[lurkingforacure]

A very select trial has begun worldwide in which they put carbi/levo in a tube directly into the small intestine. The results anticipated are, to me, spectacular (80% improvement!) but of course you are still taking meds. Any thoughts on this? And it's coincidental that this comes out in the midst of Ron's thread about snorting (for lack of a better word, sorry) pure dopamine. This particular PWP is from New Zealand, here's the link:


http://www.stuff.co.nz/4786638a20475.html

[jeanb]

Lurking,

I have heard this works well, but you'd have to live with a tube in your intestine....

[aftermathman]

this is available in Europe, still in trials in US I believe God knows why, gives the FDA something to do I suppose.

My Neuro thought it was the most effective treatment he had seen for years, (then again he wasn't the one with a tube sticking into him ).

See

http://www.duodopa.com/

for all you need to know.

Neil.

[lurkingforacure]

Originally Posted by aftermathman

this is available in Europe, still in trials in US I believe God knows why, gives the FDA something to do I suppose.

My Neuro thought it was the most effective treatment he had seen for years, (then again he wasn't the one with a tube sticking into him ).

See

http://www.duodopa.com/

for all you need to know.

Neil.

OK you are in England where this is available, do you have this tube treatment and if so, how is it working? If not, why not (I guess the real Q is if it's available and works so much better than pills,why isn't everyone getting it?) Thanks.

[jeanb]

Why aren't people lining up for duodopa - where available?

I am guessing many pwp don't want a tube sticking through to their small intestines - where they would inject the med.

of course I'm not thrilled at the prospect of brain surgery either...

If I had to choose between duodopa or DBS I'd have to think long & hard.

Jean

[aftermathman]

I don't have the tube, I don't need it yet as Stalevo and dop ags keep me going fine.

I can only reiterate my Neuro saw Duodopa presented and thought it very effective. It follows his philosophy of small med dosage frequently rather than peaks and troughs, minimising side effects.

As Jean says, not every PWP in England has signed up for this as I imagine most view a tube into the small intestine as a pretty last gasp option.

Take care,
Neil.

[Jim091866]

I would welcome this therapy!!! Think of it, a small tube, called a j-tube similar to a feeding tube is placed during a very short surgical procedure then you get the meds directly into the intestine and to the body. This would hopefully eliminate the ups and downs and theoretically no more off's. This would be an awesome therapy, in my opinion the best since l-dopa was developed. We now have a way to make the meds more effective and in return more accurately dose the patient to their needs. This is akin to the diabetic pump in my opinion. You would have the drug which would be some sort of gel like formula as I understand it and it would be given slowly throughout the day.