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Alzheimer's

With Mayo Clinic health education outreach coordinator Angela Lunde

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May 5, 2008 2:15 p.m.

Untested remedies a personal choice

6 comments posted

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By Angela Lunde

The decision to participate in clinical trials, studies, or experiments with new untested or unapproved remedies is a personal family choice.

Over the years, dozens, probably hundreds of 'miracle' treatments or cures for Alzheimer's have circulated in the media. And as many of you clearly stated, there remains no cure, and only a few "average" treatments.

I am thrilled that a small number of individuals appear to have had some benefit with the Enbrel treatment in question. I hope you continue to share your experiences. I do not advocate the study be stopped, I simply wish that the publicity and attention would be reserved until a clearer pattern of outcomes is determined.

You see, this is exactly the kind of premature hype that most often becomes yet another loss and disappointment for undeserving families. Having said that, I hope a year from now we have seen enough positive outcomes to truly celebrate! My best to all the families.

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6 comments posted

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May 15, 2008 5:22 p.m.

I have never heard of Ebixa. Can someone explain?

- Aletha

May 14, 2008 3:12 p.m.

It seems a shame that while plenty of trails are ongoing for the normal treatments for this disease which have proven to have no great effect. No studies are in progress for this treatment which appears to have great promise.

- Vince

May 14, 2008 11:16 a.m.

My mother died of Alzheimer's disease. I took care of her the last 3 years of her life - she died in my home. She had been an independent woman since the early 1940's and it was a horror for her not to be able to remember. When I became her caregiver she always wanted to "go home." What an awful disease. I have heard the media say that statins contribute to Alzheimer's. Is this true? It concerns me as I have to take them. Thank you for hearing my comments.

- Carol

May 14, 2008 8:56 a.m.

I don't know why you don't study the effect of Ebixa for Alzheimer's. It has worked wonders for my husband.

- Doris Gibson

May 12, 2008 6:18 p.m.

In general, I agree that untested remedies are a personal choice, In practice, however, I must say, I could choose, but that would end the matter right there.. The fact is that choice is a dead end. It takes money. People don't get to choose ...

- Suzy

May 7, 2008 4:17 p.m.

Thank you so much for listening to us! You are Great! Our problem is that so much negativity has been written, that it's hard to convince our own doctors that this is real and for them to get trained. Our only hope for a timely treatment is these off-label treatments, which are very expensive especially since they're not covered by insurance. There are now about 8 doctors that have been trained and most of them have started treating patients. They can't advertise (off-label)so people have to go through Dr. Tobinick's office to find them. I know the states though, they are NY, FL, IN, TX, OH, KY, and 2 in MI, and of course Dr. T in CA. If these doctors each only treat 20 patients, the numbers will start growing. I can't wait! I promise, I am only writing this to let people know there's hope, no profits here, except doing the good deed of spreading the news! Thanks! Felicia McColl famc17@yahoo.com youtube videos of Mom before and after enbrel: http://www.youtube.com/user/famc17

- Felicia