A leading Israeli neurologist sadly said this about trehalose. (I protected his privacy.) He was involved in its development and isn aware that some people are taking it.
" .. it is completely useless as trehalose is not absorbed orally in humans." N
Neta,
This study proves that what that BioBlast neurologist said is wrong. Humans do absorb trehalose. Whether they can absorb enough to impact ataxia remains a question, but the study I linked below is 100% proof humans do absorb trehalose, and that is new information that has not yet been "absorbed" by the scientific community, and that is why the neurologists at Harvard are suddenly interested in studying orally ingested trehalose.
ncbi.nlm.nih.gov/pmc/articl...
Also, keep in mind if trehalose is orally effective BioBlast will lose billions of dollars.
I feel that perhaps people are unable or unwilling to read the links I post so allow me to summarize my point of posting the link.
In the study that I linked above the researchers demonstrated an improvement in blood flow. The patients were in a "blind study" where some people were give true sugar and others were given trehalose. Everybody was eating 100 g daily of either sugar or trehalose. Only the people eating trehalose showed improved blood flow. Trehalose does raise blood glucose levels so the researchers then investigated whether it was the increased glucose levels that caused the improvement. Glucose did not improve blood flow. So . . . the conclusion was . . . the trehalose molecule was the cause of the improvement. That was not the primary purpose of the study, but the fact remains that this study proves humans do absorb some small amount of trehalose. As a matter of secondary facts that are somewhat arcane, the human body has an enzyme called trehalase. That enzyme exists in the small intestines and is the reason some small amount of trehalose does get digested and raise glucose levels, but the fact that it exists in the small intestine is why it is poorly absorbed. An interesting evolutionary factoid is that trehalase is also found in human kidneys and liver. That means the human body is programmed to digest trehalose molecules that get into the bloodstream.
Trehalose is a VERY interesting molecule.
I think most of us have read enough now to know that for best effect it needs to be taken intravenously. .... but we also know that's not on offer ...... not so clear on why 😉 so until it is 😩in coffee instead of usual sugar can't hurt. Morning all!
Often the so called experts have very different opinions. They are always changing their minds on what is good and bad for you. So read all the opinions and decide for yourself : )
You're not taking it anyway are you?
So I wonder why you have posted this and how you felt when you read this?
And why are you protecting his privacy?
Surely his opinions have already been made public, by virtue of the fact that you have read this?
Is there a link to the article you read?
I don't believe anything good or bad, until I have read evidence.
You have provided no evidence either way and as we are very well aware, having a label of "neurologist" does not give a guarantee of superior/informed /impartial knowledge.
Israelites also believe that Jews should not marry Christians, 60 million people voted for Trump.....
Hope is an intangible state of mind and we all surely come here for a bit of hope, given that there is no cure for this illness.
I read all of the links and research that Joe kindly posted, not even including his own personal experiences...and hope rippled through me.
I exist on a knife edge of despair and hope. Do you?
Do you have any ideas as to anything that does help?
mermaidia 11
Your'e right. It is whatever suits yourself, I have just realised that I am not taking Trehalose in enough quantity , but it seems to be working for me, so who cares!
So here is my take on this. I have hereditary SCA3 which I believe is the type of Ataxia that the IV tests were performed on. I'm 62 and was diagnosed 12 years ago. I do stagger a bit but I'm lucky enough to still have my mobility and do not yet need a stick. I put my slower deterioration down mainly to staying fit and exercising regularly, especially walking fast on a treadmill (I do need to hold on!)
This past 12 months have definitely seen a deterioration in my balance and ability to navigate around at home but this coincides with my inability to maintain my exercise regime due to work commitments.
I have been keeping up to date with the Trehalose debates and the research progress and am certainly hopeful that there may at last be light at the end of the tunnel towards stopping the deterioration further down the line.
But I for one am not willing to wait while my condition continues to deteriorate while there is even the smallest possibility that taking Trelahose orally may lead to some form of help. No-one can actually say how much of the sugar might get through the trelahase barrier that we hold in our small intestine which converts Trelahose into glucose before it gets through to our bloodstream.
If it were a drug I would be more careful. But it is a weak and natural sugar which has existed for years. So less than 3 weeks ago I purchased 2 kilos of the sugar and have been sprinkling 4 teaspoons on my porridge each morning and taking 2 or 3 spoonful’s with each hot drink I have during the day.
I was not expecting to see any noticeable difference until many months down the line....just hoping that maybe I might see an even slower deterioration of the condition. But although it's early days yet my experience has been one of total amazement because I most definitely have seen an "improvement" in my ability to navigate around the house. The improvements are small, and probably only noticeable by myself. Examples are coming down stairs without touching the walls or holding on to the bannister. Not banging into door frames anywhere near as regularly as I was. Being able to take steps almost immediately after standing from a sitting position....normally I had to wait 30 seconds for my balance to stabilise..
I am not advocating or recommending you do the same as me.....I'm just letting you know my experiences so far. It may of course be that the Trelahose is combining positively with some other supplement I am taking daily (I take a lot) but for now I definitely will not be changing anything and will continue to take Trelahose orally whatever the experts say!!
Tony,
You are my hero!!! You bring tears to my eyes . . . literally. If you ever visit the US, I hope you will come stay with me and let me treat you to a king's welcome! I, too, was holding the railing as I was walking down stairs and now I don't. To say I obsess over trehalose is putting it mildly, but yours is not the first report I am getting back. Other people are reporting similar experiences. It seems people with lesser symptoms have bigger results and the amount seems critical as well. Unfortunately, some people's digestion systems seem more tolerant than others. I am able to take 100g daily with no diarrhea, but I know some folks simply look at trehalose and get an upset stomach.
I'm more excited than ever and am saying my prayers that more people have experiences like yours!!
Thank you for sharing!!
Joe
P.S. Here is a study I posted before. This is the study that lead to BioBlast's research and below the link is a quote taken from the study:
Trehalose reduces aggregate formation and delays pathology in a transgenic mouse model of oculopharyngeal muscular dystrophy
academic.oup.com/hmg/articl...
"As one can identify almost all cases at risk, this disease is amenable to pre-symptomatic treatment. If one can delay onset of a disease that typically presents around the age of 50 by 40 years, then one has effectively cured the disease. Trehalose would be particularly attractive for this strategy, given its safety and suitability for long-term use. However, the disease course in mice is very constricted when compared with the human situation, and we cannot guarantee that a treatment that is effective in mice will have a similar effect in humans. Also, such a treatment would need to be administered for decades in humans. Although trehalose is appealing in this context, as it appears to be safe at high doses in rodents and rabbits and is well tolerated at high doses in humans , further studies will be required to test that it is safe when administered over much longer periods."
Tragically that research report was written in 2006 and it's only today we're even getting close to studying orally ingested trehalose for the treatment of SCAs.
Hi Jo, and thanks for your offer……I’ll be on the next flight out!
Me….a hero…..no, I’m just documenting my personal experience of taking Trehalose orally and the ongoing results which so far has taken me by total surprise. I’m praying that the bubble will not burst. I continue to notice the improvements and was thinking more about this last night. By far the most encouraging for me is that I seem to be slowly regaining the ability to correct a stagger in my walk or to not go into freefall when I change direction. Combined with the other improvements currently showing I can’t help but smile out loud when I experience them!
I too have read that some people (a minority) find they have intolerance to the sugar….similar to IBS symptoms. But just to share this too…..I have suffered with apparent IBS symptoms and diverticulosis for much of my adult life and can empathise with any co-sufferers. Advice received from doctors was prescriptive but this had other side effects! So I changed my diet completely and tried different variations. The biggest positive impact was eliminating gluten and dairy from my diet and adding probiotics to my supplements. I follow this on an 80/20 rule so if I’m out and about I am careful but not too rigid with the diet. But it’s definitely working and my IBS symptoms have all but disappeared.
So when I first read about the possible intolerance to Trehalose for those with IBS I was half expecting a negative reaction. But apart from a slight ache (too mild to call it pain) which may actually be caused by something else, given my relatively high daily intake of Trehalose the ache is negligible! And if it is caused by the Trehalose I feel this is a very small price to pay in exchange for the improvements relating to SCA3 that I am experiencing.
In my mind there is no “fix” that works for everyone. We are all unique and each of us may react differently to recommended treatments, whatever our ailments. I can understand why there is caution from certain organisations to advise going the route I have until research regarding Trehalose is complete. But I’m an adult suffering from an incurable and progressively deteriorating neurological condition (SCA3), with no time to wait for this positive research to develop into a potential “cure” within my lifetime. So I am making my own decisions now whilst I can still walk and am using my own judgement of the risk vs potential rewards, which in my case is so far proving to be in my favour.
How are you now? What's your experience with trehalose and which side effects you experienced? Did you try trehalose nose spray and eye drops for better absorption?
Please update
Hi Joe,
I have just ordered some Trehalose - it's worth trying as Tony says it's not a drug and will let you know. I haven't had a genetic test but my family have a history of autoimmune diseases - and I seem to remember reading that Trehalose has little effect on autoimmune Ataxia (but maybe I made that up). I have copied my son on the Oxford Academic research paper you linked as he has recently done a Phd there to ask him what he thinks and any other info he can find out and will let you know - he was born on Mars and continues to live there it seems so it might be several weeks!
Kind regards
Amanda
Hi I have OPMD and have just received my first batch of Trehalose. I'm a 58 year old man and want to give this my best shot. After all its just sugar so what harm can it do! I just want to know how much to take? I was thinking 2-3 teaspoons in water, tea, coffee 3 times daily. What do you think? More, less, about right?
Yeah no name of the guy equals nothing valid thats my two cents
Hi I have OPMD and have just received my first batch of Trehalose. I'm a 58 year old man and want to give this my best shot. After all its just sugar so what harm can it do! I just want to know how much to take? I was thinking 2-3 teaspoons in water, tea, coffee 3 times daily. What do you think? More, less, about right?
Whats OPMD and I have no idea about dosage..what has happened to the Trehalose debate anyway?
do you know trehalose ?
Trehalose and nicotinamide riboside as treatments for ataxia
SCA3 - Oral trehalose better than IV?
