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    • #19489
      Ally
      Keymaster

      Hi everyone, the interview I did last month with Dr. Daniel Segal and Amir Sadeh of CliniCrowd about mannitol is now available on YouTube and SoundCloud!

      If you want to watch the interview, check out the YouTube link here.

      If you prefer to listen only, you can find the audio here. 

      Hope you enjoy! Please comment below if you have any ideas for future IG Live topics or guests. 🙂

    • #19495
      Jack Frost
      Participant

      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

    • #19498
      Kathy Bettles
      Participant

      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.

       

    • #19504
      Bruce Jordan
      Participant

      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?

    • #19511
      Jack Frost
      Participant

      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.

       

    • #19512
      Kathy Bettles
      Participant

      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.

       

    • #19513
      Kathy Bettles
      Participant

      Jack – I saw your reply after I had posted.

      My hubby takes 10grams (1 tablespoon).

      Good luck and stay safe all.

       

      • #20084
        Kathy Bettles
        Participant

        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!

        • #20107
          Christina
          Participant

          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!

           

           

    • #19514
      Daniel Best
      Participant

      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.

      • This reply was modified 4 months, 3 weeks ago by Daniel Best.
    • #19526
      Jack Frost
      Participant

      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

    • #19527
      Ally
      Keymaster

      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! 🙂

    • #19528
      Ally
      Keymaster

      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!

    • #19579
      Jack Frost
      Participant

      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

    • #20109
      Jack Frost
      Participant

      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

      • #20110
        Kathy Bettles
        Participant

        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.

    • #20114
      Daniel Best
      Participant

      Hi Kathy,

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

      • #20120
        Kathy Bettles
        Participant

        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!

         

         

    • #20117
      Ally
      Keymaster

      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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