Mannitol: Really amazing. Second day after... - Cure Parkinson's

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Mannitol

Getz profile image
Getz
52 Replies

Really amazing. Second day after taking mannitol I actually go off my backside and did some work on my bathroom to find where the leak from my shower was. Think this could be a wonderful supplement. Felt alert and motivated all day. Shall see how it goes for the rest of the week.

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Getz profile image
Getz
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52 Replies
Astra7 profile image
Astra7

I found it good but couldn’t get over the gas🙁🙁, so gave up.

LAJ12345 profile image
LAJ12345

How much are you taking?

Getz profile image
Getz in reply to LAJ12345

2 teaspoons 10ml in a breakfast smoothie.

Cindyross profile image
Cindyross

following

ForViolet profile image
ForViolet

I'm keeping this in mind as something to try after I get my husband's thiamine dose established. But, yeah, mannitol can cause a lot of gas in my experience.

Wonder what dose you are using Getz.

Getz profile image
Getz in reply to ForViolet

So far no gas for me. 2 teaspoons or 10ml.

alexask profile image
alexask

4 years so far. I only use about 3 grams - not even a whole teaspoon. Like everything works for some. Not others.

gwendolinej profile image
gwendolinej

Hi Getz, I'm so pleased for you. This is what happened with my husband. That was in late 2019. He's still doing well. Fingers crossed.

Gwendoline

Getz profile image
Getz in reply to gwendolinej

All thanks to you for providing me with the link. Is my dosage of 10ml enough?

I'm just feeling so much more alert and motivated. No 'gas' haha.

gwendolinej profile image
gwendolinej

I'd stick with that dose. When I got our pharmacist to check the research, he said the dose was 1tbs. and no more. They found more was detrimental apparently. We started on 1tbs, but maybe less would have done as well. Other members have found a very small amount has worked.

Getz profile image
Getz in reply to gwendolinej

Gwendoline things are getting better. I actually had my first 8 hour sleep for well over a year last night. Thank you for your info on mannitol.

gwendolinej profile image
gwendolinej in reply to Getz

So good. 👍

Leslim profile image
Leslim in reply to Getz

hi Getz, when do u take your mannitol?

Getz profile image
Getz in reply to Leslim

I am no expert and have little knowledge of this but I take Mannitol and L-serine as my first glass of water of the day. 10 mg of each. I also swallow a few pills.

Leslim profile image
Leslim in reply to Getz

Does L-Serine help or mannitol help you more for PD?

Getz profile image
Getz in reply to Leslim

Leslim, I wouldn't have a clue as since I have included mannitol I have not taken either by themselves since combining the two of them. They both have scientific reports.

au.iherb.com/blog/l-serine-...

parkinsonsdisease.net/resea...

Ozziedon profile image
Ozziedon

Is there a way to determine the correct dosage

faridaro profile image
faridaro in reply to Ozziedon

If you go to the Clinicrowd website and join registry they should provide information about appropriate dosage of mannitol for your weight. Here is the link:

clinicrowd.info/parkinsons/

pmh18623 profile image
pmh18623 in reply to faridaro

Unable to register on website to get mannitol dose information.. I get a page of text that is in a foreign language unknown to me.. Turkish maybe?

faridaro profile image
faridaro in reply to pmh18623

That was Hebrew - clinicrowd is Israeli website and has a choice of English, Hebrew and Spanish on the top line of the screen.

Try this link

clinicrowd.info/register/

pmh18623 profile image
pmh18623 in reply to faridaro

Thank you!

gwendolinej profile image
gwendolinej in reply to pmh18623

Hi there, have a look on the Syncolein site. That's where I got my info from initially ( thru a link on this site). Have a look at the video on the Syncolein site as well. It tells you how and where the research started, and the site will help with dose. I had our pharmacist check it out and he confirmed the dose and said that more is no advantage and possibly detrimental. Some on HealthUnlocked have found less has worked. We followed the instructions of 1tbs., but maybe less would have worked. We might add the L-Serine as well.

Let us know how it goes.

Gwendoline

Getz profile image
Getz

I wouldn't have a clue but apparently less is better and as we are all different I suppose its simply a matter of trial and error. Might be someone here that knows or maybe try a search.

Godiv profile image
Godiv

Do you mind my asking what brand you’re taking? Is that a powder? I’m interested in Minnetonka Ha ha I love the way my phone spelled mannitol, .... but I have kidney disease so I’d like to try just a tiny amount and I’m hoping maybe I could do that: control it with a Powdered supplement. I’m thinking that would be safer than using a capsule or something that’s already in pill form. Thanks so much.

Getz profile image
Getz in reply to Godiv

Hi Godiv. I'm in Australia and Gwendoline put me on to the Spanish brand Sosa

Godiv profile image
Godiv in reply to Getz

Thank you, Getz!

PDsux_10 profile image
PDsux_10 in reply to Getz

Hi Getz, I am in Australia as well, and I went to the sosa site, but there doesn't seem to be an option for purchasing. Can I ask how you go about buying this brand here? Thanks.

Cheers

Getz profile image
Getz in reply to PDsux_10

This is copied from Gwendoline's comment on another post. When I rang the Qld office I found I needed an ABN but then I found That Whitsunday Food Service could order it for me and it still didn't go up too much. $22.85 from memory. Good luck.

gwendolinej

19 days ago

Hi there, yes the supplier is Eustralis Food . They have a Queensland office..Eustralis Food Queensland. They are wholesalers, so you need to open an account and need an ABN (I used my daughter’s). It’s called Sosa Mannitol Powder500g. Cost $16.79. I’m sure they would post it to you. If you have a problem,let me know.

PDsux_10 profile image
PDsux_10 in reply to Getz

Thank you so much! I will definitely try to source some.

Cheers

gwendolinej profile image
gwendolinej in reply to Godiv

Hi there, as Getz said, he and I are using the Sosa brand. It's imported into. Australia by an Australian company and normally used as a diabetic sweetener in foods. Depending where you are, you can contact the company direct. I know others did this when I passed this information on: sosa.cat. It's very cheap.

Let's know how you get on. I'm so thankful to this site for telling us about it in the first place.

Gwendoline

Getz profile image
Getz in reply to gwendolinej

Mannitol appears to prevent or reduce the clumping of proteins in the brain, including alpha-synuclein. It has the ability to cross the blood-brain barrier. Clumped proteins are a hallmark characteristic of Parkinson’s disease.

parkinsonsdisease.net/resea...

Godiv profile image
Godiv in reply to gwendolinej

Thanks, Gwendoline! Will do : ).

Getz profile image
Getz in reply to gwendolinej

Gwendoline, from my recent reading it appears that mannitol and mucuna pruriens could well be a positive mixture for PD. Am going to try it to see what happens.

gwendolinej profile image
gwendolinej in reply to Getz

Am looking forward to your progress. My husband gets very little effect from levadopa (Madapar). He doesn't feel any difference, but the wearable (watch) PKG system indicates that the Madapar has some effect, but not as much as it should, and then not for very long. I wonder if the Mucana Pruriens would work any differently.

Getz profile image
Getz in reply to gwendolinej

In Australia I get my Mucuna Pruriens from Ayur Organics in Melbourne. It goes under the name Kapakachu.

Juliegrace profile image
Juliegrace in reply to Godiv

It is a powder. If you’re in the US you can buy it from Amazon or any number of other places that sell bulk supplements.

pdpatient profile image
pdpatient in reply to Juliegrace

Julie grace, Walmart online has a well priced 2.2 lbs brand as well. Amazon appears to have long standing inventories which are sourced from China

Juliegrace profile image
Juliegrace in reply to pdpatient

See my reply to Godiv below about purebulk.com.

Godiv profile image
Godiv in reply to Juliegrace

Okay, thanks so much. I always fuss over brands worried I'll get a bad one :0.

Juliegrace profile image
Juliegrace in reply to Godiv

I purchased mannitol and many other supplements from purebulk.com. They're located in Oregon. They offer different sizes, which I like and I have not had any issues with quality. Even though I mentioned Amazon, I like to avoid them whenever I can.

Godiv profile image
Godiv in reply to Juliegrace

OK thank you so much!

gwendolinej profile image
gwendolinej

Yep 🤣...our neurologist sent us reams of information on the research and the current trial in the US, most of which I didn’t really understand. This was after he saw Alan and was so amazed at his improvement.

I guess that’s where the company Syncolein that supplies a purpose manufactured Mannitol for PD got its name.

pdpatient profile image
pdpatient in reply to gwendolinej

Hi Gwendoline, has your husband tried Syncolein? I am wary of the brand because it is not pure Mannitol. They mix Levodopa into it.

gwendolinej profile image
gwendolinej in reply to pdpatient

Hi there again,

Hmmm, are you sure. I've taken it upon myself to ask them. I would have thought that, as levodopa is a prescription drug, and as their product is not approved as a medicine, they wouldn't be able to use it. Anyway, I await their reply and will let you know.

I didn't see any mention of it when I visited their site.

Gwendoline

gwendolinej profile image
gwendolinej in reply to pdpatient

Hi, just got a reply from Syncolein. No, there is no levodopa in Syncolein. It is made up of mannitol and alpha-galactosidase, a natural enzyme to control gas.

Juliegrace profile image
Juliegrace in reply to pdpatient

Syncolein lists the ingredients as mannitol and alpha-galactosidase which is a gas inhibitor. Where have you found that it contains levodopa?

pdpatient profile image
pdpatient in reply to Juliegrace

Apologies for the misunderstanding on my part, Juliegrace and Gwendoline. You both are right and I am/was plain wrong. Sorry for causing any alarm. Let me explain why I made the wrong assumption.

There are so many ”fake” products on the market today that pretend to be a natural alternative to levodopa, that the moment I see the words ”natural” and ”plant based” next to a main ingredient that proclaims a better alternative to prescription Levodopa, i stop reading further. What really happens is that these unscrupulous pushers mix Mucuna Pruriens in highly processed form and claim that it is all natural. The truth is that the active ingredient in Mucuna Pruriens is Levodopa which is molecularly identical to synthetic Levodopa.

Mucuna Pruriens in the natural form is truly superior to synthetic Levodopa according to a couple of studies that I am read. "Natural" in the sense of nothing else other than ground Mucuna seeds - unfiltered and mixed with nothing else. Unfortunately, the moment the Mucuna Pruriens is processed, it loses its advantages over synthetic Levodopa.

Many Parkinson's patients are unaware of this and some even take 99% processed, pure Mucuna Pruriens in the false hope that they have gained some advantage. I see that. as a waste of money because generic Levodopa is cheaper than the processed Mucuna Pruriens beans.

I agree that the product is not harmful. However, it's way overpriced. The alternatives that you both have been mentioning are far cheaper.

Juliegrace profile image
Juliegrace in reply to pdpatient

I agree with you about the processed, so-called “natural” mucuna.

in reply to pdpatient

"99% processed, pure Mucuna Pruriens in the false hope that they have gained some advantage"

To further your point: the 99% stuff is no closer to "mucuna" than 99% nicotine is "tobacco" or 99% caffeine is "coffee".

Consistent with what you have said, the studies I read (and it's been a while) about mucuna as a viable (and in some respects superior) alternative didn't use 99% levodopa, they used stuff that was much closer to the original plant, which I think was single digits in terms of the ldopa percentage. Which means it is more than 90 percent "other stuff", some of which is speculated to provide some benefit. Clearly, by taking the 99% ldopa powder, one won't be getting any of that other stuff or any benefits from it.

I have a packet of the 99% ldopa from nutrivita (which along eith Barlowe's is commonly touted as a natural alternative- both exist as highly refined powders) and it doesn't even mention mucuna at all (it does mention it on the website). I was a bit surprised by that. I don't know if that means anything or not.

pdpatient profile image
pdpatient in reply to

ChrisWF, this just shows how cynical the world is or how much the world doesn't know. Levodopa is a very potent drug. By that definition, Mucuna Pruriens in any form is no different than marijuana. So, how come MP is not regulated?

I believe in this so strongly that I often feel that this is probably illegal in the Middle East. One can get executed in some places if you show up with some poppyseeds for example.

My doctor was just wondering how come it is sold on Amazon😖

Masterka profile image
Masterka

Have been using it for more than a month, believes symptoms is gradually reducing, though still hoping for more to follow..

Getz profile image
Getz

After a heap more reading I have changed my dosage of mannitol and L-Serine. I now start the day with a glass of water containing 12g mannitol and 15g L-serine. I now include 15g L-serine in my lunch smoothie. Things seem to be travelling quite well and I am waiting for my coffee cherry concentrate which increases BDNF and therefore brain cells to arrive from Swansons.

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