Looking for people who have phased out Ca... - Cure Parkinson's

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Looking for people who have phased out Carbidopa/Levodopa in favor of an all-mucuna program

Dupree profile image
29 Replies

I was diagnosed in 2006, and have progressed through Requip, Sinemet, and Rytary, recently exploring mucuna in place of Rytary. My maximum dosage of Rytary was four capsules of 3.75/95 four times a day; I have gradually reduced my Rytary amount to three capsules in the morning, followed by 350 milligrams of Barlow's brown powder mucuna over the rest of the day at two-hour intervals. I also take seven 300-milligram tablets of B1 and three 725 mg capsules of green tea extract spread over the remainder of the day. The switch was motivated by a desire to lessen the dyskinesia that seemed to be a prominent effect of the increased reliance on Rytary as the disease progresses. I'd like to learn about other people's experiences switching from synthetic to natural levodopa, especially if they have eliminated Rytary from their treatment. I'm worried about letting go of the known relief that I get from Rytary.

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Dupree profile image
Dupree
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29 Replies
GymBag profile image
GymBag

Just curious as to why you call it "synthetic" Do you not know how it is produced ? What is synthetic about it?

bepo profile image
bepo in reply to GymBag

All pharmaceuticals are synthetic, and patented. Natural mucuna cannot be patented and is found in nature. We have used natural mucuna for years.

pdpatient profile image
pdpatient

Hi Dupree, if by "natural", you mean virgin, unprocessed or at least minimally processed, natural state Mucuna, then I am sad to say that you are bound to be disappointed. Did you know that natural Mucuna only has 5 to 6 percent Levodopa? Any Mucuna product with a percentage more than that is highly processed. In other words, its exactly what you are looking to avoid: "synthetic".

I know that for you it is a difficult choice. Rytary is difficult for me too and so is Requip. I too have dyskinesias and dystonias, depending upon the time of day. I just work with the doctor to smooth out the rough edges. I have news for you. Life will never be perfect. If it seemed to be before the Parkinson's diagnosis, it was just an illusion. In fact, we are lucky to even have pharmaceutical options and surgical as well as non-invasive options such as focused ultrasound. In the earlier part of the last century, before 1960's when Levodopa was discovered, people really suffered.

Hang in there and trust me, for all its shortcomings, modern day pharmaceuticals is still safer. Consider this: what would you do if you end up needing to be hospitalized for anything? Will you ask the nurse to feed you with a spoon of Barlow's every two hours? They would laugh you out the door🤣

I am not kidding. I went into foot surgery when I was newly diagnosed and taking Mucuna. The organic raw powder kind. The intake nurse asked me if I was taking any herbals or over the counter stuff. I told her that I was taking Mucuna. She didn't understand. I was supposed when she just rolled her eyes and just shrugged and went on with it. I was only sedated with local anasthesia, so I figured I'd be okay. I was. I now realize how stupid I was then. I have known people who have never come back from general anasthesia because they neglected to tell the surgical center about "simple" stuff like St. John's wort.

bepo profile image
bepo in reply to pdpatient

With pharmaceutical drugs for PD, do you get horrible side effects, like dysconesia? You don't from the natural product.

KERRINGTON profile image
KERRINGTON

I know there are quite a few people on this site who have made a transition. Keep plugging in different keywords. Eventually you'lll see lots of posts on this subject.

pdkid profile image
pdkid

if you search for "mucuna" on this site, you will find a lot of info! i think it's worth looking into for sure.

WinnieThePoo profile image
WinnieThePoo

I think 2 things are important.

First, there is no difference between levadopa in Sinemet and levadopa in Macuna. They are both C9H11NO4.

In the same way pure distilled water is H2O. And pure water distilled from mountain rain water, will be the same as pure water distilled from a puddle, or sewage for that matter. Where it came from makes no difference. Water is H2O

Levadopa is C9H11NO4

As such, where the levadopa comes from will have ZERO impact on dyskinesia.

Secondly - without Carbidopa (or Benserazide) you probably need 5 times as much levadopa as you do for levadopa with one of those decarboxylase inhibitors. Green Tea, vitamin C and other natural decarboxylase inhibitors may reduce the amount of levadopa needed - but by how much? It will be very variable

Since dyskinesia is thought to be due to high supplementation levels of levadopa, the most likely reason for switching to Macuna alleviating the problem is you are cutting the dose. And of course, with it , potentially, the therapeutic effect

Nonetheless - if there is a fairly fussy "sweet spot" for just the right amount of levadopa to get maximum benefit, without dyskinesia, then MP may make it easier to hit that spot. An MP tablet may be only 60mg levadopa. A Sinemet 12.5/50 is the equivalent of 250mg

bepo profile image
bepo in reply to WinnieThePoo

If parkinson's drugs were natural and just like mucuna, they couldn't be patented.

Cagey84 profile image
Cagey84 in reply to bepo

Bepo, levodopa isn’t patented.

in reply to Cagey84

Yes it is, big pharma pays Google to delete the patent (etc)

bepo profile image
bepo in reply to Cagey84

Isn't it purchased with a prescription?

Cagey84 profile image
Cagey84 in reply to bepo

Yes, but that has nothing to do with a patent.

WinnieThePoo profile image
WinnieThePoo in reply to bepo

That's not true. The original sinemet patent was for the idea of combining carbidopa with levadopa.

WinnieThePoo profile image
WinnieThePoo in reply to bepo

Remember, just because you're paranoid doesn't mean the bastards aren't out to get you 😂

Gioc profile image
Gioc in reply to WinnieThePoo

read Bepo post well before offending please. :-)

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

It's a very corney well known English joke Gio

Gioc profile image
Gioc in reply to WinnieThePoo

ooops! :-)

Tryguy profile image
Tryguy in reply to WinnieThePoo

How do you come up with a sweet spot ratio using mucuna and green tea ( matcha)? The Matcha is pretty powerful..

Buckholt profile image
Buckholt in reply to Tryguy

A few years ago you posted about your liquified Levodopa. Do you still do that?

i DC'd sinemet and went to all mucuna for about 5 years, mixing doses and drastic on off times were not worth it to me, mucuna also ended up giving me scarey heart palps. i have a good friend who had the same experience. cheers.

b-bar profile image
b-bar

L' tyrosine is hormone that we have in our body, it should have no bad effect on the body. sinemet was not good for me.

i take 2 l tyrosine morning and noon and sinemet in the evening. sinemet is less efficient for pd but i can sleep better with it. l tyrosine is part of the transformation of levopoda to dopamine (look wiki). the medecine does not want to research l' tyrosine effect because an hormone is sold as supplement that give less revenue to the seller. the medecine search only expensive treatments

Cagey84 profile image
Cagey84 in reply to b-bar

Hi b-bar, tyrosine is an amino acid, an essential component of proteins. It’s not a hormone. It’s a precursor to levodopa, but if you eat a normal diet you don’t need to supplement with it. It won’t give any symptomatic relief through any route I’m aware of.

billPD profile image
billPD in reply to b-bar

how much and what brand Tyrosine are you taking. You know Tyrosine and L-dopa should not be mixed. tyrosine lessens the affect of L-dop. thats probobly why your sinemet is less effective. tyrosene comes from meat and chicken and other protiens. another reason sinemet is less effective when consuming protiens.

Horseriding4 profile image
Horseriding4

Hi. Thanks for this. Would love to hear more from you as to how you are feeling.....

Tryguy profile image
Tryguy

Hi I use nutravitashop mucuna Which is basically 100% l-dopa. I have used Straight carbidopa With it in a formulation that seems to work pretty well for me. I would like to use matcha green tea to replace carbidopa. I just have to figure out the right ratio. For ex 1 tab of c/l is 1:4. Anyone out there try this?

Tryguy profile image
Tryguy

Hi I use nutravitashop mucuna Which is basically 100% l-dopa. I have used Straight carbidopa With it in a formulation that seems to work pretty well for me. I would like to use matcha green tea to replace carbidopa. I just have to figure out the right ratio. For ex 1 tab of c/l is 1:4. Anyone out there try this?

I take Now Mucona with Now LTyrosine. Carbadopa Levadopa gave me side effects

HekateMoon profile image
HekateMoon

Hi Bepo. I used mucuna extract from brittish supplements which is 99% levodopa 357mg levodopa. After a while i had to give it up. I felt quite unwell...it was too much for me and madopar feels ok for now.

parkie13 profile image
parkie13 in reply to HekateMoon

I used it for probably at least two years. Different concentrations and different mucuna product. Towards the end it gave me diarrhea. I tried it recently again and I cannot take it for the same reason. It makes me feel sick too.

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