do you know trehalose ?

[4ever2gether]

I was diagnosed with SCA3 some 4 years ago,and yet I am 25 yeas old, recently I have found a medicine named trehalose produced by Bioblast Pharma Ltd can cure SCA3,although yet it is testing,but I still want a try.Do you have any suggestions for me?Thanks sincerely.

[nfor]

Just make sure that whoever is doing the research informs you well on possible side effects you might get. Good luck hope you benefit from this treatment.

[4ever2gether in reply to nfor]

thanks very much ,but i have to TAKE A TRY!

[wobblybee]

Type TREHALOSE in the search box to see previous discussions 🙂xB

[4ever2gether in reply to wobblybee]

thanks

[TonySCA3]

Hi, I also have SCA3.

Yes there has been plenty said about Trehelose in previous threads. I understand it has been going through trials and Bioblast have been using IV method to inject into the bloodstream as the belief is that this is the only way of getting enough of this into the bloodstream (bypassing the intestines which apparrently reduce the amount that reaches the bloodstream if Trehelose is consumed orally). Like you I'm willing to try anything that "might" help to at least slow down the progress of SCA3 rather than wait years for trials to end but this has to be a personal decision based on your own research as taking anything without completion of proper trials will never be advocated by the medical profession and in some cases, not without risk.

However, as Trehelose itself is a form of natural sugar, I have been taking this for well over a year in it's powder form, sprinkling on cereal, adding to drinks etc. But only you can decide whether this is something you wish to try and there seems to be varying thoughts as to what dosage per day appears to make a difference (if at all). All I can say is that I tend to consume 2 to 3 heaped tablespoons a day. It certainly can't be said to be a cure but together with other targetted supplements and plenty of regular exercise I'm convinced it at least helps to slow down deterioration over a long period of time. (Not an instant fix).

But as I say, I cannot put this forward as a recommendation.....what helps one person will not necessarily help another especially as there are so many different forms of Ataxia.

Hope this helps but as suggested in one of the replies, check out the threads which have discussed Trehelose in the past.

Take Care.

[4ever2gether in reply to TonySCA3]

Thanks very much if I do want a try,but where can I buy it cause I am from China.Thanks sincerely.

[TonySCA3]

Hi,

I would expect you to be able to purchase Trehelose powder a lot easier in China than here in the UK as I believe it was Japan who discovered the breakthrough process to extract Trehelose at low cost. See:

en.wikipedia.org/wiki/Treha...

I would suggest you type "buy Trehelose" into your local search engine like Google and research where you can buy online.

[Litty]

Look up mannitol too - apparently very similar x

[Litty]

This MAY help too

healthunlocked.com/ataxia-u...

x