One of my best friends got Parkinson's ... this is my journey to find a cure for him...it is going well !

One of my best friends got Parkinson's ... this is my journey to find a cure for him...it is going well !

This is how it started 3 years ago, i started to look for every new research or clinical trial on this disease. Luckily, since my friend saw that i m very serious, he started sending me articles that other people sent him and one of them caught my attention. It was a research done at Tel Aviv University on Mannitol and Parkinson's. I urged my friend to set up a meeting with the leading researcher, Prof. Daniel Segal, and in that meeting we learned something amazing. Prof. Segal decided to investigate how to dissolve the alpha-synuclein ("AS") clumps that start to aggregate on the Substentia Nigra, in Parkinson's patient's brain, and to kill the dopamine neurons that produce dopamine. When 60-80% of the neurons are killed by the alpha synuclein, Parkinson's disease ("PD") starts to become visible and a challenge in everyday life. So, Prof. Segal and his colleagues tried several materials that they suspected will dissolve the clumps, and one of this, Mannitol did a very good job in the test tube.

Few words about Mannitol. Mannitol is an FDA approved food additive, you can buy it in the free market without subscription, it is even sold on Amazon. It has about 60 years of history, and you can find it since then in most chewing gum brands that you eat. According to the FDA if the consumption is more then 20 gr per day, a warning should be issued that it may cause diarrhea ... (guess what...very good news for many of the PD patients :))

Next step, the team at TLV University, tested mannitol on flies that are genetically grown to have clumps of AS in their brain, not exactly on the substentia nigra like PD but lots of clumps all over. These flies have motoring issues when they are born. After 4 weeks of Mannitol their motoric movements were similar to regular flies and when their brain was investigates, they found out that the AS clumps were reduced by 70%!!!!

Next they tested Mannitol on Mice. This was done in cooperation with San Diego University, Professor Masliah. (Prof. Masliah was appointed head of Neuroscience for the NIH few months ago). The model of Parkinson's on mice is better then flies but the results were similar. It took 4 month on mice to observe a significant motoric improvement. Again, when the brain was analyzed there was 70% reduction in AS clumps !!!

...and now starts the sad part ... there was no interest neither in the university nor in Pharma companies to continue the test on humans. Mannitol has no patent !!! so no one can make money !!!! who cares about PD patients if no money can be made !!!! . Prof. Segal and his colleagues had to abandon the research and published the article to continue to other research.

During the last 3 years, Prof. Segal told us that he gets email from PD patients that decided to take mannitol and they tell about significant improvements to their situation, but this is done only on emails and without any verification.

I was furious when i heard the story and together with my friend and few other friends from the Israeli hi-tech industry, we decided to find a way to bring Mannitol to the attention of PD patients. For those who decide to try Mannitol, we set up a registry where they can report on their situation such that researchers can look at the data, and make conclusions about the efficacy of Mannitol.

The registry is open to everyone who decides to try Mannitol and report back. Not like Pharma companies that would test only on a specific set of patients and would get the approval on every patient, we hope we can build a registry that can measure the impact of Mannitol (if any) on all different groups of patients. We do not sell Mannitol neither anything else and as such have no financial benefit in a successful trial. We are looking for the truth.

Some of the results now are very encouraging. We prefer not to report them in order not to be biased. Some of the users that take Mannitol in Israel have set up a Whatsapp group where they report to each other and this can be done also in this website.

Here you can find some information about the research and the researchers and the registry. If you decided to take Mannitol, we will appreciate if you could report back to the repository for the benefit of other patients.

c-i.me/media.php?hash=35628...

We launched the website in Israel 2 months ago, and have already 530 patients registered growing every day.

clinicrowd.info

38 Replies

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  • and the most important thing .... this is my friend Dani -

  • I'll give it a try!

  • did it help with balance?

  • What people most report on (remember, most are around 2 months on Mannitol is : Return of sense of smell, Less pain (for those that have PD with pain), More sleeping hours, Less rigidity, better voice capabilities, less running to toilet for urine and significantly less constipation (we believe this is inherent in the Mannitol and has nothing to do with PD).

  • clubpd.com/content/mannitol...

    4 months ago sterlingin posted on constipation thread above link. It is about Mannitol. I guess that Mannitol can be used for babies that have constipation it is very safe.

    This research sounds very exciting. Mary

  • Hi Ranico

    I sympathise with you. Profit always takes precedence over mercy.

    I am on an Amino Acid regime which has the same issues regarding acceptance by the 'Powers That Be'. However, it has been tested by hundreds of patients and seems to be sound.

    Personally, I was diagnosed three years, and been on the Amigos for 1 year. I had tremors down my left side, and clenching of my left toes. Together with weakness and brain fog. My symptoms are now negligible, although I have to avoid stress. There is no on/off nonsense; my three daily doses carry me through the whole day. I can even take a couple of days off with no ill effects.

    I feel a bit guilty reading the hassles folks are having, and tell all interested parties, but no one, as far as I know, has given Amigos a try. I can understand why. It is difficult to swim against the tide, esp with PD.

    I wish Dan all the best, he is blessed to have a buddy like you to be his strength.

    Check out the video here...

    Hope-For-Parkinsons.com

    Peter

  • Thanks, we will take a look at Amino Acid regim and see if we can add it to the platform.

  • I watched the video but it didn't tell me what to take etc. Just advertised the online clinic run by these Drs - who in fact are chiropractors.

    What do you actually take and in what quantities?

  • Hi Astra

    I tried for months to follow the protocol (below), without success, before I found Dr. Ron. True, he is a chiro, but he is the only one I could find with experience in this field.

    To answer your question....

    There are two patented tabs required, which may be difficult to purchase without a doctor,although, with sufficient determination, you can source the ingredients.

    These are CysReplete, and NeuroReplete. The formulation is on pages 9 and 10 of the protocol at ...

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

    My personal dose is as follows...

    L-Tyrosine. 2g

    98% pure Mucuna. 2.2g

    NeuroReplete. 1Tab

    CysReplete. 1Tab

    Vitamin B6 100MG

    Folate 800 MCG

    I take that three times daily at 4-5hr intervals.

    Each dose is slightly different, but the above is close enough. I emphasis we are all different, and it takes months to establish a personal regime.

    There are a couple of things to note :-

    Sometimes CysReplete causes stomach upset if taken first thing in the morning. The timing of Cys' is not critical, as long as you get the daily dose, (3), leave it for later.

    The daily dose of Neuro' is determined by trial and error. It should be adjusted to minimise any nausea caused by the Mucuna. It should be in the range of 1 to 5 per day.

    The Mucuna dose must be found by trial and error. Start low and gradually increase. Most people fall within the range of 2g - 7g per Day, but not all. Initially my dose was reviewed on Mondays and Thursday's, and increased by 0.2g per dose. Eventually your symptoms should start to wane. Go by what you would consider the main symptom. As the symptom gets weaker review dosage maybe once a week. Allow the body time to sort itself out, if you try and beat it into submission with Mucuna you will probably OD. When the main symptom is under control, then stay there. Hopefully secondary symptoms will follow in time.

    That is my experience to date; it's a long haul, but it took a while for us to get ill, so I guess it will take a while to heal.

    As for the other ingredients; just introduce them gradually until you get to roughly where they are above. Read the protocol and try and understand as much as possible, knowledge is power.

    I use tyrosine powder rather than tabs, and dissolve it with the Mucuna in warm coffee or hot chocolate. Just be careful not to make it too hot, if you can swallow it then it's ok. Yes, you can mix it with ice cream. :-)

    It is complicated,

    hopeforparkinsons@yahoo.com

  • Harleybob

    I would hope you dont get fluctuations at year 3 no matter what you are taking. I wonder how people on the protocol manage. 6 or 8 years into diagnosis, i havent heard from peope in the more complex phase of PD.

    Glad it is working well for you.

  • What is Amigo? I would very much like to give it a try.

    ethelines

  • Hi ethelines

    Amino Acids are the basic building blocks of the body. Parkinsons interferes with the fine balance that exists in a healthy body. AA therapy attempts to restore that balance, and, as they are 'natural', there should be no adverse effects as is common with manufactured drugs.

    See also my reply to Astra above.

  • I tried joining your site - answered the questionnaire, registered and got password, was forced to go through the questionnaire again, ***but I never found any link to allow me to view patient reports of their experiences***. What is that link, please?

  • Sorry if i did not explain. 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 when there is enough information and when we finish the software user interface. We need your data in the registry to get to that point.

  • Well, OK, but this needs to be clearly stated to people upfront, in your post up top here, and especially at the site. Otherwise people who are your natural allies will be put off.

    At least I did get dosage information out of it and that is a good thing.

  • You are right, i will see if i can correct it ASAP.

  • Is is 20g a day?

  • According to the site it is 20 g for a 190 lb. person and 10 g for a 150 lb. person.

  • Thanks. That's quite a different dose for the 2 weights! Are you going to try it?

  • Those are quite different dosages. Yes, I actually have 5 kilograms(!) I got from Amazon a while back and its high time I started using it.

  • I agree this site is a bit of a dogs breakfast.

    The protocol we are talking about is here...

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

    There is a lot of stuff by Dr. Hinz on the net.

    Easiest way to make contact with Dr. Cargioli is via his main site.

    drcargioli.com/

    There isn't a list of satisfied customers or anything. There is 800 odd people involved in the protocol however.

  • A pill stop to determine dosage efficacy, of coourse is a good idea

  • Email

    Hopeforparkinsons@yahoo.com

    Doesn't seem to be on website. Thankfully his Aminos are better than his websites. :-)

  • I am very glad that it works for you. It does not fit Clinicrowd because we intend to open the registry only for nutriments that are 100% approved by the FDA as GRAS, and that you can buy them through multiple vendors such that we are not involved to keep our objectivity. Mannitol is a commodity and as such it fit.

  • ncbi.nlm.nih.gov/pmc/articl...

    All the individual ingredients are approved by the FDA as GRAS, and are available on the open market. The doses of Mucuna are high, and the exact formula has to be determined for each individual, so it may be difficult to incorporate into your database.

  • Thanks for getting the news out. Couldn't find on the market, definitely look on Amazon. All the medical articles say taken by IV. Do you get the same effect if taken by mouth? Hmm..

  • Mannitol through IV is a completely different product not approved as a food ingredient. Those who decided to take Mannitol and register their results are using the approved Mannitol powder, thus you can find it for example on Amazon - amazon.com/s/ref=nb_sb_noss...

    Again, we are not associated with any manufacturer so it is up to you to choose what producer you work with if you decided to take Mannitol.

  • Found it on Amazon. There are many suppliers. My order scheduled to arrive in 5 days. Any dosing suggestions? Is it better to dose multiple times with smaller amounts or one larger dose once per day? I'll journal my results on your site and here on health unlocked.

    Thanks.

  • please write to irit@clinicrowd.info She will give you all the info that we have.

  • Will do. Thank-you

  • Hi Ranico. Good luck with this research of yours on Mannitol. Have you thought of looking for non-medical ways of overcoming Pd symptoms?

    You have to forgive Big Pharma, they are in business to make money. They are not under any obligation to find a cure for anything! If somebody were to find a cure it would cost Bog Pharma an absolute fortune.

    I have been able to successfully overcome most of the effects of my Pd movement symptoms by doing Fast Walking. I was diagnosed with Pd in 1992, and started the Fast Walking program in 1994. By 1998, It was not possible for non-medical people to see that I still had Pd. In 2002 I wrote a book about my story. That was met by strong opposition from the medical profession, who have tried to persuade other patients to believe that I do not have Pd.

    If we patients want to overcome Pd, and there is no reason why we can't, other than other medical problems possibly.

    If you would like to learn more about what I have done then visit my website - reverseparkinsons.net and read all about it there. I am also not trying to make money out of my good luck, but I do have to sell my book in order to pay the costs of running the website.

  • Thanks for your note. This is a very interesting idea to look at non-pharma ways on the platform. We will have to think how to quantify them. We focus on Mannitol now because if it work on people like it did on flies and mice, we are talking about a real revolution and maybe a solution to extinct PD. Soon we want to start a prevention program where we ask healthy people who decided to take a smaller amount of Mannitol to see if it prevents PD after a long period of time.

    There is a lot of evidence that sport, walking biking are extremely helpful to PD, so you are right that someone needs to quantify it in a very large research.

    Thanks for the idea, we will think about it.

  • I have a question. I'm not trying to discourage anyone but just want to understand. I checked and Mannitol has a long list of side effects. Some don't want to take PD meds because of side effects so why is this better? Thanks! Debbie

  • The only medical use I am aware of for mannitol is IV infusion of massive amounts to prevent brain swelling in event of stroke. Kidney failure is a real hazard.

    As to ingestion of small quantities I am not aware of this long list of side effects. Could you post a link, please?

  • Here is the link. Maybe the answer to my question is in the dose? rxlist.com/mannitol-iv-side...

  • Right here at the outset: "Mannitol I.V. (mannitol injection) "

    IV = intravenous, and this is high dose: "The usual adult dosage of Mannitol ranges from 50 to 200 g in a 24-hour period, but in most instances an adequate response will be achieved at a dosage of approximately 100 g/24 hours".

    There is no comparison between this and 10-20 g by mouth.

  • Sorry if i did not explain. We are talking about Mannitol Powder. Not IV. IV is in concentration 100x or more then the powder and as far as i understand can only be given by a Medical Doctor.

    Mannitol in powder, that you can buy in Amazon is GRAS (Generally Regarded as Safe) by the FDA and is approved as a food ingredient since 1972, though as far as we know , it is used mostly in bubble gum more then 60 years. The FDA approval also comes with the following warning. If the product containing the Mannitol is supposed to have a consumption of more then 20gr per day, there should be a warning that it can cause diarrhea.

  • Hi. Ranico im very interested will look into your links thanks for your dedication you must hold your friend in very high esteem I've done a bit of research myself and it's very time consuming and sometimes very frustrating keep positive Sunnysky

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