Parkinson’s News Forums Forums Parkinson’s Treatment Alternative Treatments The long-awaited mannitol interview!

  • jack-frost

    Member
    October 6, 2020 at 3:31 pm

    I watched the mannitol interview for an hour and was disappointed that the amount or dosage was asked for but not given. I think that Ally should insist that participants answer her questions. Does anyone know? Pleased comment. Jack

  • kathy-bettles

    Member
    October 7, 2020 at 5:41 pm

    Thanks so much for posting the interview! It was a great follow up to the excellent documentary.

    On Instagram Live Dr. Danny Segal gave an approximate dosage and Amir Sadeh said to join Clinicrowd to find out the proper amount. Dr. Segal also advised starting with small amounts and gradually increase the dosage.

     

  • bruce-jordan

    Member
    October 8, 2020 at 11:39 pm

    I’m with Jack – they know we want to know the dosage and they tease us but never deliver. Registration with Clinicrowd to get dosage info requires handing over all kinds of personal info to a foreign entity. I’m just not comfortable doing that. It doesn’t seem like a fair bargain. Has anyone gone through the hassle of registration to get the dosage recommendation?

  • jack-frost

    Member
    October 9, 2020 at 2:15 pm

    I tried to register with Clenicrowd but was discouraged. However, I do think it is a good cause. My information about dosage ranges form 10 grams to 20 grams depending on the person’s weight. Other information says “greater than 20 grams/day may cause a laxative effect. I weigh 180 pounds and I have been taking 20 g/d for two months. It may be more than Clenicrowd recommends but I am experiencing no negative effects. I put 20 g into a large cup of coffee, drink half for breakfast and warm up the remainder for lunch. I am also taking Ambroxol 120 mg/day which is undergoing clinical trials for PD in the UK. They would not give me any info on the dosage.

     

  • kathy-bettles

    Member
    October 9, 2020 at 2:26 pm

    Ally – is it okay if I tell the amount of mannitol my husband is taking? I would like to inform these folks but don’t want to do something not allowed on this forum. In the meantime I found an amount that sounded reasonable by poking around on the web and seeing what people were saying. HWP did start slowly and up the dose. Start slowly to see if your stomach has issues. My husband did not have any. He has been on mannitol for 6 weeks and we are so happy with the results. He is not falling (only 3 times since starting), his face has really softened, and I noticed his arms swinging when he walks. If this is placebo effect – bring it on!

    We would love to sign up with Clinicrowd but I think I must have done something wrong and am blocked from the website – maybe you have a contact there that would allow me to sign up for my husband? In the meantime I hope this reply is helpful.

     

  • kathy-bettles

    Member
    October 9, 2020 at 2:40 pm

    Jack – I saw your reply after I had posted.

    My hubby takes 10grams (1 tablespoon).

    Good luck and stay safe all.

     

    • kathy-bettles

      Member
      January 13, 2021 at 4:01 pm

      Just wanted to update. My husband (200 lbs) takes 1 tablespoon twice a day. He has been taking for almost 5 months. He has atypical PD, as he has no tremors and still has his sense of smell.  Mannitol has really worked for him. His balance is restored, his sleeping is much better, his face is no longer masked, his arms swing when he walks. His voice is somewhat better.  He still has issues associated with PD but overall this has been a miracle for us.

      Will try again to join Clinicrowd and contact Amir Sadeh to say thank you!

      • christina

        Member
        January 19, 2021 at 9:10 pm

        Kathy, Thank you so much for updating us on how mannitol is helping your husband!  It is such uplifting news!

        The more we all share what is and is not working for us, the more we can help each other!  (Moderator, please be assured that I most definitely understand that this is not prescriptive and thank you for your caution.)

        Thank you Kathy!  Keep us posted!

         

         

  • daniel-best

    Member
    October 9, 2020 at 3:14 pm

    I registered on their site and was recommended 10g/day for my 170lbs.  That’s about one big spoonful, goes great in a big mug of afternoon green tea.  It definitely causes some bloating but not bothersome.

  • jack-frost

    Member
    October 13, 2020 at 12:52 pm

    Hi Ally,

    Can you or anyone else help me log into Clinicrowd? I thought I had an account and tried to reset my password. When that failed, I tried to set up a new account but was locked out. I am not good with computers. Can anyone help? Clinicrowd is a good cause and I would like to be a part of it. Have been taking mannitol without being part of the study.

    Thanks,

    Jack Frost

  • ally

    Moderator
    October 13, 2020 at 4:39 pm

    Hi Jack, unfortunately you’re not the only person who has had some challenges logging in to the mannitol website. I did reach out to Amir awhile ago on behalf of some other folks in this community, but I haven’t heard back. I will write to him again and see if I can connect you with someone on their tech support team. Thanks! 🙂

  • ally

    Moderator
    October 13, 2020 at 4:43 pm

    Hi Kathy, I’m so sorry for the late reply but I think it can be helpful to share your husband’s experience as long as everyone in the community understands that it’s not meant to be prescriptive. None of us are doctors and even the CliniCrowd folks won’t provide a blanket dosage for everyone to take. I think that’s wise because everyone’s body is different and will respond differently to mannitol.

    I’m happy to hear that your husband is seeing some benefits as a result of taking mannitol, though! Please continue to keep us all posted as things progress.

    Also, I will follow-up with Amir from CliniCrowd about the login issue. I wonder if the CliniCrowd website is having problems because a few people in this community are running into the same issue!

  • jack-frost

    Member
    October 21, 2020 at 1:27 pm

    Hi Ally,

    I have tried everything and cannot login to CliniCrowd. Maybe they have all the participants they need. If that is the case I wish they would just say so.

    Jack Frost

  • jack-frost

    Member
    January 20, 2021 at 1:26 pm

    Hi Ally,

    I have given up trying to get in to CliniCrowd but have been taking mannitol. My question, if you or anyone reading this can help, is which brand of mannitol is CliniCrowd using? There are two listed on Amazon and the reviews on Amazon are mixed on which one is more pure. Thanks for your help.

    Jack Frost

    • kathy-bettles

      Member
      January 20, 2021 at 4:33 pm

      Hi Jack – my husband has used two different ones – and they both seem to work the same. One is made by a company that says it is very pure and says it is for Parkinsons. The other is half the price and says it is for sweetening. I hope this helps. They probably won’t let me give the brand names here.

  • daniel-best

    Member
    January 21, 2021 at 3:16 pm

    Hi Kathy,

    When you say they both “seem to work the same,”  does that imply your husband is seeing results from mannitol?

    • kathy-bettles

      Member
      January 22, 2021 at 9:53 am

      Hi Daniel – please look at my January 13 post that describes our experience with Mannitol. It has helped in so many ways. Just be sure and start with small amount and build up to avoid gastric response. I sincerely hope Mannitol helps you too!

       

       

  • ally

    Moderator
    January 21, 2021 at 4:34 pm

    Hi everyone, if anyone has any issues related to CliniCrowd, you can reach out to Amir Sadeh at amir.sadeh(at)gmail.com.

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