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    • #16152
      Jo S.
      Participant

      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?

    • #16154
      Anonymous
      Inactive

      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/

      • #16155
        Jo S.
        Participant

        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.

        • #16160
          Anonymous
          Inactive

          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.

        • #16163
          Jo S.
          Participant

          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.

        • #16164
          Anonymous
          Inactive

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

        • #16166
          Jo S.
          Participant

          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.

        • #16167
          Anonymous
          Inactive

          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

        • #19969
          GD
          Participant

          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.

        • #19974
          Christina
          Participant

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

           

        • #23081
          Beth T Browne
          Participant

          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.

    • #19950
      Rob Johnston
      Participant

      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?

       

       

    • #19971
      Daniel Best
      Participant

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

      • #19972
        Anonymous
        Inactive

        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:

        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.

      • #20005
        Rob Johnston
        Participant

        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.

    • #20006
      David
      Participant

      <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>

    • #20008
      Beth T Browne
      Participant

      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

      • #20019
        Rob Johnston
        Participant

        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

         

        • #23074
          Beth T Browne
          Participant

          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.

    • #23069
      William T.
      Participant

      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.

    • #23079
      Barry Block
      Participant

      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.

    • #23082
      Beth T Browne
      Participant

      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.

    • #23083
      Tania
      Participant

      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.

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