Seeking Comments From those combining Muc... - Cure Parkinson's

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Seeking Comments From those combining Mucuna Pruriens (MC) with their Sinemet (C/L)

BUZZ1397 profile image
30 Replies

When combining MC w/C/L how does that seem to work best for you? I believe there must be a better way than I have done so far. I have taken them at the same time and independently and one awhile before the other in both directions. I've taken MP with water, juice, hot pineapple juice as a hot beverage. That last actually worked pretty good. I'm currently testing taking MC when I first begin sensing chest fasciculations letting me know the C/L is running out, with a cup of black tea. After a few minutes it kicks in then I find I can put off taking the C/L, until a little warmth, not hyperpyrexia begins. I don't think it needs to be this complicated and I'm seeking something simple that has eluded me so far. What do you do that helps to keep your levodopa level steadier?

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BUZZ1397
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30 Replies
Bailey_Texas profile image
Bailey_Texas

Do you mean hyperpyrexia (a extremely high fever 106 +).

One thing i do is take my meds on a regular schedule. Every 4 hours works for me. Waiting for symptoms to start is too late. Most meds take 30 to 60 minutes to start working. My meds work a little different every time i take them depending on what i am doing. Just a weather change can effect them. Mc can be very inconsistent from what i have read.

BUZZ1397 profile image
BUZZ1397 in reply toBailey_Texas

Just a little warm feeling, I don't know, the corect word. Hyperpyrexia is not the correct word. Thanks. Yeh MC inconsistency has been a problem. Currently have a bottle supposed to be standardized 15%. Hoping to find a way to use it and make each C/L dose be less of a roller coaster ride. Do you ever get dizzy from the up and down off the dose of C/L your doc prescribes for you? If I took as much as my old neuro prescribed for me I'd not be a safe driver half the time. There would be a lot of pulling over to wait till my eyes got right again. :) So, I have a goal, learn how to stabilize my levodopa, every PDer's dream. :)

Boyce3600 profile image
Boyce3600 in reply toBUZZ1397

How does it affect your eyes during those times

BUZZ1397 profile image
BUZZ1397 in reply toBoyce3600

"Getting my eyes right" is a saying.

Boyce3600 profile image
Boyce3600 in reply toBUZZ1397

Sorry with all this PD affects, I just figured...

KuriousKaty profile image
KuriousKaty

My partner Jay combines Mucuna and carbidopa, no levodopa. We also add in other supplements like Quercetin and Green Tea to help prolong doses. Jay is 7 years into the disease and decided to drop Sinemet and other pharmaceuticals about 2 years ago. It's been tricky to find the right balance but what we're doing now is working pretty well. When he medicates with Mucuna he's nearly asymptomatic but he only likes to medicate as needed. When he's just hanging around the house, he prefers to take nothing and will just deal with the tremor, even though it's pretty severe when unmedicated. Sadly, I don't think there's an easy answer. Sounds like you've found a way for the Mucuna to help you prolong doses, which is great. As for maintaining steadier levels of LDopa, Jay does what you do... he has some clues that he's getting "light" and will just add Mucuna and supplements to get him to the next dose. Often it works, sometimes it doesn't. Best of luck!

BUZZ1397 profile image
BUZZ1397 in reply toKuriousKaty

Thanks. Best to you and Jay

parkie13 profile image
parkie13 in reply toKuriousKaty

How much mucuna and how often does Jay take it?

ruthgt profile image
ruthgt in reply toKuriousKaty

Mucuna is levodopa it absorbes less then the regular medicines .

Bailey_Texas profile image
Bailey_Texas

I am sad to here that your parner Jay has stopped using pharmaceuticals. They should be able to enhance his life in so many ways when used correctly. I am able to live a full life using them. I do not have tremor so i do not know how well they work for it. I do know pharmaceuticals can be scary and have bad side effects believe i have had them all enough to put me in the er. But today after 11 years i am almost free of my Parkinson's with a small amount of side effect. One thing i have found to be true for me is too small off a dose is just as bad as too large.I take 2.25 times the limit of the daily recommended max dose of C/L.

KuriousKaty profile image
KuriousKaty in reply toBailey_Texas

Hi Bailey - no need to be sad about the pharmaceuticals. He didn't really like how he felt on the meds and the Mucuna with the carbidopa works to eliminate his symptoms. For now, he's relying on LOTS of exercise, diet and supplements though we're ruling nothing out for the future... just one day at a time. How much C/L do you take as a dose? And how much daily? Along with other meds too? I'm always curious about what works for different folks... good to keep an open mind!

Bailey_Texas profile image
Bailey_Texas in reply toKuriousKaty

Good morning Kathy

I am glad to hear that Mucuna works for Jay. I understand about how Jay feels about pharmaceuticals they mess with my mind also but the good far out weighs the bad by a lot. I just want everyone to use what is available to them to ease or control their PD. Some PWP do not use pharmaceuticals just because they are pharmaceuticals. But Jay has tried pharmaceuticals and made a good decision based on what works for Jay and that is great. Keeping a open mind is always a good thing.

Now for my meds. I am in my 11th year of being DX with PD and have taken only pharmaceuticals and i have used a variety of meds. i have very little side efects.Today i take the following.

1 50/200 C/L extended release and 1 25/100 C/L instant release every 4 hours 24 hours a day.

1 6 mg Requip in the morning

2 fish oil , a daily muti vitamin ,and 5000 iu of D-3

I also exercise (Crossfit 5 times aa week).

Bailey

Tmarsella profile image
Tmarsella in reply toBailey_Texas

Did you once take Azilect 1gm ?

Bailey_Texas profile image
Bailey_Texas in reply toTmarsella

Yes i did. Had to stop taking it due to heavy depression at night every night. When the Azilect went away so did the depression

Tmarsella profile image
Tmarsella in reply toBailey_Texas

Azilect scary side effects, thus never started it. Docs sometimes treat us like lab rats. Here, see how this works. Mucuna P is natural.

Bailey_Texas profile image
Bailey_Texas in reply toTmarsella

With PD i think we have to be lab rats. No two of us are the same. Even using natural products is hit and miss. A lot of PWP can not take a small dose of C/L but i take 18 25/100 and 2 6mg Requip 24 hour with little are no side effects. I was on a differant meds 7 months ago this is my new med cycle.

karolmilk profile image
karolmilk

I take 1Mucana Prurient 350 my capsule form when I take Sine met 25/100. It has allowed me to reduce Sine met from 9 1/2 pills to 6 1/2. I have less symptoms than before taking Mucana .

BUZZ1397 profile image
BUZZ1397 in reply tokarolmilk

I would try increasing my MC from one cap to 2 caps prior to the half C/L I am currently dosing with. But I recently began to use MC from a new brand and they are a standardized 15% 800 mg capsule. So, I'm going to continue with this for awhile longer to see how this goes. If i'm still not happy I'll do something else. I hope that this at least continues to works well for me as it has for you. Definitely has been better than C/L alone. Thanks

karolmilk profile image
karolmilk in reply toBUZZ1397

I have also used fresh fava beans from our local Atlanta farmer's market but they are out of season now, so I'm using Swanson brand 350 mg Mucana capsules. I had been using Teva generic C/L but they stopped manufacturing and when I changed to other generic Mayne brand I pretty much crashed with lots of symptoms. Neuro suggested non-generic Sinemet and I've been able to decrease from 9 1/2 pills to 6 1/2 pills with Mucana. I'm still experimenting trying to get back closer to 4 1/2 pills I was taking when using Teva generic.

BUZZ1397 profile image
BUZZ1397 in reply tokarolmilk

That is the 3rd time recently I have heard a mention regarding TEVA generic. Once, from a doctor's nurse associate talking aboout irregularity of the TEVA tabs potency, once from a participant here about TEVA selling their mfg. unit for Sinemet to another co. and now yourself confirming that news. Hmm...guess I'd better remember to ask the pharmacist to give me brand name Sinemet. But I have about 5 months of generic TEVA sinemet in the pantry. Quandary? What's the chance I will remember this post in 5 months? You know what your mention of Swanson's Mucuna is a coincidence. I recently tried to reorder the NOW brand DOPA Mucuna that I have run low on and their website said they were out of stock. So, I ordered the same as you from Swanson's. No problem with the Swanson's I gather. I hope when my shipment comes in it works well for me. Thanks for the history about FAVA beans. I have some in the pantry. Not fresh peeled and dried but i like to eat them now and then with brown rice. They feel good. Speaking as we were about irregularity in substances from drug manufacturers, awhile back my cardiologist recommended a CoQ10 brand called jarrow for my circulatory health. I know many PWPD take CoQ10, maybe you do. But today in talking with his nurse I learned the cardio has discovered jarrow changed their CoQ10 product and he believes it is no longer good. The doctor is now recommending his patients switch to NOW brand ubiquinol. I said to the nurse maybe the something that is wrong with Jarrow ubiquinol is why my Sinemet requirement has gone up since I began taking Jarrow. She said let us know about that when you begin taking the NOW ubiquinol. See the problem is the FDA is not protecting us, not from impurities in otc substances nor in RX substances. That's a HUGE issue for everyone that requires quality therapeutic interventions. But I ramble.

karolmilk profile image
karolmilk in reply toBUZZ1397

I know Teva had a voluntary recall in 2014 because it was "super potent". I am thinking some of this Teva is being prescribed and when someone like me changes to other generic we have problems . I went from 4 1/2 Texas to 9 1/2 Maine generic. Not fun, because I couldn't figure out why I had so many symptoms .

karolmilk profile image
karolmilk in reply tokarolmilk

Teva to Mayne

BUZZ1397 profile image
BUZZ1397 in reply tokarolmilk

No, not fun, that must have been frustrating. Take care and share if you have a best practice for combining MC and C/L. On a lark I took 2 of my 800 mg MC caps this evening. Got a lift out of it.

KuriousKaty profile image
KuriousKaty in reply toBUZZ1397

In case you're looking for something else to try down the road, we use a brand called Keter Wellness that seems to be very consistent. It's 700mg standardized at 20% so 140 mg of L-Dopa per capsule. Jay combines two of these with about half a carbidopa tablet and it works better than his Sinemet did.

BUZZ1397 profile image
BUZZ1397

Thank you ma'am. The NOW brand that I can't get currently is 120 mg of L-DOPA. When I take 2 of those with half a Sinemet I get a lift in my britches, you know what I mean? :) i am writing down KETER WELLNESS for a future order if the substitute coming in the mail is not a quality product. Thank you for the recommendation. My best to you and your husband.

ruthgt profile image
ruthgt in reply toBUZZ1397

On the Now mucuna is

written that a serving is 2cupsule and this is 120 mg dopa

ruthgt profile image
ruthgt

I use mucuna from powdercity it is 98% Ldopa .each dose is 150 mg I took today 2 times sinemat 100/25 and 3 times mucuna .separately. for about 6 month I take with my coffy a tea spoon of Manitol.2 times aday. It helps to delay the need for meds..I take also Hemp oil .

4000Nights profile image
4000Nights in reply toruthgt

How is this working for you... a year later?

BUZZ1397 profile image
BUZZ1397 in reply toruthgt

Thank you ma’am

bmak54 profile image
bmak54

I take both at same time any time between 3 1/2 to 4 hours

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