Never take anything without first consulting your doctor and doing your own research.
Now to the day's news.
For those not familiar with my regimen you can click on my ugly mug and read all my prior posts and replies for a better understanding of what I am doing. Suffice to say that 2 of the supplements I am currently taking are Niagen (a type of vitamin B) and Pterostilbene. Sadly the human research directly related to SCA1 is non-existant. All the research is ancillary or animal related, but obviously that has not dissuaded me from trying both supplements. Today I came across some indirect human related research and additional animal research.
First here is a study of studies. In this paper the scientists reviewed 3 other studies that examined patients who were diagnosed with PD and came to the conclusion that a diet high in vitamin B6 had delayed the onset of symptoms:
Associations between B Vitamins and Parkinson’s Disease
(interesting side note - one of the studies found that patients who drank a lot of coffee were among those with delayed onset of PD and they pointed out that coffee is high in the vitamin B niacin - I am well past the age of expected onset for SCA1 but I have no symptoms and I have been drinking 2 cups of coffee a day since college) Anyways . . .
The next study of interest examined treating patients with Friedreich's Ataxia with Resveratrol. The researchers found no impact on the production of FA's missing protein which was what they were hoping for, but they did find an overall neuroprotective benefit in human patients with FA. Pterostilbene is 20 times more bioavailable than resveratrol and stays in the blood 7 times longer but has the same impact on cellular function:
An open-label trial in Friedreich ataxia suggests clinical benefit with high-dose resveratrol, without effect on frataxin levels.
Finally there was a study in flies used to model SCA3 that were treated with a combination of Caffeic Acid and Resveratrol. The treatment reduced the damage caused by the bad atxn-3 protein by acting as an "anti-oxidant":
Treatment with Cafeic Acid and Resveratrol Alleviates Oxidative Stress Induced Neurotoxicity in Cell and Drosophila Models of Spinocerebellar Ataxia Type3
Joe- Thank you for always sharing the research you come across! There is such positive preliminary evidence. We all pray the research continues and progresses in the fastest possible time...
I log in every morning in the hope that you will have posted another little ray of hope to start everybody's day off in a positive way. Thank you Joe.....although my husband may not agree.....looks like there might be another vitamin added to his daily collection. On the plus side he loves coffee....drinks gallons if it....and his symptoms are much less than his brothers....who I don't think is such a coffee addict...? Who knows....one day hopefully soon we will have the answers! X
Hi P - In my primary post on Niagen there are several articles that outline the major purported benefits of Niagen versus Niacin. First is the fact that Niagen does not cause flushing, even at high doses. Second, is the fact that Niagen is Sirt1 activator and Niacin is a Sirt1 inhibitor. This second fact is not 100% seen as a benefit. The research on Sirtuins and neurodegeneration is not absolutely conclusive as there are a couple studies that showed negative effects from Sirtuin activation, but for me the number of positive studies outweighs the negative studies. Also Niagen has real and recent human trials that show it dramatically increases NAD+ at a mere 300 mg per day. The only downside to Niagen is cost. Niacin is much cheaper. The question one must ask is how much they believe Sirt1 activation is beneficial and/or is one prone to flushing when taking Niacin. I take 375 mg per day of Niagen.
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Thiamine - well my bottom line is quite simple. As I mentioned in my primary post here:
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My SCA1 progression has stopped. My alternative therapy for SCA1
I believe neurological disorders like PD and SCA and Huntingtons and Alzheimers, etc. all lend themselves to a multi-pronged approach with each "prong" attacking a different element of the process making us sick. That is the whole point of this doctor's presentation and research:
Without a doubt thiamine is having a positive benefit for some patients, but what I think is truly unfortunate is that some folks are looking at thiamine as a one pill cure or at least ignoring some of the other equally beneficial supplements like mannitol, Niagen, and running 30 minutes per day. Also it bothers me that I can not find research that would offer a clear explanation as to WHY thiamine may be as beneficial as it appears to be in some cases. Lastly it REALLY bothers me that Dr. C hasn't posted any hard numbers although he has supposedly treated upwards of 2500 patients with his thiamine protocol. If that's true I would hope that he could say x% had y change in their UPDRS, but sadly no such information is available, and THAT makes me deeply suspicious that the big benefit is confined to a small subset of PwPD. Bottom line: I take 500 mg of Solgar brand thiamine HCl twice a day and will continue to do so until some study comes out proving thiamine is no better than a sugar pill, BUT I also will continue with all the other supplements and lifestyle routines I list in my primary post.
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I'd love to hear about anything you have tried or are trying and your experiences as well!
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