B3 and improvement of symptoms

[albachiara2]

Good morning,

I wished to ask, after how long do you notice improvement due to taking vitamin b3?

Thank you

[CaseyInsights]

There may be improvements in one week.

However do give supplements at least 3 months to determine effectiveness 🌺

[Smittybear7]

How much do you take of b3? What symptoms does it improve? What meds are you on? What other supplements do you take? Do you take b1 also?

[CaseyInsights in reply to Smittybear7]

I take it these questions are for me and not the originator of the post.

First off I am not PwP. My spouse takes 500mg of extended release Niacin along with 600mg Butyric Acid. I have recently added 500mg of TMG to this breakfast stack. This is the fist daily combo.

The Niacin relieves ‘tiredness’. The research suggest that along with Butyric Acid it targets ‘Gut Dysbiosis’.

As for B1, my choice for her is Benfotiamine 300mg daily. Currently she is taking 500mg Thiamine HCL. Yes I do mix it up.

Parkinson medication is Sinemet 25/100 or DopaBoost. Either medication three per day. 🌺

P.S Other supplements- the usual

[Smittybear7 in reply to CaseyInsights]

Thanks do any of those eliminate tremors?

[CaseyInsights in reply to Smittybear7]

As for tremors, I have not found a supplement to eliminate this.

Some insist that regular cardidopa/levadopa works on tremors. I have not found this to be so.

What I have noticed is that tremor in my spouse is linked to the level of anxiety. To keep anxiety at a minimum I use 500mg L-Tryptophan and 10mg Lithium from Lithium Orotate in the night stack.🌹

[FutureWell in reply to Smittybear7]

Propranolol twice a day 50mg keeps my husbands tremor fairly well controlled during the day. Not so well at night which I think may be due to the relaxation of muscles.

[Smittybear7 in reply to FutureWell]

Thanks

[Smittybear7 in reply to CaseyInsights]

What is in dopa boost? I was taking a product called Dopa Plus by Pure Encapsulation. When I started on c/l I was told to eliminate it. I'm currently taking 1 (25-100)c/l three times a day. When increasing the dosage from 1/2 pill 3 times a day to 1 whole pill 3 times a day the tremors increased. Neurologist said not to increase any more for now. The Dopa plus was very calming and had great ingredients. I don't like being on c/l and would like to cut back and restart the dopa plus. Did the neurologist work with you to combine the c/l and dopa boost or did you do it on your own. Thanks for your help

[eschneid in reply to Smittybear7]

Smitty,

Many people on this site combine their neurologists' advice with how they feel to come up with the proper combination of meds. Only you know how you feel when taking meds and supplements.

If it was me and I've been doing this for a good part of my 14 years of PD, I would probably cut a C / l in half and take some dopa pure. I don't know the strength of your dope pure so you will have to experiment and trust the way you feel.

Remember, the PD monster is different in all of us so you have to tweak the one-size-fits-all neuro mentality. It's not that they are clueless, our monster is complex.

[Smittybear7 in reply to eschneid]

Thanks I am a little nervous about trying to mess with the dosage right now. Iv'e been doing OT/PT since September and am making improvements. I started c/l in October. They think I have improved somewhat additionally since starting c/l. Tremors however have somewhat increased in frequency and intensity. I have some anxiety and don't handle stress well. Iv'e tried meditation but the tremors interfere with relaxation. I'm seeing a new neurologist in a couple of weeks and I am hoping she is open to trying the supplements. Thanks for your advice. The c/l is to determine if I have Parkinson's

[CaseyInsights in reply to Smittybear7]

Discussion on DopaBoost here -

healthunlocked.com/cure-par...

And here

healthunlocked.com/cure-par...

I do understand why your doctor would have you stop Dopa Plus: they trust pharmaceuticals to deliver the right amount of L- Dopa, and can therefore feel confident in increasing the dose or putting the brake on. Supplements can be spotty: you need to find reputable suppliers. Pure Encapsulation is one of the better ones.

As one of the contributors said use your doctor and your own reactions to mix and match. But you must be willing to experiment and fell confident in what you try. Go slow, go cautious.

Finally, my spouse Neurologist would not approve. But I do have the responsibility to keep her afloat. In the final analysis it is my call.

And this site has been fantastic: it has made me very confident in my approach to supplementation and choice of supplements🌺

[albachiara2]

I wanted to thank you for your availability

[Discogs_discogs]

I keep reading about the benefits of niacin (B3) for PD, but I also read about the long-term effects of niacin on the liver being negative too.

[CaseyInsights in reply to Discogs_discogs]

I too have read this. I believe it was product specific and linked to 750 mg Niacin per day.

Nonetheless as insurance 600 mg of N-Acetyl Cysteine (NAC) in the daily stack erases all worry 📌

[RBan in reply to Discogs_discogs]

Depends on the kind, I’m sending a link with the patented kind that is sublingual as an option.

nadh.com/pages/parkinsons

[Art_lover45]

Did I say I take B3? That must have been a typo. Sorry I take B1 500 Mgs twice daily and I feel it is great help. The improvement was almost immediate.

No tremors, no constipation, no sleep disturbance and I can walk straight and stride out. I do much more around the house (I had become very lazy) but I am 76 and it is perhaps to be expected. My PD seems to be confined to my mouth which is a bind but I live in hopes............... A sense of humour is to be appreciated.

[Gcf51]

It is insufficient information to say B3, there are many forms of B3. The study I read said “Niacin”. A bottle of Niacinamide will declare 500 mg of Niacin as Niacinamide.

I am a little confused... A lot of products say no flush Niacin, but when you look at ingredients say as Niacinamide... I assume we are talking a product similar to swansonvitamins.com/swanson... ... were niacin is released over an extended period of time….

[CaseyInsights in reply to Gcf51]

Indeed. B3 as Niacin. The product linked to is the right one.🌺

[Lyricist]

I made the same mistake originally. It is Niacin you need (not Niacinamide). I combine low flush sustained release Niacin in nicotinic acid 500mg one tablet per day (from Doctors’ Best) - note that some people take more! - with Butyrex 600mg (Butyric acid) from T E Neesby but I take 6 capsules per day - some people take more. The moot question is what does all that achieve? I take a lot of other stuff (32.5 co-careldopa 3 x pd, Rasagiline, a lot of Ropinirole (32mg) plus loads of supplements - B1, B12, D3/K2, etc etc). I would take more if I could get my hands on Mannitol or some of the re-purposed diabetes and leukaemia drugs currently under trial (too many to list). Don’t ask me whether it all works - but I’m doing OK. My symptoms seem to be under control and i am aware that it can’t last. my philosophy is Carpe Diem. One thing to keep in mind is that we re all different. What works for me may not work for you. Finding your level of requirements is trial and error. But the major brake on this disease for me is regular hard daily physical training. It makes me feel better and I have managed to recover a level of fitness and stamina I had neglected to maintain in middle age. I am 74. Nothing is easy. PDs symptoms and the side effects of treatment will be ever-present . Until the research yields results carried through into treatment that halts or cures PD, I will carry on trying to keep PD at bay. I cannot answer albachiara2’s original question, Just believe that it does improve life and it will. Good fortune to you all. I’m off to the gym.

[Gcf51 in reply to Lyricist]

Never heard of Butyric Acid before. Looks like what you take is aimed towards feeding (nurturing) good bacteria that will heal a leaky gut. The good bacteria would produce Butyric Acid. The Butyric Acid would reduce inflammation in the gut and elsewhere in the body.

[Lyricist in reply to Gcf51]

May I refer you to Parkinson’s News 10th May 2021 #20663 for information on the gut issue?

[Gcf51 in reply to Lyricist]

How do I find #28663 in Parkinson's News. A google search doesn't find.

[Lyricist in reply to Gcf51]

I may have the date wrong but I found it also on 11 December 2020 and 27 July 2021 in Parkinson’s News Today. I’m not good at links - tryHTTPS://parkinsonsnewstoday.com/forums/forums/topic/butyric-acid-and-niacin/

If you search these forums there’s plenty on the two supplements

[Lyricist in reply to Gcf51]

parkinsonsnewstoday.com/for... managed to copy the link. I will send you any other relevant research links i can find . Hope his is helpful even if it is not what you wanted.

[Bolt_Upright in reply to Lyricist]

Great post Lyricist. I hope you are wrong and it does last and your symptoms do stay under control (or improve!).

You can't get Mannitol?

[Lyricist in reply to Bolt_Upright]

I got some from US (I am in UK) a year ago but can’t seem to find any now. I wasn’t happy about taking an artificial sweetener but tried it for a couple of months though can’t say I noticed any benefit. Happy to try again if you can recommend where?By the way - I respect the way you apply careful meticulous research to anything you post. Good on you

[Bolt_Upright in reply to Lyricist]

I take Mannitol even though it violates the Specific Carbohydrate Diet (which I think is important to fix the microbiome). They have it on Amazon in America. And thanks!

[gwendolinej in reply to Lyricist]

Hi there Lyricist, I sourced the Mannitol from an importer of foods and wine here in Australia. It’s the Sosa brand, out of Spain. I think some members have bought it direct from Sosa. I’ve also got it from eBay and also Bulk Supplements in the US. Sosa is very cheap compared to the others, probably because it’s not being sold as a supplement!

You may or not know that it’s been used in hospitals since the 1970s for brain injuries and brain surgery. Never been researched further till now because, as our neurologist says, there’s no money in researching vitamins or supplements, as they can’t be patented.

Gwendoline

[Lyricist in reply to gwendolinej]

Most Grateful Gwendoline

[RBan]

I noticed a difference in my energy and my limbs feeling less heavy in about one to two weeks. You have to get the right kind of NADH (B3) I am sending a link.

nadh.com/pages/parkinsons

this kind is patented and very effective. For some reason it is no longer in stock on this website. hopefully it comes back in stock soon

[albachiara2 in reply to RBan]

Thanks, very useful the link you sent

[CaseyInsights in reply to RBan]

Please do not promote NADH as a form of B3. It is inaccurate and misleading.

NADH is the end product of B3 synthesis.

[Gcf51]

It's one thing to consider stuff from a forum, but I also want to read some documented research. That said my wants are not always followed, I just order amazon.com/gp/product/B0017... and amazon.com/gp/product/B003J...

I normally purchased most of my stuff from Swanson's....

[CaseyInsights in reply to Gcf51]

Here are two papers on the supplements you ordered

1. Niacin and Butyrate: Nutraceuticals Targeting Dysbiosis and Intestinal Permeability in Parkinson's Disease

pubmed.ncbi.nlm.nih.gov/333...

2. Niacin Ameliorates Neuro-Inflammation in Parkinson's Disease via GPR109A

pubmed.ncbi.nlm.nih.gov/315...

Trust you find them useful 🌺

[CaseyInsights in reply to Gcf51]

… and here a case study -

Low-dose niacin supplementation modulates GPR109A, niacin index and ameliorates Parkinson's disease symptoms without side effects

pubmed.ncbi.nlm.nih.gov/262...

[Gioc in reply to CaseyInsights]

here another 2021:

frontiersin.org/articles/10...

[CaseyInsights in reply to Gioc]

✨🙏🏾✨

[Bolt_Upright]

Link did not work. Here it is: ncbi.nlm.nih.gov/labs/pmc/a...

Conclusion

Based on the presented case, GPR109A expression level could be a prognostic indicator of ongoing inflammation in PD and low-dose niacin may be beneficial over time hopefully with very few side effects. We truly believe that this work will be valuable for understanding the pathogenesis of PD and may lead to new therapeutic avenues.

I'd like to know how they convinced the guy to stop the niacin for 3 months.

[Gcf51]

I have some Butyrex ordered. But I brought some HBM at a local supplement shop, only has the calcium portion, but does seem to help.

[Discogs_discogs]

Now I am very confused. I have been taking niacinamide (called "flush-free niacin") and have ordered NADH. Why are both of these the wrong product to take? I was under the impression that some separate research existed on the benefits of NADH for PD. In any case, I took real niacin once and I will never take it again. My balance was off for five days afterwards and the "flush" from the niacin was dreadful and painful. The distress and flush lasted about two hours. I can take niacinamide, nicotinamde or NADH, but I simply can't take niacin. Could someone possibly explain in greater detail why these other forms of niacin are unacceptable? Thank you.

[Discogs_discogs]

My bottle says "niacin 100 MG as niacinamide". Will this not have the same effect? After all, it is a form of niacin, right?

[CaseyInsights in reply to Discogs_discogs]

Theoretically all forms of B3 leads to the same end result: the production of NAD+, a fundamental orchestrator of daily homeostasis in our tissues and a key component in generating the body’s energy molecule - ATP.

However the metabolic breakdown of the forms of B3 is different and the supplemental benefits may be different. It is way beyond my understanding and has an entire field called pharmacology.

For results - relief from Parkinson symptoms, it may best you stick with Niacin: the form of B3 that produces a flush. 🌺

Edit: From the diagram it should be clear that Niacin and Niacinamide are forms of Vitamin B3. In no way is Niacinamde a form of Niacin.

Types of Vitamin B3 and pathways to the production of NAD+

[Discogs_discogs in reply to CaseyInsights]

Thanks CaseyInsights. Could you perhaps be confusing NICOTINAMIDE with NIACINAMIDE? That diagram (above) discusses NICOTINAMIDE, but says nothing about NIACINAMIDE. A lot of supplements will list "niacinamide" as the form of niacin listed under B3. I've seen this on several B-complex jars.

...... to anyone else: Did you get that horrible flush from delayed-release niacin?

[CaseyInsights in reply to Discogs_discogs]

See my comment below 👇🏾 Sorry for the misdirected response 🕴

[CaseyInsights]

No confusion mate:

Nicotinamide, also known as niacinamide, is a water-soluble amide form of vitamin B3.

It is found in foods such as fish, poultry, eggs, and cereal grains. It is also marketed as a dietary supplement, and as a non-flushing form of niacin.

There is quite a lot of confusion out there: not surprised you are up in the air 🌺 🌹

[Discogs_discogs in reply to CaseyInsights]

Ok, thanks. I suppose the bottom line is that there is no evidence that niacinamide helps with PD, but there is evidence that niacin does. Oh boy, I can't bear to take that dreadful flushing niacin again. Have you tried the slow-release type of niacin? Did it cause you to flush?

As I shop around online, I see niacin being listed on the back of the jar as "NIACIN, as nicotinic acid." Is that the correct one?

[CaseyInsights in reply to Discogs_discogs]

My spouse uses Dr. Best Sustained Release Niacin - 500gm. One per day.

Swanson also has a similar product.

Will still need to take it will food to avoid the mild flush it gives on an empty stomach 🌺

[jimcaster in reply to Discogs_discogs]

There are conflicting studies, but here's some evidence that nicotinamide (aka niacinamide) is beneficial for PD. I take TruNiagen because of this.

scienceofparkinsons.com/201...