[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

[lurkingforacure]

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

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.

[reverett123]

As lurking said, MP hits town in a hurry and leaves the same way. That's not all bad. If you are away from home and find yourself slip sliding away, a few capsules is a godsend. Ditto if a faily emergency should arise at 2:00 AM.

Beware of the dosage given in some of the research. Five grams is about right. Twenty-five is not.

Zandopa is not MP. Zandopa is what you get when some top neurologists are allowed to patent it and ally themselves with a big chemical company.

MP, on the other hand, has dozens of chemicals besides Ldopa. There is more to it than a trendy replacement for sinemet.

There are experiments still to be done. For example, ancient use including mixing it with milk. What effect does that add? Or mixing it with fat or butter? What if you take a cup of powder and mix it with two cups of vodka and strain it after a few days? A lot of kitchen chemistry untried. Let us know how it turns out.

[Conductor71]

Two things come to mind...

Do you feel 100 % certain of your doctor's diagnosis of MS? What you describe may be very early PD, but your symptoms also fit a lot of other things. Have you been tested for hypothyroidism, Wilson's Disease, or Myasthenia Gravis, etc.? With only having a clinical observation and exam system for diagnosis, you may have to be persistent.

Only reason I question is because there is a rather high misdiagnosis rate and an uncertain doctor will put you on a trial of PD meds like levodopa to further assess you for PD. Levodopa does not work super well for all, but I would think you would notice at least a little improvement with the drug.

With the mucuna, do you know how much you are getting? Is it blended with other herbs or are you taking it separately? Maybe the dosage is off because you should feel something, I would think, if it is truly PD that you have.

I think our biggest champion of Zandopa was Max...read his story here

http://neurotalk.psychcentral.com/sh...ghlight=mucuna

I would be welcoming a second opinion. Also, if you decide to order any Internet based Ayurvedic supplements, please see this article (from JAMA) on toxic metal content of some herbals used for Ayurvedic principles.

[trixiedee]

I'm sorry maybe I've not expressed things clearly - my neuro now says I don't have MS, I had a DAT scan which showed low dopamine levels. I am waiting to be tested for Wilson's disease. Have had my thyroid tested several times and it is normal. Why do you think it's early PD? I've had symptoms for 8 years and vague symptoms for much longer. I would say I have a lot of PD symptoms - bu tsuffer more from stiffness than tremor.

It seems that everyone on here who takes mucuna also takes sinemet. My neuro doesn't want me to start on sinemet as I am so young - I am a single mother to 7 year old twins and I don't want to be suffering the severe side effects of sinemet before I reach 50 - I may have another 30 years ahead of me...

The mucuna I take is blended with 2 other herbs but I know the ratio. It is organic. I don't understand why it isn't working, even if I take 2 heaped teaspoons nothing happens...

Originally Posted by Conductor71

Two things come to mind...

Do you feel 100 % certain of your doctor's diagnosis of MS? What you describe may be very early PD, but your symptoms also fit a lot of other things. Have you been tested for hypothyroidism, Wilson's Disease, or Myasthenia Gravis, etc.? With only having a clinical observation and exam system for diagnosis, you may have to be persistent.

Only reason I question is because there is a rather high misdiagnosis rate and an uncertain doctor will put you on a trial of PD meds like levodopa to further assess you for PD. Levodopa does not work super well for all, but I would think you would notice at least a little improvement with the drug.

With the mucuna, do you know how much you are getting? Is it blended with other herbs or are you taking it separately? Maybe the dosage is off because you should feel something, I would think, if it is truly PD that you have.

I think our biggest champion of Zandopa was Max...read his story here

http://neurotalk.psychcentral.com/sh...ghlight=mucuna

I would be welcoming a second opinion. Also, if you decide to order any Internet based Ayurvedic supplements, please see this article (from JAMA) on toxic metal content of some herbals used for Ayurvedic principles.

[Conductor71]

Hi,

I certainly understand and respect why you wish to avoid meds at this point. I am a year younger than you with a 15 month old, so I fully understand where you are coming from. I also demand a great deal of 'normalcy' right now, so my biggest hope is that we'll at least have some better treatments in 10 years.

So you are saying you have been symptomatic for 8 years or diagnosed for 8 years? I am not entirely clear on how doctors even record that for us. I was assuming early stages because you did not say mention more advance symptoms, so I made some assumptions there.

I agree that you should have felt some difference from taking much mucuna. The only thing that seems plausible is questioning the purity of the mucuna you have. Maybe buy some from a different source, take a small dose, and see if you respond differently....

[trixiedee]

Originally Posted by Conductor71

So you are saying you have been symptomatic for 8 years or diagnosed for 8 years? I am not entirely clear on how doctors even record that for us. I was assuming early stages because you did not say mention more advance symptoms, so I made some assumptions there.

I have had symptoms for 8 years which were diagnosed as MS until they became more obviously PD symptoms. But having spoken to someone else of my age with PD it is clear that the earlier symptoms were PD and not MS.

Yes I think I will try another source of mucuna althtough I am in the UK so probably won't order from the US.

Thanks

Trixiedee

PS please excuse any snappiness from me, I'm feeling quite negative at the moment.

[Ktisao]

Originally Posted by lurkingforacure

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.

What does Banyan call it? I can't find it on their site.
Thanks,
Kathie