Creatine, Vitamin E and Methylcobalamin

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Lily

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Hello fellow faith-walkers,

I have been doing a lot of internet research (as I'm sure most people who have family members with ALS do) and found information about creatine, vitamin E and methylcobalamin, a form of Vitamin B12 (see article below). Does anyone use these supplements? Where do you buy them from and how do you decide the dosage? I'm particularly interested in knowing if any follow-up studies were ever done on the B12 mentioned below.

I took my mom to see a Chinese doctor today (he's ninety-something years old). He will not treat patients he does not think he can help, so we are hopeful because he said he would give it a try for a few weeks, but he said that ALS is a very difficult disease to treat with Chinese herbs. He doesn't take many patients because of his old age, but we will keep you all updated if there is any promising results. We're also going to Sunnybrook tomorrow and will probably begin taking Rilutek this week. My sister (who went with my mom last time) said the doctor was lacking in bedside manner. Is there a doctor we should specify in the future? I think it's important for doctors to give hope and not death sentences!

The following article referred to the Vitamin B12:

Japanese Researchers Link Vitamin B-12 to ALS treatment
A group of University of Tokushima researchers in Japan has discovered that methylcobalamin, a form of Vitamin B12, could slow down the attack of amyotrophic lateral sclerosis (ALS). ALS is a progressive neuro-degenerative illness also known as Lou Gehrig's disease.
Researchers say methylcobalamin treatment could prolong the life of severe ALS patients. The research group, led by Dr. Ryuji Kaji, professor of neurology at the University of Tokushima, presented the results at a meeting of the Japanese Society of Neurology in Yokohama in May, 2003.
According to Dr. Yuishin Izumi, a researcher involved in the project, a group 18 ALS patients were injected with a large amount of methylcobalamin and 11 of them remained alive, without the help of respiratory aid, one year to three years and seven months after the treatment. By contrast, another group of 16 ALS patients who received no methylcobalamin treatment all died between half a year and two years and eight months later. The results of the experiment were verified in October 2002.

Look forward to hearing any information any of you could share.

THANKS A MILLION and I will continue to pray for all you angels!

Lily
 

Theresa2004

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Lily, Al would be your best bet for doctor information at Sunnybrook. Hopefully he will reply to you before you go down there, so check for responses in the morning if you can...
 

Al

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Hi Lily. I met Dr. Zinman at Toronto General a year or so ago and he struck me as a kind and caring doctor. I have been seeing Dr Gawell and since Dr. Zinman has came to Sunnybrook I have asked to see him. He may have changed in a year or so but I still think he's a good bet. I go on Sept. 6th so I'll have more to say then but right now I'd ask Myrna (the coordinator) if you could be switched. Dr. Gawell is a good man in his own right but my personal pick personality and compassion wise would be Dr. Zinman.
 

Al

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Hi Lily. How did the clinic day go today?
 

Lily

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Hi Al,

Thank you for your response. This is Anne, Lily's sister. The clinic went very well. We had Dr. Gawell and he was a lot better this time in answering our questions. We got to meet with the ALS assocation (I think) coordinator who was really nice and very helpful. We also spoke with some other families who are going through the same thing which we found encourging. My mother is going to get tested for Lyme's disease so we will wait and see what the results of that are. In the meantime, we are going to start her on Rizulek and just hope for the best. Dr. Gawel said that the medication works differently for different people and the side effects are minimal so we're going to give it a try. He said that other remedies have not been proven, but if we want to try them, he can't endorse anything except the medication...we are continuing to pray and hope for the best.

Thank you for always replying to our posts. My sister and I were talking about how great it is to have this kind of support. We continue to pray for you and your family. Keep up the encouragment and support to others in the community because I really think you are making a difference!

Good luck next Tuesday, you're right Sunnybrook is a great place to be.

Anne
 

Al

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Hi Anne. Maybe Dr. Gawell has been reading my posts. Let me know if your mom is interested in meeting the rest of the Brampton Gang.
 

rcharlton

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Many of you may have seen this article - and the tests have been with Mice only. The article is from 2003.

http://www.ninds.nih.gov/news_and_events/news_articles/news_article_als_combination_treatment.htm

Creatine and Antibiotic for Lou Gehrig's Disease

Administering a combination of the supplement creatine and the antibiotic minocycline slows the progression of Lou Gehrig’s disease in mice more effectively than either compound alone.

Previous studies have shown that independently, creatine and minocycline improve outcomes of the disease, but this study is the first to test a combination of the two.

The study found minocycline injections delayed onset of the disease by 113 days and creatine supplements by 111 days, compared with 94 days in the untreated group. However, a combination of minocycline and creatine delayed disease onset 122 days and the mice survived for an average of 157 days--a 25 percent improvement in survival compared to the untreated mice.

Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS), is a progressive and fatal neurological disease affecting nerve cells that control movement. More than 5,000 Americans are diagnosed with ALS each year.

In 1999, creatine, an amino acid found naturally in meats and fish, was found to work better in the treatment of ALS in mice than prescription drug riluzole. Mice that were given creatine lived about 18 percent longer than mice with unsupplemented diets, while mice taking riluzole lived about nine percent longer.

Exactly how creatine works to slow the progression of ALS in mice is not known, but one hypothesis is that creatine may improve neurons' energy supply, making them more resistant to degeneration.

Minocycline is an antibiotic used to treat a variety of infections, acne and rheumatoid arthritis. Previous studies have shown that minocycline has neuroprotective effects on ALS mice, and also protects neurons from dying in animal models of Huntington's disease, Parkinson's disease, stroke, traumatic brain injury, and a variety of other disorders.

The role of minocycline in ALS may be linked to mitochondria, tiny compartments within cells that break down food and produce energy. It is thought that problems in mitochondria lead to the death of nerve cells controlling movement in ALS mice, and minocycline makes the mitochondria more resistant to changes that may cause cell death. Additionally, minocycline appears to block the reactivity of microglia, immune cells in the brain that release toxic compounds due to ALS.

Further research is being conducted to determine the safety and efficacy of creatine and minocycline. Although extremely high doses of creatine can cause kidney problems, no other significant negative side effects have been seen with either compound.
 

Granny

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Hi Lily,
I sometimes hesitate to answer posts, because I am not qualified to tell anyone what they should be taking, but for what it is worth I will share with you that my doctor prescribed for me the following:
Vitamin E 400 IU per day
Creatine Monohydrate 1 rounded tsp per day(little scoop in bottle for measurement).
These are the ones you asked about. I do take other things as well, including Minocycline (see rcharton's post). I have no idea if these any or all of these are helping. How do you tell with this disease?

It is good to be able to read and share the ups and downs with other people living through this disease. I think it helps keep all of us strong.
Thanks
Leah (Granny)
 

ronrfc

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Vit Methyl B12

Hi Lily,

I have just started using methylcobalamin also known as Vitamin Methyl B12. So far I have not used it long enough to form an opinion of its effectiveness. I got it from Aviva Natural Health Solutions [[email protected]].

let me know how you get on Ron[/list]
 

JeffP

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hi lily ive been taking 100percent creatine a day 5grams total make soure you drink lots of water while taking creatine or theffects will be wose it will dehydate you .i take an awlsome vitamine an mineral supplement twice daily ans 5000 mgs of b12 alond wieth vitamind3 ,6000 grams of alman oil relteck . make sure you get a pharmacuetical vitamin usda approved it has to b monitored to carry exactly whats on the label 99percent ,.the over the counter vitamins like at walmart say are approved by the fda they weight the filler the binders the capsule and the rest will be that vitamin so if it says your getting 500mg of vitamin b12 your probably gting about 200mg if that and the fda approves that .go to usana vitamins and just check it out there is a difference buuzz me any time my name is jeffp
 

sadiemae

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This post is from 2005
 
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