There seem to be a lot of folks here taking 12 Butyrate capsules a day based on that post on another forum by a person who said Butyrate, 6 in the morning and 6 at night, and 500 mg of Niacin, cured their PD.
I'm not saying he is wrong, but when I tried to contact him I noticed on his profile that he is self diagnosed. This does not mean he misdiagnosed himself.
Also, I think he came up with his Niacin Butyrate treatment from this one page he said he found when searching for a cure: foundationalmedicinereview....
That page pushes the Butyrate, and it links to Professor Chong's report on Niacin (not the new report, but an old one, but Professor Chong is the Niacin guy from Auborn.
Just wanted to let people know. I have not stopped taking mine (6 a day as the bottle says).
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T.E. Neesby Butyrex is the product highly recommended by Dr. Walter Crinnion, ND when treating leaky gut in the mid 1990's. Also T.E. Neesby AquaSol (liquid selenium). Dr. Crinnion passed away a few years ago, but he was renowned for the work he did with environmental illness. (that is to say, "Yes, it is a good brand.")
Hi Bolt_Upright. I think I must be the self-diagnosed guy who posted about the benefits of my medication/supplement regime including Butyrate and Niacin and triggered this discussion by saying I was cured! That was of course as I explained in a later comment a bit of hyperbole but I maintain that my situation is greatly improved by my regime as a whole. I realise that some of these supplements are pushed but I take that into account. I first noticed the two supplements on Parkinson’s News and did my research reading some of the articles mentioned recently by you and others in similar threads to this. I thought there was nothing lost by trying. I agree they are revolting but my swallowing is good and its manageable.So here I am and little has changed. I emphasise that all of us with PD are different so what works for me may not for you. May I correct what has been said about my regime? I am still doing (though I have re-aligned the dose times):
Rasagiline x 1mg x 1 per day at 0600
Ropinirole 32 mg (16 mg at 0600 and 16mg at 2000)
Co-Careldopa 25mg/100mg 3 times per day at 0600, 1300 and 2000
Butyrex Complex 500mg x 3 at 0800 and x 3 at 2000
Niacinamide 500mg 1 x per day at 0800
I also take
Resveratrol
B Complex
D3/K2
Turmeric
I do a great deal of PT - I have a personal trainer 2 x pw, his Zoom classes 3 x pw and I exercise in my own gym on a rowing machine and with weights etc etc. I regard this as crucial to my well-being. I do brain exercises, Scrabble against the top level computer (I win 96% of the time), cryptic cross words, extensive reading, and I amuse myself writing lyrics (hence my nom de plume).
Much of what I do I was taught during a 3 week therapy course in the US at a clinic specialising in PD - they got me back on track 4 years ago with gait, co-ordination, diet, exercise, etc etc.
I regard myself as virtually normal. My family and friends say they would not know I had PD. I think I look good for 73. I am physically as fit as I can be and I maintain a positive outlook despite what I know is ahead anyway. Positivity and Fitness are central to dealing with PD.
So what problems do I have?
1. Sleep is not easy. I sleep fitfully. The result is sleepiness at times during the day. I am considering Mannitol as an addition to my cocktail!
2. ED can be a nuisance. I have tried w/o success some of the natural remedies. So any suggestions apart from the usual V, C, L options are welcome.
3. Breathing is a variable issue - I find that during my occasional off-periods, breathing can become laboured walking uphill or upstairs and I need an extra pillow at night to avoid a feeling that I cannot draw adequate breath.
Of course I realise I am slower but not by much.
I have decided to stay away from alcohol and ice-cream as they knock the edges off my regime benefits. So sadly they must go. Now I’m getting depressed👍
Hope this helps. I don’t have time to answer specific questions as I lead a busy life which is why I have set the position about at length.
Niacin Enhancement for Parkinson’s Disease: An Effectiveness Trial
Vitamin B3 is the energy source for all cells by producing NAD ⁺ and NADP ⁺ in redox reactions of oxidative phosphorylation. Thus, some symptoms of PD such as fatigue, sleep dysfunction, and mood changes may be related to the deficiency of vitamin B3. Here, we conducted an effectiveness trial to determine the effect of 12 months of low-dose niacin (a vitamin B3 derivative) enhancement in PD individuals. An average of 9 ± 6-point improvement in the Unified Parkinson’s Disease Rating Scale (UPDRS) III (motor) score was observed after 12 months of daily niacin compared to the expected decline in score (effect size = 0.78, 95% CI = 7–11). Additionally, secondary outcome measures improved. Notably, handwriting size increased, fatigue perception decreased, mood improved, frontal beta rhythm during quiet stance increased, and stance postural sway amplitude and range of acceleration decreased. Set shifting, however, as measured by the Trail Making-B test, worsened from 66 to 96 s. Other measures did not change after 12 months, but it is not clear whether this represents a positive benefit of the vitamin. For example, while the quality of night sleep remained the same, there was a trend towards a decrease in the frequency of awakening episodes. These results suggest that niacin enhancement has the potential to maintain or improve quality of life in PD and slow disease progression.
Mmmm! You are correct. I should still be on Niacin as I was originally. I am fairly confident the change to Niacinamide was suggested to me when Niacin was out of stock! I assumed no difference but didn’t check. An object lesson to us all! I am re-visiting the issue. Pretty sure I will revert to Niacin but need to sort out dosage - so thanks Bolt.
Slowly does it I think at first. Will build up later to what seems to be an effective dose. Also I must further investigate slow release, and some negative aspects of niacin mentioned in the stuff Ive been reading recently.
Yes, there is a lot of negative stuff out there about SR, ER, TR Niacin. The only reason they used SR Niacin in the study was they could not find IR Niacin at 250 mg.
On the OTHER hand, the results WERE based on SR Niacin, and I am not sure how long IR Niacin stays in the body, so there may be some benefit to SR. Also, I corresponded with the people involved in the study and they told me the next study will be 100 mg Niacin twice a day to see if spreading it out more helps.
This has me thinking of A: Sticking with the 250 mg TR I bought, and B: Ordering 250 mg ER tablets and cutting them in half so I can split the dose and take twice a day.
I did order a bottle of IR 50 mg to try. I heard you should not mix the IR and SR/ER/TR.
I joined a FB group on Niacin. Hopefully they can help some.
.... By the way, I neglected to mention that I stopped taking all supplements for three weeks, got retested, and my ammonia levels were back to normal again. Do I know that niacin was the cause? No. However. I keep reading that niacin is bad for the liver.
Getting enough calcium can be difficult for people with PD as many find dairy foods more likely than other protein foods to inhibit levodopa absorption. Here are some recommendations that will help you meet your calcium requirements:
Drink calcium-fortified orange juice
Add calcium-fortified-rice and soy milk alternatives to cereal, smoothies and cooked dishes
Switch to breakfast cereals and other foods fortified with calcium
Consider taking a calcium supplement — calcium citrate is often a better choice.
Chewable calcium tablets are better absorbed since they are already broken down when they reach the stomach.
One good thing about butyric acid is that, according to the people that did the Niacin study at Auburn, butyric acid also acts to lower inflammation via GPR109A, just not as well as Niacin does. So I take my niacin at night and butyric acid during the day. I figure I am covering more bases that way.
Not sure I will stay with Neesby's. We seem to have been ghosted by the guy that recommended it.
niacinamide is not the same thing as Nicotinic acid. Nicotinic acid acts via GPR109A, but not niacinamide (aka nicotinamide). They used 250 mg of slow release Nicotinic acid once a day in the study. They just used slow release as it was available (but the slow release is what got the results, so I stick with that).
How much of what type (slow release or immediate release) were you taking when your ammonia levels went up? Auburn seemed pretty sure 250 mg slow release would not be an issue. I understand that with fast release you can go a lot higher (so some people say).
Thanks. I don't really know much about niacinamide. I take 250 mg Nicotinic acid slow release based on the Auburn study: healthunlocked.com/cure-par...
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