Parkinson’s News Forums Forums Parkinson’s Treatment Alternative Treatments Has anyone tried Mucuna Pruriens (Dopa Mucuna) as a C/L replacement?

  • Has anyone tried Mucuna Pruriens (Dopa Mucuna) as a C/L replacement?

    Posted by Jo S. on November 2, 2019 at 1:35 pm

    I’ve read a few studies and success stories about people with PD using Mucuna Pruriens (velvet bean) as a natural replacement for Sinemet (C/L). Does anyone here have any experience with doing that?

    John Wick replied 2 weeks, 4 days ago 22 Members · 35 Replies
  • 35 Replies
  • Deleted User

    Deleted User
    November 2, 2019 at 2:11 pm

    hi jo, i have and failed miserably.  while it may work for some it did not work for me… very bad nausea and lots of $$$.    I followed the Hinz protocol:   https://parkinsonsnewstoday.com/2018/06/05/parkinsons-struggles-worsening-despite-best-efforts/

    • Jo S.

      Member
      November 2, 2019 at 4:43 pm

      Thanks, Jean. I appreciate the link, and I’m sorry you’ve had so many challenges. I’m grateful to know you gave this a good try and it didn’t work (six months is a long time to adhere to something that was causing such severe side effects!), as that makes me a lot more skeptical of this as a possible solution. The nausea you experienced makes sense, given everything I’ve read about this. I suffered horrible nausea when I started on Sinemet, so I certainly don’t want to go through that again with anything else. I guess we’re all seeking the best, least expensive, and most natural “cure” or treatment, but there just may not be one.

      • Deleted User

        Deleted User
        November 2, 2019 at 5:11 pm

        unfortunately, all of us with PD have challenges with meds 🙁  i have heard some people have had success with Zandopa, ordered on amazon.  problem is quality control.  i dont believe it is made in usa.

      • Jo S.

        Member
        November 2, 2019 at 5:29 pm

        Yep, quality control among products that are classed as supplements is virtually nonexistent. I think that’s one of the biggest challenges/problems with trying to go a more natural route. And for products not made in the US (and even some that are), it’s often anyone’s guess what’s in them.

      • Deleted User

        Deleted User
        November 2, 2019 at 5:31 pm

        Same quality problem with meds and brand vs. generic. They r not all equal

      • Jo S.

        Member
        November 2, 2019 at 5:36 pm

        That’s true. Although my doc said I shouldn’t notice any difference between Merck Sinemet and the generic C/L, I’ve read reports from a number of people to the contrary.

      • Deleted User

        Deleted User
        November 2, 2019 at 5:44 pm

        absorption rates may be different from brand to generic to generic, even between batches of one generic.  also, fillers are different. i started getting dyskinesia once i had to go on generic. it is not so bad on mylan generic but it still occurs.  never had dyskinesia on sinemet

      • GD

        Member
        December 24, 2020 at 2:45 pm

        I could have written Jean Mellano’s response word for word.  After following the very expensive Hinz protocol, suffering never-ending nausea, vomiting and extreme depression for six months, I stopped.  It was the best day of my Parkinson’s experience.  Today I still don’t take any specific PD medication – too many side effects – but rely on diet, good quality supplements, mild exercise and keeping my brain occupied with reading and doing genealogical research.  I’m not physically better, but am able to keep my life together, more often than not.

      • Christina

        Member
        December 24, 2020 at 10:44 pm

        Hi GD,  Would you mind sharing what supplements work best for you?

         

      • Beth T Browne

        Member
        January 27, 2022 at 5:52 pm

        Just read your review.  I have posted two at different times, but there is so much on these sites, I can’t keep up with where they are.  I, too, stopped the usual medicine they give everyone diagnosed.  Made me sick also.  Could not eat.  Lost 5 pounds, which for me at 98, is a lot.  Tried Rytary.  Same medicine but in time release form.  Did not have nausea, but had NO appetite, stamina down, and blood pressure up.  Stopped it after 3 months.  Energy back, and I am eating up a storm.  Not taking any thing except the Dopa Mucuna, 15%, I get from Amazon.  I take 3 a day, morn, noon, night.  Still have tremors and sleep issues.  I also am doing the sugar thing in my coffee.  While I may not be a lot better, after 3 yrs, I am not worse.  Balance not too bad.  What is not good, is my short term memory started going last year, about mid year.  Can’t bring up names I know well a lot.  My doctor said he could give me pills, so I will ask for them next month when I see him.  He said lot of patients have short term memory loss and is not always dementia.

    • Ann Marie

      Member
      June 4, 2024 at 6:04 pm

      Nevermind 🙂

  • Rob Johnston

    Member
    December 22, 2020 at 4:04 pm

    I am trying Mucuna pruriens in place of carbidopa-levodopa 25-100.  I am using “Dopa Mucuna” from Now Foods.  https://www.nowfoods.com/supplements/dopa-mucuna-veg-capsules .

    I am still working on the dose.  I do not experience indigestion.

    I am 70.  I was diagnosed with PD in September and began C-L then.

    Anybody else trying Mucuna pruriens?

     

     

    • Ann Marie

      Member
      June 11, 2024 at 6:17 pm

      Are you still taking MP? I would like to know your dosing and what kind of response you experience?

      Thanks

      Ann Marie

      • Shaun

        Member
        June 17, 2024 at 8:37 am

        The dosing is based on each person differently. We work directly with our naturopathic Dr. and check in every two months now since we are so close to where we need to be. Just fine tuning at this point. If interested, we are working with Dr. Chad Oler out of Madison Wisconsin.

  • Daniel Best

    Member
    December 24, 2020 at 5:03 pm

    My question is why not just go the prescription route for C/L?

    • Deleted User

      Deleted User
      December 26, 2020 at 7:19 am

      Daniel

      I dont trust big Pharma, Merck pulled Sinemet immediate release (vs. CR which was discontinued) without warning (for the second time).  Generics from different companies do not have the same efficacy for me.  Brand Sinimet worked the best for my symptoms.

      here is my blog about it:

      https://slippedawayblog.wordpress.com/2019/06/16/sinemet-shortage-the-silence-is-deafening/

      Some links may no longer work  since Merck is shuffling stuff around and Sinimet is no where to be found.

    • Rob Johnston

      Member
      December 29, 2020 at 2:39 pm

      Mucuna pruriens is a species of beans with a naturally high quantity of levodopa/L-dopa.  Scholarly papers suggest that it does not promote dyskenisias as much as C-L and that besides levodopa it has other benefits for PD.

  • David

    Member
    December 29, 2020 at 4:34 pm

    <h2>Mucuna Pruriens (Dopa Mucuna) is not a replacement for carbidopa/levodopa, it only replaces levodopa, and with very poor precision. Carbidopa is very important for preventing peripheral breakdown of levodopa, before it ever gets to the brain.  Inbrija inhaled levodopa has the same problem.  Without carbidopa, you get all the nausea and less of the benefits of levodopa.</h2>

  • Beth T Browne

    Member
    December 29, 2020 at 6:34 pm

    Hello,

    I was diagnoised in July of this year with Parkinson’s, but I may have had it a year before with only sleep problems and some shaking in my hand, which I thought was related to thyroid.

    I am almost 84, petite, and in my older age, my weight dropped down to 98. When I was put on the prescription of dopamine, it made me so nauseous I could not eat, and my weight dropped to 93. So, my doctor took me off and put me on Dopa Mucuna, which I get from Amazon. She has me on 15%, three pills a day. I was taking them morning, noon and night, but then I started getting very dizzy, even turning over in my bed, so she told me to try 2 in the morning w/ breakfast, and one with lunch. The dizziness went away.

    Started this around the beginning of August. It is now almost January. I can’t say my shaking has stopped, but some days it is better then others. I find if I do more around my apartment, I tend to have more shaking. I also try and walk 30 min 3 or 4 times a week. My goal is 5 times daily. My walking is not bad, but it is not what it use to be. I do have some balance issues. More when I am at home, then when I am out. Of course with the virus, I am not out much, but still drive and shop for food.

    My doctor will keep me on this for as long as she thinks it takes for me to be able to switch over to the prescription without problems. Since I have always been sensitive to prescriptions, I do not know if I will ever get there.

    I hope your New Year, is a good one, or at least as good as it can be for those of us with Parkinson’s.

    Beth

    • Rob Johnston

      Member
      December 31, 2020 at 2:34 pm

      Beth,

      Do you think that you and your doctor will be able to adjust your dosage of Dopa Mucuna so that you feel more comfortable?

      Happy New Year,

      Rob

       

      • Beth T Browne

        Member
        January 27, 2022 at 2:33 pm

        I am just now finding my comments about the Velvet Bean.  It is now January 2022.  I am still on the same dosage, but taking it morn, noon, and night.  No dizziness.  I am starting to add a 4th one at bedtime.  While I still have tremors, and they are best when I am not so active, I have not progressed to feeling much different.  The prescription Balance Class for a month a half helped some, but I have never been really bad.  Turning to quick or bending over is not good to do.  I have been on the Manital sugar in my coffee, once a day almost a year I think.  So, it will be 4 yrs in July that I was diagnosed.  Sleep is still a problem, so I take 1/2 of 0.25mg Xanax to help that some.  If I am going to be out in public for a long time, I take 1/4.  I am small, so I never can take a lot of meds.  I feel fortunate that I have not increased in some areas.  I know the LevaDopa stuff that did not agree with me and Rytary, which lowered my stamina, caused my high blood pressure to be worse, and took away my appetite does not cure Parkinson’s.  I feel much better without it, so I will fight this disease by increasing my exercise program.  I go to a class where  l that is an hour long, no breaks, for strength and balance.  She is a professional and really works us.  But I need to do more.  I am up and doing stuff all day.  I do not take naps.  My doctor does not like that idea, and I really don’t need them.  But must admit, if I sit down too long, I could nod off.  I was told by my heart doctor, and my Parkinson’s doctor that laying down and sleeping can cause high blood pressure, and that started this month.  I have been on blood pressure meds since my 60’s.  Inherited from my father it appears as I have never been overweight, but have cholesterol problems, which is weird.  I have never been a big meat person.  My blood pressure now is all over the place.  So, I would recommend every have a machine and check theirs at least once a day.  I will be 85 next month.  As I have lung issues and heart, I will probably die from that.  I have lost my short term memory which is very upsetting.  My doctor said many PD patients have that and it is not always dementia.  Michael J Fox lost his but not as soon as I have lost mine.  My doctor may give me Botox for my tremors he said.  I hope he does when I see him next month.

  • William T.

    Member
    January 27, 2022 at 11:27 am

    I was diagnosed with Parkinson’s about 4 years ago. I take 25/100 CL 3 times a day with 100 mgs o Amatadine in the morning. I decided to try Mucunia Pruriens. I have one teaspoon on the average of an hour or 1.5 hrs after the breakfast meds, following the advice given by someone with Parkinson’s in a review as part of the product. It gives me a feeling of complete normalcy about my self as well as lessening the symptoms! I think the carbidova helps the mucuna reach the brain from what I have read. Wish I could get off the CL completely and go 100% to Mucuna. The product I use is organic Kapikacchu powder (Mucuna Pruriens), available on Amazon.

  • Barry Block

    Member
    January 27, 2022 at 4:00 pm

    I use Mucina Pruriens (Nutracost) 800 Mg as a supplement to Sinemet CR. I also eat Fava beans as snack. These supplements are helpful without side-effects.

  • Beth T Browne

    Member
    January 27, 2022 at 5:58 pm

    I had nausea also 3 yrs ago when I was diagnosed, so the doctor recommended the Mucuna Pruriens, 15%, which I get from Amazon. Been on it about three years, and the Mannital sugar in my coffee, 1 tsp a day. Can’t say the tremors have stopped, or the sleep problems, but the tremors have good and bad days. If I do too much around my place they get worse, but if I am not doing a lot they are calmer. In July it will be 4 yrs since diagnosed. The only thing that has gotten worse is my memory, short term. The doctor said you can loose that without having dementia, but could get dementia also. So, that has me scared.

  • Tania

    Member
    January 27, 2022 at 6:06 pm

    Hello everyone! I’m doing quite well on the Marty Hinz protocol with mucuna powder, which I’ve been on since January of 2020, though other health problems have delayed getting onto a final dosage level. The secret to making it work, is the combination of other amino-acids that must be taken with mucuna, in place of carbidopa. Properly balanced, there will be no nausea! The process needs an alternative doctor, trained to implement the Marty Hinz protocol. There are ways to find one if you are serious about it, and I highly recommend it!

    I would love to have contact with the rest of you, but since I have email without internet, a friend is facilitating this contact for me.

    Twila Y.

  • Zee

    Member
    June 3, 2024 at 3:11 pm

    I tried using several different types of mucuna and felt Dizzy and sick on all of them. I even bought fava beans. The only thing that’s really helped me is Sinimet which I resisted for several months. I also purchased Neurali but it was too expensive to continue with. I think it helped me also and when I can afford it I plan to continue it’s use.

  • Lulu

    Member
    June 4, 2024 at 1:12 pm

    Mucuna Pruriens: it is important for all dopminergic support to be monitored by your neurologist and registered healthcare provider – do not self medicate as some discussions in the Forums about mucuna pruriens seem to be indicating. Mucuna pruriens does indeed contain L-dopa but depending on the production technique, time of harvesting of the plant and the pharmaceutical STANDARDISATION of dosages, just using any random product advertised as mucuna pruriens, is not advisable. Standardised dosage is essential from a reputable company.

    There is indeed medical research on the excellent efficacy of L-dopa supplements based on mucuna pruriens, including that done at The Hospital for Nervous Diseases in London UK by Prof Andrew Lees. In one of the books that I have published with Dr Geoffrey Leader and Professor of Neurology Leslie Findley – Parkinson’s Disease Reducing Symptoms with Nutrition and Drugs (Denor Press) – there is a chapter with various positive medical references about mucuna pruriens, from peer reviewed literature.

    Also L-dopa Response monitoring schemes are presented, including all the dopaminergic, drugs to enable people using L-dopa to report accurately to their doctors so that ther individual dosages and time of taking L-dopa can be more precise for best and safe practice – helpful therefore in attempting to support the “off-period.”

    Just as with different chemical pharmaceutical drugs containing L-dopa, dosage needs to be appropriate to each person and over – dose is just as vital to monitor – for safety.

    Mucuna may or may not be suitable for everyone and professional monitoring for the individual is important.

    It is advisable to not self medicate. Mucuna pruriens does indeed contain L-dopa but depending on the production technique, time of harvesting of the plant and the pharmaceutical STANDARDISATION of dosages, just using any random product advertised as mucuna pruriens, is not advisable. Standardised dosage is essential from a reputable company.

  • mary parker

    Member
    June 4, 2024 at 7:18 pm

    I use Solaray Dopabean. They have a certified lab and test everything. I have found it to be very consistent. It helps to take 2 with a B vitamin. It is a good compliment to my other meds like Rytary, Dopabean does not cause dyskinesia. It is very helpful to me.

    Mary

  • Martin Tessmer

    Member
    June 5, 2024 at 11:00 am

    Dear Jo:

    My wife is taking Mucuna as a subsitute for C/L (deleterious side effects). She is taking 3 tabs a day of Himalaya Organic Mucuna, with a doctor-prescribed target of 5 a day. Some specifics follow:

    * Each tab has 350 mg of velvet bean powder and 250 mg of seed. The brand is readily available on Amazon and Natural Grocers. Her Focused Ultrasound neurosurgeon (FUS worked to reduce tremor) said one of his patients has successfully used the Pure brand of mucuna for tremor reduction. As others have noted, quality control is an issue.

    * Overall, her tremors have been moderately reduced, although mucuna’s effects are confounded with the fact that we also reduced stress-causing circumstances in her life. A greater dosage may result in more marked effects. Stay tuned.

    * For those who are considering the Hinz Protocol, I suggest you check QuackWatch.com for their assessment of Marty Hinz’s credibiltiy.

  • Shaun

    Member
    June 6, 2024 at 5:12 pm

    I have posted on ‘Mucuna Pruriens’ section on this website. We are on an Amino Acid Therapy. We have had extreme success using Mucuna, along with Tyrosine, NeuroReplete, CysReplete, Methyl Support and Vitamin B6, all under the supervision of a naturopathic Dr. We are over a year into the process, and have gotten into a great daily routine. I could write it all again here, but it would be a lot. Long story short, all of the symptoms that my husband had a year ago, are 90% gone. Everyone has noticed the change. We will do it for life now, as it has been a great benefit to us. As far as the nausea goes, we dealt with that in the beginning too, however that’s why you work with a qualified Dr that understands this. We found ways to alleviate that, by tweaking different things here and there. I was skeptical at first as well, but figured we may as well try it, because we didn’t want to take medications with so many side effects that did nothing to ‘cure’ the disease. We are basically optimizing the remaining neurotransmitters left. Kind of like filling a cup enough to where once you get the right dosage, then you’re just maintaining it. Again, it has worked for my husband, but you have to be able to make lifestyle changes to some degree, but it is well worth the effort to have your normal life back!

  • marknicholson

    Member
    June 11, 2024 at 10:40 am

    Yes, I grow it and eat the beans (cooked?). I can also buy it in an Indian Ayuvedic shop nearby. Nobody can tell me how much dopamine is in the bean, or whether I can eat the leaves. The Ayuvedic just says ‘take x3 a day)…not very helpful when they are no contents listed

  • jane schore

    Member
    June 11, 2024 at 2:28 pm

    yes i have been on the protocol for 15 weeks and unfortunately, my symtoms got worse. i am now off and will try another option..dont know what that will be yet.

  • Tom1959

    Member
    June 12, 2024 at 12:04 pm

    Spoke to my neurologist concerning Mucuna. He stated that chemically dopamine is dopamine and was concerned purity and dosage of OTC products.

  • Deleted User

    Deleted User
    July 4, 2024 at 9:28 am

    I was diagnosed with Juvenile Parkinsonism at 16 after two years of doctor visits, tests and scary diagnosis. I remember being perfectly healthy, never even having had the flu until I was diagnosed. I was 47 at the time and was out to dinner with my family to celebrate after I got promoted at the office. While in the middle of a conversation with my mom, I passed out. About 30 seconds later I popped my head back up and continued like nothing had happened, while everyone looked like I was crazy. I lived with this all my life till someone told me about madida parkinson disease herbal formula. I placed an order from their website at http://www.madidaherbalcenter.weebly.<wbr>com or [email protected], I was on madida herbal treatment for 16 weeks and this year i felt no sign or symptoms of Parkinson disease again. Madida PD herbal formula gets rid of my PD, I advise anyone sick to give their herbal treatments a trial because it works effectively with no side effects.

  • John Wick

    Member
    July 4, 2024 at 2:23 pm

    My PD doctor said it’s never worked for any of her patients.

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