For the past 2 days , i have desperately been trying to find a way to buy mannitol in france , or order through internet from france
CLINICROWD and PROF D SEGAL gave me 2 adresses
AMAZON : they no longer sell
ROQUETTE , the French company which manufactures mannitol
i asked them
they only sell to distributors in very big quantities , 10000 kgs and more
they cannot sell mannitol only a sweetener , not as medecine
I also tried Mannitolbalance : they only sell in the U S !!!
What can I do now ?
thank you for your help
Please join us! Once you submit the initial registry, you will be directed to a page that includes, among other information, a list of suppliers that were recommended by other participants like you. If you need more help, please contact us.
Started Mannitol 10-23-17 @ 1 tsp (2.5g) daily. Half in AM & half in PM along with Sinemet (3 daily 25/100). Looking into LDN (low dose naltrexone). Comments?
Last week we launched the CliniCrowd Secured Zone (reached via the profile page – under green button at top menu).
For now, it includes results from the INITIAL registries only – which is available to anyone in the community that filled out the initial and at least one FU registry.
In addition, we are currently working on designing the secured zone personal reports – available for those that filled out at least 4 months, this will enable:
1. A personal summary of all symptoms improvement/degradation
2. Personal changes per symptom per month/FU registry
3. Will enable comparative information to the rest of the community.
See sample: https://clinicrowd.info/wp-content/uploads/2017/10/TP.jpg
This is a huge task that we hope will be ready in a few months.
We can however already hint that we already see some statistics, such as :
88% regained sense of smell
70% improved and maintained quality of life
64% improve their energy and vitality level
Please be patient, this is our top priority !
Started Mannitol about one month ago. I feel a slight improvement. A bit less jittery. I started with a teaspoon per day, and after about 4 days up’d it to one tablespoon. I will be increasing that to 2 tablespoons per day starting tomorrow. One tblsp in a glass of water at lunch time, and the second with dinner.
I have Parkinson’s for 24 years. Diagnosed at age 40. I am very fortunate in that I am able to function and live a normal life. There are times that the shaking gets to me, but I try not to let it get me down. I keep always keep busy. I have difficulty sleeping, not because i shake, I just think too much. Haha.
I hope Mannitol helps us.
Hello Barbara and thank you for sharing. We are happy that you feel a slight improvement. Most important is to see if Mannitol will be able to stop the deterioration of the disease. Regarding your dose, we have a dose per weight calculation table, it appears once you submit the registry. Anyway, please note above 20g per day, it may have a laxative effect. Keep us updated and try not to think too much so you could sleep well 😉
How can I get Mannitol again from apc pure [ UK]. ?My patient has improve a lot in the last 4 months but now E BAY does not bring mannitol to our country Uruguay any more.Mannitol is not produced here in Uruguay.Thanks.
Hello Gonzalo, please note CliniCrowd do not sell or provide Mannitol. Participants reported they purchase from the following:
you can also check in Amazon
Regarding my previous post about experiencing significant dizziness after raising my Mannitol dose from 1 teaspoon to 2 teaspoons daily, I found the following cautionary advise about Mannitol on TheHealthSite.com, which I believe should be evaluated carefully by anyone with PD embarking on a trial of Mannitol:
“There are certain substances like mannitol whose presence in the fluid filtered by the kidney can cause additional water to come into the urine. Such substances are called osmotic diuretics. They increase urination and prevent the reabsorption of water, sodium and chloride.
Some of the side effects of diuretics include dehydration, increased thirst, frequent urination, weakness, fatigue, muscle cramps, blurred vision, dizziness, headache, etc. Men may have erection problems.
Diuretics should not be used in patients with known drug hypersensitivity
They are also contraindicated in patients with electrolyte imbalance.
They are ruled out in a patient with gout as they can aggravate the condition.
Drug interactions may occur with non-steroidal anti-inflammatory agents, corticosteroids, anticonvulsants, etc.
Diuretics must be used cautiously in people with renal dysfunction, diabetes or liver disease.
I increased my dose from 1 teaspoon/day to 2 teaspoons/day. I experienced significant additional dizziness following the increase. Since I have not noticed any improvement in my condition after several months on 1 teaspoon//day, and dizziness is an unwelcome side effect for me on 2 teaspoons/day, I am seriously considering getting off Mannitol entirely. Please advise. Many thanks.
Thank you Jed for sharing.
The known side effect using Mannitol as a nutriment, can be bloating.
Above 20gr (0.71 ounces) per day – may have a laxative effect.
Mannitol, in the required dose, is considered as safe.
FDA has determined Mannitol to be GRAS (Generally Recognized As Safe) as a food additive – see FDA link (click here) and EFSA link (click here).
Note that CliniCrowd does not provide medical advice. For medical advice, please consult your doctor.
This blog should be reserved for people with Parkinson’s to exchange ideas on mannitol’s efficacy for them.
I have a question that others can contribute. I have early stages parkinson’s and am wondering what dose and when to take mannitol.
So far I take ~8grams in morning and ~8grams at night.
What do others feel helps them most? Is it better to take it on an empty stomach or with food? What about 7grams three times a day? What about higher amount at one time and less at another time?
Thank you for the input, everyone.
I am taking Mannitol for almost a year now, and knows lots of others who takes it as well through a WhatsApp group I am running.
It is my understanding, based on my own experience as well as others’, that it is all about trial and error. Nobody knows for sure how it works and what is the best way to make it work. So we all try all sorts of combinations until each patient finds what is the best for them.
I started with 1 X 5g and slowly increased to 2 X 12g on empty stomach with just water and a few drops of Lemon and I take it with my medicine.
it is our mutual hope that once we reach a large enough data base, Clinicrowed will be able to analyze it on both group and individual levels and come up with some tested recommendations. So good luck don’t forget to take the survey…
Thank you eyalegozi for your reply.
One more question. Sorry 🙂
Since you take your meds with mannitol 12g two times a day, do you notice the effect of the other medications you take?
Mannitol is poorly absorbed in the GI tract and it may take fluid from outside into the GI tract. I am wondering if taking medications with mannitol would lead to poor absorption of those medications?
Thanks a lot
Hello again, NYC
I know that Mannitol is poorly absorbed, yet so far I do not think it had anything to do with the absorption of my other medications. But this is only my experience and I can see the logic in what you say. I am not a doctor so I can not give you any authorized answer, nor do i know if this issue has ever been studied at all in regards to PD.
However, it does make sense to me to maybe wait some time (say 1 hour?) between taking medications and taking Mannitol. All in all , until we have better evidence and understanding of all this – it is a matter of trial and error.
Thank you eyalegozi. It is fascinating to note that mannitol, a medication that speeds up the GI system, essentially speeds up the brain system into restoring itself. This connection between alpha synuclein in GI and brain seems to play a very important role. One of the hallmarks of Parkinson’s is constipation. It makes me wonder that if we develop something where we poop three times a day instead of once, maybe there would be no Parkinson’s and even GI cancer
This is day 122 (4 month) with 9 g Mannitol per day for me, taken in the morning in a cup of coffee.
Considering the very short half-life of Mannitol in the blood (100 min according to Wiki), I am tempted to take the whole 9 g twice a day, once in the morning, once in the evening – hence still remaining under 20g – in an attempt to get better efficiency.
I know this is not the recommended protocol, but… any thoughts ?
Hi Richard and thank you for sharing!
We appreciate your contribution to our community.
Please keep us updated (via the follow-up registry) how is it working for you.
We welcome everyone who is reading this blog to reply and share from their own experience.
I was quite surprised to see that all correspondences have included the name of those who wrote.
When I write to you, I would expect to remain anonymous to the reading public.
Hello, when you write a comment here – you choose the name that will be displayed.
You can choose a nickname or any name you want.
The email is required yet is not displayed.
Please forward the addresses where I can buy the Mannitol.Thanks, Tom Marsella
Excellent website and service, next month we will publish an article to Brazilian and Portuguese people about CliniCrowd.
Manuel – thank you for your offer, we will look into it
Hello, I started taking 1 tbls of mannitol on 2/2/17, exepernsing some dizziness during the day, I cut back to 1 teaspoon & took it before going to bed. I have noticed some slow progress such as a decrease in my tremors.
Thank you for sharing. Sounds good, please keep on reporting in the follow up registry at http://clinicrowd.info/pd-registry-follow-up/ – it is important to report any change in Mannitol dosage / Medication dosage and of course any change in symptoms
Have a nice weekend
I started on mannitol 4 years ago after reading the animal studies. I tried a variety of dosages and combinations until I found one that works and has put my Parkinson’s in remission. I created my own compound known as Syncolein. I added alpha-galactosidase to the mannitol to aid in digestion and reduce gas. You can receive more info at my website at http://www.syncolein.com/.
I’ve just ordered Mannitol from one of the address you supply. As you know Parkinson symptoms may vary from one day to another, making uneasy to send backwards that you can rely on. Anyway I’ll share my experience.
Before trying, I need an advice : is it necessary to reduce the dose of meds my neurologist prescribed ?
Thanks for your work.
Thank you for joining our registry.
Regarding your medication question – the answer is absolutely no.
We do give any of medical recommendation. Any change regarding your medication should be between you, your caregiver, or/and your physician.
However, if there is any reduction or increase of dose, or if you add a new medication or stop taking one – it is very important you report it in your monthly follow-up registry
Good luck !
התחלתי לקחת מניטול במינון מאוד נמוך ב-9/1/17 וכשבועיים לאחר מכן הגעתי למינון המומלץ לפי משקלי.
בסוף חודש דצמבר מצבי היה מאוד ירוד, והתחלתי בהעסקת עובדת ל-24 שעות. כיום אני עצמאית ברוב שעות היום, נוסעת בתחבורה ציבורית לבדי, ומסוגלת לתפקד כעקרת בית ולעבוד מעט במקצועי.שאלתי היא: האם יש מי שנוטל מניטול תקופה ארוכה ומרגיש שהשיפור הינו יציב?
אני מתלבטת לגבי המשך העסקת העובדת, כיוון שאין לי צורך בטיפול אישי או בליווי , אבל חוששת פן זהו גל חולף והמצב ידרדר שוב במהרה.
תודה על השיתוף
אנחנו מבינים את ההתלבטות
היינו שמחים לתת לך תשובה חד משמעית שכן אין שני אנשים עם פרקינסון שיש להם את אותם התסמינים ואותה יעילות של טיפולים. כנ”ל לגבי מניטול, הוא משפיע על כל אדם בצורה שונה.
ישנם אנשים המדווחים על שיפור לאורך זמן, ישנם אחרים שאצלם יש גלים גם אם המגמה החיובית הכללית נמשכת.
בפרקינסון אין יום אחד דומה למשנהו וגורמים סביבתיים שונים ואפילו מחלות חורף יכולות לגרום לנסיגה אף אם זמנית בסמפטומים.
אנחנו מקווים שמצבך ימשיך וישתפר או לפחות שישאר יציב, ושבכל מקרה תדווחי לנו על מצבך מידי חודש.
התחלתי לקחת מניטול בתחילת פברואר ואני מקווה לטוב. נטילת 10 גרם מהולים במים בפעם אחת בבוקר גרמה כאבי בטן.
כעת אני נוטל בוקר וערב 5 גרם מהולים בחצי מיכל של יוגורט פרוביוטי ובנוסף עם כמוסה אחת של אסידופילוס (מה שמכנים חיידקים טובים) ויש בהחלט מקל על כאבי הבטן.
נשמח אם תוכל למלא סקר ולעדכן אותו גם בצורת הלקיחה של המניטול, זה יוכל לעזור באנליזות שנעשה על הדאטה ולעזור לאחרים
I take 3 Tbs of Manitol per day in divided doses and notice no changes yet. I understand that the mechanism of action of manitol is to remove alpha synuklean over time. Therefor I do not expect immediate results. Is my assumption correct?
In the lab Mannitol prevented Alpha Synuclein from clumping in three experiments; test tube and of fruit flies brains and PD mice models, genetically engineered to express the PD human gene.
Scientists suggest that Mannitol appears to function as a chemical chaperone, meaning that the sweetener stabilizes proteins like Alpha Synuclein and prevents them from inappropriately clumping together. In support of this idea, feeding fruit flies with Mannitol improved their PD-like symptoms, allowing the flies to regain their normal movements.
Regarding experience of people who have tried mannitol for a while:
People living with Parkinson’s differ in symptoms and in effectiveness of treatments. Same for Mannitol, it affects each person differently.
Some participants report the following:
• After 18- 30 days with Mannitol they feel a change.
• others after 30-60 observed a slight decrease in symptom improvements and even some regression.
• However, after 90 days they report continuous improvement
Please note that this is preliminary data. There are participants that experience changes after a few months, and some that may not experience any change in symptoms, however, change can be expressed by no deterioration of their disease.
We need more participants to report on a monthly-basis, in order to reflect more solid data.
Those that will complete the registry on an ongoing basis will be able to enjoy the full advantage of the data collected; therefore we urge you and all to fill out the registry on a monthly basis
Disclaimer: CliniCrowd does not provide medical advice. For medical advice regarding how to manage your disease, please consult your physician.
Good Luck !
Thanks for sharing.
Kindly send us a note to
[email protected] so we can get some more details and better understand how to help.
All the best
hi, can we see anyone specifically in Israel about our progress. My husband who has the PD had a
horrific cold/flu that skewed any improvement he may have been having. However, I have continued to dilute
2 tbsp or 10 ml in his morning drink and the same amount in the evening.
He has reported to me that he is more balanced which may be true, but his early behavior of nightmares and talking in his sleep continues. He also has swollen legs that we already had examined for blood clots or heart difficulties with specialists who after many tests concluded the swollen legs were from the PD. There is no decreased swelling. He hates the compression socks but continues to wear them as the physicians have advised.
מלאתי את השאלון ב14 לינואר. עכשיו כשאני מנסה להגיע למידע כלשהו מלבד הבלוג אני מקבלת מסך שאין בו מידע.
מה עלי לעשות?
האם כוונתך שאינך מצליחה לצפות בתוכן האתר? נשמח אם תנסי לגלוש דרך דפדפן אחר ואם עדיין אינך רואה תוכן,
אנא פני לתמיכת הלקוחות שלנו בכתובת
I started Mannitol 1/20/17 with about 4g morning and evening> I have worked up to 9g morning and evening, the amount for my weight. Haven’t noticed any changes yet but fell very positive about treatment. Will post again next week.
Thank you Silas for sharing and for updating the registry.
For the follow up you can go directly to http://clinicrowd.info/pd-registry-follow-up/
Have a nice weekend
.חשוב מאוד למלא את השאלונים
על פי דיווחי חולים בשאלונים עם הזמן הבטן מתרגלת. אפשר לנסות לשנות את השעות ביום בהם לוקחים את המניטול או לשנות את מה
שלוקחים עם המניטול (תה קפה יוגורט שייק). לגבי השיפור: במחקר שעל פיו אנו פועלים המניטול מנע את ההתגבשות של האלפה סינוקלאין כלומר היה והוא עושה אותו הדבר בקרב אנשים עם פרקינסון יתכן והדרדרות המחלה תעצר (כיום אין תרופה שעוצרת את ההדרדרות). לצורך בחינה של עצירה בהדרדרות המחלה דרושה סבלנות שכן צריך מעקב לאורך זמן ממושך.
לגבי השיפור בתסמינים: יש אנשים החיים עם פרקינסון הלוקחים מניטול המדווחים על שיפור בתסמינים שונים לאחר פרקי זמן שונים. עוד מוקדם לענות באופן אחראי על השאלה הזו. על מנת שנוכל להתחיל להנגיש מידע חזרה לקהל אנו זקוקים לשאלוני מעקב חודשיים נוספים. כל שאלון הוא משמעותי ומקרב אותנו ליעד הזה.
כמו כן אנחנו פועלים לבניית איזור אישי בו יוכל מי שממלא שאלון להנות ממידע אישי נוסף מעבר לזה שישוקף לכלל הקהילה.
פעמיים ביום התחלתי לקחת מניטול לפני כחודש במינון הדרגתי. התחלתי עם 1/4 כפית במשך שבוע,עברתי ל- 1/2 כפית שטוחה מערכת העיכולץ
מערכתבהמשך. אני ממשיך לקחת תרופה נגד פרקינסון “דופיקאר”.אינני מרגיש שינוי /הטבה.מלבד השתנת יתר ולחץ על מערכת העיקול. בינתיים זה לא מפריע כי אני סובל מעצירות. מתי אני עסוי להרגיש שינוי ובמה זה מתבטה.
I would like to start filling follow up questionnaires. Due to an oversight, I did not save my registration questionnaire. Can you send me a copy? P,ease note that I am registered under [email protected].
Thank you for joining our registry.
it is not your oversight, we deliberately do not display the previous registry answers, in order to try and avoid bias and have participants fill each follow up in an as much as possible objective way.
we would appreciate if you fill the follow up at http://clinicrowd.info/pd-registry-follow-up/ so we can track the changes. Later on you will be able to get info on the changes that occurred along time
thank you again and have a nice weekend
Hello, I’m a newbie who will start using mannitol tomorrow. I would like to know if I can add mannitol to my smoothies? Thanks
sure, good luck
thanks Don, we will spread the message
Hello, I am having problems registering to gain access the questions .Site will not except my email address
We checked and you are definitely registered (nickname vagirl326).
Just go ahead and fill in the registry at http://clinicrowd.info/pd-registry/
If you are in the registry and the first page keeps on bouncing back it is probably due to the fact that you did not enable cookies
Let us know if it works for you after you enabled cookies.
This is first time to hear about manitol. I do’nt have any idea for the product. I am going to learn more about this . And I will try to share the information when I find out.Thank you.
Thank you for sharing.
BTW – feel free to fill the registry regardless if you decide to start taking Mannitol or not
Good luck !
well, I began Mannitol for a few days. i forgot about how much to take so I too a small Tablespoon. Now I don’t know if this is relevant to mannitol but later in the day i got dizzy and nearly fainted. now i begin again. i have taken mannitol for 4 days, a small teaspoon. yesterday, for a half of an hour, i hads blurry, refracted vision. can there be a relationship between mannitol and the dizziness?
Thank you for your note.
The calculated amount of mannitol can be found at the end of the registry survey.
If you have completed the survey and did not save the relevant document let us know and we will e-mail it to you.
We have addressed the safety of mannitol in the Q&As section.
The health authorities of the USA and EU have examined the safety of mannitol throughout the last several decades and yet again very thoroughly during 2013.
The only “hazard” they found is that it might cause bloating and that above 20gr per day there might have a laxative effect.
We do not have any indication it might have the effect you describe.
Having said that CliniCrowd does not provide any medical advice.
We recommend to consult the treating physician with any concern or change in the health condition.
Kindly remember to note in what was the effect and the time it continued when you fill in the FU servey.
Hope you feel well soon…
I am about to start Mannitol however I am looking for the D version of Mannitol (D Mannitol). I would apppreciat any suggestions to where I can buy this one online or at retail store. A specific product name will be helpful.
Following email communication, we thank you for joining our registry.
As you pribably noticed, once completed and submitted the registry, you should have been directed to a page regarding Mannitol with all the relevant information such as where to purchase.
It is important to note; that CliniCrowd has no relationship with Mannitol suppliers. The suppliers mentioned in our site, were recommended by registry participants.
I just registered and reading blog for first time. I have Mannitol ordered should arrive Friday 1-20-2017. will start treatment and send feed back results.
Thank you & welcome !
Have a good day
Hi, I started the Mannitol just 5 days ago and am wondering if it is more effective to take it in one dose AM or PM or to divide it? Thanks, Anne
We don’t have an answer to your question. This is one of the reasons for the registry, to learn from the community’s experience. Once we have enough data from participants that filled the follow up for several months, we will share the insights of others; when is the best time for participants to take Mannitol, with what, etc.
I have Multiple System Atrophy. It is a “Parkinson’s plus” disease. The speech, ataxia, slow movements are the same.Some people take a patent form o Manitol -is this what I the same. I am on a no sugar diet-however if the results are true in that people taking the Mannnitol are doing better- what do I buy? ‘I
We plan to have a specific registry for MSA, but till we do the best is to fill in the Parkinson’s prevention registry (questionnaire). See registry at: http://clinicrowd.info/pd-prevention-questionnaire-v1-embed/
Regarding the type of Mannitol, see PD Frequently Asked Questions at: http://clinicrowd.info/pd-faq/
The scientific data we present in the website does not refer to the patent form o Mannitol you mention, we refer to the Mannitol that can be freely purchased. More details on; where other participants purchase Mannitol, type of Mannitol and dosage are at the end of the registry. After you submit the registry (questionnaire) – you will be directed to a page with all the information.
Regarding your diet, it is best that you consult with your physician.
We started using Mannitol for Mark, my husband, on Jan 1st, 2017. We are visiting Israel in February and hope to meet with the team so they can see the progress ( I hope) of my husband’s reaction to taking the drug. At this time he believes there is already progress, but I am not sure if it’s real or imagined due to his hopefulness of its success.
Would like to video my husband and see what he looks like in february when we arrive in Israel.
We will be staying in Jerusalem but will travel to any clinic where the studies have been performed.
this sounds great, we hope you keep on seeing changes with Mark and wish him health.
We would appreciate if you can report his status prior to the Mannitol and the changes since in the Parkinson’s registry at http://clinicrowd.info/pd-registry/
Great to have you the first on our blog…
Kindly report on our survey.
Since you are using another form of Mannitol (not the one used in the arlicle we are basing on) kindly note in the comments the form you are using.
Here is the link to our survey
Started using Mannitol 1-6-17 .Using the supplement Syncolein. Will post experiences over the next months