Quote:
Originally Posted by trixiedee
Hi, I introduced myself a few months ago before being formally dx with PD. I'd been dx with MS for the past few years but it turns out I'd been misdiagnosed. For a while I thought I had both but a recent MRI seems to have convinced my neuro that I don't have MS (fortunately I refused to take the drugs they tried to encourage me to take - including IV steroids when pregnant!).
Anyway I am only 43 and really don't want to take any meds - so I've been seeing an ayurvedic practitioner for a few months who has been giving me a selection of herbs including mucuna. I've been taking it for 4 or 5 months and have noticed no change. If I decide not to take it for a day I feel exactly the same as if I do take it. I know not to take it with protein (my ayurvedic dr didn't know that). She says it takes a long time for the herbs to kick in but as mucuna contains L-dopa, surely I would notice some benefit by now?
My main symptoms are bradykinesia, weakness (more on the left but also on my right side) and fatigue. And I really struggle with motivation. I can barely walk but am too proud and self conscious to use a scooter.
I'm considering getting some Zandopa but read comments here about it being made by a big chemical company and am worried about its purity.
Trixiedee
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Hi Trixiedee,
We have tried this in the past...we got ours from Banyan Botannicals I think it is in Utah or New Mexico, it comes loose in powder form and STAINS everything it touches so be careful. I felt pretty comfortable with the quality and purity and I'm picky. We didnt' do Zandopa, although I did buy some of that stuff, because they have some unidentified component(s) in it which I read COULD be aspartame which is a neurotoxin.
You can definitely tell you've taken it, it hits very fast (15 minutes compared to sinemet 30-60 minutes) but also falls off very fast which could leave one in a real predicament. We quit using it because we could never time how long it would last, sometimes it'd last an hour, others, half an hour. But you definitely felt better during that time.
Now we have it on reserve for those mornings when the sinemet just won't get things going. We'll take some and put it in water and drink it that way, others put it in capsules, I read someone else puts it in a bottle of spring water and swigs on it throughout the day. I would try it to see if it helps you....we also grew some fava beans this spring and those helped as well, but same problem: some days they worked great and lasted a good hour, others, nada. Standardization is a real problem when you grow your own. There is a place that sells fava bean juice online that is made just for PWP, you may check that out. Good luck to you, and I would also add, exercise, there is a ton out there about how helpful that is.