Mucuna Pruriens

[Rafiki2]

I would appreciate some advice on the following.

I recently started giving Mucuna Pruriens to my wife hoping to start reducing her usual dopamine medication and replace this with the natural L-Dopa that Mucuna has as this should have far less side effects.

However, after the third day, I stopped the Mucuna as she started having high levels of dyskinesia and quite a lot of 'brain fog' which I think were due to the higher levels of dopamine. Initially I did not lower her usual intake of Sinemet which perhaps I should have done.

Having stopped the Mucuna, her dyskinesia and brain fog almost immediately improved.

Has anyone successfully been able to start taking Mucuna in place of the normal Sinemet medication? Can this be done and if so, what transition doses should one apply?

My wife is also on the B1 HDT for the past month and currently takin 1200mg per day. This has not shown any major improvements yet (nor any worse symptoms) and we are thinking of increasing the dose to 1500mg in the next couple of days.

Thanks

[Juliegrace]

Is she experiencing problems from the sinemet? What strength of mucuna are you using?

[Rafiki2 in reply to Juliegrace]

Hi Juliegrace,

We started with about a level teaspoon of Mucuna in the morning mixed with her fruit smoothie. We presume that the increased dyskinesia and brain fog was because of the increase in dopamine that the Mucuna has.

She is currently on 2 x 25/100 carbilev and 3 x 50/100 Sinemet CR daily.

She is also on other medication but which doesn't contain dopamine.

[Rafiki2 in reply to Rafiki2]

Sorry, the Sinemet is 50/200 CR not 50/100.

[Juliegrace in reply to Rafiki2]

What is the strength of the mucuna? The percentage of l-dopa per serving?

When does she take the meds?

[Rafiki2 in reply to Juliegrace]

Sorry, I am not at home right now but the Mucuna she is taking is the powder form, not pills, which I think is 100% pure. I can only confirm later.

She takes the first Sinemet 50/200 CR at 7am, then goes on to the Carbilev 25/100 mid morning and a second Sinemet half an hour before lunch at 12.30pm.

Then a Carbilev at around 4.30pm followed by the 3rd Sinemet just before bedtime at around 8pm.

She also takes one capsule 100mg twice a day of Amantadine with 2 of the Sinemet. She has been on this dosage for over 2 months.

Thanks

[Juliegrace in reply to Rafiki2]

100% l-dopa “mucuna” is not actually mucuna at all. If it is the Nutrivita product the package does not say Mucuna on it. I also reiterate my question: is she experiencing problems with her meds?

When I measured the Nutrivita product on a scale a few years ago I think 100mg was 1/32 of a tsp.

[Rafiki2 in reply to Juliegrace]

I have examined the packaging that the Mucuna we have comes in. It does not specify the percentage of L-Dopa and I have contacted the suppliers in South Africa who say that they will find out and get back to me.

On the box it says that 1 tsp = 5ml = approx.3gm

It also suggests that for Maintenance use one can take 1 - 2 tsp once a day. For Therapeutic up to 3 tsp per day once acquainted with the effects.

I agree with Art and MBAnderson and thanks both for your input. Getting the dose right is tricky and one should attempt one change at the time. As we are still experimenting with the B1 doses and did start this therapy before the Mucuna, we shall wait to introduce the Mucuna for now.

I also like the advice of LAJ12345 in doing changes very gradually. Thanks.

[MBAnderson]

While studies show Mucuna acts quicker, last longer and with a lower frequency of dyskinesia, if it's 100% pure, that means it is all L-Dopa and a level teaspoon is likely at least 2 - 3 grams which is why she got dyskinesia. What makes Mucuna work better in some people is the rest of the plant because L-dopa is L-dopa is L-dopa. Personally, if I were going to try what you are trying, I would use a product that is 15% or less L-Dopa. However, because of different strains and differences in manufacturing, getting the dose right might have to be by trial and error - which easily risk getting too much or too little. Some believe you can determine precisely the (L-dopa) dose, but getting that right is tricky so you might have to rely on how your wife feels after each dose.

[PDWarrior1900 in reply to MBAnderson]

what do you think of this product?

amazon.com/gp/product/B06XJ...

[MBAnderson in reply to PDWarrior1900]

It is 99.6% pure L-dopa. It would be the same as taking Sinemet without the carbidopa -- and why do that? Since an L-dopa molecule is exactly the same whether it is in Sinemet or Mucuna, what makes Mucuna work better in some is the rest of the plant, i.e., everything except the levodopa.

Plus. the maker is suggesting 2 servings/day which would be 500 mg of L-dopa. While that isn't a lot, I don't see the basis for the retailer to be prescribing the dose.

The amount of L-dopa that occurs naturally in Mucuna is 3% - 7%, depending on the strain. That's what I would take.

ncbi.nlm.nih.gov/pmc/articl...

examine.com/supplements/muc...

[PDWarrior1900 in reply to MBAnderson]

thanks for the good info!

[chartist]

I would avoid adjusting her B1 dose until you get her mucuna/Levodopa properly adjusted. Adjust one at a time otherwise you won't be able to determine what is causing what.

Art

[Dap1948 in reply to chartist]

I was just about to recommend the same! Change one thing at a time.

[LAJ12345]

whatever you try just slowly increase the mp while slowly decreasing the sinemet . Don’t ever make sudden changes. And give it a few days after each change .

[Dap1948]

if you’re taking B1 you may be interested in the Facebook group - facebook.com/groups/parkins...

And as Art says, change one thing at a time or you won’t know what is causing what symptom changes.

Mucuna might be more natural but, as I understand it, if the brain has too much dopamine added, whether from Sinemet or mucuna, it will still produce dyskinesia.

[Rafiki2 in reply to Dap1948]

Thank you Daphne,

Wow, I saw your recent interview on You Tube and here you are answering my query from South Africa. I appreciate your advice and shall be looking at the Facebook link you sent.

I haven't got around to downloading your book from Amazon yet but shall be doing that soon.

[PDWarrior1900 in reply to Dap1948]

thanks for the Facebook link!

[parkinsonshereandnow]

In addition to all the good advice you have been given, I recommend this link from neurologist González Maldonado:

mucunaparkinson.com/

[Lizzy9]

Hello Rafiki2 ~ I have been very slowly working on decreasing my HwP's C/L. He is 71, in excellent health, not on any other prescriptions, dx of PD 12/20, and not a big man. He was on 3 - 25/100 C/L a day. This time we have only decreased his C/L by one half. In it's place he takes one (½ dose) of Dopa Boost with the ½ C/L at bed time along with 2000 mg of vitamin C. His symptoms of tremor and anxiety seem to have stabilized.

I like Dopa Boost because I "know" (or believe that I know) how much mucuna he's getting and it has several other good things in it to help it pass the blood/brain barrier.

He hasn't been a great responder to the B1. At at first I thought he did have improvements and maybe he would be worse without it, I have no idea but I don't want to discontinue just in case so we still give it to him. We tried 1000 mg and 1500 mg doses last year and that was way too much! Then I stumbled upon the mononitrate form of B1. Most recently we have settled on a dose of 100 mg Monday, Wednesday, and Friday. That "seems" to be helping somewhat and is so much easier to maintain his schedule taking it.

Also, last year I tried hime on varying amounts of Dopa Boost and right now he seems to be better. I wonder how long this will last? Always the constant search for improvement!

By the way I do have him on 3 TruNiagen a day since February. Within a short period of starting this, I saw huge improvements in his cognition. It is expensive but I feel it is well worth it the cost since I still "have" my husband.

(Also, we don't know how much his C/L is doing since he never really feels any kind of "relief" after taking it. But we think he would be worse without it. So onward and forward we go and constantly reading and trying, reading and trying!!)

I hope this helps! Have a fabulous day and God bless you both!

(PS ~ He does take a huge stack of other supplements!)

[MUCU]

HI Rafiki my advise is ask the doctor for a review Sinemet is bad medicine for me is the worst one so far that i have taken the secundary effects is out of this world please stop that. hope that your wife gets better.

[PDTom]

mucunaparkinson.com/

supplements.org/himalaya-or...

mucuna