(FYI I copied my own post from a fb group to save time. )
This is what I'm doing (mucuna pruriens plus carbidopa). It has been challenging to figure out, but my results are excellent. I've been experimenting with it since the end of September 2022. I think dosing is probably very unique for each person. pubmed.ncbi.nlm.nih.gov/308...
Written by
1LittleWillow
To view profiles and participate in discussions please or .
Sorry, I just wanted to post the link to the article before I got too busy and forgot about it (we have family from out of town visiting right now).
I hesitate to share details about my dosing (but I will) because it seems like some readers think that's "the answer," and if it doesn't work for them in just the same way, they give up, or say "it doesn't work" and discourage others from trying it. I also don't want anyone to think I'm trying to promote Barlowe's. I just buy that brand because I like having some whole plant material along with the extracted L-dopa, and I've had good experiences with buying from them for the past 2 years.
I am using Barlowe's Brown Indian 40% L-dopa mucuna pruriens powder, and I have a prescription for 25 mg carbidopa tablets from my neurologist (an MDS). I take a very scant 1/4 tsp. of the Barlowe's powder and slightly less than 1/4 tablet of carbidopa per dose (approx. 5 mg). I don't use a scale to weigh because I can't find one that's reliably accurate. Depending on my needs for the day, I either take it at 8 or 9 a.m., then again at 2 or 3 p.m. It takes about 30 minutes to start to kick-in, and in an hour I'm totally "on." It begins to wear off about 5 1/2 hours later, but I'm never fully "off" when I take the next dose after 6 hours.
I have experimented with a lot of different dose combinations (more/less mucuna and more/less carbidopa), but the above dose is my sweet spot at this time. If I increase the carbidopa (NOT the mucuna), I get painful "wearing off" dyskinesia on my left side. I don't really understand that, but it's consistent.
I'm 57 y.o., tremor dominant (left side). I was diagnosed in August of 2018, with symptoms for a couple of years or more prior to January of 2018, when I began having significant left-hand tremor, bradykinesia and rigidity (that's what sent me on a search for a diagnosis). I have never had balance or gait issues, just a left leg drag that resolved with high-dose thiamine, which I still take. I used to experience a lot of internal tremor in my head and mouth, but rarely have it now.
I saw my MDS in October of 2022. My previous "on" (using mucuna without carbidopa) UPDRS score in June of 2021 was 24. My "on" score 18 months later was 6. My MDS was really amazed.
I find that since I've started this regimen, my overall PD symptoms are much milder even when I don't take any mucuna. I've even been able to go an entire day without it occasionally. I have NO idea why that might be, but I'm thrilled. I had also started to develop "claw hand" and contracture in my left arm. That is completely gone.
As with everything else, you're mileage may vary, and all I can do is share what is helping me at this time.
My husband takes the mucuna powder and total game changer. He has the exact susmptoms as you and was diagnosed in 2019 at the age of 57. Mucuna has definitely helped with the meds dosage and helped with the tremors!
How long does a pound of Barlowe's Brown Indian 40% L-dopa mucuna pruriens powder last you at your current rate of use? If you don't mind saying, how much do you weigh?
Btw, the lady in the study was taking significantly more carbidopa than you at a total of 25 mg/3 times per day for a total of 75 mg. The levodopa/MP dose was not so clear because they did not describe the exact product she was using, but possibly raw MP powder because she was taking 800 mg four times a day which they said totaled 160 mg of levodopa per day.
Art, I have no idea how much (in English measurements) is in the pound, and I've been using it for a while, so measuring it now wouldn't help. I know that I haven't made a very big dent in the bag after 3 months (using a scant 1/4 to 1/2 tsp/day). I was originally using the capsules, and I still use them if I'm going to need a dose while I'm out of the house, but I switched to the powder because if I use only the capsules, I seem to overdose a little after 2 doses. The capsules worked brilliantly with the scant 1/4 tab of carbidopa for the first 2 weeks after I settled on that combo, but I think it was because I had been getting SO little L-dopa prior to that. The mucuna DEFINITELY has a carry-over effect. Even when I'm totally "off," I'm a LOT better overall than I was last summer (very mild bradykinesia and the constant very painful dystonia in my left hand and arm is basically gone). I really don't understand all of the benefits and neither does my MDS, but I'm happy.
I'm 5' 2" tall and weigh 104 lbs, but I'm trying to gain weight. I got sick at Christmas and was down to 97.
When I first tried carbidopa, I took a 25 mg tab with each dose of mucuna. I got severe nausea and vomiting. I thought it was too much mucuna, so I kept decreasing that until I got to the point where I was seeing NO symptom improvement, but I was still having nausea. That's when I realized maybe it might be hinging on the amount of carbidopa, so I started decreasing that. As I said, it took several months of experimenting, but I've finally got them in balance in a way that I'm really happy with--works consistently and reliably so I can plan my days around it if necessary. My MDS was actually shocked at how much better I'm doing. He asked to take a picture of the mucuna package so he could research it.
The other thing I don't really understand is the wearing-off dyskinesia when I take too much carbidopa... but NOT when I take too much mucuna. Too much mucuna causes mild nausea and sleepiness. This problem didn't start until I had been using the mucuna/carbidopa combo for a few months. I didn't recognize it immediately because I'd never experienced dyskinesia before. OWW! It was horrible.
The information you are giving out in this thread is great! That's why I saved your post for future reference.
I wrote a little about MP compared to Sinemet and my overall impression about MP was that it was a good and possibly better option to Sinemet, but I felt the problem was the amount of time each individual would need to spend to determine their best dose and combined with the lack of support from the medical community it would be difficult for most people to use it. The many other components of MP is what I feel make it a potentially better option than Sinemet and I guess that is true in your case. Here is a link to what I wrote :
I think that what you have written in this thread is the most useful MP information I have seen on the forum and will be highly useful information for people considering its use and I wish to thank you very much for that!
Thanks! I needed that encouragement lol. I sometimes hesitate to post because I feel like my experimentation is so unscientific, but I always hope that someone will get some benefit from it.
I can't remember if I mentioned elsewhere that I still struggle with timing of protein and B6 (in my B-complex). They definitely adversely affect the efficacy of the mucuna for me.
Even when using the prescription meds, it still comes down to trial and error, so imo you are basically doing what everyone else does, but you are sharing how you did it.
I had mentioned that I tried lots of other things with the mucuna prior to trying the carbidopa (green tea, etc). Some of them worked, but I had to take 3x as much mucuna (which was getting expensive and unpleasant), and it wore off after about 3 hours.
Your experience is remarkable and very encouraging, thanks for sharing it.
Can you please clarify one detail. You say that you saw your MDS in October 2022 and then say that your UPDRS score 18 months later.... Should the date you saw your MDS be October 2021? Or is your '18 months later.." wrong?
I have done further recent research on Mucuna and it does seem that it could work well for PD. This is also based on the latest clinical tests found online and on YouTube.
Incidentally, my wife tried Mucuna a few months back and she hated the taste. As there was less information on the possible benefits of Mucuna at that stage, she stopped taking it. However, we now buy empty capsules from our local health store and fill them up with Mucuna powder which she can now take. We are experimenting on the dose and have started with 3 capsules a day and halved her Carbilova tablets. Only just started this week and shall be posting any findings in the next few weeks.
We also use these empty capsules to add some black pepper when taking Curcumin as this vastly increases the uptake.
I probably could have constructed that paragraph differently to make it clearer. Sorry about that. What I wrote was:
"I saw my MDS in October of 2022. My previous "on" (using mucuna without carbidopa) UPDRS score in June of 2021 was 24. My "on" score 18 months later was 6. My MDS was really amazed."
So in other words, the earlier visit was in early June of '21 (score of 24), and the most recent visit was in late October of 22 (score of 6). Hope that clears it up!
I see your post was 6 months ago. But in case you are still reading this list: is your mucuna/carbidopa treatment still working? I ask because my wife is trying to substitute some mucuna for Sinemet Plus.
You write: " I take a very scant 1/4 tsp. of the Barlowe's powder ". If it really is 40% L-dopa, then I estimate your L-dopa dose as 180 mg.
How I calculated it: An american teaspoon is 4.93 ml ( freefoodtips.com/volume-of-... ) Call it 5 ml. From mucuna powder I have I estimate its density as 0.36 g/ml. 1/4 tsp is 5/4 ml = 1.25 ml. The weight of powder in 1/4 tsp is 1.25 x 0.36 g = 0.45 g. One gram of Barlowes contains 400 mg L-DOPA. 0.45 g contains 0.45 x 400 mg = 180 mg L-DOPA.
If that is taken every 6 hours then the total daily dose could be as much as 720 mg.
A question for others: is there a UK source of carbidopa?
mucuna as a sppliment to levdopa. i have been taking levdopa for the past 6 years and when i was suggested incrase levdopa from 1 tab to two tabs three times a day i started using dopa mucuna 2 tabs along with levdopa tabs instead.
I put a teaspoon or two of cold, unsweetened applesauce on a soup spoon, drop the powder on top, then just mix it a little with my finger and gulp it. I wash it down with about 8 oz. of water.
my MDS wouldn’t write me for it carbidopa by itself when I explained this is the regimen I wanted to try. Did you get resistance with getting the script for lodosyn aka carbidopa?
I don't take Sinemet. I tried it for 2 months and had horrible side effects. My MDS was resistant to giving the carbidopa Rx until I sent him the article I linked to in the original post.
I didn't even realize that link was behind a paywall. I know I was able to read the full article when I first found it and sent it to my neurologist, but I'm not sure where it was.
Could you tell me how you got to your ‘sweet spot’ ? I’m assuming you gave the mucuna and carbidopa a certain amount of time before you altered your doses etc. How long did you leave it before you changed dose?
My PWP was diagnosed at the same time as you. 54. He has similar but right sided.
Ugh! I've been pretty unscientific about it. I just kept trying different combinations of doses and keeping track of how I felt. It took about 4 months to get to the point I'm at now. I've been doing the same thing consistently for almost 2 months with no changes, and I don't feel the need to tweak it at all. The only things I'm still playing around with are the timing of my vitamin B complex and eating protein, both of which cause the mucuna to either not work at all or wear off very quickly.
I was diagnosed about 3 months before my 53rd birthday, so not quite young-onset.
Thanks for the reply. Really interesting. I just never know how long to leave it before you accept a dose isn’t working and change it so I thought I’d you. Thanks 😊
I definitely never stuck with anything that felt worse for more than a few days. It has taken me months to be ready to write this post because I didn't want to jump the gun and say things were working and then find out a week later that they weren't. 🙄
good morning. My HwP was diagnosed in 2016, went to the neuro but refused pharmaceuticals, so he did nothing until 2020. I started noticing right hand tremors increasing and right leg began to drag.
I found this forum, ordered Barlowe’s Brown Macuna too. We followed Dr Gonzales Maldanado’s writings, posted here on the forum. He has written a book on his work on Macuna:, Macuna vs Parkinson's : Natural Treatment for Levadopa. In fact, he’s written several books on Macuna
In it, he states green tea extract acts as a natural carbidopa. We use VitaCost brand, 250 mg. So, no need to ask the neurologist , if they refuse . I, too, take print-outs of information
We also read that Vit C & quercetin is beneficial. (VitaCost has a capsule that contains both)
I tried green tea extract, quercetin, vitamin C, and about 5 other things with mucuna over the past 2 years, but it never worked as well as I felt it should/could. Adding the carbidopa was a dramatic improvement for me. As I said, I think everything we do is case-by-case because of our genes, microbiome, metabolism, nutritional status, etc. So glad that has worked for your husband! I'm also so glad we can glean knowledge and ideas from so many experiences here.
good morn! My husband has been on stalevo for a few years changed from years of sinemet. He takes high dose b1. Last year. Just switched to sublingual a few days ago for better benefits. How do you suggest we start on the Mucana? At this point he’s been diagnosed for 15 years. The main trouble is diskenesia in left foot and orthostatic hypotension for the last three years. Thx for your input! Good to hear about your positive results!
I wish I could help with that, but I don't know. Hopefully others here will have some advice! I only took Sinemet for 2 months and then stopped because I was having too many really bad side effects. When I started taking mucuna, I was unmedicated, so there was no need to wean off of other meds.
oh I see. I’m constantly researching and I love hearing about the positive results from people like you! Thank you for sharing! I’ll keep investing! Best wishes!!
My pwp also switched some of her pharmas to mucuna last September. The results were excellent and her total L-dopa was cut by 1/3. She takes her mucuna with green tea extract. Not sure about the exact ratio, but it works. She takes 1/16 tsp (125mg) green tea powder with a 60mg dopa mucuna capsule and 1/8 tsp (250 mg) with a 125mg or 150mg dopa mucuna capsule. She uses several different brands, not Barlow’s. It is suggested that total daily consumption of green tea powder not exceed 1000mg. Results: hallucinations and dyskinesia disappeared; energy improved; speech improved.
hmmm so I have been trying just mucuna 800 mg. Would someone please explain why I might need the green tea or carnidppa? Was just diagnosed last May. Still avoiding drugs.
A very simplified explanation (scroll down to the section titled "The difference between mucuna pruriens and carbidopa levodopa.")apdaparkinson.org/article/m...
If you are taking any mucuna that has been processed to be more than 6-9% levodopa, it is no longer a truly natural product. The chemical composition of the levodopa in mucuna 15, 20, 25, 40 or 100% is exactly the same as is the levodopa in Sinemet, madopar, stalevo or the generic equivalents. How much levodopa does your 800 mg of mucuna contain? Some people will take a small amount of Carbidopa/levodopa with mucuna to fine-tune their dose.
Dont know about others, but I'm definitely not "fooling myself." I know I'm not unmedicated, and that what I use isn't 100% natural. Even if it was 100% dried plant material, it's still equivalent to Rx'd levodopa if taken in large enough amounts. However, I can't tolerate Sinemet but have NO noticeable side effects from the mucuna. 🤷♀️
I took that sentence out, but my reply to gomelgo was because he/she said they’re not on meds yet. There are plenty of people here who do believe that using mucuna is not taking meds.”
I wish I could, but there isn't much I can add to what I've already said up above. Did you read ALL of the comments on this post?
I'm still getting great results by combining mucuna with prescription carbidopa (prescribed by my neurologist). I know not everyone can get their neurologist to prescibe carbidopa, and that's why I shared the link to the article in my post. It helped me to convince my neurologist that it might be a good idea to combine the two.
I didn't have great results with mucuna alone or by adding things like green tea to it. It wasn't until I added carbidopa that it started working really well.
This is a copy and paste from another thread, but I am adding it to this thread also because it is relevant here :
1LittleWillow profile image1LittleWillow in reply to Dap1948
45 minutes ago
Yes, I'm a member of your group and Roy's as well (have been for years).
When I take mucuna, my MDS says that I'm asymptomatic (I just saw him last month), so it sounds like we're pretty similar. My UPDRS last month (on mucuna) was 1. He says that I'm actually doing much better than his patients who take Sinemet, which both surprised and encouraged me. I had taken Sinemet for only 2 months and probably never really reached a therapeutic dose, but my UPDRS while on it was 37. My UPDRS on mucuna without carbidopa was in the teens.
I've tried reducing my B1 dosage in the past many times, but my symptoms that are so completely controlled by B1 always come back. One gram/day has been a constant for me for 4 1/2 years. I did try reducing my dosage when my symptoms started to get bad a couple of months ago, but it just made it much worse. As I said, I finally decided to try increasing my dose instead, and I am feeling really great (again) now. If I notice any more changes as time goes on, I will definitely share them here.
Hmmmm... I was just thinking back on old symptoms, and I actually HAVE experienced tremor reduction from B1 because I no longer have internal tremors or slight tremor in my jaw (left/affected side) and tongue that I had early on after my diagnosis. 😊
I used to keep a list of forum members who reported tremor improvement from taking B1, but I no longer keep track. If I remember correctly the list got up to 29 people reporting tremor improvement form taking B1 while I was keeping track.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.