Thank you for this. what are the benefits that you and your aunt are having?
Thank you. what are the benefits you and your aunt are having?
My apologies for the slow reply/. I do not frequent this forum. I was diagnosed in 2013 by genetic test. I had symptoms including balance trouble, slurred speech, poor handwriting, fatigue, inability to use exercise to increase strength or endurance. All of my symptoms are gone. My aunt and my father were confined to a wheel chair and could no longer use a walker. Within a month after beginning to take trehalose and niagen they were both able to take steps with a walker. My father also suffers from Alzheimers and so was forced to enter a nursing home this year. The nursing home was unwilling to continue to give him trehalose and niagen and within a month he was no longer able to transfer himself to the toilet nor use a walker. My aunt is still at home with my cousin and is still taking just trehalose and niagen. She is still able to use a walker. She is 75 and my father is 80. We all have SCA1.
It is my belief that there are several “micro-nutrients” that are readily available and proven safe that all work towards cleaning out toxic proteins and acting to enhance cellular repair and function, and furthermore the combination of these “micro-nutrients” can slow and sometimes even stop the progression of some neurological conditions. Sadly, I also believe the number of people for whom my ideas may be helpful is actually small compared to the number of people suffering great illness today.
Finally, I know as a fact that these “micro-nutrients” will never be studied by prominent doctors or major drug companies because there is no money involved in selling a sugar supplement or a B vitamin. I know this because I have been to numerous meetings pleading for research, and the answer is a universal “we can’t because of money.” I would note no one ever said “we won’t because there is no basis for what you are suggesting.”
If you are interested in more information I suggest you go to healthunlocked.com and search user name sunvox (that’s me) and then read my posts.
In January 2017 Bioblast Pharma announced results of a 6mth open label Phase 2a study testing Trehalose ( Cabaletta) in 14 Patients with SCA3.
Results were encouraging and showed the SARA scale remained stable. But will need corroboration in a doubleblind, placebo controlled study in a larger group of patients to determine the value of Trehalose in SCA3.
The most common adverse effect in the study was transient and benign glucosuria, lasting for a few hours after infusion of Trehalose.
Trehalose is being developed by Bioplast Pharma for the treatment of SCA3, and Oculopharyngeal Muscular Dystrophy.
The study excluded those people with SCA3 who were Diabetics, people who were suffering from any other major active disease and anyone with marked depression.
Thank you much for replying. It was informative and thoughtful. I would need to know how to get trehalose and niagen and I can do some research to find out about these. I have a brother with the same exact condition and symptoms. I am not beyond trying these although I do note your comment about not working for everyone. I have had this for six years and the last two have been most miserable with no suggestions of anything from my neurologist although I do engage in a fitness effort several times a week just to keep some ability to keep going. I’ll see what I can find out. Thanks again.
Yes, I should emphasize that it is never wise to try anything based on the comments of some random voice on the internet. If you read what I am doing on my post on health unlocked, and you think some of the items may be of interest then the best suggestion I can offer is to print out some of the research that underlies my decisions and take them to a doctor for discussion. Sometimes the items I take have a small amount of human clinical research (none of it related to ataxia) but other times the research is in test tubes and rats. Making the jump from rat research to human results often doesn’t work so it is important to discuss these items with a doctor.
Before I sign off on this thread I want to re-emphasize one point about which I feel adamant. If there is any way for a person with a genetic form of ataxia to achieve 80% of their maximum heart rate while safely using a treadmill for 30 minutes 4 times a week then I am convinced that is the single best therapy available. Research in humans with Parkinson’s showed that such a routine actually helped the patients to stabilize their test scores that showed their condition was NOT progressing, and right along with that research are 2 studies in rats one of which studied rats with Parkinson’s and the other of which study rats with a genetic SCA but both of which induced exercise in the rats and both of which showed that the exercise reduced the accumulation of mutant protein and thus neurological damage JUST from running. Not to mention that there are simply hundreds of studies that have shown over and over how important any exercise is in helping neurological disorders. Bottom line: use it if you can or for sure you’ll lose it. Tragically, I realize that for many people with ataxia their condition is too far progressed to allow for such a high level of exercise.
You can find links to all the research I mentioned above on health unlocked.
I have tried everything as my ataxia has progressed. Nothing has helped, but I keep trying. I ordered what you recommend, and started taking yesterday. Fingers crossed. I will report back on results.
If by any chance you’re already taking prescribed medication, have you discussed this with your doctor, in case of any possible interaction xB
After reading more about trehalose and talking to my neurologist, I’m uncertain about this and would be curious as to how much to take at once or if you add it to certain foods. I’ve tried some niagen and that has some apparent affect, at least for a short time, on my energy and stamina level. Sort of expensive though.
Trehalose is only partially digested in the small intestine by an enzyme called trehalase. In human studies not related to ataxia, researchers found that a small amount of mannitol (another sugar substitute nearly identical to trehalose) can pass through the intestinal walls undigested at a rate of 0.5% to 2%. All that means that 90% or more of what you ingest passes clean through the body. Interestingly the enzyme trehalase is found in the human liver and kidney as well which seems to imply trehalose was somehow important in the human diet of our ancestors.
There is zero, zip, nada, research to help patients with a genetic/polyQ form of ataxia pick an amount of trehalose to eat everyday that might prove helpful. In fact it’s a huge long shot that the tiny amount that could possibly make it into the blood stream would ultimately make it to the cerebellum, BUT I take heart from two salient bits of data. One, BioBlast has a hint of evidence that IV delivered trehalose actually does help SCA patients, and two the patient driven research reported by CliniCrowd indicates that some patients with Parkinson’s are seeing benefit just from EATING mannitol.
I take one heaping Tbs of trehalose in a cup of coffee every morning and once a week I sniff a tiny pinch of powdered mannitol.
Again, I am not a doctor so just because I am doing something does not mean it’s ok to try it. Please talk to your doctor again and perhaps point him/her to this post. I will say that one doctor at the University of Michigan has begun monitoring several pre-symptomatic SCA1 patients that are trying my full routine.
Yes, it’s all downhill for me too. But if you can ride a bike (which I can’t) that’s good news isn’t it?