Dear Mira,

My answers are:

1. My doctor prescribed it directly from the manufacturer - The Zandu Pharmaceutical Works Ltd , in India BUT i know some members got it via other sources.

2.Brand Name is Zandu (HP200) in power form.

3. How much to take: it's a matter of trial and error but the starting dose is one to two standard teaspoon daily (7.5 g) . Remarks: My two cents is to start Mucuna alone (but make sure that you dont have any key event to attend) to evaluate how your body respond to it and make adjustment.

4. side effects: similar to sinemet in the long term and when overdosed ie dyskinesia / headache

I dont like to be here too but I like the people here as I learn and get so much support from buddies here.

LING
dx at age 36
Now 43
HK

Dear CTenaLouise, thanks for the quick reply. (BTW, my brother does not play a doctor on TV...that was a joke.) Frankly, I didn't think my comment was that negative, except for the parenthetical statement that I was not happy about being a member. In any event, forgive me if I was. I neither feel sorry for myself nor do I ever complain ...to anyone. In fact, I am quite the opposite. I tend to stick my head in the sand, ignore my illness and pretend I'm fine. Nevertheless, I would still entertain and appreciate specific answers to my questions. The comments about my Mds was not to show off but rather to comment about their unwillingness to consider treatments outside the conventional.

Thank you Ling. Just what I needed. Do I find the the address for the Indian manufacturer in the internet?

here you go... "70, Gokhale Road South, Mumbai - 400 025, India"

but I will usually throw in two cents worth.

But first, last night's report. Took one requip about 7:00 PM and was on until about 9:30. If I counted right that means that I took four requip instead of six and two sinemet instead of three. Promising.

First, don't let anyone upset you. We're all on drugs.

I got your doctor/TV joke - one of my favorites.

My age, diagnosis, etc are similar to yours although my symptoms are a bit more advanced. If I remember right, the sinemet you are taking is the standard rather than time release sort. It might improve things if the two types were combined. The goal is to avoid a roller coaster effect. That can be destructive in itself in that the repeated "surge" is thought to damage the system. But you don't want to take too much because that leads to motor problems. So, we walk a tightrope- get enough in the system as quickly as possible in the morning and then cut back to just enough for the rest of the day. Kind of like bringing something to a boil and then simmering it the rest of the day.

One thing you might try with the Zandopa or even the sinemet standard type is an old trick of dissolving a day's worth in a bottle of water and taking a sip ever hour or so. This gives you more control over your dosing. Also, be aware that you need different amounts at different times of the day. It is one constant experiment I'm afraid.

Your doctor's ignorance is only exceeded by her faith in the medical community and I fear that she is typical. They don't teach these things in medical school and no Pharma detail man is going to mention it. Even if she did know it would cost her her license to suggest it. We are very much on our own out here.

Many doctors disapprove of the Net because there is a lot of bad info out there. But many disapprove because an uppity patient is a real pain in the butt. Learn to use the Net but verify. One place to start is the forum search right here.

Welcome aboard!

Whew!! I thought I was in the dog house before I started.

reverett123: Your suggestions sound fascinating. Your absolutely right. I am getting the roller coaster effect. Its annoying as hell....especially when I am with a client and all of a sudden I start to crash. And boy does it happen quickly. One minute I'll be feeling great and then five minutes later I feel like...well, you know what.

Are you saying that I can dissolve my mixture of Mirapex and Sinemet in my 12oz. bottle of Poland Spring and sip it throughout the day? And the medication remains just as effective??? If that's what you are saying I will try it today. BTW, rather than trying to obtain Mucuna from from India (I am basically lazy), is there a reliable source here in the US and how can I reach them??

Many thanks.

Or at least they did have retailers for the raw powder. If you want the Zandopa you may have to look further, but the last time I looked there were plenty of places selling it.

The roller coaster is more than annoying. It is whittling years off your life. And yes that is the way to do the sinemet but I don't know about the mirapex. The sinemet will last longer if protected from light (it turns black).

And yes, we don't get a lot of warning when the crash is coming. Once you sense it it is too late. The defense is sticking to a schedule of some sort.

You mentioned it being a problem when dealing with a client. You do realize that you have one of the most stress-sensitive disorders going, don't you? Both as cause and as a trigger for symptoms. If you have a high stress job, start looking for the exit now.
-Rick

Since 4 yrs my father was on Sinemet n the PD condition was worsening. Entacapone was added two yrs back followed by Mirapex last yr. The condition worsened more. Then i introduced Zandopa systematically reducing Sinemet/Mirapex to none at all. This has worked better. Presently im giving 2X7.5 gms Zandopa 6 times a day with 4 hrs gap. 2.5 hrs he is fi9 n 1.5 hrs he is frozen as compared to 1.5 hrs fi9 n 2.5 hrs frozen upon taking Sinemet/Entacapone/Mirapex. The result is improving day by day. Thanks to Almighty who rendered me with this age old treatment n proving that nature provides far more benefits to mankind than the synthetic drugs.

Food is taken half an hour after Zandopa followed by Supplements.

Supplements include:-

800IU BioE-4times a day

100mg Vitamin C-4times a day

2 Tabs VegEPA- 4 times a day

100mg Pycnogenol- 4 times a day

Now EGCG- 4 times a day

A REPOST FOR MIRA AND OTHERS:

I PAID WITH PAYAPAL.

I trust Zandopa over the supplements, too. I want to use the Zandopa because it was used in clinical trials. I don't recall it being expensive. I think I have the link to the company in India in a sticky on this site. It arrived in 9 days. I think I paid with PayPal.

Here's the link:

http://mall.coimbatore.com/bnh/zandu/zandopa.htm

Cost is $12.95 per 175 grams (at 5 g per day, Rick, that's 35 days). And buy four, get 100g free (I did that).
Price includes shipping worldwide. No, it doesn't. It's free over $100. But the shipping cost is low..only $2 no matter how many.

Ok folks, my Zandopa arrived today. I just took 1/2 my dose of sinemet (25/100), 1/2 my dose of mirapex (1mg) and 4 gm. Zandopa. I am expecting what??? I have no idea. But Iwill let u know. It is now 8:45p.