Hi. I am a new member. (Frankly, I'm not happy about being a member). I've been sitting here next to my husband, who is watching "The Bourne Ultimatum" for the 6th time while I have read every posting of this thread. My brother, who is not a doctor, (but plays one on television) has been trying to persuade me to begin using mucuna pruriens. I liked the concept but my problem has been that I am unclear about 1. where to get it; 2. what brand or formula to get, 3. how much to take with my regular medication, and 4. what are the negative side effects??

After reading all these comments, I now know even less. Maybe someone could give me a SIMPLE answer to the above questions. (You can bill in the morning.) My stats are that I started getting PD symptoms @ 45. I am now 52 (yikes!). I have been on sinemet 25/100 for 1.5 years and I am finding that it is not losing its potency, but rather its longevity. When I first started using it, I took 3 pills/day along with 3 pills /day of Mirapex. The longevity of the medication has decreased so quickly that in order to function "normally" I now have to take 5-6 doses per day and the longevity is still getting shorter.

I would love to take anything to improve my symptoms. As an aside, when I asked my doctor about mucuna, she feigned not knowing what I was talking about. Also that if there was stuff that worked that well, that the main medical community (not pharmaceutical) would jump on it. (She also warned me about getting info from the Internet.) BTW, my doctors are the big cheeses at Columbia Presbyterian NYC (allegedly some of the best around ).

So, any words of wisdom oh great ones? (The movie just ended, I'm off to bed.)

Mira

dear dear mira,
do you actually believe anyone of us are happy to be ill?
some members are here just to help others, and by doing so - they are helping themselves...
I am a PD patient/ advocate for cures...
if life throws you lemons - hey keep them because they are free, you can make many things from lemons, besides lemonade...
and to answer your question - the meds cause the body to lose essential minerals and vitamns - levadopa/carbidopa causes potassium deficiency -you may want to research B-12,
you do not get answers fron the neurotalk community - you get research ideas for yourself, ps - start with your attitude, you hate to be here, you know all the big cheeses, your brother is on tv -he's trying to give you ideas, to help you not harm you... do you dislike yourself and the world around you because you view illness as weakness?
you do the research we give the clues to what has helped us - I personally have had the scourge for 15 years and I am 45 years old ...
if you feel it unfair I tell you to research and try to see light instead of shear dread - do not worry - I wont bill you... lol
you can view in search of a champion -the documentary made by some of the finest PD patients I have ever met...
www.pwnkle.com/champion.htm
sincerely, aka a great one - if you want to meet great people - you wil find them here...
Albert Einstein quote - Great spirits have always encountered violent opposition from mediocre minds
tena

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

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!

Figured a few things out-
1- The bleeding question I raised about Zandopa is inherent to mucuna itself and is, in fact, used to advantage in treating certain bites of poisonous snakes. But it seems to require a high dose. Use your bleeding when you floss as a gauge.

2- There are enzymes in mucuna that block trypsin in your small intestine. Again, high doses over a sustained period can make it a serious problem. Heat breaks the anti-trypsin agent down without affecting the Ldopa. I had had two nights of stomach cramps. Baked the mucuna at 350 degrees F for five minutes and seems to have taken care of the problem.

3- I had been trying to use mucuna integrated in with the other meds. Sinemet, in particular, to piggyback on the carbidopa protection. In particular I wanted to take advantage of the fast "on" in the mornings. Started having major problems getting anything OTHER than the mucuna to work. Worried about the possibility of some shift in receptors. But KISS as they say. Mucuna acts so fast compared to meds and it has such a high protein content that it was blocking either the uptake from the gut or the receptors in the brain or both. By taking it first thing I was, in effect, starting a daily cycle that meant that mucuna was, indeed, the only thing that worked. Started today the old, pre-mucuna way and everything works like it did including the slow start.

So, now, I tinker with schedules.

-Rick

Much as I hate to, I am going to suspend my mucuna experiments, at least for now, due to some of the most painful stomach cramping I have experienced. This may just be me. I am pretty far along PD-wise and take lots of Requip and a fair amount of Sinemet. In seeking to replace them I was up to 50 g daily of mucuna and did, indeed, pretty much do without the store-bought stuff for a couple of days. But the cramping was kind of scary. Never experienced anything like it - just clamped down and held for several hours.

So, I am going to back off for awhile and maybe take a look at precursors. As to mucuna, if I were newly diagnosed I would be all over it and use it to avoid the meds as long as possible. I may well come back to it if I get down to where I don't need so much, but for now I'm saddlin' up and heading west. Going to start myself an amino ranch.

Rick: See below from an earlier posting. You can reduce mucuna dose dramatically with same effect if taken with reduced amount of sinemet

"But that's not the whole story: the enzymes which greet levodopa as it enters the brain have some identical twins in the bloodstream outside the brain. Levodopa which gets converted to dopamine in the peripheral bloodstream (that is, outside the brain) is of no use to the brain. The presence of these enzymes in the peripheral system means that for every molecule of levodopa that makes it to the BBB unchanged, there are many more that get converted to dopamine and get turned away. This creates a problem. You have to take a whack of levodopa in order for a sufficient dose to enter the brain. And then there's all that excess dopamine in the peripheral bloodstream looking for a home. Some of it can be used by your kidney; some can be used for regulating blood flow. The rest will cause nausea, vomiting and general unpleasantness.

Enter carbidopa. It acts as a bodyguard for levodopa, keeping enzymes at arms length. It does this well enough to allow five times as much levodopa to reach the brain. At the BBB, carbidopa gets turned away. This is convenient because once levodopa enters the brain we don't want carbidopa present to protect levodopa from the enzymes which will convert it to dopamine. When levodopa and carbidopa are taken together, a much higher percent of the levodopa reaches the rain. So the amount of levodopa taken can be reduced accordingly; this, in turn, prevents side effects by reducing the amount of excess dopamine in the peripheral bloodstream.

All levodopa pills come with enough carbidopa (or a similar drug) to protect the levodopa during its trip through our digestive system and bloodstream to the brain. Carbidopa is never 100% effective in its bodyguard action but it makes a big difference in the amount of levodopa that makes it to the brain.

Fava and mucuna beans do not appear to contain anything corresponding to carbidopa. From a medicinal point of view, the lack of carbidopa in the beans creates a problem. For an adequate dose of levodopa to reach the brain, a lot of beans have to be eaten. This is unhealthy, both because of the large amount of levodopa that gets converted to dopamine in the peripheral system and because beans typically contain small amounts of toxins. Bean toxins don't cause any difficulty if the beans are just eaten occasionally or in small amounts. But frequent meals of large helpings of beans would not be healthy.

In the USA, carbidopa is available by itself (under the trade name Lodosyn). Because it is a specialty item, it costs twice as much as a levodopa pill which has the same amount of carbidopa plus the levodopa. In Canada, Lodosyn is not an approved drug. So taking a Lodosyn pill with a small helping of beans is not an option.

At present, I have a prescription for 25 mg Carbidopa/ 100 mg Levodopa. Sometimes I just take the pill. But whenever convenient, which is most of the time, I break a pill in half and eat enough fava bean sprouts or mucuna bean powder to provide the other 50 mg levodopa. My assumption is that the bean levodopa will be able to piggy back on the carbidopa from the pill. Also, I know I am getting 50 mg levodopa from the pill so if my estimate of the levodopa content of the beans is a little off, the total error is less than it would be if I relied entirely on the beans. So far, this is working very well. But I'm in the early stages of PD and my system is more adaptable than it will be 10 years from now. "

FOR THE EXTREME NAUSEA they used to have me fill a script in Canada
called DOMPERIDONEwhich is now called Lodosyn -of which I was able to get at KU
it was because my sinemet made me so nauseated I vomited...

http://www.medicinenet.com/domperidone-oral/article.htm
_________________

GENERIC NAME: DOMPERIDONE - ORAL (dom-PAIR-eh-doan)
Medication Uses | How To Use | Side Effects | Precautions | Drug Interactions | Overdose | Notes | Missed Dose | Storage

USES: This medication increases movement through the digestive system. It is used to treat symptoms of stomach disorders. It may also be used to prevent nausea and vomiting caused by certain medications. Due to safety concerns, this medication is not to be used by breast-feeding women to increase production of breast milk.


HOW TO USE: Take this medication by mouth as prescribed usually 30 minutes before meals and at bedtime. Do not increase your dose or take this more often than directed. Your condition will not improve any faster but the risk of side effects will be increased.

SIDE EFFECTS: Headache, dizziness, dry mouth, nervousness, flushing, or irritability may occur the first several days as your body adjusts to the medication. Trouble sleeping, stomach cramps, hot flashes and leg cramps have also been reported. If any of these effects continue or become bothersome, inform your doctor. Notify your doctor immediately if you develop: chest pain, slow/fast/irregular heartbeat, swelling of the feet or ankles, difficulty urinating, swelling of the breasts or discharge from the nipple in men or women, menstrual changes, sexual difficulties. If you notice other effects not listed above, contact your doctor or pharmacist.

PRECAUTIONS: Tell your doctor your medical history, especially of: history of breast cancer, allergies. Limit your intake of alcoholic beverages. This medication should be used only if clearly needed during pregnancy. Discuss the risks and benefits with your doctor. Domperidone passes into breast milk. Due to the potential risks to a nursing infant, breast-feeding while using this drug is not recommended. Consult your doctor before breast-feeding (see also Uses section).

DRUG INTERACTIONS: Because this medication enhances movement in the digestive tract, it may affect the absorption and action of other medications. Therefore, it is important to tell your doctor of any nonprescription or prescription medication you may take, especially of: MAOIs (e.g., furazolidone, phenelzine, selegiline, tranylcypromine). Do not start or stop any medicine without doctor or pharmacist approval.
______________

http://tinyurl.com/92feh

MOTILIUM®
Janssen-Ortho
Domperidone Maleate
Upper Gastrointestinal Motility Modifier
Action And Clinical Pharmacology: Domperidone is a peripheral dopamine antagonist structurally related to the butyrophenones with antiemetic and gastroprokinetic properties.

Domperidone effectively increases esophageal peristalsis and lower esophageal sphincter pressure (LESP), increases gastric motility and peristalsis, enhances gastroduodenal coordination and consequently facilitates gastric emptying and decreases small bowel transit time.

The mechanism of action of domperidone is related to its peripheral dopamine receptor blocking properties. Emesis induced by apomorphine, hydergine, morphine or levodopa through stimulation of the chemoreceptor trigger zone (situated outside the blood-brain barrier) can be blocked by domperidone. There is indirect evidence that emesis is also inhibited at the gastric level, since domperidone also inhibits emesis induced by oral levodopa, and local gastric wall concentrations following oral domperidone are much greater than those of the plasma and other organs. Domperidone does not readily cross the blood-brain barrier and therefore is not expected to have central effects.

Domperidone elevates serum prolactin levels but has no effect on circulating aldosterone levels.

The mechanism of action of domperidone is related to its peripheral dopamine receptor blocking properties. Emesis induced by apomorphine, hydergine, morphine or levodopa through stimulation of the chemoreceptor trigger zone (situated outside the blood-brain barrier) can be blocked by domperidone. There is indirect evidence that emesis is also inhibited at the gastric level, since domperidone also inhibits emesis induced by oral levodopa, and local gastric wall concentrations following oral domperidone are much greater than those of the plasma and other organs. Domperidone does not readily cross the blood-brain barrier and therefore is not expected to have central effects.

Domperidone elevates serum prolactin levels but has no effect on circulating aldosterone levels.

Pharmacokinetics: In man, peak plasma levels of domperidone occur within 10 to 30 minutes following i.m. injection and 30 minutes after oral (fasted) administration. Plasma concentrations 2 hours after oral administration are lower than following i.m. injection, and this is likely the result of hepatic first-pass and gut wall metabolism. Peak plasma concentrations are 40 ng/mL following an i.m. injection of 10 mg, 20 ng/mL after a single 10 mg tablet, and 70 to 100 ng/mL after oral doses of 60 mg (tablets or oral drops). The half-life was calculated as approximately 7.0 hours in each case. The degree of human plasma protein binding was calculated from tritiated domperidone concentrations of 10 and 100 ng/mL as 91.7 and 93.0%, respectively.

The major metabolic pathways for domperidone in man are hydroxylation and oxidative N-dealkylation, the products of which are hydroxydomperidone and 2,3-dihydro-2-oxo-1-H-benzimidazol-1-propionic acid, respectively. After oral administration of 40 mg 4-domperidone to healthy volunteers, 31% of the radioactivity is excreted in the urine and 66% in the feces over a period of 4 days.

Indications And Clinical Uses: In the symptomatic management of upper gastrointestinal motility disorders associated with chronic and subacute gastritis and diabetic gastroparesis. Domperidone may also be used to prevent gastrointestinal symptoms associated with the use of dopamine agonist antiparkinsonian agents.

Contra-Indications: In patients with known sensitivity or intolerance to the drug.

Domperidone should not be used whenever gastrointestinal stimulation might be dangerous, i.e., gastrointestinal hemorrhage, mechanical obstruction or perforation.

Also contraindicated in patients with a prolactin-releasing pituitary tumor (prolactinoma).

Manufacturers' Warnings In Clinical States: Dopamine receptor blocking agents elevate prolactin levels; the elevation persists during chronic administration. Tissue culture experiments indicate that approximately one-third of human breast cancers are prolactin dependent in vitro, a factor of potential importance if the prescription of these drugs is contemplated in a patient with previously detected breast cancer. Although disturbances such as galactorrhea, amenorrhea, gynecomastia, and impotence have been reported, the clinical significance of elevated serum prolactin levels is unknown for most patients. An increase in mammary neoplasms has been found in rodents after chronic administration of dopamine receptor blocking agents. Neither clinical studies nor epidemiologic studies conducted to date, however, have shown an association between chronic administration of these drugs and mammary tumorigenesis. The available evidence is considered too limited to be conclusive at this time.

OK - Yesterday evening was a high-stress event and, as a result, I woke at 3 AM and couldn't go back to sleep. Got up and took two 4 mg Requip (8 mg total). Nothing. Zilch. Took the same again at 5 AM with same result. So, at 8:45 AM I caved and took one Sinemet CR (50/200) and one teaspoon of mucuna. Fully "On" in 30 minutes!

That and Imark's post got me to thinking about dosage. My first real test some time back was with homemade capsules and I got results with just two grams. But in trying to replace as much of the regular stuff as possible I got up into the high dose range. So maybe it would be worth going the other way and see what the minimum dose combined with meds might do. I guess I'm still in the game after all :-)

currently l'm using mardopa 100+25 tid to control my PD, c favorable result, l plan to change to mucuna pruriens, because l'm really concern about the possibility of side effect and declining efficancy in the future. l hope if anyone can give me some commet , and does anyone know the result of clinical trial of m. pruriens conducted in USA.
Thanks for you all.