So yesterday while just doing a general search I came across an old bit of news and a new clinical trial that I was surprised I had not previously uncovered. First the study:
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Effective treatment of mitochondrial myopathy by nicotinamide riboside, a vitamin B3
In the study researchers cured mice that had a genetically caused disorder that impacts the brain in a way that has similarities to what happens in Parkinson's affected brains, and they did so by feeding the mice Niagen . . . not niacicn or nicotinamide . . . but nicotinamide RIBOSIDE, otherwise known as Niagen.
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That's interesting right, but once again if only I were a mouse life would be great, but wait . . . there's more.
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That idea has now been taken to the clinic and is about to be studied in humans:
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Nicotinamide Riboside and Mitochondrial Biogenesis
So looks like pretty soon we should get some very interesting data on what NR can and can't do in HUMANS! Also interesting is that the dosage will be 10 mg/kg taken twice daily which for me would be about 1300 mg per day total. (Currently I'm taking 375 mg twice a day or 750 mg total.)
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Anyways, for those that don't follow my posts regularly here is a link to a more complete discussion of Niagen:
I had been intolerant of nicotinamide riboside but recently decided to give it another try. I can report some improvement in motor impairment. I also started vinpocetine at the same time so it is not clear which was responsible.
I believe you are still under a year on HDT also? If that is correct, could the improvement also be related to HDT since people are reporting benefit from HDT beyond a year?
Yes I started high-dose thiamine in March. Prior to starting the above supplements I felt like improvement had plateaued. But who knows – so many confounding factors in play for a single individual.
I’m sold on Vinpocetine, ParkBear. This due to your comments about 2+ weeks ago. I’ve noticed my mild and intermittent tremor relatively gone for the most part plus an international calm body.
After much success with B1 since April I finally found my new correct dose of 1000mg daily down from 2000mg daily. Adding Vinpocetine in November has furthered my almost normal feeling, not perfect but pretty darn close.
My question: could the increased blood flow to the brain from Vinpocetine be responsible for tremor reduction and broader movement.
Thank you very kindly - your report is very useful. It is helping me to understand which these supplements is resulting in benefit.
Vinpocetine has been shown to reduce elevated inflammatory markers in the bloodstreams of Parkinson's patients . So it is an anti-inflammatory. It appears that alpha-synuclein is also related to inflammation, so it makes sense that an anti-inflammatory would be helpful.
The part that was confusing to me was the vinpocetine study showed it resulted in an improvement in mental state but was not better than placebo in relieving motor impairment. Based on your report and my own experience I believe that it does improve motor impairment. In my own case the Niagen did not help on a previous occasion, So I am inclined to think it is the vinpocetine, especially since my experience is similar to yours.
I tried Niagen for sometimes , but in my opinion it was only waste of time and money .Just in the beginning gave me a rush of energy. That’s all I noticed.
The (HDT+ Keto + Mg+ D3/K2 + Omega 3)regimen has the best outcome as far as I know.
It seems that many have found successes with similar regimens. The biggest difference I have is CoQ (1200), Which Dr. C and I joked is likely helping my complexion, but doing little for my PD. Actually though, I feel that it has also helped my night vision when driving. It was my very first supplement and there was a direct correlation. Sadly still on my B1 break until this Saturday. It does seem that I was experiencing negative effects due to too much... Even though I am on so little compared to most posting (20mg every 7-days) but still feeling the benefits so that is what is important. I just cant help to wonder why we all respond so differently? Thank goodness Dr. C is so patient. Could you explain to me how the mannitol helps? I know it is a diuretic (I am so thirsty all the time already) and my initial thought would be that a diuertic could increase the liklihood of constipation. But this does not seem to be the case. How does this help you?
Thanks Joe, The information provided by Clinicrowd is promising and worth further exploration (and the science of Parkinson's is great! )
I went back to see what I was reading on Mannitol, and the first few hits all refer to the diuretic properties. I am so thirsty now that taking a diuretic makes me think I may shrivel into a raisin. However, I am pretty open minded about most supplements, (I prefer starting them 1-at a time for several weeks to determine effects) and will likely give this one a shot. Looking forward to reading more. Thank-you for the direction. ~jenn
That’s right. I do mostly indoor cycling. The intermittent fasting is still ongoing everyday with a semi/soft ketogenic diet. In general I think , keto is a very good dietary option for people with PD. How are you doing?
Hi Chris- I will wait to see the results before making any changes. I did take 1000 mg a day for several months, but I decided to back it down slightly because the slim existing human research seemed to show that once you get above 300 mg per day the increases in NAD+ become less and less on a per mg basis. I was at 500 mg for awhile, but at that dose I think I actually started to feel symptoms again so I upped it back to 750 and I feel like that made a difference. It's all so impossible to know for sure because there are so many potential factors. All I can say absolutely is that all my symptoms are currently gone and I feel great. So I have a strong belief in my own total regimen. (I should note I do NOT have PD but rather SCA which has many similarities to PD but is usually faster progressing and always fatal.) Joe
I am not on a keto diet. The papers that I have read on the ketogenic diet lead me to believe that a) it is not safe long term, and b) the reason it proves beneficial to people with neurological disorders initially is because it causes the body to increase production of NAD+. To me that implies one should take Niagen and eat a "healthy" diet rather than go keto and eat large amounts of animal fat which I believe is unhealthy over a long period of time. To me a healthy diet is low in calories, low in carbs, includes lots of vegetables especially those rich in sulforophane, and has protein and fat from fish, nuts, and lean chicken, and has very sparing amounts of processed foods, sugars, dairy, or red meat.
And, yes I have a wonderful and large group of family and friends. I count myself as enormously blessed regardless of my diagnosis. After the initial shock, I came to grips with the illness when I realized it is a late onset type of disorder, and with a little luck I should be able to slow it down enough so as to consider my life span to be "normal".
I keep a post on this forum updated with everything I am doing and all of the relevant research as to why I am doing what I am doing. All of that in hopes others might find something in my routine helpful for them as well:
As with so many parkinson's "remedies" I'll never know whether the progression of pd would have had the same trajectory had I been taking the Niagen/Pterostilbene or not. I can say that I've had pd for 15 years and I'm still very mobile and stiffness and tremors are relatively minor. Maybe I should attribute the slow progression to the consumption of large amounts of chocolate and laughter. But who knows?
250 mg of Niagen (nicotinamide riboside) one per day; 50 mg pterostilbene one per day. The Niagen is pretty expensive. I found the best prices are usually on Amazon or Swanson's.
Hi Sunvox and thanks for your post. My husband has been taking 500mg a day. He started it when you first posted on NR 8 months ago. Can't really tell if it has made a difference, but he will continue taking it till. . .further notice.
Unclear. The latest research done in mice showed a worsening of conditions when the mice were treated with niacinamide. The paper discusses the fact that although niacinamide increased some positive neurotrophic factors that was outweighed by the suppression of Sirtuin 1 which is a key factor in cellular survival. It has long been known that the major difference between Niagen (nicotinamide riboside) and all other forms of B3 is that Niagen enhances Sirtuin activity while the other forms of B3 are all Sirtuin inhibitors.
Thank you for your updated profile and all the information you provide us.
Should it be a concern that its a single study in conflict with all previous studies which the authors state explicitly is because they used a different rat model (lactacystin instead of MPTP) and administered nicotinamide at a different time point in the degeneration, i.e., not exactly apples to apples?
"The key difference between these previous studies and that presented here is the toxin used to induce dopaminergic degeneration within the SNpc."
I have 3, count 'em 3, unopened bottles of niacinamide. Don't make me throw those away.
Thanks for the compliment. I learned from the best.
True only one study of the specific issue of Parkinson's, but there is a ton of research showing all other forms of B3 are Sirtuin inhibitors, and there is an equal amount of research on the benefits of Sirtuin enhancement in neurological disorders. As with so much else, the science is not precisely attuned to our needs so we end up having to draw conclusions based on circumstantial evidence. The single most important fact for me, however, is quite simple: Niagen is proven to boost NAD+ better than anything else AND enhance Sirtuin activity. To me that is a slam dunk. NAD+ is THE fundamental molecule necessary for healthy cellular processes . . . ALL cellular processes. More NAD+ good . . . less NAD+ bad . . . Question: How does one best boost NAD+? Answer: Niagen
After your post, I did some reading about Sirtuins and, indeed, they're important little critters -- which, once again, I had never heard of. It's like Vincepotine. Never heard of the stuff and all of a sudden it burst on the scene and seems to be helping a fair amount of people. That and turning decades of conventional wisdom upside down, as you just did with nicotinamide, (although, I am not yet fully bought in that nicotinamide should be discontinued) -- is what makes this so much fun.
So, there are 7 sirtuins. Is it your understanding that inhibiting all 7 are bad?
"However, once administered to cells, NAM (nicotinamide) is rapidly converted to NAD+ and, therefore, the cellular concentration of NAM decreases rapidly while that of NAD+ increases. The result would be an inhibition of SIRT1 for a limited duration, followed by an increase in the activity. This possibility raises a concern on the validity of the interpretation of the results in the studies that use NAM as a SIRT1 inhibitor. To understand better the effects of cellular administration of NAM, we reviewed published literature in which treatment with NAM was used to inhibit SIRT1 and found that the expected inhibitory effect of NAM was either unreliable or muted in many cases. In addition, studies demonstrated NAM administration stimulates SIRT1 activity and improves the functions of cells and organs. To determine if NAM administration can generate conditions in cells and tissues that are stimulatory to SIRT1, the changes in the cellular levels of NAM and NAD+ reported in the literature were examined and the factors that are involved in the availability of NAD+ to SIRT1 were evaluated. We conclude that NAM treatment can hypothetically be stimulatory to SIRT1."
Happy New Year, Marc and Joe! I find it interesting that Parkinson's Today lists the article regarding Nicotinamide Riboside as THE top story of 2018. Supplementation with B12 also made the list.
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