"Conclusion: The present study demonstrated that PS128 supplementation for 12 weeks with constant anti-parkinsonian medication improved the UPDRS motor score and quality of life of PD patients."
"We suggest that PS128 could serve as a therapeutic adjuvant for the treatment of PD. In the future, placebo-controlled studies are needed to further support the efficacy of PS128 supplementation."
my husband has taken this and there has been no obvious benefit unless maybe a person considers that his progression has been fairly slow - his Parkinson's seems to be more on the left side and it causes some weakness in his left leg and arm and he has tremors in the left hand when it is at rest - on the other hand his tremors in the right hand are more like essential tremor in that they do not seem to be very active until he is trying to use the right hand
there are some fairly strong claims for bacillus subtilis PXN21 as well and it supposedly inhibits alpha synuclein aggregation and has other benefits but so far we have not seen a lot of benefit thedailyhealthupdate.com/co...
i've also been taking this ... you might want to read about the clinical study with PD the probiotic plantarum...
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"Methods: This is an open-label, single-arm, baseline-controlled trial. The eligible participants were scheduled to take 60 billion colony-forming units of PS128 once per night for 12 weeks."
"Clinical assessments were conducted using the Unified Parkinson's Disease Rating Scale (UPDRS), modified Hoehn and Yahr scale, and change in patient “ON-OFF” diary recording as primary outcome measures. The non-motor symptoms questionnaire, Beck depression inventory-II, patient assessment of constipation symptom, 39-item Parkinson's Disease Questionnaire (PDQ-39), and Patient Global Impression of Change (PGI-C) were assessed as secondary outcome measures."
"Conclusion: The present study demonstrated that PS128 supplementation for 12 weeks with constant anti-parkinsonian medication improved the UPDRS motor score and quality of life of PD patients. We suggest that PS128 could serve as a therapeutic adjuvant for the treatment of PD. In the future, placebo-controlled studies are needed to further support the efficacy of PS128 supplementation."
Open label studies are useless for measuring efficacy. Its cheaper, easier and more likely to provide an encouraging result (hence why they are popular), but its meaningless.
Watch out for a trial which has no placebo control group. "Placebo" effects are powerful in PD and can produce notable changes in UPDRS scores. This trial had no control group at all and is pretty much uninterpretable. Save your money.
I have been taking PS128 for a year without any noticeable benefit. I asked them if there would be duties to be paid ontop of the price and they said there would not be. I was charged duties upon receipt and they credited me back the difference. I don't think they have a handle on international shipping
thank you very much for your valuable feedback! STAY STRONG! there are 100s of international clinical trials... RIGHT NOW! I'm confident we are much closer to a 'MIRACLE CURE'!
thank you for your valuable feedback. STAY STRONG! there are 100s of international clinical trials going on RIGHT NOW! I'm confident that we'll soon see a 'MIRACLE CURE'!
i just visited their website... there are only '6' different strains in their so-called: "probiotic supplements" ... (2 of the strains are PD-centric -- which is great)... BUT BUT BUT...
their supplements are NOT sold on Amazon...
I ONLY buy supplements from Amazon so I can read the reviews and RETURN supplements if they don't do anything for me...
Hubby’s MDS just started recommending it. He hasn’t started it yet. He had improvement in his regularity with B. Subtilis. So hoping this one helps also.
For some reason I cannot open and read the 28 replies to your post. Can anyone help?
Just some feedback on PS128.
My husband has been on PS 128 since May/June 2021 and I wrote a post on it. It turned his life 180 around. He did not stumble and his driving was normal. Lately our son noticed that his photos looked different. His facial expressions are natural and beautiful as compared to a year ago when he had on occasions that PD mask. I realised that PS 128 had helped him in not just his motor skills.
Recently I read a report dated December 2021 on PS 128 - I can’t seem to locate it- but it listed spatial judgment as one of the benefits. I realised then that it is really true. When you cannot judge a slight incline or bump you will trip or stumble over it. Similarly when driving, when your judgment improves you stop veering into another lane.
My husband still takes his B vitamins but the greatest improvement was with PS 128 and redlight therapy.
He is not on any medication.
His constipation and gut issues were further resolved when we discovered that he is gluten intolerant. Cutting out gluten has been a game changer too as gluten causes inflammation.
Now, to find something that helps with atrial fibrillation.
Thank you very much for your tip on taurine. I read up articles on pubmed on taurine as well. It is really helping him. Since he started taking 1000x 3 times a day, the afib has stopped. Thanks so much and God bless
Does anyone have any updates on their progress or lack thereof with PS 128? The SOLACE BENED LIFE company has been aggressively marketing their PS 128 product all over the web. It's a Taiwanese company, but they acquired an American distributor and American marketing team less than a year ago, according to the following press release:
However, the people whom the company holds out as their "team" of employees are generally just private consultants, such as marketing consultants, product development consultants, science consultants, etc. who own their own businesses. Solace is just one of their clients. You can Google several of the team members and you will see this in their LinkedIn profiles (none of which mention BENED LIFE or SOLACE).
However, the company has been receiving several positive reviews from people with Parkinson's disease here:
A few people in the link above claim to have found the NEURALLI PS128 product by Bened Life to be a miracle cure which stopped their tremor, cured their gait, and much more. Yet, I'm not entirely sold on the positive reviews because they sound scripted. One of the reviewers has provided three separate reviews aggressively in support of this product. Normally, reviewers only provide a single review, not several.
As for the clinical studies, were they not all conducted in Taiwan? If so, that is where the company is located and, therefore, further inquiry should be made regarding the independence of those studies.
Its PS128 ACTIVE and MIND probiotics do not appear to be the same product as the one being sold by SOLACE BENED LIFE with the testimonials above. Also, does that well-being website still ship around the world? Millbrook, you are located in Singapore, and so is well-beingsg.com, so shipping will not be an issue for you. However, will they still ship worldwide and with ice packs when they do so?
Hi. There was a long discussion about this on the PS128 thread. The product can withstand certain temperatures and others on the forum have ordered it. You can read their feedback.
There were some issues shipping to the US. You can check with the company.
My husband takes the green pack which is the ACTIV
Another member living in Australia mentioned that he ordered from og.com.sg where the shipping was inexpensive.
He had them shipped to him without the boxes so the shipping weight could be opitimised
Thank you for mentioning this about their team. I noticed this too. I have written the company several times and have not received any response.
I am new to this discussion and site. I found you all by googling “Bened Life Neuralli reviews”.
I’m wondering if there are positive responses specifically to Bened Life Neuralli from Parkinson’s patients (or family, etc.) in the US who have participated in the discussions here. It is expensive and with no response from customer service, I’m hesitant. Thanks so much.
My wife recently finished her 6th bottle (6th month) of Neuralli. I was going to come back after three months and post about our experience, but wanted to extend our trial period to provide more thorough feedback. So now it’s been 6 months and, as promised, I’m back to share our results.
A few details about my wife and I first:
1. My wife was diagnosed with PD 12years ago. I am her husband and caretaker.
2. Her symptoms from the beginning have been her right side is weaker than her left and she sometimes catches her right foot while walking as a result. She very occasionally has shaking in her right leg, but typically this only happens when her medication wears off. She really has no dyskinesia or dystonia to speak of so we’ve been lucky in this regard. A few years ago she was diagnosed with SIBO and was given two courses of a powerful antibiotic called Xifaxan which got rid of the SIBO, but she still suffered from IBS symptoms like constipation, gas and bloating afterwards.
3. Her main problem now is her response to the levadopa/carbidopa medication. She has slowly required more pills more often during the day. She was taking about eight 25/100 pills between 7:00AM and 10:00PM and 2 Sinemet CRs at night before bed. A year ago we added amantadine 100mg (1/2 pill, 2x daily)
4. Her symptoms present as fatigue, slowness, stiffness, etc. if her medication dosage is too low and as agitation, overstimulation and unstable walking if it’s too high. This is referred to typically as LID (Levadopa Induced Dyskinesia), but my wife doesn’t really have much noticeable dyskinesia.
5. Other than levodopa/carbidopa 25/100, amantadine 100mg, and a few basic supplements, my wife doesn’t take anything else for her PD, with one notable exception which I’ll discuss next.
L. plantarum PS128:
“Lactobacillus plantarum PS128 (PS128) is a specific probiotic, known as a psychobiotic, which has been demonstrated to alleviate motor deficits and inhibit neurodegenerative processes in Parkinson's disease (PD)-model mice. We hypothesize that it may also be beneficial to patients with PD based on the possible mechanism via the microbiome-gut-brain axis.”
The Add-On Effect of Lactobacillus plantarum PS128 in Patients With Parkinson's Disease: A Pilot Study
One last thing I want to clear up for folks in the United States before I share our results. BenedLife has a patent on L. plantarum PS128 in the US under the brand name Neuralli. If you’re in the US, you can get L. plantarum PS128 from other countries under other brand names, but by the time you add shipping, the cost will far exceed what you will pay for Neuralli in my experience. Also, L. plantarum PS128 should ship refrigerated. That’s not going to happen if shipped internationally. I had to do a lot of research to arrive at this conclusion, but feel free to prove me wrong. So here’s your source for L. plantarum PS128 in the US: benedlife.com. Sure wish I’d known this before scouring the internet for hours looking for cheaper foreign sources.
Now to the purpose of this post, our experience with Neuralli aka. L. plantarum PS128:
There is no doubt in our minds that Neuralli is helping my wife in multiple ways. Btw we have been very strict in our testing by not introducing any new variables or changing her existing protocol in any way. We apply a scientific rigor and skepticism when we try a new drug, protocol, or supplement. We chart her progress as we go. We cannot explain the positive results we are seeing other than the introduction of Neuralli.
Clarity of thought and focus
- The first result we observed after about a month was an improvement in clarity of thought. My wife takes Neuralli at 7:00AM and 7:00PM every day. We have definitely seen an improvement in clarity of thought in the mornings, specifically verbal communication and cognition. We talk about important issues in the morning now and she has a complete understanding, focus and easy communication that used to take much later in the day to achieve.
Calmness
Along with clarity of thought she has experienced a sort of calmness we have not seen in years. A more stable, peaceful demeanor has developed. Delboy381 said it about his experience and we agree. She simply feels more “normal”, as unscientific a statement as this may be. All I can tell you is. She’s herself again; best way I can describe it.
IBS Symptoms
The most dramatic effect – and only after month 2 - is that her IBS and constipation symptoms dramatically improved. She used to take Miralax every night before bed to be able to go to the bathroom the next day. Now she rarely takes it at all. Every morning she goes to the bathroom once or twice. The diarrhea, constipation, gas and bloating have all but disappeared. None of the dietary changes or drugs she took for SIBO or her IBS previously have worked as well as Neuralli. And again, we know it’s Neuralli because she hasn’t introduced anything else or made any other changes.
Improvement in overall PD symptoms and medication requirements
There’s has been an overall improvement in her PD symptoms. I think this comes from the fact that when your gut, and consequently your immune system, starts to heal, you feel better in general. She now has more energy to exercise due to the healing of her IBS symptoms. Her motor symptoms – dragging her right foot while walking and occasional stumbling - have improved. This took about 3 months.
The other thing that’s happening is her need for medication has been decreasing. At first, we didn’t see a pattern in her daily medication requirements, but now we see in the morning, when she used to immediately require Sinemet upon waking at 5:30AM, she can now sleep until about 7:00 without any medication until she takes her first Neuralli with Sinemet at 7:00AM. This alone is remarkable.
Also, she takes Sinemet about every 2 hours during the day, but now we’ve been able to cut her pills in halves and quarters and give her less medication as a result. We’ve seen a change of .25 of a pill here, another .50 of a pill there at various times throughout the day, and yet she has the same or more energy. We’re down to about 6 25/100 pills on average a day now. These findings are very promising considering her trajectory was more pills, not less.
Conclusion
This is where we are after Month 6 and counting. We are so used to disappointment that we hardly ever use the word improvement anymore, but factually documented improvement unaffected by any other variable other than Neuralli is taking place. I have no idea what you will experience, but if you ask me if Neuralli is worth a try, I would say yes for sure, especially compared to all the other nasty drug alternatives out there. Hope this review was helpful. Any questions, please let me know.
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