-
Probiotic could ease Parkinson’s symptoms
Have you heard of PS128? It’s a probiotic which, according to a small study, may ease symptoms of Parkinson’s disease when used as an add-on treatment. You can learn more about it by listening to this flash briefing.
What do you think of this news? Have you tried or will you try PS128? If you’ve tried it, have you seen any results?
-
33 Replies
-
After reading the study I decided to order Solace which contains PS128. Just started it a few days ago so it’s too early to notice any effect. I didn’t have any negative effect so that is good.
-
Hi Denise, I hope you’ll keep us updated if you notice anything! 🙂
-
Hi Denise – any update on symptoms reduction since you have been taking Solace? Did you take it for three months?
-
I listened to Ally’s “flash briefing,” but I cannot find the complete study. Please let me know what it’s listed as and where I might find it. Thanks.
-
I tried the Bened product and quit after 2 weeks of stomach upset.
-
-
-
I have been taking a probiotic VSL3# for a moth now and I think it has helped
Rona Scotland -
I was diagnosed with Parkinsonism in 2010 and have tried a bunch of things besides the standard medicines. Nicotine patches like they do in France. Coenzyme Q10 like they do in the US.
I have been using Lactobacillus plantarum PS128. Since it is a living culture, you can make your own. So I make “yoghurt” and eat it for breakfast. I eat about 1 cup in the morning, but even though I have been doing it for several months I have to admit I miss some days. I can’t tell if it helps or not–so I will keep making my own, which means I don’t know the potency of what I am getting. I really do believe that the gut and the brain effect each other, so I am not giving up.
One reason I haven’t felt the need to take the PS128 regularly is that for me Mannitol has given me my life back. Just the other day I suddenly realized that my smelling had improved a lot… I had already noticed things like my hands swinging again when walking (I haven’t done that for ten years!); my wife commenting that my Poker-face was significantly better; my handwriting has gotten normal size again and I can actually read what I write! I feel a lot less stiff–so I have dared to go out into the forest to pick bilberries (living in Sweden where we have the right of public access, one can pick wild berried in any forest). I thought that activity was off the books for me since a year ago I tumbled while I picked berries, so I thought I would have to give it up.
I have been taking 1 teaspoon a day of Mannitol for 10 months now. It took awhile for it to work, but even though the experts say there is no cure for Parkinson’s, this sure reduces the symptoms.
Good luck with the PS128!
-
Mannitol is used also as a water retention fighter in IV infusion in strokes.Is it in a form of a pill?What is the releasing company?
-
-
Greetings …
Thanks for posting this study … I will try Solace … the data seems compelling …
Re: Mannitol … After reading a spirited chat forum about it a few months ago (and following it for longer), I started using it … I began with a 1/4 teaspoon and worked my way up to 2 1/2 teaspoons in about three weeks … I based that dose on info I found on an Israeli broadcast news report with the scientists behind the original study …
I believe it is helping to ease my tremor and reduce some of the slowness … I experienced some changes in about two weeks, which continued to show improvements since … I feel a lot more comfortable moving … almost like my old self again … However, I don’t think this will work for everyone … if you try it, be patient …
I am using Bulk Supplements, which I found on Amazon … I’m eager to hear others’ thoughts and experiences on both of these …
cl
-
Thank you Charles for sharing about how Mannitol helps you. I just came back from a trip to see a daughter and her family, and I forgot to take my Mannitol along. I was gone five days without the positive effects of Mannitol disappearing. Which tells me there has been some major repair-work in my brain, cleaning out the Lewy body clumps and reversing some of the damage done. I don’t know for sure, but it has clearly been helpful for me.
Thomas Rutschman
-
It’s my understanding that PS128 specifically is not necessarily present in yogurt in great enough numbers to have an impact. Bened Life makes a capsule that is only PS128, but it is very expensive. I took one month’s supply and have now ordered the 3-month supply. Has anyone else tried it?
-
Yes. For my husband. I recently purchased the brand Neuralli, which is L. Plantarum PS128. I did get a first time discount to $130, from retail price around $185 for a 30 day supply with 60 billion CFU’s per 2 pills. It completely reversed his constipation, which he has had for over 3 years. Before I purchased the Neuralli, one month earlier, I bought another brand at a supplement store that only contained 5 billion CFU’s per pill to test it out, and it worked just the same as the higher CFU count.. I thought Neuralli was worth a try since it has 10 times the count of the All-Flora Probiotic which was only $35. It seems he had same results from both and so I’d suggest a person try the less expensive type first as I did if they are on a budget. As long as it has the L. Plantarum pro biotic in sufficient quantities.
-
Thank you for posting. What was the brand of the lower expensive one you tried that seem to work? Where did you buy it? I would like to try the one that worked on his constipation issue first.
-
PS128 is a specific strain of lactobacillus plantarum. Other strains have not been shown to have the same benefits.
-
So, I did a little research and it looks like the only one I could find with PS128 was Neuralli. Have you heard of any other brand?
-
There are some others that claim to contain it. As far as what any supplement actually contains, I am always skeptical:
https://www.fenixhealthscience.com/microvita-focus
https://www.nuvaceuticals.com/nuva128
-
-
-
The less expensive brand containing l. Plantarum is New Chapter, All-Flora Probiotic. My husband took 1 before bedtime and that was all he needed. There’s no recommended dosage so one could take 2 or 3 capsules before bedtime until they see results. My husband also takes 5 – 300 mg. B-1 or 1500 mg per day, and does red light therapy (photobiomodulation) with a medical grade Coronet twice a day. These 3 therapies, and the levadopa have eliminated 50% of his physical symptoms and as I previously wrote, the L. Plantarum appears to have eliminated constipation issue.
-
Hi I looked at new chapter but did not see that it contains ps 128…does it? Could it be less effective than solace?
-
-
Yes I have been using Bened Life Neuralli PS128 for about 5 months now. I’ve not really noticed any benefit other than it may have reduced my constipation slightly. It’s very expensive so I am considering reducing the dose or stopping all together to see what happens.
-
Regarding the discussion on Mannitol. Can someone tell me what specific Parkinson’s symptoms that it targets/improves? I am an RN, retired professionally but “working” full time as my husband’s caregiver – he has Parkinson’s. The only thing I know about Mannitol is when I worked in the ICU (many years ago!) and it was an IV drug to reduce swelling in a patient’s brain.
-
absolutely right.
-
-
About PS128. In France it is Neurobiotique from Synergia which markets the lactobacillus plantarum PS128. And it has to be refrigerated as soon as you get it.
About Mannitol. Like prunes which has a sugar the body cannot digest Mannitol is a sugar that the body can’t break down. Users usually complain that it gives a loose stool when they overdo it. I take 1-2 teaspoons in the morning and that usually is enough to avoid constipation for me. I am a firm proponent of using Mannitol since it has really made a BIG difference for me. When I wrote about Mannitol in the Fox forum, I wrote that Mannitol gave me my life back! I think that it is the most important ingredient in my Parkinson remedies box! If I had to choose only one thing to use against my Parkinsons, it would definitely be Mannitol. I think I have been using it for three years now and have felt that most every symptom has improved. For example: my voice has gotten stronger and clearer; constipation is seldom a problem; my balance is better; I sleep like a baby; I am less stiff; no longer have cramps in my legs; I never did have the Parkinson shaking; I walk almost normally; my poker face has regained most of its expression; my handwriting is now normal size now; no problem with concentration; etc. In a few days I am going to see a new neurologist and I am almost afraid that he will tell me I don’t have Parkinsons (I have had it since 2011). Though Mannitol doesn’t seem to be the solution for everyone, it has worked on many of the people I have shared my experience with it. Hospitals use Mannitol through an IV when the brain is enlarged because of a car accident or something. We are using Mannitol as a powder mixed with water or juice. It is FDA approved (as I understand) as a sweetener for people with diabetes. Even chewing gum uses Mannitol as a sweetener. But there isn’t much scientific proof that it works. So it is anecdotal proof we have. No big pharmaceutical company wants to waste money doing the double blind placebo tests when the powder can be bought on Amazon or through SOSA in Spain for 10 to 20 US dollars for a pound of it!
Hope this helps!
Tom
-
I have been using PS 128 for about 6 weeks and have noticed that I sleep better; longer periods of sleep without the intermittent waking.
I am 66 and 10 years into PD. I still exercise 12+ hours per week as my primary method of slowing the progress of the disease but am open to additional ideas like PS 128. While it is expensive and I expect no miracles from PS128 I have been pleasantly surprised with the better sleep pattern since beginning its use. I have not changed anything else in my exercise, diet, PD meds, (rytary and rasagiline) since starting PS 128.
-
Benned Life Neuralli has helped me greatly with constipation and eased my PD symptoms. I have been taking two a day for five months.
-
Checked this out. $165 for one bottle…pricey.. in your estimate, is the cost worth it? Ty
-
-
I’m almost 1/2 way through my 3-month trial of Bened’s Neuralli, and to this point I’ve not noticed any improvement in my symptoms. Honestly I didn’t really expect much, since my understanding is that early studies have only shown some improvement in non-motor symptoms, particularly insomnia and constipation. These are symptoms I don’t have (thank goodness) but saw no problem in trying to improve my microbiome. If I continue to not notice any positive changes from the Neuralli over the next month, I will discontinue taking it and focus on other things.
-
The cheaper brand that I’ve tried is MicroVita. It may have helped with the severity and frequency of my nightmares, and possibly with my leg and hand cramps as well. I say ‘might have’ because the symptoms fluctuate from day-to-day and week-to-week anyway. I would likely have to take it for years to say more definitively if it helped or not.
The Bened Life website looks so horribly thrown together that it turns me off to wanting to try that brand, especially for what they are charging.
-
I tried PS128 for one & half months now, have not feel improvement yet. It says that need two to three months to see the result. I will try it at least two months more.
-
My experience with Mannitol has been very positive. I have taken it for 4 years now and it has given me a new lease on life. Going out got out daily walk my wife commented that my previously non-expressive face was no longer expressionless. (I hadn’t told her I was taking Mannitol, so she wasn’t predisposed to assume I had done anything different.) And as I was thinking about that I realized that my arms were swinging as a normal person would do. My arms were moving again. As time went on I realized that many of my Parkinson symptoms were now gone. Normal Parkinsson medicine hadn’t given me that kind of results!
Mannitol is in powdered form (hospitals use it in IV’s when you have a trauma to your head, so don’t do that!) and a teaspoon or two a day is all you need. Mix it with your morning fruit juice.
Take it for a month or two. Not everyone is helped by it, but at a cost of 20 to 25 dollars a month it is a cheap remedy. It can be ordered through Amazon.
Sincerely
Tom Rutschman
-
I’m not sure about PS128. I’m a bit skeptical when the only small clinical trial is funded by the manufacturer of the product. This is at the end of the trial notes: “This work was supported by Bened Biomedical Co., Ltd.” I don’t doubt that some get good results. It could be the placebo effect, the use of a probiotic in general, and/or a positive response for some people to PS128.
I do use Lactobacillus Acidophilus – From Amazon – 120 days for $7 – a probiotic in phase 3 clinical trials on the Cure Parkinson’s website. Clinical Trials updated 2024 – See chart ½ down doc: https://tinyurl.com/mta79hze
I’ve done a lot of research and self-testing. I know that exercise is # 1, followed closely by a keto diet and intermittent fasting, plus a dozen supplements. For more info on keto see Dr. Mathew Phillips, a metabolic neurologist on Youtube: https://www.youtube.com/watch?v=iBNNIIDBIYU
PD may not be curable, but it appears that we can significantly heal. Best wishes to everyone!
tinyurl.com
Parkinson’s Disease Drug Therapies in the Clinical Trial Pipeline: 2024 Update - IOS Press
Background: For the past five years, our annual reports have been tracking the clinical development of new drug-based therapies for the neurodegenerative condition of Parkinson’s disease (PD). These reviews have followed the progress both of “symptom
-
There have been much discussion about Mannitol on these forums. Maybe they can be reposted? My husband has taken for over a year. It has definitely helped but balance benefit seems to be gone. It continues to help masking.
-
Here’s an update on Mannitol … I stopped taking it after four or five months when I noticed that there was really little to no change in the long run … It also made me horribly gassy … My doctor explained to me that whatever positive effect I thought I experienced was likely placebo effect … Just my experience … can’t speak for others …
-
After all this fuss about mannitol… MOST people seem to stop taking it. The original positive evidence for mannitol was basaed on animal models. An Israeli entrepreneur with PD was frustrated about “undone science” where potentially helpful treatments were ignored by big pharma because there was no potential profit from over the counter treatment possibilities. Clinical trials are very expensive and it’s hard/competitive to get comparable funding from foundations or government sources like thh NIH.
The Israeli guy set up a crowd sourcing platform called Clinicrowd, where patients could report about their own exeriences with mannitol. In 2018, “more than 1500 Parkinson’s patients from 42 countries” had reported that they tried mannitol on the CliniCrowd platform. BUT only 78 people had continued to use it for more than 6 months as of 2018. Of those 78, 56% reported improvement. Not too impressive.
In late 2018, Hadassah Medical Center in Jerusalem funded a small clinical trial, in which people with PD were randomly and blindly assigned to receive either mannitol or dextrose (placebo). They reported no significant differences in outcome between the two groups.
The same thing with PS128 might be expected for PS128: The positive findings were from mouse or rat trials. Know that only humans get PD, so these are “induced” models of PD in animals. either through selective genetic breeding or through exposure to toxins that destroy the part of the brain containing dopaminergic neurons. It’s well known that findings from animal trials don’t replicate in humans. Rodents and all animals except our closest mammalian relatives don’t even have the same types of dopaminergic neurons as the ones that are vulnerable to dying in humans with PD, i.e., dopaminergic neurons containing neuromelanin (which makes them appear black, accounting for the black appearance of the substantia nigra part of the brain). Please don’t get too excited about promising symptom-relieving treatments from animal studies. Look for clinical trials in humans.
At this point, the only treatment other than standard PD medications that shows consistent evidence of symptom reduction in people with PD is EXERCISE. The more vigorous or intensive the exercise, the better!
Log in to reply.