Forum Replies Created

  • philippe-joly

    Member
    May 29, 2020 at 4:09 pm in reply to: Butyric Acid and Niacin

    Thank you for your answers. They are comforting and I feel like trying again, which I will probably do around end of June, as I have a meeting with a new neurologist around mid June and I don’t want to complicate the picture of my symptoms before that. But I ‘ve already bought it, so here we are, and I will let you know for sure if anything good happens as you have been kind with your advice.I have read various articles which point the same way, but I have not been able to figure out how to copy the links yet for whoever is interested !

  • philippe-joly

    Member
    May 28, 2020 at 10:02 am in reply to: Butyric Acid and Niacin

    Thank you Russ and Murray for sharing details on butyric acid product quantity and quality. I could be interested to try again, but I have a question yet:

    – I understand your dosage is quite higher than the manufacturer recommends. Do you have other information on maximum intake and have you noticed adverse side effects.

    Thanks again for your contributions

    Philippe

     

     

     

  • philippe-joly

    Member
    May 15, 2020 at 2:52 am in reply to: Butyric Acid and Niacin

    I use niacin (also named vitami B3) occasionally as a sleeping aid as it is a precursor to melatonin. I have not felt significant effects on parkinson’s symptoms but I consider it could be a bonus.

    I tried butyric acid also with no noticeable effects. Likewise with a couple other products. It seems now to me interesting to monitor the news flow on such still-promising products but not try them until a more accurate protocole and its actual performances are published.

  • philippe-joly

    Member
    May 15, 2020 at 2:52 am in reply to: Butyric Acid and Niacin

    I use niacin (also named vitami B3) occasionally as a sleeping aid as it is a precursor to melatonin. I have not felt significant effects on parkinson’s symptoms but I consider it could be a bonus.

    I tried butyric acid also with no noticeable effects. Likewise with a couple other products. It seems now to me interesting to monitor the news flow on such still-promising products but not try them until a more accurate protocole and its actual performances are published.

  • philippe-joly

    Member
    October 24, 2019 at 3:30 am in reply to: Are you taking any vitamin supplements to help your symptoms?

    On top of butyric acid, the above interesting article posted by Russ refers frequently also to the role of niacin- this is in fact Vitamin B3. The article considers that niacin is depleted when you have PD, resulting in inflammation, and one of the benefits of butyric acid would be to compensate for that lack of B3.

    So perhaps another pill to take. Regarding swallowing problems, Jean, I was told by the hospital staff to use a straw, and it did help a lot when I had trouble to swallow. Perhaps you are already well aware of that little trick. Now, I don’t really need it anymore at this stage, since I had DBS surgery one year ago.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  • philippe-joly

    Member
    October 23, 2019 at 10:42 am in reply to: Are you taking any vitamin supplements to help your symptoms?

    Besides vitamins as such I use for taking care        of my intestine :

    – L glutamine  ( widely mentionned for leaky gut)

    – digestives enzymes (if you feel heavy after meals)

    – probiotics (still a rather new field but this can help restoring your microbiome)

    I also take curcuma, q10 and omega3 from time to time.

    For vitamines I would like to point out vitamin B3, which is the natural precursor to melatonine and occasionnally helps me sleep without all the issues linked with sleep drugs. And there have ben a couple of publications as to its positive role on parkinson’s.

    All of the above help me feel more dynamic and clear headed within a few days of beginning to take them.  But it is hard to claim anything beyond that with any degree of certainty. And after a while it gets tedious to absorb so many pills!

  • philippe-joly

    Member
    October 23, 2019 at 9:27 am in reply to: Have you had bad luck using generic vs. brand meds?

    I have occasionally been given generic Sinemet and I found it to be 25 to 30% less effective (based on an overall guess, not a scientific assessment). Since then, I have always insisted on being given the brand product. And this was before the new Sinemet.

  • philippe-joly

    Member
    October 22, 2019 at 10:21 am in reply to: Azilect/rasagaline; have you tried it?
      <li style=”text-align: left;”>I started using  Azilect back in 2009, about one or two years after being diagnosed as it was beîng relaunched in my country (France) after several years off and some improvements. At the time it was supported  by hints as to its possible protective  effets as well as positive effets on the overall mood for peuple prone to depression. I used it several years then I had to stop as I noticed bad reactions when I was eating certain foods : hot flashes, heavy sweat , accelerating heart etc…I did some research and discovered a side effect which was intolerance to histamines. I don’t know for sure this was the reason but these scary reactions disappeared after I stopped using it for about 6 week. Now, I must add that I was not able to really replace it for mood support and effectiveness of sinemet intake. As to its protective role I am  not able to comment. So if you are watchfull for high histamine food ( and possible interaction with other drugs which make an incredibly long list) Azilect did help me for as long as I could take it.