What Vitamins do you take?

[DgtofTNfan]

I am curious about the use of vitamins and wanted to get other PALS/CALS thoughts. Do you take any vitamins that you have found helpful or at least thought might have contributed to a slowing of the progression? If not an impact on the ALS maybe a vitamin that has helped increase energy level?

Here is the info from the "ALS Guide for Families" provided to my Dad by the ALS neuro doc. This is a verbatim transcription of the portion on vitamins below. Please note that any individual should consult their physician to determine if any of the recommendations are right for you.

"Recommended Antioxidant Vitamins

Antioxidants: Agents such as high-dose antioxidants and herbal remedies are still regarded as experimental. However, it is thought that oxidants may damage motor neurons. Therefore, it's very logical to consider antioxidants. Lou Gehrig took vitamin E back in 1939. Vitamin E is being used in the treatment of Alzheimer's Disease, but was only modest benefit in ALS (French study).

Potential doses:
Vitamin C 500 mg-1000mg three times per day
Vitamin E 200 units-400 units once per day
Beta-carotene 25,000 IU once per day
CoQ10 400 mg three times per day.​

Theses are probably safe when used in these doses but any effect on ALS has not been demonstrated.

Zinc: Zinc is mineral. It has benefits of stabilizing cell membranes and may have an antioxidant effect. A dosage of zinc sulfates is 220mg twice a day.

Coenzyme Q10: CoQ10 is naturally occurring substance that improves mitochondrial function. The mitochondrion is the part of a cell that generates energy for our use. It is also the part of the cell that is first attacked by oxidants. CoQ10 works to protect and prevent damage in the mitochondria. CoQ10 extends the lifespan of the ALS mice in laboratory experiments. CoQ10 has been studied in patients with Parkinson's disease and did have the effect of slowing the progression of that disease. Recommended dose is 400 mg three times per day as stated above. It can be purchased at places such as Wal-Mart, Sam's Club and other pharmacies. However, the CoQ10 that is used in an ongoing NIH-supported study of CoQ10 in ALS is from the Vitaline Company. This is the purest form of Co Q10 and may be more costly than the others. The phone number is (deleted out of respect of the forum here) and the website is (also deleted out of respect of the forum here).

Antioxidant-vitamin combinations: There are many commercially available vitamins which contain vitamin E, vitamin C, zinc, selenium, beta carotene, vitamin A and CoQ10 with vitamin E. There is nothing wrong with taking these formulations although it is probably cheaper to take Vitamin E, Vitamin C, CoQ10 and zinc separately as described above. "

I can't really recommend any at this point as my Dad received his feeding tube literally the day after we received this handbook and he has been having trouble with diarrhea so we have not introduced anything new just yet.

Does anyone feel strongly one way or the other regarding the above. I am real interested in the CoQ10.
Thanks
Dana

 

[CRF8]

we take the CoQ10 as I thought it helped mice in a study. Of course the Neuro says it's of no value, but we take it anyway, they dont know much in my opinion. Can't tell if it helps

 

[rocmg]

my mum takes CoQ10, Vit. E and B-12 injection.

Those 3 kept cropping up in my research, so I got mum started on them. Don't know if they do anything significantly positive, but they don't seem to be doing any harm.

 

[kelly]

My hubby takes B-12 injections, Krill Oil, CoQ10,Turmeric, Vitamin D, Cholera, Fruit Plus vitamins, Magnesium...oral and injections...plus his prescriptions. Does it help...only time will tell......

 

[Big Mike]

I take the following each day:

Multivitamin
800 I.U. of Vitamin E
1,000 mg of Vitamin C
100 mg of Coenzyme Q-10
Fish Oil capsule
Vitamin B Complex
Magnesium
2,000 mg of Vitamin D-3
100 mg of Grape Seed Extract
teaspoon of milk thistle powder


I'm also just starting Rilutek.

Some of these pills, I take just for my overall health. I thought I had MS for awhile before being diagnosed with ALS, so I started up on the Vitamin D-3 and am still working through the bottle. I don't get much sunlight anyway as I am a night owl.

I also drink a protein shake after working out and drink a small glass of vegetable juice everyday.

 

[BLPhill]

Hello all

Does anybody take creatine? If so, in what dose?

 

[Marjorie R. Wilcox]

We don't take any vitamins. All our blood tests say we don't lack for anything.
Our GP says if your diet is good, taking supplements only gives you high octane urine and money in the vitamin companies' pockets. Besides, overdosing can mess up your amino acids, the absorption of calcium etc. If they were proven to help ALS, we'd be the first to buy.

 

[CRF8]

if the medical community had a clue, I might believe that extra vitamins arent needed. My wife takes a few that have been shown to help in the mice and other studies. Our Dr. told us a few specific vitamins that you can actually take too much, so we do those only every other day. Otherwise, maybe the standard numbers for vitamins in the blood arent the same for PALS.