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.
Mannitol: Really amazing. Second day after... - Cure Parkinson's
Mannitol
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Getz
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I found it good but couldn’t get over the gas🙁🙁, so gave up.
following
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.
4 years so far. I only use about 3 grams - not even a whole teaspoon. Like everything works for some. Not others.
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
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.
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.
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.
So good. 👍
hi Getz, when do u take your mannitol?
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.
Does L-Serine help or mannitol help you more for PD?
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.
Is there a way to determine the correct dosage
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:
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?
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
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
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.
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.
Hi Godiv. I'm in Australia and Gwendoline put me on to the Spanish brand Sosa
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
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.
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
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.
Thanks, Gwendoline! Will do : ).
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.
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.
In Australia I get my Mucuna Pruriens from Ayur Organics in Melbourne. It goes under the name Kapakachu.
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.
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
See my reply to Godiv below about purebulk.com.
Okay, thanks so much. I always fuss over brands worried I'll get a bad one :0.
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.
OK thank you so much!
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.
Hi Gwendoline, has your husband tried Syncolein? I am wary of the brand because it is not pure Mannitol. They mix Levodopa into it.
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
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.
Syncolein lists the ingredients as mannitol and alpha-galactosidase which is a gas inhibitor. Where have you found that it contains levodopa?
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.
I agree with you about the processed, so-called “natural” mucuna.
• in reply topdpatient
"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• 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😖
Have been using it for more than a month, believes symptoms is gradually reducing, though still hoping for more to follow..
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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