52 AM   #5
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Re: Supplements

Hi Ken, what you are talking about is interesting; however it doesnt quite address the idea of supplements. Kim is using this in place of medication, right? Its an interesting concept and not one which I agree with, but one which is being explored more and more by the community.

Im not saying that it is right or wrong, just that in general, MSers arent going to go to that extreme a route with antibiotics, its not the "norm" for MS treatment.

As for the curcurim, I truly believe that one is a waste of money. Again, only my thoughts. I have extreme inflammation and used it for 3 years faithfully. I never saw a single difference taking it; and my MS specialist agreed that although it is fine for people with minor inflamation or arthritis, and in general wont hurt you, its not going to make a difference for people with advanced inflamation or MS. I still cook with it (tumeric) and try to get it into my diet but the months that Ive been off taking the supplmenets havent shown any difference in how I feel.

Kims case is interesting. Although I cant actually say that I agree with the line of thinking, I respect it. Can I ask you, what type of doctor actually started her on the heavy antibiotics dosage? I havent read much about MS docs actually using this course of therapy for MSers.

Nikki
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Old 02-17-2010, 07:50 AM   #6
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Smile Re: Supplements

Nikki, I saw a specialist and she recommended the exact same things you suggested minus the calcium. I will start vit D, fish oil and omega 3 today. Thanks again!

 
Old 02-17-2010, 09:30 AM   #7
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Re: Supplements

Tiffany, the only reason I supplement calcium is because I really dont drink enough milk. That, and when you do steroids for any period of time, you do lose bone density. Osteoporosis runs in the women in my family and Ive had a bone density test showing that mine is borderline weak.....so, i take 1000 mgs of calcium daily. No big deal as this is a supplment you can buy anywhere and its very inexpensive.

Whether or not you need it, is entirely up to you, and your doctor. If you have a gyn appt coming up, talk to your gyn about bone density and whether or not she suggests Calcium supplements in your age group. I have no idea how old you are...

Most docs start suggesting it around the age of 40 for women. Also, they suggest it if you are on any type of hormone pills, be it birth control or estrogen supplements for whatever reason. So, ask!! Its the only way to know if you should start taking it as well..

Good luck with the other ones. Hope you get some positive results from taking them...
Nikki
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Old 02-17-2010, 11:50 AM   #8
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Re: Supplements

Quote:
Originally Posted by MSNik View Post
Hi Ken, what you are talking about is interesting; however it doesnt quite address the idea of supplements. Kim is using this in place of medication, right?
Actually, the supplements Kim takes is in addition to the antibiotics she takes for MS. Her doctor has recommended D3. The others he seems to be fine with. Kim also uses Pyruvate and Coffee as part of the protocol, however, folks who are not on the protocol should not be doing Pyruvate and Coffee. There are variant forms of the protocol that also involve NAC.

Quote:
Originally Posted by MSNik View Post
Its an interesting concept and not one which I agree with, but one which is being explored more and more by the community.

Im not saying that it is right or wrong, just that in general, MSers arent going to go to that extreme a route with antibiotics, its not the "norm" for MS treatment.
Don't I know it. I've been around long enough to know that we get all excited about new things and then there are positive early results and there's a lot of anecdotal evidence and then there are some positive papers, yada, yada, yada and then it blows up and everyone is disappointed. Most recently we had this with Tovaxin. Perhaps this is happening with CCSVI. There is a long history of "This is the ONE!" in MS and I'm not pushing this.

I do want to present the idea so others can be aware of it. I don't think it's right that many are left to beleive that autoimmunity is a proven fact. At least for Kim, the Combined Antibiotic Protocol has brought measurable and obvious benefits - I think that is worth sharing, but I should be clear, I'm not saying that everyone should be doing it and all other ideas are wrong. I'm just presenting what is working for Kim and others like her.

Quote:
Originally Posted by MSNik View Post
As for the curcurim, I truly believe that one is a waste of money. Again, only my thoughts. I have extreme inflammation and used it for 3 years faithfully. I never saw a single difference taking it; and my MS specialist agreed that although it is fine for people with minor inflamation or arthritis, and in general wont hurt you, its not going to make a difference for people with advanced inflamation or MS. I still cook with it (tumeric) and try to get it into my diet but the months that Ive been off taking the supplmenets havent shown any difference in how I feel.
I'm on the fence with this one. I'm just saying, folks need to know there is a line of thinking that suggests it interferes with D3 supplementation.

Quote:
Originally Posted by MSNik View Post
Kims case is interesting. Although I cant actually say that I agree with the line of thinking, I respect it. Can I ask you, what type of doctor actually started her on the heavy antibiotics dosage? I havent read much about MS docs actually using this course of therapy for MSers.

Nikki
I don't think I'm allowed to name doctors here, but I think I can say we drive 11 hours to see Kim's Neurologist at the Vanderbilt MS Center twice a year. I would be happy to respond to a PM if you would like to know more. Would I be allowed to share links in a PM? Ken
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Old 02-17-2010, 05:29 PM   #9
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Re: Supplements

Ken, thanks for sharing what you did share. Im not really interested in this protocol, mainly because I am quite comfortable with what I am doing for myself at this time; however I do agree with you- others should be aware of their options and Kim's story.
I hope she finds continual success with this protocol.
Nikki
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