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#1 | ||
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New Member
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How is it going with the mannitol experiment? Would love to hear an update. Also do you know whether Don claims to know others who had success with mannitol? many thanks, GreyWolf |
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#2 | ||
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Junior Member
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Just finished my supply..did not notice any positive results. Japhl |
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"Thanks for this!" says: | anagirl (08-02-2016) |
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#3 | ||
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#4 | ||
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Member
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There is now an informal "trial" of mannitol for PD, being run via a website in Israel. Anyone with PD can take part. The "trial" has been running for about 3 months and they have about 800 participants so far.
They have structured the website such that you get to see the dosage recommendations after you complete an initial survey. I joined about 3 weeks ago. I now add 1 level tablespoon of mannitol to my morning coffee, and fill out an online survey once a month. At this stage I plan to hang in there for at least 6 months, maybe a year (the original researchers gave mannitol to fruit flies for about a month before retesting them, and it was 4 months for the mice). JustCloud-IT download page (hat tip to Ranico at HU for the link) |
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"Thanks for this!" says: | eds195 (12-13-2016) |
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#5 | ||
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Member
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I hope mannitol works for you. I tried it for 2 months with no change. Maybe I didn't go long enough. Please keep us informed how you do! Some of the folks on the website have been taking Mannitol since April. Where can you see the results of the trial? Last edited by zanpar321; 12-13-2016 at 09:45 AM. |
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#6 | ||
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Member
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The CliniCrowd website contains comments from people who have been taking mannitol since April, but the website itself was only launched about 3 months ago.
On the question of when some initial results will be available, about 3 weeks ago Ranico at HU said the following: "We will present the data when it is statistically significant and when we finish the user interface. We expect that to happen in 3-4 month ..." I found the following information on the PD FAQ page on the CliniCrowd website: "According to some patients reports so-far: - After 18-30 days with Mannitol they feel a change; - 30-60 some observed a slight decrease in symptom improvements and even some regression; - After 60 days they report steady improvement." |
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"Thanks for this!" says: |
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#7 | ||
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Member
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I've now been taking mannitol for 6 months. I've also been taking N-Acetyl-Cysteine (NAC) for 3 months. I've also been doing 40 mins of high-cadence cycling every day for more than 12 months.
Things have been going really well for the past few months. How much of this can be attributed to mannitol, and how much to NAC (or the combination of both!), is not clear to me. Mannitol might also be neuroprotective. This is something that is best measured over a period of years, rather than a period of months. Putting a tablespoon of mannitol in my morning coffee each day is not very difficult, so I plan to keep going with the trial at least until my current stock of mannitol is used up (late next year). |
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