Clinicrowd - new video, new statistics about Mannitol

[parkie13]

youtu.be/S2yTOKvhnp8(Not working as expected?)

[cshamb]

I have the mannitol and want to start taking it. I watched the video and would to start taking Mannitol. I think they said 1 tsp morning and evening is this the correct dosage to start. I also take mucuna

[parkie13 in reply to cshamb]

I have not been taking it lately. If I remember correctly it's 1 tbsp for 140 lb. I would try it, some people had good results with it.

[cshamb in reply to parkie13]

Any reason you are not taking it now. And would that be once a day. Thank you for your help.

[parkie13 in reply to cshamb]

It didn't seem like it helpef at all so after about 4 months I stopped some of the fruit flies never climbed up the test tube I must be one of those fruit flies

[faridaro in reply to parkie13]

I also stopped Mannitol after 5 months due to daily headaches - not sure though if it was Rasagiline or Mannitol, but discontinued both just in case. Now that headaches are gone have to reconsider Mannitol, even though according to clinicrowd report it didn't seem to affect tremors, unless I missed something.

[Xenos in reply to cshamb]

Hello Cshamb, hello Parkie13,

If you sign up on the clinicrowd site, after the first questionnaire (10 min of your time) you are given access to the dosage page. It's clear and precise. I use a precise scale to take my 9 gr in my morning coffee.

Do not forget to answer the questionnaire once a month : it will not benefit only you, but the whole community.

[Astra7 in reply to cshamb]

I have built up to a heaped tsp in my coffee in the morning. I think it's working. I've been taking for around 3 or 4 months.

It's worth a try.

[Xenos in reply to Astra7]

Let me add that there is an ideal dose : if you read the medical publication by D. Segal it was clear that too low and too high concentration both lead to inefficiency of mannitol on alpha synuclein clumps.

[parkie13 in reply to Xenos]

Could you remind me of the ideal dose how many grams? Thanks

[Xenos in reply to parkie13]

It all depends on your body weight. When you fill up the questionnaire for the first time, you are given access to a table giving their best guess relative to your weight.

I weight 68 kg and take 9 g daily.

[munchybunch in reply to Astra7]

What changes did you notice pls and how long did it take?

[outoftheboxxinc in reply to munchybunch]

I have been taking it for about 2 months and have had some great improvements - mostly withy fine motor skills. Putting the dog's leash on used to take 2 hands - not now. Putting the key in the lock and opening the door is so much better. Typing is getting better. Handwriting is getting better. Tying shoes is getting better. My energy is better. What has not been improving much is my tremor. But that's ok if these current improvements are all I get - I'll happily take them!

[munchybunch in reply to outoftheboxxinc]

Thanks for that. Sounds like it’s worth trying. How much do u take a day pls

[outoftheboxxinc in reply to munchybunch]

I take a heaping teaspoon per day. (You may need to clarify that with a web search for what that looks like. I also bought it off of Amazon. It's $29 plus shipping US. it's listed on Amazon as PureBulk Mannitol, one kilo. (2.2 pounds)

[JANVAN in reply to outoftheboxxinc]

Hi, interesting !

And what else do you take : which supplements and which classical medication ??

Changing in that ??

[outoftheboxxinc in reply to JANVAN]

I take Sinamet (25/199) 6 times/day - every 2 1/2 hours (Have tried a number of traditional pd meds with poor results)

Amantadine 1 - 2x per day

Exelon patch daily

Multi-vitamins, vit b12, vit c , vit D plus calcium daily

Haven't really changed these.

[JANVAN in reply to outoftheboxxinc]

so, for a good understanding, you didn't change the medication before and after Mannitol ??

[outoftheboxxinc in reply to JANVAN]

Correct.

[JANVAN]

Hi interesting Video !!

Do you know where you can buy Mannitol from good, European (preferable German) Websites ??

And (of the topic, but just short) : do you use Mucuna ?? I am now using 2 weeks of high extract Mucuna and I could reduce my Sinemet from 4 to 3 (100/25)...?!?! I have to say , some moments I get a bit nervous, no tranquility...

Thanks for you post !!

Greetings from Switzerland !!

[alaynedellow in reply to JANVAN]

Try syncolein.com. They ship fromUS to me in france. Mannitol from here has ingredient added to cut the gas in stomach. Instructions included for doseage etc.

[JANVAN in reply to alaynedellow]

Merci beaucoup !!

Est-ce que je peux savoir si longtemps votre diagnose. ?

Et quelle autres chose vous faîsezcg

[alaynedellow in reply to JANVAN]

Sorry my french not very good. I dx in nov 2015 and i only take azilect and mannitol. Hope thats the right answer.

[parkie13]

Hi, I'm in the US so I'm sorry to say I have no idea. Do you have European eBay? I get a lot of stuff on our eBay.

[sunvox]

I respect Dr. Segal's opinion, but the idea that mannitol taken orally can be precisely dosed is not logical. IF mannitol is helping then the entire undigested molecule is getting to the brain where it can act as a chemical chaperone and clean out alpha-syn. This depends on individual intestinal permeability, meaning how much of the stuff passes through your stomach walls undigested and directly reaches the blood stream. Intestinal permeability is highly variable from person to person so there is no way Dr. Segal or CliniCrowd can know how much of a "dose" is entering the patients blood stream. It may be that people who more assiduously stuck to the protocol saw better results not because of the exact dosage but because they were more consistent in their approach or by being precise their body adapted to the diuretic impact and less of the mannitol was excreted. In any case, there is simply no basis for suggesting a "precise" dose.

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researchgate.net/publicatio...

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Also as I have said in previous posts on this topic, PwPD should pay attention here. Mannitol in theory acts by cleaning out alpha-syn and slows or stops progression. Mannitol can not repair damage already in the brain. If you are a person who does not "feel" results it may be that the damage to your body is already great, BUT this does not mean that mannitol isn't working to slow the progression of PD. Really it is almost impossible to know if mannitol is working to SLOW the progression unless there was a multi-decade study of thousands of patients. We know now mannitol works because some people are seeing results that can be identified. Personally I think 20 calories a day of a sugar substitute is worth taking everyday for the rest of my life just in case it MIGHT be slowing progression of my illness. (I have SCA1 not PD, but SCA1 is similar.)

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healthunlocked.com/ataxia-u....

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Joe in NY

[JANVAN in reply to sunvox]

Again very thanks Joe for your answer !

I tend to jump on everything new, but already so many people have used so many things, so it is better that I filtrate and follow there experiences.

So, I will order Mannitol, when it MIGHT slow the progression, it is worth. Because I still have to earn some money, I still have to work....

What I definitely experience is that Mucuna Pruriens works : I'm taking now about two weeks

"95%"Mucuna Extract, 450mg, 4-5 tablets a day and I could reduce my dose of Sinemet. I also notice some "overmovements">>> very little, but beeing self a therapist I feel it.

So, there's really something in it. I have to say, I also take about three weeks Thiamine HCL 2,5 gramms and also the chelator Irminix.....