Trehelose

[Stanleyclan]

The latest Ataxia UK update email I just received makes interesting reading. Seems Trehelose pretty much stopped SCA 3 in its tracks during the latest trial..with no awful side effects....just hoping it might be useful for other types! How long till its an available treatment though I wonder......the wait is so frustrating!

[Dressy6]

Great news! The member 2Sunny had talked about this... He was right and should not have been banned. I can't wait to find out more!

[Litty in reply to Dressy6]

Well said!

He was too enthusiastic when he told us but just trying to help and he so sorry he offended anyone - lets hope his way will get it in our body and work? x

[Stanleyclan in reply to Litty]

Did you say you were taking it already Litty? I'm wary about buying it online.......

[Litty in reply to Stanleyclan]

I am and I found a wonderful company that supply it

trehalose.co.uk/trehaloseht...

Unfortunately I have a sensitive tummy and 4 spoons upsets me so I take 2. It is a slow treatment that hopefully works in the background so do not expect to suddenly feel better x

[Voice1]

That sounds positive. 😊

[Toddemallard]

I love that there is hope.

[Toddemallard]

Has anyone tried medical marijuana for ataxiaa relief?

[Hope99]

This does sound such a promising strand of research. 2Sunny provided a lot of info about research in this area. Unfortunately, I think Ataxia UK blocked him from the forum (a bit of a silly spat about him advocating that people to take trehelose orally in tea). However, his posts and links from before he was banned are interesting if you want to read more about the research in this area so far.

2Sunny's take on Trehelose and his general positivity certainly made me feel better about the future.

X

[Mermaidia11]

I concur entirely. 25sunny knew his stuff and provided us with compelling evidence for Trelahose. I got some from Amazon and started taking get and I felt better for it. It was like a hope and a cup of tea! We were all admonished about the dangers of listening to each other and taking potentially dangerous supplements and I have to say, I took unbridge.

He was not, as far as I know, reinstated, despite all of us saying that he should be – and to this day no further comments has been made about this?! Well, apart from one member who said that empty vessels make the most noise, in response to my missive.

For the record, as there is no licensed medication and no cure presently, but taking certain vitamins and supplements do afford us a level of control, independence and hope in management of symptoms.

So take on board what others say, do your research and make an informed decision.

Personally? I have researched and tried and take vitamin E oil, Q 10, vitamin D, trelahose, magnesium - all of these things made me feel a little bit better and I continue to take them.

I'm not taking any of them excessively and have tried many other things and researched lots of other things. But these supplements in particular have a mixture of scientific evidence, anecdotal evidence and perhaps an element of the placebo effect -, all of which have made me feel a bit better!

I recently saw my neurologist who told me to stay clear of 'dirty drugs' and carry on doing whatever it was I was doing, because I was doing really well. (Being virtually unable to walk blind half the time, with waterworks troubles and no energy and unbelievable muscle pain at 42 years old doesn't feel like I am doing very well! and don't get me started on how we are supposed to afford all of this!)

The challenge of circumnavigating all of this and trying to be as well as I can for my children spurs me on. The anger, frustration and pain does ironically force me to never never never give up!

So that's my plan and I'm sticking to it!

Love and light to everyone here - incredibly brave and courageous people you selflessly make the load a little bit easier, despite everything you personally go through on a daily basis . Thank you.

[Mneutz in reply to Mermaidia11]

Hi , my name is Martina and I'm new to this forum. I have SCA type 6. Mothers side has it. Did you get a blood test to see how much of the vitamins you should take? What mg. Do you take of each?

Thank you

[Litty]

Very well said. Let us hope we do not all get banned!

I do not like dredging up the past but this is a new relevant post and the past cannot be ignored.

I have been emailing with the naughty one and his apologies seemed very sincere and genuine. Things got heated but none of us are perfect. I fully appreciate that we need to be told of any potential dangers and risks but we are mostly adults that can decide what to do with our bodies. x

[wildstyler]

Just tried today for first time , going for run tomorrow so we'll see.

[Stanleyclan]

My order hasn't arrived yet....haven't even mentioned it to my husband....might just sneak it in his coffee 😉 call it a blind trial 😆. How much did you take? Let's hope it makes a difference! I think hope is a healer anyway and this seems to have restored that for a lot of us! X

[wildstyler in reply to Stanleyclan]

Hope it works for you, Thankfully it is not very sweet as I gave up sugar in the 60s. I have it in the place of honey on my porridge. Early days yet.

[Mermaidia11]

I take one tea spoon in tea 3 times a day?

I also take vit E oil, q10, vit D vit c, garlic, magnesium and omega 3/krill oil - that's my personal list and all have been benefit your bran, there are plenty of sites on the web about these supplements, what they do and why they help. They should also be able to advise as to what dosage. I am sure that there are lots of other things that help as well. But that's my list and what I have chosen to take.

My view is that the placebo affect also works, I don't care whether it is that Q 10 that makes me feel better, or the belief that it will make me feel a

Bit better...

Vit e seems to be essential and specific for ataxia it is vitamin E. It is more potent in the liquid form.

rarediseases.org/rare-disea...

[Stanleyclan in reply to Mermaidia11]

When my husband was first diagnosed I bought up half of Holland and Barrett! He hates taking pills though so it's all just sitting in the kitchen cupboard. I may try to persuade (nag) him into starting with it again. His symptoms are so far mild......loses his balance and 'wobbles' a little bit but still working full time and trying to keep on with his running....if trehalose and other non medical interventions can keep it at bay a little longer I think it's worth it! Do you have any side effects from the trehalose. ...I've heard it can upset the tummy!x

[Mermaidia11]

You can take a horse to water..!.

I had to be in a bad place to motivate me to do some research and investigate what might help me to support and nourish my brain.

I wish I had exercised more regularly and investigated the supplements sooner… but we are all only human and hindsight is a wonderful thing.

If the vitamins are languishing in the cupboard, then perhaps he isn't ready to start chuffing vitamins/supplements and until he is and makes that decision himself, you may well be wasting your breath and money

My stomach hasn't been upset personally on the trelahose, but but like everything, it's probably wise to build up slowly.

Taking it all needs to be his decision, otherwise he won't get the benefit of the placebo affect either and may well be mightily cross with you?

emedicine.medscape.com/arti...

[Hidden]

Hi all, just discovered publications about trehalose and we going to give it a go with my son. I think we will start with shitake mushrooms and sunflower seeds initially as I want to build it up gently in case of any adverse reaction.

Please keep posting about any improvements!

[Hidden]

Well, I am blown away. 2 weeks ago I started giving my son ground sunflower seeds and shitake mushrooms regularly (apparently they contain trehalose).

Yesterday I noticed that his eye that kept involuntarily sliding off to the side is now almost straight. He had that eye for about 18 months and drs told us there was nothing they could do as he is an adult so patching wouldn't work.

He is also gluten free but has been for 13 years so not recent, and yes, it improved his balance and general health a lot. Also takes some vitamins but that's not recent either.

There is no other possible explanation for the improvement in the eye than sunflower seeds/shitake. Whether this helps to restore gut flora or clear debris from his neuro cells I can't tell, but will continue this regime as there was nothing else left to do.

Anyone else has seen any positive changes??

[Stanleyclan]

I can't get my husband to take it! Infuriating to be honest .....! I'm so pleased that you have noticed an improvement in your son x

[Hidden]

I use 3 tablespoons of ground sunflower seeds in yoghourt instead of cereal with some fruit and a bit of honey, I haven't bought trehalose ready made. As he is gluten free we don't have any cereals in the house at all. And mushrooms for omelette in the morning.