Leaving No Stone Unturned: Giving Mannitol a Try

Jean Mellano avatar

by Jean Mellano |

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Since being diagnosed with Parkinson’s disease in 2015, I have left no stone unturned in testing out the latest and greatest of nonprescription solutions to ease my symptoms. In my view, some have had good press and showed a lot of promise.

Among the more popular supplements I tried without success are B. subtilis, high-dose vitamin B1, and Mucuna pruriens. I also considered trying butyric acid (butyrate).

But identifying dosages and brands for readily available, over-the-counter, “natural” solutions was frustrating. It became time-consuming and expensive and required too much trial and error.

One challenge of trying various supplements to treat Parkinson’s is that unless they’re verified by a third-party group, such as NSF or USP, there is no way of knowing whether they contain what they say, or whether they might be contaminated with heavy metals, bacteria, or pesticides before being sold. Even if a supplement has been certified to contain what’s on the label, the potential exists that it could still cause serious side effects.

I usually gave a particular remedy 3-4 months to see if it had any positive effects. If it noticeably alleviated any of my symptoms, I didn’t even care whether it was due to a placebo effect. That is how desperate I am to find a natural alternative for treating my disease. But in my case, I’ve always felt defeated.

Why did I try and fail with these nutriments?

Some treatments are accompanied by online testimonials from people with Parkinson’s who attest to the great symptom relief they have observed by taking them. However, I was not one of the lucky ones who saw consistent improvement in my quality of life.

Note that I emphasized the word “consistent.” As many with Parkinson’s can attest, sometimes we can have a good day and not know why. Is it because the weather is good? Is it because we slept well the night before? Could it be because we timed our medications perfectly with our meals? Or was it the effect of the “natural” remedy? Fill in the blank.

What is mannitol?

Mannitol, a sweetener, is approved as a food additive by the U.S. Food and Drug Administration, which has deemed it nontoxic. It’s also used in a clinical setting for other conditions.

Parkinson’s is believed to be caused by a protein, alpha-synuclein, which clumps and impacts dopamine-producing neurons (and other neurons later in the disease), and mannitol is believed to have the potential to inhibit aggregation of alpha-synuclein.

Why mannitol, and why now?

Just when I had sworn off trying out the latest nonmedication “cure” or successful treatment for Parkinson’s, a co-worker asked if I had tried mannitol. I had heard of it, but thought it was another overhyped solution for Parkinson’s relief; another opportunity to empty my wallet and once again smash my hopes of finding symptom relief.

However, several reasons have convinced me to take a chance on another nutriment:

  • Mannitol is readily available and inexpensive. Once registered for CliniCrowd (see below), a recommended dosage is provided.
  • A clinical trial in Israel is being funded by the Israeli Ministry of Science and Technology, not a pharmaceutical company. This trial came about due to the success of mannitol in treating fruit flies and mice with Parkinson’s-like attributes. Preliminary results are expected by the end of this year.
  • In 2016, CliniCrowd, an online registry, was created for people to share personal experiences of researched nutriments. CliniCrowd’s goal is to explore potential treatments that pharmaceutical companies might have no interest in investigating or promoting, such as mannitol.

CliniCrowd was established when its founders wanted to help a friend diagnosed with Parkinson’s. The friend began using mannitol and saw improvements in his symptoms. The founders wanted to share these experiences for the benefit of others.

This likely would have been of no interest to pharmaceutical companies, because it would not have been worth the time and effort to test nonpatentable, widely available “natural” remedies.

CliniCrowd published some results from their platform of registered users that look quite promising for using mannitol in the treatment of Parkinson’s.

“So what did I learn from the mannitol story?” asked the Hadassah Medical Center’s David Arkadir, MD, PhD, in a discussion published by the MDS SIC Blog. “That public and philanthropic support is crucial for testing the true potential of non-patentable substances; that enthusiastic individuals can advocate for trials; and that a bit of luck can always help, even for chemical substances.”

One more stone to unturn

I have yet to see anything definitive offered by pharmaceutical companies to cure or slow the progression of Parkinson’s. Most of what is newly available or on the horizon are drugs to treat symptoms. Based on feedback from the CliniCrowd results, mannitol looks like it might have promise, both in terms of relieving symptoms and possibly slowing progression.

Rather than wait for the trial to end, and after I consult with my neurologist, I may take mannitol to see what it might do for me. Hopefully, in six months, I can report some positive results.

Keep in mind this column is not meant as medical advice, but rather a source of information. Discuss any treatment options with your healthcare providers before trying something new.

“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.” –William Arthur Ward

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Annie Burnside avatar

Annie Burnside

What dose to take of Mannitol to see any improvement?
Thank you for your answer

Reply
Jean Mellano avatar

Jean Mellano

I only just started a week ago. You need to register at Clinicrowd.info to get access to dosages based on weight

Reply
Larry P avatar

Larry P

Hello Jean
and Happy New year.

I remember reading this article back in July of last year and when I just read the article on Parkinson’s News Today / January 5, 2021 / with the top 10 stories of 2020 I wanted to reach out to you to find out if it has improved any of your
symptoms. With Exenatide, NLY01 trials going on now and Mannitol
there is definitely a diabetes supplement connection on the possibility of SLOWING
the progression of our disease. I would be happy with something to slow the progression because I know the cure is a long away off.

Larry

Reply
Jean Mellano avatar

Jean Mellano

hi larry, happy new year to you as well. unfortunately, after 6 months on mannitol, i saw no improvement. however, that doesnt necessarily mean it doesnt work, it just means it didnt work for me. i am all for trying non invasive, non pharma based solutions for slowing progression or allevating symptons.

Reply
Dan avatar

Dan

Here's a response I received from posting a Mannitol query on a Reddit PD group. Nonetheless I've ordered some.

"I had about a dozen friends with Parkinson's who got on the Mannitol bandwagon.

Most dropped out after a week.

Others after a month.

One made it three months, but never felt it did anything for them. They were not yet on medication but started levodopa a year later.

The common theme was issues with IBS, bloating, and extra farts! One commented "Dead god, those were not farts!"

Small group, not a controlled study, but everyone was "hey this might help". Oops."

Reply
Jean Mellano avatar

Jean Mellano

Hi dan

Thanks for this feedback. One thing I know for sure, everyone reacts differently to different therapies, whether it is prescription meds or an alternative treatment.

I am also guilty of not giving a possible remedy enough time to work. I plan to stick with mannitol for a minimum of 4 months, maybe 6

There are also so many variables that affect our symptoms, weather, stress, lack of sleep, diet, etc. it is difficult to say what works. I wish you luck and I hope to have a success story to write I. 6 months

Reply
Aaron avatar

Aaron

Hi Jean
My understanding on the Mannitol is that it hinders and possibly destroys the harmful Alpha-Synuclein in our bodies, which would otherwise 'clump' up around healthy neurons that produce dopamine neurotransmitter. Once we loose the health neurons we don't get them back. However, there might be some benefit if people with PD take this substance in the early stages of the disease. Finally, if the Mannitol helps we may not feel any improvement, yet our brain cells are being protected to some degree which is potentially beneficial. In other words the progression may be slowed. The fact that the Israeli government is funding some research in this is encouraging since this substance is not a designer drug.
Aaron

Reply
Jean Mellano avatar

Jean Mellano

I agree Aaron. By nature of the fact that Israeli government is funding some research is a big plus. I have been taking it for over 3 months and see no change, although I feel as though I am progressing quickly

Reply
Denis Drew avatar

Denis Drew

Bydureon, a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson's in its tracks -- results expected 2023. Testing -- mice, open label, double blind -- has been going on for 10 years and it has been positive every time.
https://scienceofparkinsons.com/2018/06/13/exenatide/

I have found some symptom relief (don't have very bad case) with Tumeric & black pepper (pepper makes it bioavailable) -- recommended by a doctor.

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson's patients are supposed to be insulin resistant. I read somewhere that IR may be treated with Bydureon (Exanatide) but I can't now find the link. Just something that might get us one step closer to Bydureon.
https://scienceofparkinsons.com/2018/06/13/exenatide/
https://www.cureparkinsons.org.uk/news/glp1meeting

PS. I took Bydureon for five years before going into remission on Type 2 Diabetes. Funny if it helped me with both.

Reply
Jean Mellano avatar

Jean Mellano

Dennis, thank you so much for posting this info. it is always good to know alternatives

Reply
Janice Lokken avatar

Janice Lokken

I registered on CliniCrowd & ordered some Mannitol yesterday & plan to give it a try as well.

Reply
Jean Mellano avatar

Jean Mellano

good luck to you Janice. I hope it works out for you...

Reply
Dennis Hayes avatar

Dennis Hayes

Can you not buy mannitol in the store?

Reply
Jean Mellano avatar

Jean Mellano

Yes, Mannitol is available over the counter, you can also order from amazon.

Reply
Isabelle Puente avatar

Isabelle Puente

I am interested in registration

Reply
Jean Mellano avatar

Jean Mellano

You can register at this link; https://clinicrowd.info/parkinsons-new/

https://parkinsonsnewstoday.com/ Is not affiliated wuth.clinicrowd and all issues with registration need to go through their website support/help

Reply
Roger avatar

Roger

Hi Jean. Thanks so much for the information on Mannitol. How are you doing since you started taking it? Have you seen any improvements yet? I registered at the Clinicrowd yesterday and I’m still waiting for the confirmation email. Thanks again.

Reply
Jean Mellano avatar

Jean Mellano

Hi roger, I am still using it, 2 tsp. Per day , no improvements :-(. I seem to be ‘symptom improvement’ resistant. Whether it is Rx or supplements... I wish u luck. Plz don’t let my lack of symptom improvement deter you from trying..

Reply
amy avatar

amy

@Jean Mellano
Did you notice negative side effects while taking it? I'm sorry you aren't seeing any results.

Reply
Jean Mellano avatar

Jean Mellano

Hi Amy. No side effects other than gas which seems to have subsided..are you using it?

Reply
E.M. avatar

E.M.

I"m glad to have found this site since the "clinicrowd.com" seems to have disappeared from the web.
Do you know anything about its disappearance?
As to Mannitol: I have been taking a daily dose of 10 grams since June 2017 (3 1/2 years). Perhaps I'm benefitting from the placebo effect, but I do feel that it has been beneficial for me. My sense of smell returned slowly and though not what it once was, I CAN smell. My bowels function normally and regularly, something that was problematic before I started taking mannitol. I have not had a problem with flatulence. I still continue with my prescribed PD medicines (Sinemet and Azilect) but my dosages have remained stable and my doctor is satisfied that my condition, while not recognizably improved, has not deteriorated.
Knowing that a cure for PD is not just around the corner, anything that will slow down the "inevitable" deterioration is well worth the small investment in mannitol.

Reply
Jean Mellano avatar

Jean Mellano

Hi E,M,

It is .info, not .com I just went to https://clinicrowd.info/ and it is there. I was trying to read my med/supplement daily log and I couldnt understand my illegible handwriting LOL. I believe I took 2 tsp. of mannitol/day for about 4 months and I did NOT have any changes in my symptoms so I stopped. It seems as though you have found some relief in your symptoms with mannitol and I am happy for you. I am sure you have heard this before, but some treatments work for some but not for others. I wish you continued success with mannitol.

Reply
James avatar

James

I'm relatively new to Parkinson's, but every so often I spend some time searching Google for PD remedies. Today I just came across the multiple discussions about mannitol. One article I read said that mannitol should be taken intravenously rather than orally. Has anyone else heard this?

Reply
Jean Mellano avatar

Jean Mellano

Hi James
I am not sure if you will get a response to yout question here, but you might try the forum on this website where there is more interaction among users. https://parkinsonsnewstoday.com/forums/forums/topic-tag/mannitol/

Reply
Beth Pettibone avatar

Beth Pettibone

I would not discontinue the Mannitol yet until you have tried a more appropriate dose of at least 2 tsp. twice per day. I got this dosage from a video I saw on Cliniccrowd by a man who started on a tiny dose of 1 tsp, once per day, and didn't notice results until he increased the dose to 4 tsp divided in half, twice per day.

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