• Ron Work

    Member
    July 29, 2020 at 2:33 pm

    How soon did the tremors slow or go away?

  • Russ Hudson

    Member
    July 31, 2020 at 9:09 am

    “How soon did the tremors slow or go away?”

    Within a month or two

  • Emmi Beutel

    Member
    August 5, 2020 at 3:24 pm

    I have a question about the Butyric Acid and Niacin:

    do you take it every day longterm, by that I mean for the rest of your life.

     

  • Russ Hudson

    Member
    August 5, 2020 at 6:08 pm

    “I have a question about the Butyric Acid and Niacin: do you take it every day longterm, by that I mean for the rest of your life.”

    I would say yes, I’ll take it for the rest of my life. I’m sure the side effects of not taking it, the return of Parkinson’s, would be worse.

  • Emmi Beutel

    Member
    August 6, 2020 at 3:12 pm

    Russ,

    does your Doctor or Neurologist know about butyric acid and that you take it and does he approve it?Is it save to take so much each day?

  • Fran

    Member
    August 6, 2020 at 3:44 pm

    Russ

     

    thank you so much for sharing.  Do you take 6 twice a day or do you split the 12 up a particular way throughout the day?

    Thank you !

  • Rob Stehlin

    Member
    September 27, 2020 at 7:52 pm

    Russ – I still keep asking what killed the gut microbiome stopping the production of butyrate.  This is the “WHY”I am searching for.  I am searching the connection between my gut dysbiosis and my toxicology test.  The gut dysbiosis is the key to pre-parkinson’s.  It is the dysbiosis that allows the transfer of mis folded proteins or toxinis to enter the ENS and then the CNS via the vagal nerve.

  • joan

    Member
    September 29, 2020 at 3:10 pm

    If any of this can help slow down or relieve the PD symptoms we should hope information would be made available to us and our doctors. I’m willing to give it a try. PD is awful.

    • Beth T Browne

      Member
      July 20, 2021 at 10:32 am

      Joan, I am f inding my doctor won’t talk about any thing except what has been tested and proven.  I have recently changed doctors, but only have seen him once.  So, maybe he is the same.  Since I cannot handle the LevaDopa, I am trying Mannitol, and I recently started taking Niacinamide, 500mg, 1 a day.  I am petite only weighing 94, so I am concerned about taking large doses of anything. But I am thinking about trying the Butyric.  I take a lot of supplements include B vitamins.  And, with osteoporosis, I have taken calcium/mag for years, but not doing anything for my Parkinson.

  • Daniel Best

    Member
    September 29, 2020 at 4:49 pm

    Hi Russ,

    Super-interesting information!  In addition to the butyric acid and niacin, are you taking any of the more standard PD medications?

  • Todd Kitten

    Member
    October 2, 2020 at 7:49 pm

    Hi Rob,

    I’m interested in your questions and comments about butyric acid. Where does one get their SCFA levels tested? Also, I’m aware of companies performing microbiome sequencing, but I would be interested to know who you used if you’ve had that done.

    Thanks.

  • Daniel Best

    Member
    October 6, 2020 at 2:16 pm

    Could the results be due to any other medications?  Are you taking C/L etc?

  • Murray Zipf

    Member
    October 8, 2020 at 2:21 am

    I’m still happy with my results taking 6 Butyric x2 daily

    I stopped niacin b3 I used to go bright red

    i feel the supplements are only part of the story

    i walk 45 minutes/ day
    3-4 minute ice bath daily reignites the whole body autoimmune system

    wim hof breathing( google him) daily Supercharges oxygen throughout your body

  • Russ Hudson

    Member
    October 8, 2020 at 8:45 am

    Daniel, I don’t take any other PD medicines.

  • Rob Stehlin

    Member
    October 9, 2020 at 7:31 am

    Todd –  you can get a SCFA test done at Great Plains Lab. I use them for all my testing. Taking Butyric Acid does not answer why and is probably why few see any results.   Detoxing and restoring the gut microbiome back to where it produces SCFA’s is what we need to do.  Just a question – do you have body odor?  If you do not, it is a sure indicator you have low butyrate.

     

  • Todd Kitten

    Member
    October 9, 2020 at 8:40 pm

    Hi Rob. Thanks for your response. I saw that you’ve mentioned the body odor issue several times. I’m surprised to hear about a lack of body odor indicating a problem. I thought people with Parkinson’s had an unusual body odor that some people can detect and that dogs have been trained to detect. Is the body odor you’re referring to similar to that of the butyric acid pills?

  • Andrew L.

    Member
    October 14, 2020 at 3:06 pm

    Never tried Butyrate. have been on Niacin for 25 years for high cholesterol, diagnosed with Parkinson’s just a few years ago.

  • George Harison

    Member
    December 11, 2020 at 1:02 pm

    Which is the best brand of butyrate acid?  If you do an Amazon search you get over a dozen brands!  Some contain Magnesium and Calcium, others sulfur.  Others contain bio- availability enhancers.  Then there’s the dosage (mg) per capsule and recommended serving sizes.

    • Beth T Browne

      Member
      January 12, 2021 at 3:04 pm

      I think we should try anything that is not harmful.  Although my doctor said butyrate acids does not cure PD, and it is okay to try, it seems to work for some and some not so.  I was also told losing your taste is one of Parkinson’s symptoms, and that it doesn’t come back.  I was tasted for the virus twice, and it was negative, and I have no symptoms.  However, I sense my taste is starting to return some, so what am I taking causing that to happen?  If it generally doesn’t return with PD, I must be doing something right.  No one has respond to me regarding their lost of taste, so I have nothing to go on.  I could not handle the prescripton for Dopamine, so I take only 45% (twice a day) with the hopes I will be able to handle the stronger form.  My tremors have not changed, and get worse when I get upset or have problems to solve.  My walking is okay.  I some times have a problem swallowing pills.  I have no bad dreams.  My balance is off some.  In the mornings when I wake and look at the clock, I have double vision, but it goes away.  My hair is falling out badly.  My PD doc does not believe it is related to Parkinson’s, yet many of her women patients are commenting the same thing.  She believes it is something in the environment.  I live in Southern California.  My sleep is difficult and has been for two years, although I was only diagnosed in July of this year.  I think I had it last year as sleep was difficult, and I had tremors in my right hands.  I may try the butyrate acid to see if it helps my tremors.

  • Bolt Upright

    Member
    July 19, 2021 at 8:25 am

    Niacin and Butyrate: Nutraceuticals Targeting Dysbiosis and Intestinal Permeability in Parkinson’s Disease

    by Tennekoon B. Karunaratne, Chijioke Okereke, Marissa Seamon, Sharad Purohit, Chandramohan Wakade and Amol Sharma

    mdpi.com/2072-6643/13/1/28/htm

    Abstract

    Dysbiosis is implicated by many studies in the pathogenesis of Parkinson’s disease (PD). Advances in sequencing technology and computing have resulted in confounding data regarding pathogenic bacterial profiles in conditions such as PD. Changes in the microbiome with reductions in short-chain fatty acid (SCFA)-producing bacteria and increases in endotoxin-producing bacteria likely contribute to the pathogenesis of PD. GPR109A, a G-protein coupled receptor found on the surface of the intestinal epithelium and immune cells, plays a key role in controlling intestinal permeability and the inflammatory cascade. The absence of GPR109A receptors is associated with decreased concentration of tight junction proteins, leading to increased intestinal permeability and susceptibility to inflammation. In inflammatory states, butyrate acts via GPR109A to increase concentrations of tight junction proteins and improve intestinal permeability. Niacin deficiency is exacerbated in PD by dopaminergic medications. Niacin supplementation has been shown to shift macrophage polarization from pro-inflammatory to an anti-inflammatory profile. Niacin and butyrate, promising nutrients and unique ligands for the G protein-coupled receptor GPR109A, are reviewed in this paper in detail.

  • Bolt Upright

    Member
    July 19, 2021 at 8:25 am

    Niacin and Butyrate: Nutraceuticals Targeting Dysbiosis and Intestinal Permeability in Parkinson’s Disease

    by Tennekoon B. Karunaratne, Chijioke Okereke, Marissa Seamon, Sharad Purohit, Chandramohan Wakade and Amol Sharma

    mdpi.com/2072-6643/13/1/28/htm

    Abstract

    Dysbiosis is implicated by many studies in the pathogenesis of Parkinson’s disease (PD). Advances in sequencing technology and computing have resulted in confounding data regarding pathogenic bacterial profiles in conditions such as PD. Changes in the microbiome with reductions in short-chain fatty acid (SCFA)-producing bacteria and increases in endotoxin-producing bacteria likely contribute to the pathogenesis of PD. GPR109A, a G-protein coupled receptor found on the surface of the intestinal epithelium and immune cells, plays a key role in controlling intestinal permeability and the inflammatory cascade. The absence of GPR109A receptors is associated with decreased concentration of tight junction proteins, leading to increased intestinal permeability and susceptibility to inflammation. In inflammatory states, butyrate acts via GPR109A to increase concentrations of tight junction proteins and improve intestinal permeability. Niacin deficiency is exacerbated in PD by dopaminergic medications. Niacin supplementation has been shown to shift macrophage polarization from pro-inflammatory to an anti-inflammatory profile. Niacin and butyrate, promising nutrients and unique ligands for the G protein-coupled receptor GPR109A, are reviewed in this paper in detail.

  • Reuben

    Member
    July 27, 2021 at 8:48 pm

    It’s always heartening to read these many reports of folks successfully overcoming one or more symptoms of PD with the seeming endless array of “alternative treatments”. I have no reason to doubt any individual’s good fortune. However, it is quite a leap to assume that anyone else’s success is necessarily appropriate or even safe for anyone else. Not intending to be a downer on this, but really, there are so many variables involved that vary from one person to another. For just a few examples, the other, if any, meds that we take; our diet; the brand and/or dosage of the specific recommendation; the duration of the disease; perhaps our age; other medical (and non-medical) conditions present; as well as the interactions of the myriad of possible influencing factors. I guess I’m suggesting being very cautious in generalizing from the experiences of each other. My hope is to find a doctor who is as knowledgeable as a combination of a number of the contributors here (e.g. Russ Hudson on Butyrate and Bolt Upright, and others) and one who is a board certified neurologist with advanced specialization in movement disorders as well as a dedication and commitment and accessibility to their patients. Good luck to me, eh? But one such source who really knows YOU would enhance the feasibility of any treatment recommendations. Of course, I keep reading and appreciate the sharing. At least it raises good questions for a physician you trust. But no doctor or anyone else has all the answers or PD would not be the mystery it continues to be. For every promising lead I read, I find another or two equally credible that dispute it.
    My intent here is not to discourage, but to try to be helpful in the conversation.

    • Bolt Upright

      Member
      July 28, 2021 at 7:44 am

      Well written Reuben.Everybody is different and to tell you the truth I have spent the last few months looking for one good example of somebody who recovered from PD and have still not found that person.  I have found scientific reports of a couple of people that just seemed to recover on their own, but no names.

      And I want to be clear: I am not a smart man. I did not go to college and have no medical training.

      I have not been diagnosed with PD. I have been diagnosed with REM Sleep Behavior Disorder, which most doctors consider prodromal PD.  I am working, God willing, to avoid that.

      I do feel good about the B3 study from Auburn I linked to above, but take any advice from me with a grain of salt.

      I do think there is hope.  Here is one new exciting development: Caloric vestibular stimulation for the management of motor and non-motor symptoms in Parkinson’s disease
      https://healthunlocked.com/cure-parkinsons/posts/146496859/caloric-vestibular-stimulation-for-the-management-of-motor-and-non-motor-symptoms-in-parkinsons-disease

  • Maarten

    Member
    October 10, 2023 at 5:20 am

    I recently performed a microbiome analysis which demonstrated a lack of butyric acid producing bacteria. Since then for 2 months I have been taking inulin (10 g/day) next to Mg, Zn, vit complex, extra VitD and probiotics. I have a sense that over time the tremor is now getting less intense (I find the walking test registering my right hand tremor the most reliable). When I started taking Mg I immediately sensed improvements: felt stronger and less fog brained. However I now also ordered butyric acid and niacin pills to observe whether that further improves my (mild) symptoms as I am not yet on any meds. In principle taking butyrate does the same thing as inulin except that you dont have control over which bacteria degrade the inulin into which SCFA (acetate, propionate or butyric acid) and I seem to have plenty of the first types…. I am very much encouraged by the attached study on mice which even shows improvements in the brain from taking butyrate (pharmacologically the human dose should be 12x less than with mice per kg). After taking the butyrate for some time I plan to retest my microbiome to see if also there improvements are visible https://www.frontiersin.org/articles/10.3389/fnagi.2023.1099018/full

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