To Mannitol or not to Mannitol?

[Coling]

Like many of our community, you would have watched the mannitol promotion video of December 2016

youtube.com/watch?v=0MfO3Wy...(Not working as expected?)

This gives the impression that Mannitol can at least reduce and at best reverse symptoms. I have gone out and bought myself a pack and just started using it. I am happy to let you know results in say 2 months but was wondering if anyone else has already been down this track and what were the results?

My sceptical mind tells me that something is usually presented in this light because a researcher or merchant wants to attract funding, on the other hand, we have nothing to lose. Your thoughts and experiences are most welcome.

[faridaro]

I've been taking 2 tsp of Mannitol daily (according to Clinicrowd weight chart) for 2 months and have not noticed any difference. Lately, I've been reading about widespread B12 deficiency which can cause neurological symptoms and decided to try sublingual B12 for better absorption. Was surprised to find out that some of sublingual supplements have mannitol as a sweetener - could be a great combination!

[munchybunch in reply to faridaro]

What is sublingual b12? Where do you get it pls?

[faridaro in reply to munchybunch]

I buy mine online, but it's available at health food stores.

[faridaro in reply to munchybunch]

Sublingual B12 was meant to dissolve under the tongue to bypass digestive system for better absorption.

[camper1 in reply to faridaro]

I’m B12 deficient and took injections for a few years and then switched to the sublingual. I find that methocobolomin works better then cynocobolomin for me and also bought on amazon.

[faridaro in reply to camper1]

Yes, methylcobalamin is supposed to have better bioavailability and that's what I've been taking as well.

[KERRINGTON in reply to faridaro]

Hi ! Do you think mannitol has helped you so far ? Thanks

[jeffreyn]

I think that the CliniCrowd people over-hyped Mannitol in order to attract participants, and they are now paying the price. Many people tried Mannitol for a few months, and then stopped taking it when they noticed no improvement in symptoms.

Hopefully there are still a few hundred of us around the world who are still taking Mannitol daily, and completing the survey monthly.

Hopefully this will provide sufficient data for the CliniCrowd people to feel confident enough to release some initial results (early next year?).

[Xenos in reply to jeffreyn]

I totally agree with this.

Beginning my sixth month...

[jeffreyn in reply to Xenos]

Beginning my eighth.

I'm planning to continue for at least another year.

[KERRINGTON in reply to jeffreyn]

Hi ! I'm wondering how you've fared with mannitol one year later..thanks,

[jeffreyn in reply to KERRINGTON]

Everything is continuing to go really well, but as I always say, I can't tell whether it's the mannitol, the NAC, the high-cadence cycling, or some combination of these.

A few months ago my sense of smell started to return. Quite a few people have had this experience shortly after starting mannitol. If it is the mannitol in my case, then it's interesting that it took a year and a half before it happened!

[KERRINGTON in reply to jeffreyn]

Funny, I never lost my sense of smell...thanks for the update.

[JANVAN in reply to jeffreyn]

Hi, are the results of the Mannitol-survey already publiced ??

[jeffreyn in reply to JANVAN]

CliniCrowd have recently released a new webinar video (36 minutes). Topics covered include background information and first results.

youtu.be/muwDFV44E3U(Not working as expected?)

[alexask]

It does appear to have improved my condition, sleep etc. It certainly resolves constipation. I think it works best combined with something else such as N Acetyl L Cysteine. It also probably depends on they type of parkinson's you have!

[Beckey]

What a coinkidink! I was just asking the folks at the health food store about it, then came home to do some goo-goo-googly research. I was confused because it looks like mannitol is given via injection ... ?

[alexask in reply to Beckey]

Mannitol can be taken orally. It is a white powder - and has a sweet taste. I put it in Coffee with a couple of teaspoons of coconut oil.

Don't put N Acetyl L Cysteine in there though - it curdles the whole thing and make it tastes rank.

[Xenos in reply to Beckey]

Mannitol administered through IV is for totally different purpose. It's very high in dosage and for very short term.

We are talking small daily doses, taken orally, just like plain sugar in coffee, tea, yogurt...

[jeffreyn in reply to Beckey]

Hi Beckey,

To add further to what Xenos said, here is what park_bear wrote in another thread a few months ago:

" ... mannitol is infused via IV in massive quantities to prevent brain swelling in the event of a stroke. As such it can cause kidney failure due to overload trying to get rid of it. This of course is quite different than small quantities taken by mouth."

healthunlocked.com/parkinso...

Jeff

[Xenos]

Two month is not significant, IMHO.

[Hidden]

Mom just finished her first month of taking it. I have noticed some small improvements like she has stood up for me several times when usually I have to pull her up. She is incontinent so it has been a struggle to change her but she is starting to open her legs for me. So we still have ups and downs. But I will take any improvements I can get. I think it’s important to signup and register with Clinicrowd to make sure you are taking the right dose for your body weight. But I have spent so much money trying to help my Mom and changing her diet. This is the cheapest thing I’ve bought for her to help her. So I will continue as it is too early anyways to tell. I bought it through Amazon. I’m taking it too. It is completely safe as long as you are taking the right amount for your body weight.

[munchybunch in reply to Hidden]

Any more updates pls?

[munchybunch]

How are you feeling six months down the track? Is it worth trying?

[Coling]

I am feeling fine but cant put it down to mannitol, however not giving up on it yet and i have ordered another half kilo

[ahavasavta]

On 1/3/018, I have started my journey with sinement and mannitol. It taste really good in my peppermint tea. Sine i normallt have problems with new meds, i wil go easy at first. I will use 1 tbsp once a day for 3 weeks. I am excited to try a new product that has come from Israel.

[answerseeker]

My husband has been taking Mannitol for just about a year and along with a few other changes, his symptoms seem to have reversed to where they were 5+ years ago. (He is 81 and was diagnosed with PD in the summer of 2004. He still works a 30 hour week.)

If you are available on Sunday at noon EST USA I wanted to invite you to participate in a webinar and listen to CliniCrowd's CEO discuss how Mannitol studies came about and the results of people with PD who are taking Mannitol and filling out the clinicrowd survey at least over 4 months. I was informed about this by Gila Madjar [mailto:[e-mail]] who is now available to answer questions of people in US

When: Noon ET, Sunday, March 4th

Where: clinicrowd.easywebinar.live...

register on the link above and join us via your computer.

You can share the link with anyone that might be interested.

[ion_ion in reply to answerseeker]

Your husband is 81 and is working 30 hours a week after 14 years of PD and this because of Manitol? It is hard to believe! Sounds more like an ad.

[JANVAN in reply to answerseeker]

Hi, can one still follow the Webinar about Mannitol. ??

[Jumex2017]

How much should one start with and do u eat it straight!? Also as it’s sugar based can diabetics take it?

[Jumex2017]

We gave done it for 1 month . No difference