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northerngirl

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oops,
I asked about a web page listing numerous supplements for als, I guess what was advertizing. My appoligies. I was wanting feed back before I spent a fortune on some of this stuff. they had a long list but it looked like a reasonable attack on progression. it included

Vitamins and Minerals

Vitamin B12: up to 25 mg daily, sublingual or administered intramuscularly (IM).
Vitamin E (Gamma E Tocopherol/Tocotrienols): one to two softgels per day with food.
Zinc: 15 mg daily. ALS patients can also consider taking 1 mg of copper in conjunction with zinc.
Herbal Supplements

Ginseng: 400 mg daily.
Ginkgo biloba: Ginkgo Biloba Standardized Extract, one capsule per day.

Other Dietary Supplements

CoQ10: 1200 mg daily.
Creatine: Micronized Creatine, two to four capsules per day with or without food.
DHEA: A typical starting dose of DHEA is 15 mg to 75 mg. Blood testing is recommended after three to six weeks to make sure levels of this hormone are optimal.
Glutathione: L-Glutathione, L-Cysteine and C, one capsule one to three times per day before food.
N-Acetyl Cysteine: one capsule one to three times per day.
Alpha-lipoic acid: R-Dihydro-Lipoic Acid Liquid Caps, one to two capsules per day.
Acetyl-L-Carnitine: L-Carnitine, one to four capsules per day on an empty stomach with water or juice.
Mega Green Tea Extract: one capsule per day with or without food. Decaffeinated green tea is available for people sensitive to caffeine.
Resveratrol: 20 mg daily.
Selenium: 200 mcg daily. This may be administered in conjunction with a calcium channel blocker, such as nimodipine. Calcium channel blockers are available only by prescription.
Super Curcumin: 900 mg
Vinpocetine: 5 mg daily.

What do you think, shouldn't hurt?
Thanks Laurie
 

CindyM

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I know Mike27 is big on supplements. Check out his blog on this site.
 

Carolan

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Selenium: 200 mcg daily. This may be administered in conjunction with a calcium channel blocker, such as nimodipine. Calcium channel blockers are available only by prescription.

I am not a doctor, but I would definitely ask a neurologist who really knows ALS before using a calcium channel blocker. My mom had high calcium in her blood last week, and when I did some research to see if there was a correlation to motor neuron disease, I discovered that there are some conflicting studies about how calcium channels might be affected by the disease. I read a couple of very technical articles with lots of chemistry jargon, and the main conclusion that I drew from my research is that I need to contact the super-famous neurologist who diagnosed my mother (and co-authored one of the articles). If you do ask your neurologist, be specific about why you are asking about calcium channel blockers. We still don't understand this disease, and with all of the current research going on, I would just be careful about this sort of thing.

As for the other stuff, vitamins and minerals are usually a good thing, unless you have too much in your system. Vitamin C, Vitamin E, a B-vitamin complex, Beta Carotine, Co-enzyme Q-10 (or whatever it's called), and Melatonin are all things that our doctor recommended. I also gave my mother a "myelin sheath support" pill for a while, but I don't know if it did any good. At that point, we were trying all sorts of things with the hope of improvement in her symptoms. The main thing is to watch out for costly things that can only be purchased through one particular vendor--that's a red flag to me that it might be a scam. But the bottom line is that I would ask your neurologist about anything that doesn't sound like a normal thing that non-ALS people would take.

Good luck, and I am really curious to hear if you get any medical advice about the calcium channel blocker.
 

AHands

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Too much B6 can damage nerves. Maybe other B's also, I don't know? Consider how much you're getting in your food, plus any you're getting in a multivitimin in addition to any "B6" supplement you may add.

Too much Ginko Biloba can cause bleeding problems.

Whatever you put in, your kidneys have to filter out the excess plus any fillers and packaging--so be aware of additional stress you may put on your kidneys, especially if you're diabetic.

There are current clinical trials on Co-Q10 for ALS...
 

ZenArcher

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When I started on my supplements I read those webpages as a matter of fact I'm betting I can tell you exactly where you got this list but then I did my own research. The following webpage can be very helpful.

http://www.mayoclinic.com/health/drug-information/DrugHerbIndex

In terms of what you have above, you more than likely get at least the USRDA of zinc if you eat a breakfast cereal, red meat or chicken so I'd scratch that. I personally take a B complex supplement. I've never found any evidence that links DHEA to any slowing in progression of ALS so I don't take it but it's your call. Glutathione is a very powerful antioxidant but it is not processed well when taken orally also the next three supplements namely N-Acetyl Cysteine (NAC), Alpha Lipoic Acid (ALA) and Acetyl L-Carnitine are all precursors which your body uses to synthesize glutathione. Because of that I personally don't take the glutathione but take the others so my body can make its own. If I were you I'd do some more research on ginseng, selenium and super curcumin.

These are just my thoughts based on the research I've done. You need to confer with your doctor and do your own research. I take what I believe works for me.
 

northerngirl

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Thanks all! You were right I googled als creatine and a big article by life extention came up. It sounded very knowlegeble, but of course you could buy every thing with a click of a mouse and a credit card. But I must say they are making me think hard.
Thanks Laurie
 

Saubier

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Laurie,

I wouldn't take selenium, at least not every day, it's highly toxic. Go to the ALSA website; they recommend B12 sublingual, folic acid, and some other things. I take the B12, E with tocotrienol, D3, folic acid.
 

MtPockets

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Hi Laurie and all the others who are taking all the supplements.

My wife and I used to do the same thing, before I got ALS. We were taking close to 50 pills and supplements a day. It cost us quit a lot of money, but we thought that was what we needed to do to stay healthy as we grew older.

A lot of good it did me. Now I'm not saying your are wrong to try these things. I'm just saying it did not prevent me from getting ALS. It also did not slow the progression of my symptoms the best I can tell.

I wish now I had saved my money that I spent on these things and took a long trip around the world with my wife and enjoyed all the things we always wanted to do together. To me those memories would have been worth the fortune I wasted on all this other stuff.

To each his own, I say. Just remember all research that has been done to date says there is nothing that can cure, delay, or prevent ALS. It's your money and your life. Do what you want with it. I'm not trying to bust your bubble, just saying after it is all over and you have passed on, what memories will you leave your loved ones.

I wish now I had gone to Hawaii, saw the volcano's, watched the sunsets, and walked the beaches. I personally think it would have been money well spent on my part. Like they say hind sight is 20 20.

If it makes you feel good, keep doing what you are doing. Just consider the voice of one who feels they made a mistake. I hope you have no regrets when your time has run it's course.

May God grant you peace in the midst of the storm you face.
 

Carolan

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I wish now I had gone to Hawaii, saw the volcano's, watched the sunsets, and walked the beaches.

Oh, I wish you had done this as well. Maybe you can create a luau in your own home? (I know...it's not the same...) Just a few months before my mom started having problems, we went to Hawaii. I had been trying to talk her into going to Greece (I have one of those credit cards with frequent flier mile points), but she told me that she had always wanted to go to Hawaii. For some reason, I had this feeling that we needed to make the trip right then--I didn't know why at the time--so I planned our entire trip in under two weeks (and quite cheaply at that). So now every time we talk to a new doctor, I start with my "She was walking on hardened volcanic lava just six months before she needed a walker" spiel. For a while, I even wondered if she had picked up some rare tropical virus--I did tons of research on Hawaii and disease.

Also, what you say about ALS is so true. No matter what we do, until we find a cure or adequate symptom treatment, the nutritional supplement industry is going to try to take advantage of us when we are at our most vulnerable, hoping that maybe somehow we can beat the odds. There are definitely some things that will help with overall health and well-being, but I would stay away from anything too expensive or too obscure. Spend that money on something that will be a good memory for you and your family--it will be worth it!
 

ZenArcher

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Capt Al please don't take this the wrong way because it is not intended as a slant against anyone but this is why I will not post my treatment regimen. As far as preventing or curing ALS you're right there is no data that offers either there is data that some things will slow progression. In most cases the delay is small and in some cases it has only been tested in the mouse but there are supplements that have shown small gains in survivability. Given the effectiveness of Rilutek I'll take what I can get.

Another perhaps even larger factor here is the placebo effect. Science has shown that if a patient believes a pill will help most often it will even if its only sugar. Supplements and vitamins are a personal choice one which should be done only after research and discussion with your care team. If you are going to go that route then believe in what you are trying to do. In my eyes one of the largest factors in the rate of progression is the attitude you approach it with. I believe the supplements I take are helping me. I know that in 10 years when I walk into my doctors office he'll have good news for me. Am I going to beat this disease, I hope so, but the one thing I can guarantee is that any ground it gains on me it had to do so through me scratching, clawing, biting, spitting, snarling, swearing, kicking, screaming and glaring. As such I will do whatever I believe I can.
 

northerngirl

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Captain Al,
You’re too cool! What a great attitude, I agree if to go see Billy Graham (Is he still alive?)
And you’re cured who cares how! Same as placeboes. But I believe if you can keep your body as healthy as possible you it might make things a little easier. Did you read November’s issue of Scientific America It had a huge article on ALS and some of the directions researchers are getting excited about. The main thing in the artificial was they could isolate the gene in mice to get more mice to study. It said the only thing that produced new neurons was aggressive physical exercise. But it did not say how much that was or what is does. There were a few things that they were excited about one of them was resveratol. It protected and repairs neurons which is found in red grapes skin. Red wine has about 640 mg. in an 8 0z glass so I am doing that ever night with dinner, purely for medicinal purposes of course! LOL! Please have a great evening!
Love Laurie
 
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