Mannitol disolves Alpha Synuclein
 

Listen to an interview with Don McCammon and reversal of PD symptoms. I found this info incredibly hopeful. He is a fellow parkie. maybe someone else can post some science links for mannitol and Parkinson's.

http://www.blogtalkradio.com/parkins...insons-disease

Here is a free-access link about this; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3682557/.

Although the work was done using fly and mouse models, this looks encouraging to me.

Thanks for the link, Kiwi. I thought info on mannitol would elicit more response. I received my order of syncolein and will give it a try.

Very interesting, please keep us posted on how it treats you Blackfeather.

Is the regimen safe in the long-term?: NOT PROVEN. As I understand it, mannitol needs to be taken daily at a dose of 1.5 tablespoons/day for life. The same research group describe mannitol as a BBB disrupter. There must be a concern as to what this lets into the brain. Against that is its successful long-term use as a food agent.

An interesting claim for mannitol is that its effects can be noticed in two months. (I was expecting a disease progression slowing therapy, such as alpha-synuclein cleansing, to take at least a year before having a noticeable effect.) This shortens the test period. It can be made quicker still by testing continuously throughout the trial: stopping early if the initial results make it unlikely that the positive outcome is achievable; reporting early if the initial results are particularly good. The tap-test can be used for this.

John

updates on syncolein usage?
 

Dear Blackfeather, any changes in condition since the use of syncolein? I am wanting to buy for my husband, but don't want to go thru expense if it doesn't work.

Thank you!

Gerry

I am on day 12 and so far don't notice any difference. I am hoping I will experience something positive in the next 2 weeks. I am on board with taking syncolein until I use up my 2 month supply. I'll let everyone know my results.

I'm taking the straight mannitol now at at day 8. Some extra gas but not too bad. No improvement yet but will let everyone know how it goes.

What to think?
 

So since Don's email address is posted in this thread, I thought I would ask some Mannitol questions in an email to him.

Here are my questions to Don McCammon:
Can I ask how long you have had PD and if you take Sinemet now or in the past and if it helped you? Is your brother taking mannitol and how has he done on it. And, in general, how have other people who take mantitol done. If some one who has advanced PD, will mannitol allow them to lower their Sinemet dose and also reduce on/off time and other PD problems? Testimonials would be great.

And his reply:
I am so sorry about your wife's condition. At this point I doubt she would benefit from Mannitol in that she has probably lost most if not all of her dopinergic neurons.


Don

So he has not provided any information or testimonials on his customers who he sells Mannitol to. I don't know if he ever took Sinemet and he claims it only helps with early onset PD. I was hoping for a more informative response.
When low dose naltrexone LDN was being claimed as a lifesaver 10 years ago. My wife began taking it then for 7 years. It did not help and she is at a very advanced PD stage now.

I'm sorry about your frustration with Don. Those are reasonable questions and deserved a response. I asked if syncolein could help with dystonia. He said, "I have no idea". That is all had to say. It's still worth try in my opinion

I wondered also wondered if Don was diagnosed by a doctor to have Parkinson's from his interview. If I heard him correctly, he said his brother was diagnosed with PD and Don then thought he had it also so he started trying mannitol.

also taking mannitol
 

Hello, I am also taking mannitol since March 10th..did notice one thing since then and then maybe I am imagining it but at times my sense of smell has improved. I intend to stay with it for 2 months and beyond and will report back later.

Mannitol results?
 

Dear Blackfeather:

I would like to try taking mannitol, but have some doubts about it. Would you be so kind as to post your experience with it and how long you have taken it?
Thank you.

Grey Wolf

I tried mannitol for 2 weeks which wasn't long enough to evaluate it fairly. I stopped taking it due to a PD related urinary tract infection which put me in the hospital for 6 days. I now have a bladder catheter which I understand will be permanent. Also under hospice care as well

I guess I'm not a fruit fly. I've been taking Mannitol for six weeks and see no change in tremors. I do seem to have no constipation although that may be due to the 400 mg of magnesium every day.

any results from taking mannitol?
 

Dear Japhi

Would you kindly tell us if you have seen results from taking mannitol for 2 months? What has your experience with it been like?
Very eager to hear from you, as I'm considering trying it too.

many thanks

grey wolf

Hi GreyWolf
Nothing to report as of yet, had some good days (less tremors) but not consistent. I will continue with the mannitol until my supply runs out..should be another 2 months or so. I will report back. Japhl

mannitol update
 

Dear Japhi

How is it going with the mannitol experiment? Would love to hear an update. Also do you know whether Don claims to know others who had success with mannitol?

many thanks,

GreyWolf

Hi GreyWolf,
Just finished my supply..did not notice any positive results.
Japhl

Mannitol didn't do anything for me either

Mannitol-for-PD "trial" now in progress
 

There is now an informal "trial" of mannitol for PD, being run via a website in Israel. Anyone with PD can take part. The "trial" has been running for about 3 months and they have about 800 participants so far.

They have structured the website such that you get to see the dosage recommendations after you complete an initial survey.

I joined about 3 weeks ago. I now add 1 level tablespoon of mannitol to my morning coffee, and fill out an online survey once a month.

At this stage I plan to hang in there for at least 6 months, maybe a year (the original researchers gave mannitol to fruit flies for about a month before retesting them, and it was 4 months for the mice).

JustCloud-IT download page

(hat tip to Ranico at HU for the link)

Hi Jeff,

I hope mannitol works for you. I tried it for 2 months with no change. Maybe I didn't go long enough. Please keep us informed how you do! Some of the folks on the website have been taking Mannitol since April. Where can you see the results of the trial?

Some extra information
 

The CliniCrowd website contains comments from people who have been taking mannitol since April, but the website itself was only launched about 3 months ago.

On the question of when some initial results will be available, about 3 weeks ago Ranico at HU said the following:
"We will present the data when it is statistically significant and when we finish the user interface. We expect that to happen in 3-4 month ..."

I found the following information on the PD FAQ page on the CliniCrowd website:
"According to some patients reports so-far:
- After 18-30 days with Mannitol they feel a change;
- 30-60 some observed a slight decrease in symptom improvements and even some regression;
- After 60 days they report steady improvement."

Six Month Update
 

I've now been taking mannitol for 6 months. I've also been taking N-Acetyl-Cysteine (NAC) for 3 months. I've also been doing 40 mins of high-cadence cycling every day for more than 12 months.

Things have been going really well for the past few months. How much of this can be attributed to mannitol, and how much to NAC (or the combination of both!), is not clear to me.

Mannitol might also be neuroprotective. This is something that is best measured over a period of years, rather than a period of months.

Putting a tablespoon of mannitol in my morning coffee each day is not very difficult, so I plan to keep going with the trial at least until my current stock of mannitol is used up (late next year).

Short Mannitol video.....
Parkinson's and Mannitol in the news channel 1 - Available with English Subtitles - YouTube

NOTE: No one should ever try anything based on some random comments on the internet. Do your own research and talk to your doctor before trying anything.

So . . .

Reviving an old thread because I believe people should take a closer look at this molecule.

First a brief introduction: My name is Joe Peck. I'm 51 years old, a loving husband and father of 3. I'm not a doctor, but I am scientifically trained and graduated Dartmouth College with Honors. Not bragging as I am keenly aware that there are many smart people on this forum, just trying to say I'm not some internet quack. I have Spinocerebellar Ataxia Type 1 as does my father and my aunt who are 80 and 74 respectively. SCA1 is similar to PD because one major underlying element to the disease pathology is a misfolded protein. In PD there is alph-syn and in SCA1 there is ATXN1. The progression is similar gait trouble, speech trouble, hand writing issues, etc. Sadly SCA1 progresses faster and is always fatal.

Now, having said that my reason for writing is to share my experiences with trehalose and mannitol. One year ago I started my father and my aunt on a regimen of 2 Tbs of trehalose daily in coffee. Both my father and my aunt have had zero progression in their disease over the course of the year. Now before I go any further I want to add that they are also taking 500 mg twice daily of Niagen, but that is for another discussion. In addition, I am active on several websites around the world and now have convinced more than a dozen people to try taking trehalose and/or niagen. Of the people that have kept in touch about 1/3 are reporting a stopping of progression.

My main point here is simply to say: When a patient with PD takes mannitol they may very likely see no improvement because IF the molecule is doing what scientists think it is doing then it can only stop progression. It really can't repair damage that has already occured. That is why people in the early stages of PD are far more likely to benefit from mannitol than are people in later stages,

BUT

and here is the big but . . . Mannitol is 1.6 calories per gram and is a long used food additive with no history of danger to humans. Isn't it worth eating 16 calories of a sugar substitute everyday for the rest of your life just in case MAYBE it's slowing the progression of your illness. To me the benefits vastly outweigh any risks. Most importantly I want to emphasize that my point is most PD patients will probably not experience any improvements from mannitol, but that doesn't mean it isn't slowing down the progression, and if it is simply slowing the progression really you will never know because we simply don't have anyway to test for that.

JP66, welcome to NeuroTalk :).

I am sorry to read about your Spinocerebellar Ataxia Type 1.

As far as I can see from PubMed there are no reported interactions between mannitol and ATNX1 (Ataxin 1).

I thought it only crossed the blood brain barrier when injected.

CliniCrowd 15-mth update
 

At this stage of the CliniCrowd "mannitol for PD" trial (15 months for me), everything is still going really well. However, I am not able to attribute this to any particular medication, supplement, or exercise (if you click on my name you can see all my medications, supplements, and exercises).

For me, this trial is more about long-term disease progression, rather than short-term symptomatic relief. Hopefully, a few hundred PwPs around the world will stick with it for at least a couple of years. Hopefully, that will generate some meaningful data.

However, I have recently become aware that there seem to be fewer and fewer of us left on the CliniCrowd trial who are still completing the survey every month. This will obviously impact the quality of the results of the trial.

BlueDahliasBrother said: "I thought it only crossed the blood brain barrier when injected."

It might be more correct to say that it might only cross the BBB in sufficient quantities when injected. When you take mannitol orally, most of the stuff gets excreted, and you can't take more than a certain amount orally or you will get diarrhea.

But we shall see (in another year or two) (maybe) ...

CliniCrowd Mannitol-for-PD Webinar Video (March 4th, 2018)
 

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

They say they currently have more than 1500 participants (from 42 countries) in the Mannitol-for-PD trial.

Webinar March 4th 2018 New hope for Parkinson's Patients - YouTube

More results from CliniCrowd
 

CliniCrowd have recently released some more results from their Mannitol-for-PD trial. This has triggered a new "mannitol" post on the SoPD blog:

The Mannitol results | The Science of Parkinson's

Mannitol 2 year update
 

It is now 2 years since I joined the CliniCrowd mannitol trial and started taking one level tablespoon of mannitol in my morning mug of coffee.

At this stage, everything is still going really well, but I am still not able to attribute this to any particular medication, supplement, or exercise (if you click on my name you can see all my medications, supplements, and exercises).

As I mentioned previously, CliniCrowd reported earlier this year that only about 80 PwPs are completing the survey every month, and this will obviously have an impact on the quality of the results of the trial.

However, mannitol is relatively inexpensive, and I still find it very easy to add that level tablespoon to my morning coffee, so I will continue to do that (and complete the monthly survey) for the foreseeable future.

Mannitol, specific neuroprotective qualities
 

I believe this is worth a try. However, as a former believer and user (wife) of low dose naltrexone, I can also be skeptical of many of these ncbi/nih papers. But, combined with good doses of curcumin and VD3, mannitol is worth a try for a year.



A Blood-Brain Barrier (BBB) Disrupter Is Also a Potent α-Synuclein (α-syn) Aggregation Inhibitor

Mannitol also exhibited specific neuroprotective qualities in the dopaminergic system of the treated mice, where it was able to restore TH immunoreactivity in the mThy1-α-syn tg mice back to levels comparable with vehicle-treated non-tg mice in the BG. Importantly, mannitol had no general neuroprotective effect on the control non-tg mice.
Mannitol seems to have a preventive ability to inhibit α-syn aggregation, but not a reversive ability. Mannitol was not able to dissolve preformed α-syn aggregates in vitro nor to dissolve α-syn aggregates when dripped on brain sections taken from α-syn tg mice.
Abnormal protein misfolding and aggregation are key features in many neurodegenerative disorders. Interestingly, a decline in the intracellular level of molecular chaperones was shown to increase the levels of abnormally folded proteins inside the cell (39). Therefore, it was proposed that the cell toxicity in neurodegenerative disorders may result from an imbalance between normal chaperone capacity and the production of misfolded protein species (40). Hence, the addition of chemical and molecular chaperones, which are able to stabilize misfolded proteins, was suggested as a therapeutic approach in neurodegenerative disorders (22). In addition to its BBB-disrupting properties, mannitol was previously suggested to function as a chemical chaperone, demonstrating a very potent effect on the stabilization of protein structure (19–21).
Here, we have demonstrated that mannitol interferes with α-syn aggregation in vitro and in vivo, whereas no adverse effects were observed in control-treated flies or mice. In addition to its osmotic diuretic effect, mannitol is known for its BBB-disrupting properties (41). To the best of our knowledge, mannitol has not been tested or used until now in the clinic for drug delivery into the brain. Therefore, we suggest that mannitol administration in combination with other drugs could be a promising new approach for treating PD and other brain-related diseases such as Alzheimer disease. This prediction is based on its chemical chaperone properties, its vast protective cellular capabilities, and its BBB-disrupting properties.

In my "Mannitol 2 year update" I forgot to mention that my sense of smell has begun to return. It started about 6 months ago. The first things I noticed were my wife's cooking, and my own body odour.

About 7 months ago, a report from CliniCrowd mentioned that a number of PwPs in the trial had noticed their sense of smell returning. However, Jay Alberts has reported a similar experience with a number of PwPs doing high-cadence cycling, and high-cadence cycling is the main exercise that I do.

Mannitol 3 year update
 

A recent post on another mannitol thread has reminded me that it's past time for another mannitol update from me.

Once again, all I can really say is that nothing has really changed, and everything continues to go well (see my 2-year update above).

I was reminded recently of something one of the CliniCrowd staff said about the mannitol trial involving mice. He said that when you scale up the treatment duration from mice to humans, you get a treatment duration for humans of 4 to 6 years. My 4 years will be reached in November 2020.

As I said in my 2 year update, I still find it very easy to add that level tablespoon of mannitol to my morning coffee, so I will continue to do that (and complete the monthly survey) for the foreseeable future.