Supplements?

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KimT

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I know this has been discussed before ALOT! For those of you interested what supplements are you taking?

Here's what I'm currently taking:
Vitamin D 5,000 UI per day
B-12 (6mg sublingual. Waiting for Rx for injections)
Tumeric
EPA/DHA 2:1 ratio
1,200 mg magnesium daily
B Complex (100)
CoQ10 200 mg per day

Probably will start Tudca, eating a can of water-packed sardines each day (elevates uric acid), and Vitamin E. I have to introduce things slowly because I have very bad acid reflux and many things set it off. I have to stay clear of caffeine but I thought I might also try green tea extract and see how it flies.

I've also gone off all gluten from a recommendation of my primary care at Mayo. She said that has helped many patients tolerate other foods and helped stomach issues.
 
Hi Kim
I also take vit d
Methylcobalmin im
Tudca
Gastrodin
And I have not been good about taking the others on my list recently
Turmeric
L serine
Acetyl l carnitine
Liposomal glutathione
Vitamin e.
When I told my neuro that the thing she urged me to take if I added back nothing else was the e. She is strongly in favor but this is controversial due to risk profile and disagreement over possible benefit. One of the researchers came right out and said don't do it.
 
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It sounds like you both have a regimen you've
worked out very carefully.

I was only taking a general one a day type vitamin for
mos before my feed tube surgery,
Then with all that happened at that time,
and recuperating,
and getting used to giving myself the four feedings a
day by feed tube, I forgot all abt it.
I forget so much now.

I DO get four cans of Jevity a day now, and have actually bn
Adding in an extra one or two a day per CLINIC dietician recommendation...
And I've gradually bn having blended real food meals as well in tube.

Oh, and I've bn adding turmeric to some tube feedings per texastc's kind
suggestion to me...

Sorry for the long ramble.

Through your research, have you found some key nutrients that
are recommended for those w ALS?
Thank you.

I will then study the Jevity can, and multiply by six, for that is now
What I am nearing.

Thank you both.
Laura.

Great topic, Kim!





I am interested in what you both have written you are taking.

It all gets so overwhelming for me to think abt, and to actually carry
out...

Jevity seems to have a good supply of vitamins and minerals,
And I'm actually working up to six cans a day.
I know there are some vits and mins you don't want to get too much of, as
it can be dangerous.
 
Steve takes a multivitamin/mineral/antioxidant
vit d3 2000 iu
probiotic 10 strains/20billion colony forming units
digestive enzyme
going to add gaba....neuro said it was a good idea

The multi combo is 6 capsules a day and has all the b vitamins, l serine, carnitine, co q 10, ala, etc. It is the cardio lift from vitacost. There are some neuro formulas but this has the best of everything all in one supplement.
 
Ummmm.......

I don't know what I did to make such a mess of my post, worse
than it Already was...

Thanx for patience...
Was my face red! ���� (Well, yellow, cdnt find a red face on my tablet...)
 
Thought I would share, while seeing my Neurologist last week I was given a list of vitamins they would like me to take:
Vitamin C-1,000mg two times a day
Vitamin E-1,000 IU two times a day
Vitamin D3-2,000 IU once a day
Beta-carotene-25,000 IU once a day
Folic Acid-800 mcg (0.8 ) two times a day
Melatonin- 10mg 20 min before bed
 
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Thanks Grace! Do you know if this is their standard or are any because of your personal medical history?
Melatonin is interesting. I know there was some old research in favor of it but you don't hear much about it
 
Nikki--this is their standard. It was a handout they gave me that was already printed. I actually questioned the melatonin and she said study had been done that it had positive effects with neurodegenerative disorders.
 
Thanks. Have you taken the melatonin yet? I tried it once at a lower dose and it knocked me out and left me hungover the next day
 
Yes it knocked me out. I felt a little sluggish the next morning but it wore off quickly. I thought about trying a lower dose you can get it in 5, 3, and even 1mg. I'm not sure that it would be as effective for the overall goal of treatment though.
 
For those of you taking E, there are 8 molecules in that family. They are not all created equal, and also interact. Based on available evidence, I would consider supplements that contain tocomin (d-alpha-tocopherol + mixed tocotrienols derived from palm oil).
 
I'm surprised about the beta carotene and the lack of specificity of the type of E. I do know there were studies about diets high in beta carotene and lutein (I think) correlating with a lower incidence of ALS but I didn't think there were any studies that supported these two supplements as slowing progression.

I wish there were more studies in supplementation/diet......but they don't benefit the drug companies.
 
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Grace - your list is what they gave me at the ALS clinic in Houston. I don't take Vitamin E, however. I also take B-12, Magnesium (250, twice a day because of muscle cramping) and Co-Q-10. The Melatonin is just to help you sleep at night -- no other reason to take it. The extended release type is what I take. Sometimes it helps; sometimes it doesn't, but I have never been a good sleeper.
Dianne
 
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