Hi. I am wondering if any one has experimented with "drug cocktails?" THere seems to be some great signs of controlling ALS with the combination of certain readily available drugs such as creatine & minocycline combined with Rizule. I am wondering if anyone has tried these combined together and if so, what was the result? I am eager to try these but I want to know what dosage to start with for each. HELP!
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Timshelper
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Drug Cocktails what an intersting term
Dear Mel,
I remember when I first came across this terminology and like you I thought gee this might be the answer to my freinds problems and my prayers. Like you I asked the same question and I did not get any answers but I did come up with a few stories from others who have tried this concoction. In my freinds case he would take his Rilutek as perscribed, 2- 50mg of minocycline and then heres the trickey part, depending on the weight of the person you add the creatine. What I don't understand about this cocktail and a lot of other things about AlS is how come we have to find the answers from other people or research on our own when we have GPS or specialists that should be there to help us. In Tims case he was more or less told you have 2-5 years to live , see ya later. Now whether the cocktail works or not that question still seems to be up in the air. For some people they say they did see some improvement in other cases people said it was a waste of money since the drugs are very expensive and their symptoms only got worse. Another thing I have learned is that ALS hits people very differently, some of the more fortunate ones the disease seems to move more slowly where at times it almost seems stagnate, while others it moves so rapidly you wonder if everybody has the same thing. I don't know if this will be of any help to you but just maybe you should ask your Dr and you will have better luck then we did, I still try to keep a open mind that all Drs are not the same and that there are ones out there with hope and encouragement for our loved ones.
Good luck to you and your loved one
Kim ALS About Loving Someone :wink:
Dear Mel,
I remember when I first came across this terminology and like you I thought gee this might be the answer to my freinds problems and my prayers. Like you I asked the same question and I did not get any answers but I did come up with a few stories from others who have tried this concoction. In my freinds case he would take his Rilutek as perscribed, 2- 50mg of minocycline and then heres the trickey part, depending on the weight of the person you add the creatine. What I don't understand about this cocktail and a lot of other things about AlS is how come we have to find the answers from other people or research on our own when we have GPS or specialists that should be there to help us. In Tims case he was more or less told you have 2-5 years to live , see ya later. Now whether the cocktail works or not that question still seems to be up in the air. For some people they say they did see some improvement in other cases people said it was a waste of money since the drugs are very expensive and their symptoms only got worse. Another thing I have learned is that ALS hits people very differently, some of the more fortunate ones the disease seems to move more slowly where at times it almost seems stagnate, while others it moves so rapidly you wonder if everybody has the same thing. I don't know if this will be of any help to you but just maybe you should ask your Dr and you will have better luck then we did, I still try to keep a open mind that all Drs are not the same and that there are ones out there with hope and encouragement for our loved ones.
Good luck to you and your loved one
Kim ALS About Loving Someone :wink:
RE: DRUG COCKTAILS
Dear Kim:
Thank you for your response. How did Tim figure out the proper dosages? Did he find a doctor to administer the drugs for him? Where my mother lives it will be almost impossible to find a doctor to do that, thus we are hoping to take it into our own hands. Any suggestions or others I can ask about what to do?
Mel
Dear Kim:
Thank you for your response. How did Tim figure out the proper dosages? Did he find a doctor to administer the drugs for him? Where my mother lives it will be almost impossible to find a doctor to do that, thus we are hoping to take it into our own hands. Any suggestions or others I can ask about what to do?
Mel
Timshelper
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- Nov 11, 2003
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Drug Cocktail
Dear Mel.
In answer to your question, the Dr. did perscribe the Rilutek as well as the Minocycline. Tim takes 1 pill of the Rilutek in the morning and 1 pill in the evening. He does not take the Minocycline any more. He takes I good heaping teaspoon of Creatine per day. This was percieved as a good choice from talking to Natural paths and researching the internet. You have to be careful with Creatine because it can be harsh on the kidneys if you take to much and we don't need kidney failure as well as everything else that goes on with this disease. Make sure you research everything and talk , talk , talk you never know who has had ALS. Before Tim was diagnosed I knew of the disease but I never knew of anyone who had it as well as no cure as of yet (be optimistic) its also a very silent disease until someone you know has it and when you start to talk you find that someone in someone elses family at one time had ALS too. So talk, listen and learn and never be afraid to ask questions because your asking for our loved ones, they need you and you need them.
Kim
ALS About Loving Someone
Dear Mel.
In answer to your question, the Dr. did perscribe the Rilutek as well as the Minocycline. Tim takes 1 pill of the Rilutek in the morning and 1 pill in the evening. He does not take the Minocycline any more. He takes I good heaping teaspoon of Creatine per day. This was percieved as a good choice from talking to Natural paths and researching the internet. You have to be careful with Creatine because it can be harsh on the kidneys if you take to much and we don't need kidney failure as well as everything else that goes on with this disease. Make sure you research everything and talk , talk , talk you never know who has had ALS. Before Tim was diagnosed I knew of the disease but I never knew of anyone who had it as well as no cure as of yet (be optimistic) its also a very silent disease until someone you know has it and when you start to talk you find that someone in someone elses family at one time had ALS too. So talk, listen and learn and never be afraid to ask questions because your asking for our loved ones, they need you and you need them.
Kim
ALS About Loving Someone
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