So a year ago Neta posted research she found on a sugar called Mannitol but I was too dense to catch on until now. Chemically speaking mannitol is almost identical to trehalose and surprise, surprise it was shown to do the same thing in people with Parkinson's that trehalose is believed to be doing in patients with SCA3 that are in the BioBlast clinical trials namely stop protein aggregates from killing cells by cleaning out the bad protein before it becomes harmful, but what's so cool about mannitol is that real people are reporting real benefit. I have an email into some of the researchers involved in the study I linked below and can't wait to hear back plus I found this incredible website that is all about creating research started by patients and only for patients. It could really be a fantastic resource! Anyways just sharing today's discovery.-
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And to Neta - I am so sorry I didn't pick up on this sooner. You should have bashed me up side the head when I didn't catch on
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I should note that trehalose has 4 calories per gram while mannitol has a mere 1.6 calories per gram and the patients on clinicrowd who are reporting positive results are only taking about 10 - 15 g per day of mannitol - that's 16 calories of a sugar substitute. I think I can handle adding that to my list of supps!
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As always though the benefit appears to be highly variable amongst individuals which is not surprising given the variability of intestinal permeability as well as the variability of mutant protein production and existing damage in different patients. To me this is just like trehalose in that even if a person tried it and saw no visible benefit, it could be cleaning out some bad protein anyways and simply slowing the progression which of course would be virtually impossible to detect.
Well, thank you sunvox for clearing that up. My husband with PD (but with some Ataxic symptoms in my opinion) took Mannitol but it didn't agree with his stomach. So I posed a question on here about the difference between mannitol and Trehalose but didn't get any answers. Anyway I bought some Trehalose a few months ago which he has been taking every day. Can't say I've noticed any difference in his symptoms but at least it's easier on his stomach.
Glad to hear the trehalose is easier on his stomach. You might try a smaller amount of mannitol to see if he can tolerate it. Also, I suspect for the vast majority of people they would not "see" any changes, but it's highly likely it is slowing progression which would be undetectable. A few calories is a small price to pay for possibly slowing this disease down.
Interesting thought. Trehalose IV was patented by BioBlast for the treatment of some ataxias, and the company is expecting the price to be well over $100k per year with treatment being required weekly for life.
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Mannitol IV is available for treatment of several different problems today including intracranial pressure relief for children with head trauma as well as several other medical issues. It costs wholesale about $200 per injection. If mannitol does the same thing as trehalose with regards to acting as a chemical chaperone that can remove misfolded proteins then that would pose a disaster for BioBlast.
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What a shame no one is running a simple study to see if a fruit fly model of SCA3 can be cured with mannitol.
I'm not sure because I don't know if there are any misfolded proteins associated with the damage in your body. On the other hand I think the handful of studies on Niagen all show an incredible ability of the new B vitamin to repair DNA damage so that would most definitely be something I would discuss with my doctor. The type of dosage used in the animal models would translate to a fairly high dose in humans so you should definitely discuss it with your doctor if you were interested because previous attempts to use different forms of NAD+ precursors like niacinamide/nicotinamide have made some people very sick. Regardless, I would most definitely talk to my doctor about Niagen and perhaps NAC.
I have no idea if you received my response In short...I live in Israel (but also in NYC where I will be this week. I re-watched the link. It was filled with serious people. But why is there no follow up??
There is an Israeli run website called clinicrowd.info. They are doing an incredible job of compiling information from actual PD patients who are taking mannitol. It is taking time to collect accurate information, but I expect to hear more in the coming months and years.
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Do you fly on United Airlines from Tel Aviv to Newark? I fly that route as the pilot 2 or 3 times a month.
No. There is a long chemical reaction that results in the production of NAD+. NAD+ IS the end component necessary for cellular activity. Along the chemical chain there are molecules that are part of the reaction. They are called the "precursors". The most common and perhaps oldest know is niacin but there is also NAM, NR, NMN, and NADH. NADH is a precursor.
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