So, there is a gentleman who inspired my regimen. He has Huntington's Disease, but he is now almost 20 years beyond when his mother first had symptoms, and he is eating 75 g per day of trehalose.
I may up my own intake from 40 to 50 g per day 
P.S. I would also note that he is still taking "blueberry extract" which is what pterostilbene is.
Trehalose also delays the progression of ALS, but you have to start early.
scholar.google.com/scholar_...
Thank you joe. I have taken treahalose everyday, only not as much. One thing i may add is that too much trehalose will make you diarrhea, the threashold may specific to individual person. Enjoy trehalose.
I read this with an open mind and ordered some trehalose only to discover that at 100mg a day the £11 tub I've bought will last less than 5 days, so that's not a realistic option for us, or most folk who will read this thread. I do admire your drive, you have the type of mind that can gather, disseminate and utilise information that many of us are not in a position to begin tackling and as a community we need folk like you. I am quite sure that in time much of what you share will become more accessible, and please don't interpret this as raining on your parade, I am maybe drizzling a wee bit ( I am Scottish, we do rain so well) but I am a wee bit disheartened that even a possible sweetener therapy is beyond our reach, c'est la vie!
Hi Jen -
You can purchase trehalose here in bulk and it costs about 11 pounds per kg.
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trehalose.co.uk/trehalose-2...
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Also, I think 100 g per day is very high. I think 2 -3 heaping Tbs or about 40 -50 g per day is plenty which would end up costing 13 - 15 pounds per month. I can not imagine how difficult your position is in having a daughter that needs your complete support.
Also, only because it is cheap and many folks have had a positive response from it including another child with Friedrich's Ataxia, I might suggest you consider discussing High Dose thiamine with your daughter's neurologist. It seems 2 -4 g per day is cheap and there is an enormous body of research showing that thiamine even at doses way higher than that is not harmful to humans, and maybe, just maybe it too will help slow the progression.
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If you need links or printouts of related research to share with your daughter's neurologist I will more than gladly print out such and send it to you in Scotland.
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God Bless you and the work you do to help your daughter.
Joe
I would point out one very interesting tid-bit of research. It was only one patient and the doctor in question is somewhat of a fanatic when it comes to his ideas on thiamine, BUT the paper seems to have tantalizing data. High dose thiamine actually stopped progression in a patient with SCA 2.
Anyways, just a thought:
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Thiamine and spinocerebellar ataxia type 2
Antonio Costantini, Maria Immacolata Pala, Marco Colangeli, and Serena Savelli
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Hi Joe,
Wondering if i can get it in Pakistan too? please help.
I am intending to add this in my current regimen.
Thanks in advance.
Hi Kuchee,
Try searching for vitamin B1 instead of "thiamine" or "Solgar". My guess is it exists in Pakistan but may have a different name. You want B1 made with "HCl" also called hydrochloride and NOT thiamine mononitrate.
I have AOA2, will trehalose benefit me, and how?
Thank you for good information.
I'll take it from today.
15-25 g of trehalose daily? I'll eat.
I live in Korea
53 years old male
sca3
Started in February 2019 and confirmed in July 2019.
I am currently taking tasigna.
Tasigna is effective for patients with sca.
We will often visit here often to share good information.
Seelos Therapeutics Receives Notice of Allowance for an Additional US Patent for Trehalose (SLS-005)
PRESS RELEASE GlobeNewswire
Dec. 4, 2019, 08:00 AM
NEW YORK, Dec. 04, 2019 (GLOBE NEWSWIRE) -- Seelos Therapeutics, Inc. (Nasdaq: SEEL), a clinical-stage biopharmaceutical company focused on the development of therapies for central nervous system disorders and rare diseases, announced today that it has received a Notice of Allowance from the United States Patent and Trademark Office (USPTO) for Seelos' U.S. Patent number 10,493,023 (Application number 14/889,727) titled: “TREATMENT OF PROTEIN AGGREGATION MYOPATHIC AND NEURODEGENERATIVE DISEASES BY PARENTERAL ADMINISTRATION OF TREHALOSE” (SLS-005).
There are several neurodegenerative conditions related by the commonality of protein aggregations including Sanfilippo syndrome, Oculopharyngeal Muscular Dystrophy (OPMD), Spinocerebellar Ataxia (SCA3), Parkinson’s Disease, Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease, Huntington's disease and Friedreich Ataxia (FA). The USPTO granted Seelos a patent for treating FA with trehalose in July 2019.
Seelos was previously granted orphan indication from the United States Food and Drug Administration for SCA3 and OPMD for trehalose as well as Fast Track designation for OPMD.
About Trehalose
Trehalose is a low molecular weight disaccharide (.342 kDa) that crosses the blood brain barrier, stabilizes proteins, and importantly activates autophagy which is the process that clears material from cells. In several animal models of diseases, associated with abnormal cellular protein aggregation or storage of pathologic material, it has been shown to reduce aggregation of misfolded proteins and reduce accumulation of pathologic material. Trehalose activates autophagy through the activation of Transcription Factor EB (TFEB), a key factor in lysosomal and autophagy gene expression. Activation of TFEB is an emerging therapeutic target for a number of diseases with pathologic accumulation of storage material.
Im curious - did you see this (oral trehalose) ?
prd-journal.com/article/S13...
Trehalose and nicotinamide riboside as treatments for ataxia
What (if any) treatment are you getting for your Ataxia
Any hobbies or pastime recommendations please.
Dizziness upon walking
