I was dancing around this topic because I guess I thought people would read my links and understand what I was trying to say, but recent conversations online have made me realize people are not grasping the amount of growing evidence that shows improving NAD+ levels may be the single best neuroprotective action we can take on our own, and Niagen, the new and improved form of vitamin B3 is a proven and safe product that not only boosts NAD+ dramatically, but also helps improve Sirtuin activity which is a proven neurological benefactor as well. ALL the old forms of B3 blocked Sirtuin activity. That is key. I for one consider, Niagen, to be the single most important supplement patients with ataxia can take, BUT as always don't take my word for it . . . print out the research and talk to your doctor.
The original B3 - "Nacin is a water-soluble vitamin, which is also known as nicotinic acid or vitamin B3. Nicotinamide is the derivative of niacin and used by the body to form the coenzymes nicotinamide adenine dinucleotide (NAD) and nicotinamide adenine dinucleotide phosphate (NADP)."
and then the science research that is building that shows the POSSIBILITY of NAD+ repletion to halt the damage done in Parkinson's, ataxia, Huntington's and other neurological disorders. To date all the research is in cultures and animal models, but what researchers are finding again and again and in many different neurological disorders is that NAD+ repletion stops neurodegeneration, BUT a big piece of this improving message is that NR and NMN (which are both newly discovered NAD+ precursors) are Sirtuin activators where as the old Niacin and NAM were Sirtuin inhibitors.
Yes. I believe it does. I do not have PD. I have SCA1. SCA1 is like PD but it progresses faster and is always fatal and is inherited. My father, my aunt, and my sister all have SCA1. My father is 80. My aunt is 74. Until last month my father was taking 1000 mg a day. He had no progression in his symptoms for almost a year, but now he is in a government paid medical program so I am having a hard time convincing the doctors to let him continue taking Niagen. My aunt is still taking 1000 mg a day of Niagen and 40 g a day of trehalose. She went from a wheelchair to a walker last spring and is still using a walker. I had symptoms including inability to walk down stairs without holding the railing, inability to stand on one leg, decreasing clarity in speech, messier hand writing, heavy and stiff feeling in my legs, and fatigue. All my symptoms are gone. I have been posting on this website and others for close to a year and am now in contact with almost 2 dozen people worldwide that have tried Niagen and/or trehalose. About 1/2 are reporting positive changes that they can feel.
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Does it work?
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I believe it does, but I think age, length of time you've had symptoms, and severity of symptoms all impact the help this can offer.
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There is not one single human clinical trial showing any evidence of neuroprotection. There is only a hint of possibility in the research plus the few anecdotes that are beginning to come in.
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There are 2 human clinical trials that have been published that prove the safety of this supplement and it's undisputed ability to dramatically increase NAD+. There is no research on the dangers or lack of dangers of taking this supplement for an extended period of time.
Lots You probably already knew this, but if you click on my name you see all my posts. Most importantly I update my main "discussion" with whatever new changes I make to my routine so for those interested it's worth checking my list every once in awhile, but when I do make a change I always have a post discussing why.
You don't have to take a B complex vitamin in order to take nicotinamide riboside. That being said, a B complex vitamin (100% daily value) would not be a bad thing to take. In fact, it would be a great thing to take. The B vitamins are critical for nearly all aspects of mitochondrial function, and also the synthesis of neurotransmitters. But yes, if you want something that does hold the possibility of slowing the progression of PD, Nicotinamide riboside may be one option. Just curious, why do you feel that 1000 mg is the optimum amount to take?
Exactly. I tried 250, 500, and 1000. I used a max of 1000 because that is what was used in the human trials. I found that at 250 and 500 my legs still felt heavy and stiff, but at 1000 that feeling went away. If I skip 2 days that feeling starts to return.
Interesting. I took NADH years ago but didn't know about nicotinamide riboside. There is a book on libgen called NADH the biological hydrogen. In the pentose phosphate pathway where the thiamine dependent transketolase enzyme plays a key role- is where most of the bodies NADH is made- not in krebs cycle- so taking thiamine which stimulates that enzyme would help. Maybe thats one reason why thiamine helps parkinsons. And deficiency of the other b vitamins will effect the ability of krebs cycle to generate NADH (eg B5 for acetyl coa).
I now take 150 mg twice daily of pterostilbene as well. I upped it based on one human clinical trial that showed high dose ptero reduced blood pressure. Can't say I feel different but after 2 days my blood pressure is down over 10 pts bot DS and CS.
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The theory behind taking them together is that there will be a synergistic action on Sirtuins. There continues to be debate surrounding the topic of Sirtuins and neuroprotection, but the majority of the evidence to date seems to be positive.
The nicotinamide riboside group showed a tendency towards worse physical performance by 35 % compared to the control group at the final 10 % load (94 ± 53 s for the nicotinamide riboside group and 145 ± 59 s for the control group; P = 0.071).
CONCLUSION:
Our results do not confirm the previously reported ergogenic effect of nicotinamide riboside. The potentially negative effect of nicotinamide riboside administration on physical performance may be attributed to the pleiotropic metabolic and redox properties of NAD(+) and NADP(+).
"At the mechanistic level, Sirt3 directly deacetylates isocitrate dehydrogenase 2 (Idh2), an enzyme that converts NADP+ to NADPH in mitochondria. In response to CR[caloric restriction], Sirt3 stimulates Idh2 activity in mitochondria, leading to increased levels of NADPH and an increased ratio of reduced glutathione/oxidized glutathione, the major redox couple in the cell. In cultured cells, overexpression of Sirt3 and/or Idh2 increases NADPH levels and protects these cells from oxidative stress. The data presented here provide the first conclusive evidence that CR-mediated reduction of oxidative damage and prevention of a common age-related phenotype (AHL)[age related hearing loss] require a member of the sirtuin family in mammals."
Here is more: " We find that administration of NR, even after noise exposure, prevents noise-induced hearing loss (NIHL) and spiral ganglia neurite degeneration. These effects are mediated by the NAD+-dependent mitochondrial sirtuin, SIRT3, since SIRT3-overexpressing mice are resistant to NIHL and SIRT3 deletion abrogates the protective effects of NR and expression of NAD+ biosynthetic enzymes. These findings reveal that administration of NR activates a NAD+-SIRT3 pathway that reduces neurite degeneration caused by noise exposure."
I have tinnitus in my left ear from a car battery explosion in 1990. I took regular Niacin for about 6 months. The heat/flushing in my skin was a bit unbearable at times, but I feel that it may have helped recover some of my hearing loss from the increased circulation from the Niacin I was taking back then. I will try the pterostilbene and niagen. As far as supplement and food combining, what combination/timing have you found the best results for taking all of your supplements and meals? Don't think you are taking Carbidopa or Levadopa, correct? So you might not have to navigate around as much throughout the day as the rest of us.
How long have you been taking Thiamine HCl and how significant do you feel it has been for you.
Besides Niagen, are you taking any other B vitamins?
Do you think that trehalose has had a positive effect on your SCA-1? Would it have as strong effect for PWP? I have read negative things in the press about it, as far as being a health hazard, in the sense of creating super strains of Clostridium difficile. What is your take on that? Is there a particular for you are taking and for how long have you taken it for? One recent study seems to conclude that it does appear to have some minor positive effects for alpha-synuclein toxicity.
It is my belief that trehalose and mannitol are the single best molecules available to patients with neurological diseases that stem from protein mis-folding. The issue of Clostridium Difficile is to me a false issue. I discussed this in another post.
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SCA1 is unlike PD in that it is clearly defined and studied, BUT it shares the fact that at it's heart is a protein that is "mis-folded". I am symptom free when I should be in a wheelchair. My father and my aunt and my sister also have SCA1. They are stable and not progressing. About 1 dozen people who have followed my protocol are also reporting positive results.
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I am convinced that we (patients with neurological disorders resulting from mis-folded proteins) can alter the progression of our diseases with "micronutrients". Sadly each of us needs to discover the proper combination, and there is precious little research to help us.
What batch amount do make? How do you store it? Why boiled? What kind of bottle (nasal spray style)? Is it still effective even if your nose is somewhat congested? How much better are your results compared to regular ingestion?
Lastly, what about doing the same method for mannitol? Ever tried it?
It's probably the craziest piece of my "alternative therapy". I mix 4 Tbs of water with 1 Tbs of trehalose and boil it, but the bottles are small and I only use 30 ml. I boil the mixture to kill any bacteria in an attempt to make the sugar water last longer without beginning to grow anything. That is also why I throw away the bottle after 3-4 weeks, and why I store it in the refrigerator. When I am congested I do not even try taking it. Here is a link to the bottles I use:
As to whether it makes a difference, here is my theory: Trehalose and mannitol are potentially binding to alpha-synuclein preventing it from "folding" and helping the body to clean it out before it causes damage. (Or in my case because I do not have PD but SCA1 they are binding to the ATXN1 protein) What this means is that it does NOTHING to make you feel better. It SLOWS progression, MAYBE. The bottom line is even if it is actually working most people won't feel ANYTHING because their damage is too far along, but hopefully if people keep taking it for 10 years they will notice that their illness has progressed unusually slowly. I am symptom free so my hope is that as part of my total strategy, mannitol/trehalose will work to keep my progression slowed enough that I can consider my life span to have been "normal", but it is only one part of my total "alternative therapy". I do not believe taking trehalose or mannitol alone would be enough to stop the progression of my disease.
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All of this hinges on getting the molecule into the brain. That is why BioBlast has patented a trehalose injection. They are putting trehalose directly into the bloodstream in huge amounts in hopes of maximizing the amount of trehalose that is available to cross the Blood Brain Barrier.
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Is mannitol the same? Yes I believe it is. The molecules are virtually identical and the small amount of research in cells and flies that I have seen showed that mannitol behaved the same as trehalose. When choosing which to take orally, I think mannitol is superior because it has a lot fewer calories. As a nasal spray they are probably equal. As a final note I would add that trehalose is actually attached to other molecules and used as a stabilizer and/or an aid to permeability for other medications.
Which brand of trehalose do you buy? It looks like all of them are the same purity, but, of course, you don't necessarily know what source they are coming from.
So, why do think many people feel better with mannitol, when it is preventing progression? Is it because enough misfolded proteins are cleared out enough to the point of having restored function?
I took mannitol for the first time the other day. Felt fine for the first two times, but the third time, felt nausea and gas for the next two days. Going to wait a few days to experiment with it again.
Yeah mannitol wreaks havoc on my stomach as well, so I only take it when I I'm at home and never on the road. When I travel for work I just take trehalose which is less upsetting of my intestines.
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As to why some folks are reporting feeling better I agree with your guess. For some it may actually be getting enough into the brain that it makes a meaningful difference in the damage they are feeling.
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I wish the Clinicrowd would try nasal spray of mannitol and see if they get the same results. Seems to me a much better way of getting the molecule directly to the brain. Really is too bad we have to try things like this without any input from serious medical researchers.
It would be interesting to see if those folks who have a positive improvement to switch to a nasal form to see if they experience a difference. Maybe it's worth postulating the idea in Clinicrowd to get the ball rolling?
ah yeah . . . I've come full circle on that one and ordered some "BioPQQ" today. It has clinical evidence that it enters the brain in the "bio" form which is combined with a salt.
Treasure Trove-thank you for all the organized references and summary. I am unable to cut/paste to a document while using an iPad; will try on iMac later. Easier to save and read that way over time. If anyone has had success with cut and paste from HU pls advise. I am using injection GSH and intranasal NAD+ with oral thiamine tablets... GUNG HO
This is an update on current studies. There are 5 different NAD precursors which means they help make NAD. Some work better than others and some have side effects. The 2 being studied extensively right now are NMN and NR. There is a company NYCR that is getting funded on Indiegogo currently. They will be manufacturing NMN or Nicotinamide mononucleotide which is a NAD precursor just like NR. They just started their funding and yes I am a donor. The dose will be 1000mg with 15 doses per month in a pharmaceutical grade flavored powder form made in the US for 25% to 280% less then inferior Food grade made outside the US currently available. It absorbs faster into the blood stream and does not have to go through the liver that uses up about 1/2 of the dose that you take. They will also combine it with CoQ10 as a heart specific supplement. The studies done with nicotinamide riboside were ALL done with doses that would equate to minimum 1000mg for a 155lb person. The one that has the patent for B3-NR is in a lawsuit - ChromaDex (Tru Niagen) vs Elysium (Basis). One of the findings from the lawsuit was that ChromaDex is not offering B3NR (nicotinamide riboside) in doses used in their own studies which is 1000mg or higher for a 155lb person. Precursors are Dose Specific so if you take less the 1000mg it does not offer the benefits that you are looking for. The Indiegogo URL for NYCR is igg.me/at/NYCR if you want to get involved. They also have a lot of information on the page. As one who is looking for a NAD precursor for less then they cost now, the project I am donating to on Indiegogo will have prices at a little over 4.00 per gram. The prices right now are 6 to 12 per gram and that is very expensive if there are 2 of you. I am looking at it for heart issues. My mom also want to start taking it. She has heart issues along with neurological issues and is on so many high priced meds that it makes it hard to afford supplements on top of them. The NMN and precursor studies are so promising. If we can find something to help make our quality of life better that is all you can ask for.
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You probably already knew this, but if you click on my name you see all my posts. Most importantly I update my main "discussion" with whatever new changes I make to my routine so for those interested it's worth checking my list every once in awhile, but when I do make a change I always have a post discussing why.
Study strengthens therapeutic potential for niacin-based diet in treatment of Parkinson's disease
Study Shows NMN and Herbal Compounds Prevent Neuron Death in Parkinson’s Models
Nicotinamide riboside supplement shows promise as a potential therapy for Parkinson’s disease - I started taking it today!
SoPD blog post from Simon on the recent results from the NADPARK trial of nicotinamide riboside (Niagen)
