In January we saw the announcement that a strain of probiotics might be useful.parkinsonsnewstoday.com/202..... I have been taking Bio-Kult MIND which contains this strain for about 3 months now. I don't notice any change except for better food digestion. I take 4 per day. Wondering if anyone else has anything to report on it.
COULD PROBIOTICS HELP? PXN 21: In January... - Cure Parkinson's
I've been on it for about 2 months. While I have good days and bad days, the good days are better than they have been . I can't say for sure that it's because of the pxn 21 alone though. In my desperation and impatience I am also trying dopa mind and I recently made a few Rx med changes. Quit ropinerol and started on 2mg per day of trihexyphenidyl. In addition to this i cut my b1 in half as well. And im not supplementing iodine as much either. There have been actual moments I've enjoyed being asymptomatic, although the moments are fleeting .
One of my parents is taking the same Brand and supplement with no change what so ever.
They have been taking 6 capsules per day for 12 weeks, and with their usual other supplements have noticed no change at all. As there son, I have a chance to witness any changes, as I reside with them, and again I have noticed no cognitive improvement, nor any gait walking improvement, or anything remotely that could be seen as an improvement.
I am looking into discussing with their doctor, the option of treatment using Ceftriaxone.
There has been some results relating to reducing alpha synuclein in humans and in animal studies. Moreover, it was successful in a patient with Alexanders disease, which has similar issues in the brain.
There is a clinical trial underway using Ceftriaxone for Parkinson's with patients in the USA, and concludes this year 2020.
Thank you--I just looked up the Ceftriaxone studies and they look very promising!
Are you serious? This is VERY interesting to me, who has taken probably 1.5 - 2.0 years of IV antibiotics per day. Th e most frequently infused was indeed ceftriaxone (AKA Rocephin). I was taking this for chronic, late-stage Lyme disease. Can you tell me where you read about this trial? I want to inform a number of Lyme docs about it, as well as my PD docs. Thanks!
Like you Ladyaudree, I’ve been on the probiotic supplement with B subtilis for about 3 months taking only 1/2 the dose you are taking. I take it right before bed time and like you, no earth-quaking changes except less bloating and improved digestive health. Have you got any data or recommendations on amount of dosing? Not sure if the original study had that detail for the trials. Best wishes in your results. Also not sure how long until effects could be expected with any dose. Thanks for sharing.
When I first heard about the study I googled PNX 21 and found Bio-Kult. I contacted them and they recommended 4 per day. After that they put the information about the study on their web page bio-kult.com/article/447-ba.... I think since they are not doctors they could not recommend more than the already recommended dose and when I tried to bring it up with my nuero I was blown off. There doesn't seem to be any bad side effect from taking and "overdose" of probiotics except for possible gas or bloating so I am thinking of upping the dose. It was scarce at first but now seems to be readily available. Bio-Kult also told me it will soon be available on Amazon.
Ladyaudree, I am coming to the end of my third box of Bio-Kult MIND and I can honestly say it's done nothing for me whatsoever.
The cynic in me feels like she's been had.
Started back on B1. Going to stick with that.
Probiotics do help with food digestion. I won't be without them now in my arsenal. Having serious, slow, digestion problems and getting reflux occasionally I can drink a little kefir (full of probiotics) and it doesn't progress but seems to help whatever I ate stop building acid until it can make it's way down the tract. Great benefits in probiotics to take as needed or daily.
I recently purchased some supposedly amazing probiotics/prebiotics from Australia, called Progurt Probiotic Sachets. They claim to be "Human Probiotic Isolates". The box says "Restoring the microbiota you were born with." Two servings in powder form in little envelopes is what you get for about $44. The only reason I tried them is because a friend whom I trust and who also has Lyme wrote about this stuff in glowing terms on her blog. Miraculous overnight improvement in symptoms, etc. Can't say it cured me, but then again, I have been hitting the sugar and too much fruit lately. I think going ketogenic is probably going to help much more. Has anyone here tried Progurt and has a result to share? Thanks!
I'm intrigued? What were you expecting? Do BioKult make specific claims for symptomatic relief?
If not, the probiotic MIGHT suppress mis-folded alpha synuclein, which might result in slower disease progression
So - "no change" is an excellent result - although 3 months is much too shorter period to get excited about
I agree about 3 months being too short a trial period and we have no idea about the amount we should be taking for it to work as it did in the study. I'm not even sure that if I were to take "more" in the form of more capsules that it would increase the amount of PXN21 or if there is some sort of limitation to the bacterial population in the gut and that the excess would be secreted.
I've been taking it for about two months and have noticed less fatigue. I was also surprised when I tried to whisk an egg and was actually able to do it well. I haven't been able to that in over a year. I don't know if the bio-kut is tgh reason, but I will continue to take it.
Taking 2 Bio Kult Advanced capsules/day. Certainly no negative effects. Seems to have helped a bit with constipation issue. Did not expect immediate results so will keep taking this probiotic.
I am still taking Bio-Kult MInd 4 capsules per day and I don't really know if it is beneficial or not. I had a bad fall about two months ago and initially thought I could never "come back" from injuring my knees and a shoulder but I am feeling better and think I am back to where I was. I'm working now trying to get back some strength and balance. With this disease you don't know what is really going on because of all the fluctuations. I just think it is worth trying whatever I hear about that might help. There have been a couple of recent studies linking gut health to brain function so I'll stay with the probiotics and eating a "clean" diet (mostly vegan). I definitely have less aches and pains if I stay away from animal proteins.
Ladyaudree, are you still taking bio kult mind?
Yes I am but I don't know if its helpful. During the past year of Covid19 I've slacked off on everything and am feeling worse mentally and physically. But there is lots of research on gut health and probillus subtillis PXN 21 which is in MIND in the greatest amount is the only one called out by name. If only there was a chart to tell you how to equate the dose given to round worms to what I should be taking (lol). Are you taking it? Do you know anyone else who tried it?
I have taken it very sporadically during the past year. I feel like I tried virtually every supplement which has been mentioned on this site and, with one exception (a Vitamin B complex with really high B12), I have no idea what helps.