[shetawk]

Diagnosed w/PD last year.

Shaking isn't bad; balance & weakness disable me.

Took one sinemet and felt like a truck ran over me for 3 days.

Not one for self abuse, have been taking NOW brand mucuna, 800 mg. MP, 120 mg 15% Ldopa for a few weeks and don't feel different.

Is dosage wrong or brand or both?

Five different neuros I consulted said they never heard of MP...no help there.

B's and C vites, magnesium, taurine and toprol (for hbp) help a little but I still cannot go back to work, which is my goal.

Can I hear from some users on how YOU take mucuna so I can get off the merry-go-round?

Thank you.

shetawk

[Muireann]

Mucuna seems like a better option than l-dopa to me but don't expect neuros to be well informed about it. However, for the point you are at, can I advise another, more benign route to try out before you get too much into something as potent, unregulated and unpredictable as MP?

There is a nutritional supplement called Dopavite, available online from Vitalogic. I benefit a lot from it. It seems most effective when one is not on meds or 'unofficial' meds like MP. It takes weeks to months to see effect so you need to persevere. I also think that if you are experiencing a lot of muscle weakness you should get a specific B12 test for deficiency [does not get done in routine blood count] and if you are below 900 you should supplement with Methylcobalamin high dose, 5mg [5,000 mcg] such as
http://www.iherb.com/Solgar-Methylco...ets/14221?at=0

There are two different ranges, trans-continentally, as to what is considered a normal level of b12 [which diminishes as we age and is only available thru animal products]. I go with what the Japanese consider normal and don't settle for a blood level below 900. They routinely supplement everyone over age 60 and have the lowest level of Alzheimer's in the world. The methylcobalamin is a superior form to more commonly available and cheaper cyanocobalamin. I get very weak, 'walking in quicksand' effect when my levels drop. I am not a vegetarian but have poor absorption.

[stevem53]

I have only dabbled with Mucuna, so all I can share from my limited experience is that you really have to experiment with dosage, time of dosage, etc..As much as I would love to get off Stalevo, and on Mucuna, I havent had the patience to go through the grueling process of trying to figure out how to taper off Stalevo, and on Mucuna without the advice, and direction of a neuro..And then again, I really have no idea if this is a better course of treatment for my pd

What I do know, is that for me, Mucuna wears off quick..I get "X" amount of almost symptomless quality "on time", for "x" amount of hours, and all of a sudden, when it wears off, it wears off in a few minutes without much warning..It feels like falling off a cliff, so I would assume that doses need to be as accurately measured, and one would need to be as vigilant as possible in terms fine tuning it for that reason

I use it as a suppliment to my Stalevo, when I have physically challenging tasks to do..I have been a commercial fisherman most of my life, and I still fish part time..I cant do it without a good dose of Mucuna before I leave the house and I am able to fish for 3-4 hours, without dyskinesia, or wearing off, and it has been consistant and predictable..My guess is that it is because of the Entacapone in the Stalevo, reacting with the Mucuna..That is my assupmtion anyway, for what it's worth

I only use Mucuna when I need it for an extra boost of dopamine to get challenging tasks accomplished..Other than that, I dont use it, because it has been my experience thus far that, it seems the more levadopa I feed my brain, the more it seems to need to accomplish the same tasks that taking less levadopa used to address

[shetawk]

Dopavite/scalp tingles

<There is a nutritional supplement called Dopavite, available online from Vitalogic. >

Thank you so much.

Poking around, I found: Kathrynne Holden, MS, who says, "Use of dopavite might encourage production of dopamine, in many different parts of the body. But neither its iron nor the resulting dopamine can get into the brain for use as a neurotransmitter. " She also says same nutrients can be found in food and less expensive.
L-Tyrosine 2000 mg, Nicotinamide (vitamin B3) 20mg, Vitamin B6 2 mg, Folic acid 400 ug, Iron 20mg, Zinc 20 mg.

From livestrong.....

Sam Graci, in his book, "The Food Connection: The Right Food at the Right Time," recommends eating whey protein powder, which contains 1,500ng of tyrosine per two scoops, or cottage cheese, which has 1,495mg of tyrosine per cup. Graci notes that eating these tyrosine-rich foods quickly boosts levels of the neurotransmitters dopamine and norepinephrine, which stimulate alertness and generally improve mood."

That's a lot of cottage cheese but regular supplements can add more. On days I remember vites, I notice improvement.

<I also think that if you are experiencing a lot of muscle weakness you should get a specific B12 test for deficiency >

My B12 is 1,010.

Weakness may be caused by other factors, too. Maybe that's why Sinemet & MP didn't seem to help. Dr. muscle tested me & found Lyme, mercury & lead. Hulda Clark and Edgar Cayce cite mercury as one of PD causes.

Am getting bee venom treatment which gave me a very good 1/2 day last week.

Wonder whether anyone else experiences scalp tingles with arm movement? Seems like upper cervical involvement but docs say no. Is there a page with odd symptoms listed?

Thank you again for such a thoughtful reply.

[reverett123]

Originally Posted by stevem53

I have only dabbled with Mucuna, ...

What I do know, is that for me, Mucuna wears off quick..I get "X" amount of almost symptomless quality "on time", for "x" amount of hours, and all of a sudden, when it wears off, it wears off in a few minutes without much warning..It feels like falling off a cliff, so I would assume that doses need to be as accurately measured, and one would need to be as vigilant as possible in terms fine tuning it for that reason

Steve is not exagerating. I parked my car at a local restaurant, got out and started across the small parking lot when "BAM!" it was like a truck coming from behind. If I had been alone I would probably still be there.

I use it as a suppliment to my Stalevo, when I have physically challenging tasks to do..I have been a commercial fisherman most of my life, and I still fish part time..I cant do it without a good dose of Mucuna before I leave the house and I am able to fish for 3-4 hours, without dyskinesia, or wearing off, and it has been consistant and predictable..My guess is that it is because of the Entacapone in the Stalevo, reacting with the Mucuna..That is my assupmtion anyway, for what it's worth

I only use Mucuna when I need it for an extra boost of dopamine to get challenging tasks accomplished..Other than that, I dont use it, because it has been my experience thus far that, it seems the more levadopa I feed my brain, the more it seems to need to accomplish the same tasks that taking less levadopa used to address

Steve, I hope that Irene misses you as well as your boat. Good luck.

[stevem53]

Originally Posted by reverett123

Steve, I hope that Irene misses you as well as your boat. Good luck.

Thanks Rick!..The boat is coming out tomorrow afternoon on the high tide

Doesn't look good..I think we are going to get hammered..We're due

Yeah, that Mucuna is like hitting a brick wall when it wears off..A sudden stop

[nickvalo]

My mother who has PD also tried the NOW brand of mucuna and didn't feel a thing ... even after increasing the # of pills per dose. She recently tried Zandopa ... 1 teaspoon did not seem to have an effect, but 1 tablespoon did. However, just like in Steve's case, when Zandopa wore off, it hit hard (harder than when Sinemet wears off for her).

My question to the group: If someone doesn't respond to sinemet or it has an adverse affect (like maybe too much dopamine), does that mean the person may not have a dopamine deficiency or PD? Or can someone have PD/dopamine deficiency but just not respond to Sinemet?

[shetawk]

Thank you for your response.

I have the same question about Sinemet or any other Rx.

Where would I ask about symptoms?

[lindylanka]

PD is often diagnosed in part by response to sinemet. If there is an improvement in symptoms then it acts as a confirmation of the dx.

These things used to be considered definitive, I am not sure about how they are viewed now. The understanding was that you would not respond at all unless you had PD. That does not mean you do not have a parkinsonism if you do not respond. But you may not have idiopathic PD.

If you had an adverse response to dopamine perhaps it would be a sensitivity, that has been mentioned before on the forums. Both have been, no response, and adverse response, from people diagnosed with PD

My own initial response was to have considerably more mobility, but I did sleep a lot, something I had not done for a while. There are quite a lot of things that people can get as side effects which adjusting to medication, you'll find most of them on the insert in the packet. Some of these will wear off for most people.

Somebody else may be able to answer more comprehensively than this. I suppose one of the things to remember is that a diagnosis is made over time, unless it is confirmed by DATscan, and there is a spectrum of parkinson-like disorders, and it is eventually down to what works for the individual and gives a better quality of life. My take on it as a patient

Zandopa or MP are replacing the same thing as sinemet does, so you may get a different qualitative response, but both will wear off after some hours, and PD symptoms return.

[soccertese]

the question is what is the rate limiting factor in pd? if you are deficient in the neurons that convert tyrosine to dopamine, then you can eat all the tyrosine in the world and it ain't going to help. the enzyme in those remaining cells will be saturated and i doubt your cells are programmed to produce more enzyme just because there is more tyrosine, if that were the case our brains would go bananas everytime we ate a large steak or omelette.

you didn't say what strength of sinemet you are taking. i've read that less than 1% of the levodopa actually gets to the brain and that's only because there is added carbidopa which suppresses the enzyme that breaks down l-dopa in the liver, etc.

i hated to take sinemet since once you start can't stop but it works for me and had an immediate positive affect.
maybe you should try taking just 50mg?
one thing i think helps a little is american ginseng, i use the nature's way brand.

what does your GP/NEURO suggest? it's a catch-22 with pd imho, one tries to take the least amount of drugs possible but then you exercise less, lower the quality of your life and i believe that accelerates the pd.

as an aside, there is azilect which i tried and gave up and selegilene, which i liked but has side affects so i kind of go off and on with it - heart races at times, ringing in the ears. these are MAO inhibitors which reduce the dopamine breakdown in the brain. selgeline also breaks down to a form of amphetamine so it has a small "kick".