Mannitol cures Parkinson's ? Channel 1 TV video from Israel exposes a surprising report

[Ranico]

Channel 1 TV video from Israel exposes a surprising report. Thanks for channel 1 for translating into English

youtu.be/0MfO3WySZ_4(Not working as expected?)

[paddyfield]

The picture caption uses the word drug but it actually categorised by the FDA as a food supplement as it is a sugarused widely for various health and non health reasons. Very tempting to try it and contribute to the data they are collecting.

[Ranico in reply to paddyfield]

you are right, it should be a written as food supplement.

[jdc3]

There seems to be so many stories like these where an alternative treatment has great results for one or two people, but doesn't seem to work for the unwashed masses. (There were a lot of articles about Mannitol in 2013 then it just seems to have faded away.) Must be the placebo effect?

[Ranico in reply to jdc3]

The reason the 2013 research faded away is exactly why we decided to found Clinicrowd. It faded because no one had an financial incentive to continue the research as Mannitol has no patent. If you go to clinicrowd.info you will see that we started another program with Cherries on Gout disease. Cherries provide better solution then the best drugs out there and no one cares to let patients know.

The reason we set up a registry to try Mannitol is to really see if it works on the masses. There are already 2500 Parkinson's patients who decided to take Mannitol and contribute to the world knowledge. Once we have statistically significant information we will publish it...but i can tell you it is not 1 or 2 people that it works on...

[jdc3 in reply to Ranico]

Thanks for the reply. I signed up with clinicrowd. Unfortunately, I live in Thailand and the only place I've found here which sells mannitol is a wholesaler who only sells in large quantities. I might try to order from Amazon, but there's a good chance customs will just throw it away, or charge a massive duty. Does anybody know if it's available in Thailand?

[whack-a-mole in reply to jdc3]

'iHerb.com' is usually the best for supps to Thailand but they, unfortunately, don't currently carry mannitol. Amazon is next best bet. A message to the vendor at time of order may persuade them to label it as a fruit sugar/food product which should present no problem with customs.

[jdc3 in reply to whack-a-mole]

Thanks. A friend just had some coffee beans shipped from the US. The Thai govt charged him $10/pound duty - I'd be OK with that amount so I'm going to try. Do you know what the shelf-life of Mannitol is?

[park_bear in reply to jdc3]

Mannitol is a very stable compound - you can melt it at 335 F / 168 C without decomposition. I expect if kept in a sealed moisture proof container like a mason jar it should last a lifetime.

[whack-a-mole in reply to jdc3]

Just noticed under "About the Product" on a kg of the NuSci brand (I went with BulkSupplements brand) it's good for at least 1-1.5 yrs. As long as you seal it after each use, you'll have more than enough time to get through a 1kg-pack.

amazon.com/NuSci-Pure-Manni...

[999---666]

this speaks to folding of brain cells which is alzhimers......which may be only a component of pd, a very varied condition......I think we have to recognize that we may be confounding several conditions as pd. the only thing for sure is that it is primarily an illness of aged. can't explain pd of youthful people....unless they took drugs, etc. that accelerated deterioration associated with aging.

[Ranico in reply to 999---666]

No, the research is on Alpha Synuclein which is PD. At Alzhimer, another protein Beta Ameloid folds.

[SuperMNew]

Why not try it? It's natural and inexpensive. If it works, great! If not, then move on.

[Palmarloop in reply to SuperMNew]

This is exactly my feeling too. I have ordered some and intend giving it a go! Although I'm not sure what is reasonable; I thought there should be some sign in about six months. I'd be interested to hear from anyone who has tried it.

Best wishes

[hanifab23 in reply to Palmarloop]

Please tell me where you ordered from

[Palmarloop in reply to hanifab23]

I ordered from Blackburn Distributions. 500 mg for about 20 pounds sterling. (I know that's an odd way of writing it but I'm not sure if you are in the UK). They responded quite fast and the product looks okay.

I haven't started using it yet.

Best wishes.

[Ranico in reply to Palmarloop]

Please do not forget to register at clinicrowd.info and report back for the community.

[Ranico in reply to SuperMNew]

If you decide to take Mannitol please register and provide the monthly information so we can determine together the effectivity of Mannitol

[zawy]

Sounds great and there are other videos.

youtube.com/channel/UCgFTOo...

There is company behind the videos, so caution is warranted. On the plus side, it appears they formed to get the word out by crowd-funding. I think that means you agree to join their "club" via fees, agree to take it in a standardized way, and report your results along with others in the club, and it would appear club members get preliminary access to information. It appears they just started a few months ago.

clinicrowd.info/

Here is the registry:

clinicrowd.info/pd-registry/

It absorbs better when it's in a higher concentration. A teaspoon per 8 oz would be about double the concentration used in the following study's high concentration. It's a sugar alcohol so it can cause diarrhea. It seems like it will absorb better when dehydrated, although dehydration should be avoided.

ncbi.nlm.nih.gov/pubmed/761...

The only research on it I saw was a 2013 article that also used fruit flies. Only one of those researchers shows up in the company and only as an advisor, which is a good sign:

ncbi.nlm.nih.gov/pubmed/236...

I spent the $35 to get a kg from amazon. It's a safe low-calorie sweetner that can clean you out in the morning, so I see no reason not to put in my coffee every morning.

[Ranico in reply to zawy]

Yes. Clinicrowd was set up to launch the idea of crowd based registries for the benefit of society, and we even raised some money from good Israel entrepreneurs that liked the idea.

As you can see, we have disconnected ourselves from any revenue source in selling Mannitol to stay objective. We hope that once we have 1000 patients giving 4-6 monthly reviews we can have information that we can share.

If you decide to take Mannitol please participate in the registry and please be patient. Some people get nearly immediate improvements (especially those that lost their sense of smell) and for some it take more time. Yes, we know it could be Placebo and this is why you have to be patient.

I also saw that you read the info thoroughly. I am attaching a link to the full research paper. Actually, the interesting results are on mice as the mice model is much closer to human then flies. The mice research was done in cooperation between Tel Aviv University and UC San Diego.

file:///Users/rani-pro/Downloads/37B89E5A79F086F463DA943AFF6D0931.pdf

[zawy in reply to Ranico]

Your link points to a file on your computer. Here's one I found:

ncbi.nlm.nih.gov/pmc/articl...

[Ranico in reply to zawy]

you got the right one ...as you can see, there is also an extensive research on mice as well.

[zawy in reply to Ranico]

I would not call 2 or 3 papers extensive, but even extensive work in non-human would only be an indication of the possibility in humans. Clinicrowd is a great idea to overcome this, but it's not going to work unless the effect is dramatic and in a larger group of people. A "better" treatment idea in terms of getting the company more recognition a would be resveratrol mixed with DMSO and applied twice a day for 20 days. This has erased 90% of sun damage in my lower leg, eliminated certain age spots (particularly a keratosis) , and greatly reduced a mole (only 5 treatments) that I had since I can remember. There was also a 10-year old dark area ("scar" from an injury) on my scalp that went away. I can't determine if it's eliminating freckles or age spots or both, or just reducing one or the other. They decrease in darkness, but it could be just a bleaching effect. I've kept pictures. Another idea is 20,000 IU vit D3 (up to 3 times a day) to completely stop and partially reverse any stage in a cold. There's some minor risk to such heavy vitamin D3 if taken for a month, but cold's don't last that long and colds are much more damaging. 3,000 IU vit D3 also stopped osteoarthritis in my mother and myself. Her mother never got sun and suffered terribly from it for 20 years, bed-ridden the last 8.

Getting notoriety with the PD would be a good jumping off point for the ski treatments.

The company should only provide a platform for the data gathering. The users should initiate disease-treatment ideas and design the questionnaire. The primary challenge is developing a generic platform that helps insure the participants answer honestly and follow the protocol. It should be a seamless web page, iphone, and android app. The purpose of the company would be derive profit from establishing the platform and marketing it.

[Ranico in reply to zawy]

Thanks so much for taking the time to write your thoughts.

Yes, you are right, a research on mice is only an indication. This is why we established Clinicrowd. We also know that we have a limitation in the registry as we do not have Placebo to compare. But we believe that once we have a huge number of patients reporting (we want to reach 50k Parkinson's patients)and for a decent amount of time (2 years), we will be able to compare the registry to patients in identical stages of Parkison's that did not take Mannitol and compare. From what we learned, to be on the safe side, any trial with PD should be more then 6 months to eliminate Placebo.

Thanks for your advice on the 2 other ingredients. I have added them to our list of candidates. It is our intention to open the platform for anyone to run clinicrowd tests, but honestly, this day is not around the corner, as we really need to focus our efforts on Mannitol and Alpha-Synuclein. If Mannitol does the work, there are 2 other disease which are caused by alpha-synuclein, Lewey Dementia which is about 1/3 of dementia cases and Multiple System Atrophy (MSA), a rare disease that has no remedy whatsoever.

Any help that you guys can do to bring PD patients to the registry is welcomed and would help us make a better analysis.

Our next task which will take few month is to present the finding to the users, as well as to create a personal secure place for the users to see their own information in such a way that they can understand how they are doing.

[zawy in reply to Ranico]

If a treatment has a large effect in a short period of time, and if you can go on and off the treatment and see the effects come and go with treatment, then you need only yourself to determine the validity. This is the case with vit D3 and the cold: 30 minutes and you feel better, 5 hours later you feel worse and do it again to feel better. Also with the skin: there are a million cells in each age spot, so you have agreement among a million test subject when you test one spot on yourself. I'm exaggerating to show how ridiculous medical skepticism often is. The skepticism normally displayed is only necessary under certain conditions. Pharmaceutical-style skepticism is unscientific in most situations. Very few surgeries have ever been blinded (i.e. there are no proper controls to prove surgery works). Cardiologists performing open heart surgeries instead of using stents love this problem, as the average open heart surgery in non-immediate life-threatening circumstances has always been shown to not extend lifespan.

[advancedPDguy]

If you eat mannitol, it acts like a laxative. If you take it intravenously, it reduces swelling in the brain. Have the purported benefits of mannitol for PD been reported in the medical literature yet? If so, what route of administration was used?

[zawy in reply to advancedPDguy]

It's only been formally tested in mice and fruit flies. The research on brain swelling has come into question due to a bad researcher. If nothing else, the laxative effect could be very useful in PD. It does not seem to cause a laxative effect in me when I take it without water. That also allows it to absorb better.

[Ranico in reply to advancedPDguy]

We do get some reactions from PD patients who decided to take Mannitol on gas and some inconvenience in the stomach, This usually disappears completely after 2-3 weeks

[zawy in reply to Ranico]

I can whole-heartedly confirm the excess gas side effect. Taking it dry (rounded tablesppoon twice a day) seems to be by far the best way to prevent diarrhea.

Either the mannitol, olive oil (4 tablesppons per day), or black cherry concentrate (3 tablespoons per day) that I started at the same time is reducing my anxiety problems. I started olive oil and black cherry because they help a lot in reducing inflammation and I suspect inflammation problems in my brain for several reasons. I have not been diagnosed with PD due to lack of physical symptoms, but anxiety, severe lack of smell, reduced memory and concentration, and lack of sleep are mimicking PD. I have to take a lot of melatonin to get a good result (20 mg), indicating those receptors are pretty weak (which occurs in PD). I still sleep only 6 hours on good days, but it's a deeper sleep with the melatonin. I have also seem to have benefited from nilotinib but I only take it a month at a time due to fear of side effects.

[park_bear in reply to zawy]

I have found the 5-HTP helps me stay asleep. Doesn't take much - only 50 mg an hour or two before bed.

[zawy in reply to Ranico]

Ranico, how long does it take for people to respond to the mannitol? As a sugar alcohol, I wonder if it is like alcohol and simply allows an energy boost to the brain cells (PD patients say shaking reduces when they drink alcohol). If it's clearing out misfolded a-syn, it should take at least a couple of weeks. This is not to detract from the animal experiments where the benefit is clear and fundamental.

[Ranico in reply to zawy]

It differs. As you know PD is different for everyone. Some people start to get some improvements after 6 weeks and some after 3-4 months. We do not have a lot of people with 4 months, most are taking Mannitol 1-2 months.