I have finally got round to trying this specialist probiotic - and started taking it this week.
There have been a few posts about this "psychobiotic" - a very specific genus of bacteria alleged to help with PD and other brain stuff. It obviously is of great interest to Winnie the Poo - microbiome and all that being my big interest.
The research reports online are mostly from people linked to patent holders or manufacturers, and results on this forum have been mixed - as is so often the way with this snowflake disease.
I wonder how much that is attributable to its requirement to be kept refrigerated. When it first launched in Europe, it was an Italian supplier, who supplied refrigerated packages, and for all practical purposes it was unavailable to me here in France. Then Synergia, a French manufacturer started supplying it marketed as "Neurobiotique" - with unrefrigerated transport, but advice that it should be kept in the fridge (stockage at 4-7 degrees centigrade - fridge temperatures). Just as I was about to try it - it went out of stock for months
It's back in stock. I have a box. I had a "stick" in Danone yoghurt on Saturday, 2 sticks Sunday, a stick yesterday, and today...
A "yoghurt" I fermented from a stick and some whole milk last night. And it is a good solid yoghurt - nothing special to taste (nor is its consistency best commercially). But it demonstrates that at least that stick had survived and had viable freeze-dried bacteria in it.
I will probably finish the litre of yoghurt I've made, and then go back to the sticks. But useful to establish it had survived transport (in winter) and useful as a backup if they run out of stock again
I wonder how many people who didn't benefit from PS128 had transport and stockage issues, and as a result didn't have viable bacteria.
Obviously, being Winnie the Poo - I sweeten my yoghurt with hunny!
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Is that available in the United States? How much do you use? What results did you find? Did you experience tremors or any dystonia and did that help? Thanks for your help and thanks for sharing the article.
I believe it has been available in the USA - but I think there may be issues with transport. There are several posts about it if you search the site. benedlife.com/products/neur... was one mentioned - and they claim to ship on ice. I think keeping the product cool in transit for as short a time as possible, and refrigerated for all but that brief transit, is important.
The best way to reassure yourself that you have live (well - viable) bacteria, is to ferment a yoghurt with them, which is what I have done
Each stick contains 30bn cfu (colony forming units) and I have taken one or 2 sticks. I have only really just started so would draw no definite conclusions about it at this stage. For what little its worth, I seem to have some better sense of smell, and slept the best I've slept in months last night
I think my point was really that almost certainly all the published trials have been able to address storage and refrigeration and therefore used "the real deal". A lot of people on the forum may not have known how long the product was unrefrigerated possibly in summer heat, and not tested to confirm it was alive on arrival, and that may account for some of the dissapointments
Hi Winnie. They do ship it cold . I hope they still do but it’s in the box — or it was the last time I got mine — with some kind of space-age ice pack . And it wasn’t a little teeny ice pack. It was a nice size.
I was doubting my memory but then I was reassured by the fact that I probably would’ve gone bananas if it didn’t have an ice pack system with it. this was from the US site.
I can’t tell if it’s doing anything but we’ll see. I hope it helps all of us!!
The PS128 sachets I buy are not frozen either - they don't come in the freezer, and are not stored in the freezer. If they were frozen they would probably be killed since the Freezer is at minus 18 degrees centigrade, and the storage guidance is 4-7 degrees centigrade
The powder you have is almost certainly produced by freeze drying. I used to be Finance Director of a probiotic manufacturing and research businesess in South Wales . This article explains a bit about the probiotic manufacturing techniques ncbi.nlm.nih.gov/pmc/articl...
Some probiotics are more robust than others. PS128 , in its freeze dried state, appears to still need appropriate cool storage.
It is fairly simple test to whether there are live (or strictly viable) bacteria in any probiotic product - and that is to ferment it in an appropriate food. In the case of lactobacilli ;ike PS128, that is usually milk.
If you take a probiotic yoghurt, or keffir, or powder, and you ferment it for about 8 hours at the right temperature in milk - if the bacteria are still live, in the morning your milk will have turned to yoghurt. If its still milk - the bacteria in your probiotic were dead
You need live bacteria in your gut to get a benefit from a probiotic.
There are several posts about it if you search the site. benedlife.com/products/neur... was one mentioned - and they claim to ship on ice. I think keeping the product cool in transit for as short a time as possible, and refrigerated for all but that brief transit, is importantThere are several posts about it if you search the site. benedlife.com/products/neur... was one mentioned - and they claim to ship on ice. I think keeping the product cool in transit for as short a time as possible, and refrigerated for all but that brief transit, is important
Ah, OK. I understand. benedlife say they ship on ice in the summer. Like I have ice blocks in my coolbox. That's not the same as frozen. In polystyrene packaging, like a coolbox, it will be at fridge temperatures of 4-7 degrees centigrade
I still think fridge temperatures, and in particular, not being stuck in a distribution warehouse for a couple of days at 30 degrees centigrade appears to be important for this probiotic.
If the product you buy is shipping from Asia to the USA in summer - then the chances are it will get quite a bit warmer than 7 degrees centigrade for quite a long time. Have you tested that it survived the experience and is still viable?
Making a yoghurt from it is a fairly simple test. If you add a tube to milk, in a sterile pot (fill it with boiling water, and then empty it, before making the yoghurt) then keep it at about 32 degrees centigrade for between 8 and 12 hours(I used a yoghurt maker, but just putting it in the airing cupboard will probably do the job).
If the bacteria are not viable they are going to do absolutely nothing for your health
Jay, you can also call them. I was telling Winnie that I get it in a nice ice pack system. And I’m assuming they still do that but if you’re unsure you could call. Or email. But I guess they would say yes it will be fine LOL.
And like it’s been noted, you don’t know where it really goes or sits.
And also with Ben med, I meant to mention that it is a little cheaper if you subscribe and buy one more than one box. But just a little cheaper unfortunately — nothing dramatic.
You’re welcome. It wasn’t much information but I hope it helped. So funny not, but after I messaged you and Winnie I happened to take my probiotic. And then I left it out on the counter all night! 🙄
I have been reflecting further on the yoghurt making. I wish I could find my old reference book for probiotics. Jay asked on another thread about the best food for PS128. I am assuming PS128 is a transient (like Lactobacillus Acidophilus) - it doesn't settle down and make a home in the gut (or you wouldn't need to keep taking it every day). But whilst it's there, you want it to be alive. And active. And that means giving it something to eat
This is of course the field of "prebiotics". Usually these are a source of carbohydrate in fibre not easily digested by humans (without the help of bacteria). But for a lactobacillus - the obvious food is milk! This is why yoghurt is known as a "synbiotic". It contains probiotics and prebiotics combined.
So how much? Well, admittedly a long time ago, when I last worked for a company making these things, to be described as "live" yoghurt had to have a minimum of 1bn cfu per gram. A typical pot of yoghurt is 125gm - so 125bn cfu per pot.
A good home-made yoghurt will have started with a seed culture and multiplied the bacteria to a level better than the commercial threshold of 1bn cfu per gram
Maybe the best way to go is to keep making the yoghurt. I don't think it would sell as a desert - it's a bit bland - and has quite a lot of liquid (whey) that the solid (curds) are covered with. But mixed with a bit of hunny... I know it's live and active
The counter argument would be I don't know how well it survives the stomach acid en route for the gut. I'm not about to start making yoghurt suppositories. The 1bn cfu threshold was in part to ensure viability AFTER transit through the stomach. And unlike with some dodgy probiotic supplements, I don't see any claims for magic coatings to protect the bacteria en route in any of the brands we're discussing
It's much less expensive too. Even if I use a new seed culture (new stick) every batch I'm getting maybe 6-8 pots per litre of milk (cost 1 euro). As the equivalent of 2 sticks per pot , at 6 pots yield that's 12 sticks for 1 euro . Less than 3 euros for 36 sticks. Beats 40 euros for a box!
Has anyone else fermented a yoghurt from PS128 and used it?
UpdateI've just made my 2nd batch of yoghurt. We couldn't get any whole milk on last week's online shop. And like the first batch it appeared to fail first time. My yoghurt maker has 2 modes. Mode 1 is for regular yoghurt made with streptococcus thermophilus and either lactobacillus bulgaricus or lactobacillus acidophilus. 8 hours at 42 degrees C. At the end of that I still have runny milk. So using the configurable mode 2 I tried a further 8 hours at 38 degrees. And got a solid yoghurt
So if your first attempt appears to fail it doesn't necessarily mean your bacteria are dead. This one is a bit tricky to make
PS128 is currently on sale shipping from Singapore. I'm not sure if I will try again, I didn't feel a difference the first time around. I was taking one sachet per day. In the clinical trials it was two per day. Including shipping, it comes out to around $58 per month buying from Singapore (on sale), at 2 sachets per day.
There's a lot to be said for using the sachets to make yoghurt. Proven viability and high cfu volumes at greatly reduced cost are a couple that spring to mind
There was no "here" in your post.If you can buy it, get it delivered and keep it stored, and it is alive, then you can mix the neurobiotique sticks with a bit of jam. Not a hot oat drink! You'll kill bacteria if your drink is hot. For the same reason avoid drinking tea or coffee within an hour of taking a probiotic.
You probably need 2 sticks a day to get 60bn cfu, which works out at around 2.50 per day
The real problem though is that without fermenting the powder into a yoghurt you have no way of knowing if they are alive or not. If they are not alive then you are completely wasting your time and money
I made the yoghurt from the sachet. Your yoghurt maker must be at a lower temperature- no more than 38C? Another machine had higher temperature and yoghurt did not form
wellbeingsg.com is having special 6 boxes for S$168 excluding shipping.
If you are looking for non-dairy probiotics, there are commercially available dairy free kefirs, kombucha, sauerkraut, kimchi...If you are looking for a particular strain of bacteria known as lactobacillus plantarum ps128, then kimchi and his friends are completely useless. Your only option is to find a reputable freeze dried source, with adequate temperature controlled transport and storage, and accept that even then the bacteria are not as bio available as they are in a live yoghurt.
kefir has more probiotics than yogurt. Understand it’s not the one that is the point of this convo. Kefir requires grains whereas yogurt diet not. I should have suggested yogurt instead of kefir
Point us nondairy means of ps128
coconut should be able to be used for something similar to a yogurt, same process
I've just had my first attempt at making the yoghurt from leftover yoghurt at 35 degrees and it was a success. I'm going to order some more neurobiotique sticks whilst it's bloody cold outside, and store them in the fridge and I should easily last until it gets cold again in November
Has anyone else made a ps128 yoghurt yet and proved the viability of their brand? Which brands are live on delivery?
I've just made my 3rd batch of yoghurt from the last glass of the batch (instead of the powder in the sticks) and it made first time at 8 hours and 35 degrees. Maybe this suggests the powder is a bit slow activating - another reason the yoghurt is likely to provide better probiotic availability than the powders.
And maybe a reason so many people don't notice any benefits from PS128
I'm sticking with it. I don't like to draw firm conclusions too soon, cos this disease blows hot and cold but l think this one is staying in my (pretty small) stack
Good day all. I have been reading your posts and the microbiome mind connection is something I really believe in also. I read an article some time ago in a fairly recent posting of The Science of Parkinson's newsletter which effectively referred to a Bacillis Subtillis strain that beneficial for cognitive function in PD. I have been purchasing a version made by a company cob as Bio-kult . It is their "Mind" brand to assist cognitive function. Its hard to know if its working or not. Ive been taking it for about a year now and I don't think my cognive functions have declined significantly so maybe thats the bar. I'm not sure which one you are referring to above but I will give it a go if Ican find it. Thanks for all the wonderful posts in terms of substance and collegiality. Im starting to look at the BDS road but id like to try these gloves and all non invasive remedies if possible.
OK so my search took me to benedlife.com/products/neur... which sells a brand of PS128 called Neuralli, it comes in bottles of 60 caps twice a day. its 165 for one bottle or 115 per bottle on their auto rnewal subscription plan. Seems very expensive...what are you buying and at what cost...thanks
Neuralli is a USA supply. I buy in the EU. Temperature controlled storage and distribution is important with this probiotic. So whilst neuralli is expensive it may be a good solution in terms of guaranteeing temperature, controlled distribution. Once you have live viable bacteria in your fridge then you can make yoghurt at relatively low cost
Hi there,Thanks to your inspired thinking, I've managed to make some yoghurt from a stick of "Neurobiotique" that I received from Amazon (UK) yesterday.
I don't have a yoghurt maker, so I put the cow's milk plus powder mixture in the airing cupboard. That was late last night; nothing had happened by the morning, but when I checked at 4pm, voilà, I had a lightly set yoghurt.
Can I just pick your brains on a few points please:
1. how much of this do you eat a day - a tablespoon? a bowlful?
2. how long do you reckon it should keep in the fridge?
3. do you use one stick per litre of milk or some other ratio?
I've been making my own kefir for years, but this is a whole new level of excitement!! Thank you so much for recommending!
Thanks for your extremely helpful and prompt reply. As well as cultivating the Neurobiotique, I'm also going to test whether some "broad spectrum" probiotic capsules I have actually contain live bacteria.
Thanks so much for the prompt reply. I see..... you take the supplement and you dissolve it in yogurt to make more of the bacteria yourself? Very industrious....How can you then be sure of the dosage? Gonna have to run this one by my spouse if I'm going to turn our fridge into a bacteria farm...lol
Thanks for your informed guidance. I will order some and give it a go and learn how to make it hopefully with your kind guidance,,,,well its 12;30 pm here so gotta get some sleep. will be reading more of your posts tomorrow, best!
Hi, do you have any links to where I can purchase this please. I am in the UK & have spent days trying to find it, but have only been able to find Neuralli in the USA which is very expensive. Thank you
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this was from the US site.
Milk Kefir for PD?
"DAIRY" and PD... Should you...or shouldn't you?
PS128 Probiotic 
