Dear Friends, in the last post i told you about my journey to find a remedy for my childhood friend. In this link you can see a video from Channel 1 in Israel, with patients that took Mannitol and they talk about their experience. I have translated it into English so you need to click on the CC (Closed Captioning) button on the bottom right side and choose English. youtube.com/watch?v=63_xY8q...
You will hear testimonies from the ex Commander of the Israeli Air-Force (General Avihu Ben-Nun) who has PD for nearly 20 years, and from my friend Danny.
If you decided to take Mannitol, it is very important that you report back so we can help each other do what the Pharma companies will not do for us. We have reached nearly 2000 PD patients taking mannitol mostly from Israel and we would love to share our knowledge with our American friends and all the world clincrowd.info
My gas and cramping almost stopped after 10:12 days. I'm taking it once a day in the morning in my coffee and it's okay. I think your system must get used to it and probably produces what it needs to stop the gas.
Great. Please tell them that it is very important to fill the survey every month. This is the only way we can come back to the community with results. clinicrowd.info
I can tell you that the gas problem of Mannitol exists in about 50% of the patients and disappears in 2 weeks. Some patients, who learned from other people experience, started with a lower amount at the beginning and gradually increased to the full amount and reported no problems (some also complain in the first 2-3 weeks on small stomach pains). After you get used to it there is nothing. In any case, we want to test on the Mannitol that is available to everyone, and from any brand, so no one can decide to raise the prices with exclusive patented formula. This is why we do not sell anything ....just a service to the world.
Please inform what is the "full amount" per day. I assume from the video it is 1 tsp/2 times per day. Is 1 tsp equivalent to 10 grams? Is it better to ingest all at once or divided between two doses? Better to be taken on empty stomach or with food?
Thank you for posting this info. I am going to give it a try. However, I could not access the reporting site to note results.
the reporting site is clinicrowd.info. At the end of the first survey you will get the amount per day...also, if you have questions contact irit@clinicrowd.info Please fill the survey every month. Without it we can never know how effective Mannitol is and to whom. Thanks.
I have no need to use mannitol as therapy. I have/had chemically induced parkinsonism and it is well controlled using mitochondrial energetics....coq10, B vitamins... My condition is not progressive and its early manifestation was successfully reversed - hence I do not have PD, like my father did. I study current and emerging therapies and dispense discovered information when appropriate. After studying mannitol I concluded there may be a theretical way to make it work better - add DHA to it. If DHA omega 3 did increase the absorption of mannitol a lower dose would be more effective and its associated side effects, flatulence, would be lessened. Here is the link:
Thanks - I have introduced NAC and the other anti-oxidant blend from vitacost (acetyl N carnitine etc) into her regimen.
She was taking min dose but I felt her comprehension became better (touch wood) during my ph conversations with her . There has been a lil gap but restarting again from this week .
Her physicial energy doesn't seem to be changed by any of these modalities though .
Might try to introduce mannitol soon .. she is taking omega 3 - so hopefully all of it together will do something
My mom is taking sinemet along with mucana - do we need to minimize her meds when we give this ? I am assuming no drug interaction with the meds as well as the anti-oxidants that we are giving her - like NAC, etc
None of the above interacts with sinemet/mucuna though any amino acid, including NAC, should be taken at separate times from levodopa because any amino acid would interfere with the amino acid levodopa for absorption. Just like not eating heavy protein meals for breakfast and lunch so they will not interfere with levodopa.
I posted a thread about liquefying Sinemet to make it more efficient and the same can be done for mucuna pruriens too. Basically, add 200 mg of vitamin C with every dose of mucun/Sinemet in a liquid form. Here is the thread:
I am a strong advocate of experimenting with drugs that appear to slow the advance of PD... particularly those which are currently in Clinical Trials, have proven to be safe and to have efficacy ( but have not emerged from Phase III testing). This is particularly important as some of the Clinical Testing has been very slow to get started or pushed off to next year (as Nilotinib has been, for example). One gets the impression from some organizations involved with PD...that those of us who have PD have all the time in the world... Maintaining a database accessible to all of reported experiences is extremely valuable. We need to keep in mind that Big Pharma primarily is looking for the "silver bullet" cure that they can charge 5K a month for . . .
That's an issue we are trying to fix. In Israel some of the patients who decided to take Mannitol set up a Whatsapp group that has more then 250 patients...we are trying to look for a solution in our website
Hi Ranico, this is such an exciting venture and I thank you for being so proactive. We have just ordered my husbands first batch of Mannitol. Does the Whatapp group have a name? How can we join and speak ot others ? Also when are the first results out? I heard soon? Thanks so so much.
The whatsapp team is in hebrew...but if you join, and ask questions in english , people will love to answer. Please send me your whatsapp phone to rani dot cohen at gmail dot com and i will make sure you will join.
My mom is taking sinemet along with mucana - do we need to minimize her meds when we give this ? I am assuming no drug interaction with the meds as well as the anti-oxidants that we are giving her - like NAC, etc
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