Trehalose?

[neta]

What happened to this product? (Trehalose) Did I miss something?

[wildstyler]

I started using this a week ago, realistically it is far too early to say, but I went for a 5 k. run this morning , and I managed to knock a minute off the previous time, but it's too early to say, I think it needs at least 6 months. The most difficult thing about it is that it is only a sugar supplement, and I don't use sugar !!

[JP66 in reply to wildstyler]

I have been trying for months to get a researcher interested in studying oral trehalose. I contacted the NAF research department and two of the lead scientists on the NAF board. I was told the NAF was not interested.

Yesterday I contacted Harvard Medical. This is the response I got:

Dear Joseph - thank you for sharing your experience and the papers. I have heard of trehalose for ALS and am interested in learning more. A few questions

how did you pick dose to take? Can trehelose be taken orally? Any advice on where to obtain. There are a few patients I would like to share this information with while we figure out next steps.

I would like to connect you with Dr Schmahmann who is our SCA expert - there is also a new ataxia network forming very interested in clinical trials- he is part of that.

I would be interested in pursuing this also possibly in als.

I will ask my HD colleagues also for input. More soon. Tx for your help and answer to above questions. Merit



Merit Cudkowicz, MD

Chief of Neurology, Massachusetts General Hospital

Julieanne Dorn Professor of Neurology Harvard Medical School

15 Parkman Street ACC 705

Boston, MA 02115

I am excited for the future and hold out great hope that a serious medical research facility may consider an investigation of orally ingested trehalose as a treatment for neurodegenerative diseases. I am now also in direct contact with Dr. Schmahmann.

[neta in reply to JP66]

Dear Joseph,

Thanks for your response. I already asked this question but got no answer; Is Trehalose responsive to other CA's not just SCA? How much does one take and where does one buy this? N

[wildstyler in reply to neta]

trehalose.co.uk

[simon111 in reply to JP66]

Hi

Can you tell me will it potentially help my 13 year old son who has Friedrich 's ataxia

Thank you

[JP66 in reply to simon111]

Hi Simon, Trehalose works by cleaning out mutant protein through a process known as autophagy. FA is the result of the opposite. FA is caused by inadequate frataxin production so the bad news is "no" trehalose would not likely be of help, but the good news is FA is very heavily researched and has a host of clinical trials going on right now. You are probably already familiar with the cureFA site, but it has a great list of current "pipeline" treatments. I was reading up on some of them yesterday such as EPI-473. If you haven't done so already, I would spend some time investigating the drugs listed and reading as many scientific papers as you can. It doesn't matter if you don't understand the details. Just read the abstracts and the summaries because often they will lead to other discoveries and maybe, just maybe you can find a clinical trial that would be of benefit to your son.

I just did a quick search now and found a paper that might be worth discussing with your son's doctors. Perhaps there will be a clinical trial in the not too distant future because cytokines are already in use for other diseases:

ncbi.nlm.nih.gov/pubmed/280...

Cytokine therapy-mediated neuroprotection in a Friedreich's ataxia mouse model.

but you would be amazed how much information is out there if you spend some time researching!!

curefa.org/index.php

ncbi.nlm.nih.gov/pubmed

clinicaltrials.gov/

[simon111 in reply to JP66]

Hi JP66

Thank you so much for advise and links

Simon

[Zigalig in reply to wildstyler]

Hi Wildstyler, I have recently gone sugar free so was wondering about taking this, but the effects must be better than progressive ataxia! I went gluten free shortly after being diagnosed years ago and that made a huge difference.. What dose of Trehalose do you take? I am impressed you can run still, I stopped running but walk loads. I always explain to people that when I first started running years ago it got easier each time I ran but now even walking I don't seem to be able to build up any stamina.

[wildstyler in reply to Zigalig]

I take a table spoon ( about 100 -110 grams ) a day, I use it in place of honey on my porridge.

Previously I ran London Marathon, not very fast, so my body still thinks it can do it, so I let it believe that. However I am glad you are impressed ! As I said ,realistically it needs longer to be certain.

[neta in reply to wildstyler]

walking, running... I always have a wooziness in my head (when standing up) which leads to imbalance. Voice and swallowing issues too..I thought these were the hallmarks of ataxia. RE Trehalose, I am not in Britain. Is this sugar available in most health food stores? And where in Britain? On line? In a store? LN

[wildstyler in reply to neta]

Yes Neta,

On line eBay or trehelose.co.uk I'm sure they ship

[wildstyler in reply to Zigalig]

P.S. I find trehelose only slightly sweet.

[Mermaidia11]

Use magic amazon and I take 4 spoons a day

Joes testimonial was enough to get on it and I feel better for it .

Can barely wall nevermind run, and wish I had have done when I could! Respect to anyone who still has enough capacity to run or jog or walk.

Use it or loose it eh?

[wildstyler in reply to Mermaidia11]

I said I do it, I never said I was good at it, anyway there is only me who calls it running. If I get any slower I'll get done for loitering.

[neta in reply to wildstyler]

Your approach is amusing.I ran in place for 1/2 an hour daily-- this was well after I was told that I had CA. But I stupidly gave it up when I had to hold onto something. Now I am trying to rejigger it and its tres hard.

[wildstyler in reply to neta]

If you ran for 1/2 hour daily. Well done you!

[neta in reply to Mermaidia11]

Dear Mermaidia 11,

Noticed a stoney silence from NAF and from Ataxia UK on this subject. Nor has my neurologist responded. I wonder why that is?? R U saying it is helping you now?

[Mermaidia11]

Yes I am taking it now and yes it has helped my darlin! I'm doing some stretches in the garden as we speak. I could barely get dressed last month!

I think the vitamin a oil has also really helped, apparently people with ataxia have a shortage of it?

And thanks wildstyler, I've just spat my tea out with laughter after your comment about Loitering!

[JP66]

In human toxicity studies researchers found that people's reactions to trehalose varied considerably but diarrhea was a very common and unfortunate side effect. Also in the clinical trial that showed benefits for vascular health some people gained weight because of the extra calories. The subjects in that study were eating 100 g or about 4 heaping tbs a day and each 1 g of trehalose is 4 calories so the patients were eating an extra 400 calories a day and some folks found it difficult to either cut back in other places or increase their activity level.

[neta in reply to JP66]

Dear JP66

R we talking about the same thing?

Here is a response from a professor/neurologist in Israel who knows Trehalose. N

Dear Mrs H

Not sure if indeed you have autoimmune cerebellar disease or some form of hereditary ataxia.

At the moment IV trehalose ( humans do not absorb it orally) is not available for patients out side formal trials.

But whenever such trial will be activated in ataxia patients it will not be for those with autoimmune disease, only certain forms of hereditary ataxias (SCA syndrome).

Regards

Prof ----(removed personal details) N

[JP66 in reply to neta]

Hi Neta, Sorry for the slow response. Yes that is the same sugar. The professor is stating the same belief that 99% of doctors and researchers hold regarding trehalose. They all are under the impression that humans can NOT absorb any trehalose when it is taken orally. Until very recently there was no evidence otherwise, but that was why I was so excited by the study I posted in one of the other threads. That study proved humans CAN absorb trehalose when it is taken orally. The million dollar question is whether humans with SCA, HD, Parkinson's, or Alzheimer's can absorb enough to make a difference.

I believe the answer to that question is yes, and now researchers at Harvard Medical are intrigued enough that they may finally study whether or not orally ingested trehalose can be effective in treating some neurodegenerative diseases.

It is critical to note that right now orally ingested trehalose is unproven as a treatment AND the way it works if it does anything is by cleaning away the bad proteins in the brain. It wouldn't do anything to repair damage already done. The hope is it stops or at least slows the progression of ataxia. I agree with Lit that "it can't hurt" so that's why I shared my information. Personally I believe it will help many people. Sadly it will not help everyone because "ataxia" is really a name given to a whole host of diseases not all of which involve bad proteins in the brain.

Finally, I would add that the fact that trehalose can't repair cellular damage is why my father and I and my aunt or also taking 1000 mg or 4 125 mg pills twice daily of Niagen (nicotinamide riboside). I am NOT suggesting others follow suit. I am just sharing what I am doing.

Hope that makes it all "clear as mud".

Joe

[simon111 in reply to JP66]

My 13 year old son has fa will it help him

Thank you

[Pheobe13]

If this wonder drug is so good why aren't doctors prescribe it ? As we well know when nerves in the brain are damaged they can't be repaired so how does it work when you have progressive ca ??? And now developed msA which I can reassure you it is far worse !

[simon111]

Hi

My 13 yr old son has fa

Will it benefit him

[Litty]

There have been several recent interesting posts on the topic

I am taking a good heaped tablespoon twice a day and I get it from trehalose.co.uk/trehalose. Unfortunately I have a rather sensitive tummy but my thoughts are it is worth taking in case it works.

I do not take sugar in my tea so just dissolve some in the bottom of a beaker. It tastes fine and just like sugar. I think it takes several months before you notice a change but it is harmless so worth trying.

Hope this helps : )