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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
      Jean Mellano
      Participant

      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
          Jean Mellano
          Participant

          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
          Jean Mellano
          Participant

          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
          Jean Mellano
          Participant

          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?

           

    • #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
        Jean Mellano
        Participant

        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

         

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