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    • #21934
      Robert Li
      Participant

      Hi All,

      I just started taking mannitol around two weeks ago (Mannitol Balance, made in France, from Amazon).  I am just taking the amount recommended on the package for sweetening (1.5 tsp per serving, up to 4 times a day), but I am just taking once per day.  Curiously, it doesn’t taste very sweet at all to me and I would not certainly not choose to use it in place of sugar!

      After around a week my muscles felt lighter.  It’s hard to explain because I didn’t think my muscles felt heavy before, but now moving is just somehow much easier.  It’s as if part of my muscles weren’t working before, and were just deadweight.  I also feel like my short-term memory is better in general, although some days are still better than others.  I was wondering if anyone else is experiencing some successes with mannitol?

      To be clear, I am at recommended optimal serum levels of vitamin D and am taking many other antioxidants as well.  I haven’t changed those recently.  However, I suspect if I had not been taking those, mannitol may not have worked.

    • #21956
      Ruud
      Participant

      Hi Robert

      I am also using annitol

      i take about 12 grams per day

      it makes me feel more clear in the head and i experience less sleepy feeling i the day

      for me a good supplement

       

      ruud

      • #21988
        Melissa Harrison
        Participant

        I am wondering. Is mannitol a substitute for C/L?? Thank you

    • #21958
      Thomas Rutschman
      Participant

      I am glad to hear that others have had a good experience with Mannitol, too. I have been taking it for 11 months now and I still feel it has given me back my life. I have had Parkinsons since 2011 and nothing else I have done has had the effect that Mannitol has. It has actually turned back the clock. I wrote earlier about how it gave me back my swinging arms, got more facial expression, can write large letters and its legible. I am less stiff and overall feel better. I recently realized that my taste was back. I can’t guarantee that it will continue to work for ever or for everyone.
      But this is as close to reverting the symptoms back as I have heard. Best wishes to anyone who tries it.

      • #21980
        Melissa Harrison
        Participant

        Can you take mannitol while taking carbidopa/levidopa?

        • #22005
          Don Bell
          Participant

          There are no reports I’ve seen to suggest any problems with mannitol and carbidopa/levidopa.  A few patients have indigestion with higher doses.  I am taking 1 Tablespoon bid.

      • #21987
        Jan
        Participant

        Would you mind sharing how much you take & which brand you use? I purchased some on Amazon probably a year ago & didn’t notice any change in my symptoms. I don’t recall how much I took or how long I took it, but I think I tried it for at least a month.

         

    • #21959
      Charles H Levin
      Participant

      I started taking it in June and it seems like I’m having some positive results. Mostly I notice less problems with “slowness of muscle movement” … Everything from walking up a flight of steps to typing … Possibly less brain fog, too …

      My tremor, still mild, in my left hand remains unchanged … and it’s starting to appear every so slightly in my right hand …

      Based on what others have shared here about Mannitol, it apparently helps different people with different symptoms …

      I take two teaspoons in the morning with a large glass of water … I was taking 2 1/2 teaspoons, but it seemed like it was making me a big gassy … backing down to 2 seems to have helped there …

      Curious to hear what others’ experiences have been …

      cl

    • #21960
      Robert Li
      Participant

      Wow, it is great to hear that some people are having positive responses to mannitol!!  What can I say but congratulations on finding something that worked!

      It would make sense that the effects of mannitol would be different for different people, because alpha-synuclein (misfolded proteins, the basis of Parkinson’s Disease), can start in different places in the brain and spread from there.  The mannitol helps break down misfolded protein clumps.

      The main reason I also take vitamin D is to help keep the misfolded protein clumps from spreading. Proper levels of vitamin D helps expel excess manganese (not to be confused with magnesium).  Excess manganese has been found to promote the transmission of alpha-synuclein from neuron to neuron: https://pubmed.ncbi.nlm.nih.gov/30862700/ Notably, excess manganese has been implicated in manganese-induced Parkinsonism.

      You can’t eliminate manganese from your diet, because it is a necessary nutrient.  However, vitamin D can help bring it back under normal bodily regulation.  I am checking now with my doctor to see if there is an accurate mail-in “drop of blood” vitamin D test.

    • #21965
      Gwendoline Jakins
      Participant

      Mannitol is not used as a sweetener in that way. It’s used to produce diabetic foods by manufacturers, chefs etc.

      I sourced mannitol from a wholesaler here in Australia, who imports it for that purpose. It’s the Sosa brand, out of Spain. If you can source it, you will find it much cheaper than the supplement suppliers, as in we pay A$17 for 500gr. Some members have ordered it direct from the company.

      My husband has been taking it for 18 months. It had an amazing effect. He was suffering from extreme apathy. That disappeared very quickly, along with other symptoms. He voice grew stronger, his PD mask reduced, his cough disappeared and much more. More recently it’s not working as well. I’m not sure where to go from here. He has been taking 1tbs. a day in coffee. That was the dose initially recommended in the research.

      Gwendoline

    • #21971
      Don Bell
      Participant

      I’ve been taking 1 tablespoon of mannitol from Amazon twice per day for a year and my left arm shaking has improved significantly and my voice has improved (stronger) a small amount.  To just remain stable when suffering a progressive disease is an improvement.

    • #21972
      Kate Rodrigues
      Participant

      Bought mannitol from Amazon made in israel. Took it eveyday for a month and got gastric distress. Did NOT relieve any Parkinsons symptoms. I am heartbroken because i had heard and read so many positive results. Consider yourself blessed if it helps you!!!?

    • #21977
      Thomas Rutschman
      Participant

      To Kate I would say that with one month of Mannitol you have hardly given it a chance to work. Try to find a dosage you can handle and stick it out a bit longer. Good luck!

    • #21982
      Beth T Browne
      Participant

      Hi.
      I have been taking is for around 6 to 8 months. I only take 1 tsp in my coffee every morning. I think it is helping with my tremors for one. I still have them. More in my right hand, but they are better for sure.

      I also have more energy. Not as tired in the afternoon, although there are some times I might feel more tired. I try to keep going so I will sleep better.

      Beth

    • #21991
      Lee
      Participant

      I88uuuuu=-

    • #21993
      Robert Li
      Participant

      Hi All, Thank you for the responses.  I did some more research and talked with a metals toxicity researcher about it also.

      Mannitol is not a replacement for C/L.  However, it is believed to break down clumps of misfolded proteins called Lewy Bodies that are believed to be the cause of PD.  In that sense, if it is effective, then the need for C/L would be reduced.  That would be huge positive in many ways.

      Mannitol causes gas because it is a “sugar alcohol” that is not fully absorbed.  So some of it is digested by gut bacteria.  This may affect your biome which could be positive or negative depending on the prevalence of various bacteria in your gut.   The only way to know is to try it. In particular, people with PD are often found to be low in butyrate production from gut bacteria.  If this is too technical, just remember that the gas production is normal.  Maybe try smaller doses spread throughout the day, or eat with food?

      A 6 ounce (largish) serving of cauliflower contains roughly 5g mannitol!  This is the recommended dose on my Mannitol, up to 4x per day.  5g is exactly how much I’m taking per day.  Maybe the mannitol content is why cauliflower gives some people gas!  Cauliflower also contains other beneficial substances, so please consider adding these “whole foods” to your diet whenever possible.  Button mushrooms are also very high in mannitol.  Sweet potatoes are much lower in mannitol but has beta carotene and other important antioxidants so I eat one at least every other day.

      Kate, you may want to make sure you have a solid diet with both protein and whole plant foods, and optimal serum vitamin D levels because from my research mannitol is just one part of the picture.

      Good luck to you all.  Progress starts with one step at a time!

    • #22008
      Chris Guss
      Participant

      In response to the previous questions about mannitol dosage, the CliniCrowd website offered the following suggested dosages:

      ~20g per day. Above 20g per day, it may have a laxative effect

      Their film, My Disease, Our Revolution (2020), was available online here:

      https://tubitv.com/movies/591127/my-disease-our-revolution

      Ally also interviewed them last year. Here’s the youtube link: Interview with Dr. Daniel Segal and Amir Sadeh About Mannitol, a Potential Parkinson’s Treatment – YouTube

      One of my favorite moments is when, Dani says something to the effect that We know that Parkinson’s starts in the body maybe 20 years before detection, so don’t call me up after a couple of days to tell me that Mannitol doesn’t work! Give it at least 6 months. CliniCrowd was originally set up as a website to track your progress, but I don’t believe that the site is currently maintained.

      I currently take 10 gm each morning in my tea and have for about 90 days so far.

      Good luck to you all.

    • #22014
      Charles H Levin
      Participant

      All …

      Here’s an interesting update on Mannitol and PD … As posted here, I, too, started using it in June and noticed (after about three or so weeks) a recognizable improvement … particularly in the slowness of muscle movement.

      I asked my neurologist about it a year ago and he dismissed it without offering an explanation. I just had my six-month checkup last week and I told him I was using it. He explained to me that Mannitol is likely working due to “Placebo Effect” — the deep belief that something will work so it does.

      What’s remarkable here is that the Placebo Effect is quite prominent in PD because it involves the release of substantial amounts of dopamine. So how could it not be beneficial? (It’s also the reason my numerous drug studies in PD fail, he said … so there’s that, too.)

      That all said, I told him I was going to continue to take it and he was cool with that. After all, it’s not harmful and the worst that can happen if you take too much is you may go to the bathroom a lot more than you’d care for. But for the moment, it’s clearly another source of dopamine … for a bit of time. It will be interesting, however, to see how long this lasts now that I know how it works ….

      See this link from PubMed …. https://pubmed.ncbi.nlm.nih.gov/17017561/

      cl

    • #22025
      Robert Li
      Participant

      Gwendoline, ever since you mentioned that mannitol is used as a diabetic sweetener in baking, I have been thinking about how people with PD could use this as an advantage.

      Cocoa appears to help protect dopamine-producing neurons… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3575938/  However, sugars in chocolate will feed gut bacteria and mess up the microbiome.  So I’ve been limiting my chocolate intake.

      Now I’m looking for mannitol-sweetened chocolate, but I can’t find any.  I think it was introduced for diabetics, but due to the gassiness issue, did not sell well.  Now other sugar alcohols like maltitol or erythritol  seem to be more common in chocolates.

      Anyone have ideas for a mannitol based chocolate treat?

      • #22041
        Chris Guss
        Participant

        Robert, Any Keto chocolate recipe will allow for the inclusion of mannitol as the sole or partial sweetner. Keto Nutella is a pretty fun and simple starting recipe.

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