A British probiotic called Symprove appears to be able to reach the lower gut whereas others do not. A BBC 4 radio podcast at
bbc.co.uk/sounds/play/m0006zvs aired an interview with a British neurologist Dr Raymond (?). His patients have experienced significant improvement in symptoms after 12 weeks on Symprove which is available through Amazon.com. Encourage you to listen to the podcast. Very promising.
A double-blind study is underway.
Thank you jenniferdunstan. I listened to the podcast and... ordered two bottles. I will give it a try - a previous try with probiotics was not appreciated by my guts. Let's see what this one will do.
Best of luck to the both of us! Roast beef 01 hand yes
Best of luck Jennifer !
BTW do you have a clue on how much per day are we suppose to drink ?
I just got my first bottle and it says to take one full cap (70ml) in the morning 10 minutes before eating. There is a 12-week program advertise on the label but I don't anything about the particulars, or if it is specifically intended for PWP. Visit their website at symprove.com for more info is my thought. I have asked Dr. Raymond Chaudhuri at King's College Hospital for guidelines on dosage.
I'm very pleased that he has a presence on HealthUnlocked now.
Good luck!
Xenos - how's it going with the Symprove? I ordered just 1 bottle for my husband to try as his tummy is very sensitive. He finished the bottle today but it was not a pleasant experience for his stomach......lots of wind which he seems to attribute to the Symprove. I am very disappointed as I would like him to try it out for the recommended 12 week period.
He was the same with Mannitol when he first started on that a few years ago but a few months ago he tried Mannitol again and was able to tolerate it. Maybe the same thing will happen with Symprove?
Sorry Glenandgerry, but I did not begin yet. I am trying to find out the proper dose of B1 without success. I will switch to B1 pills first.
I will post what happens with Symprove as soon as I begin taking it.
Hi there
It's Dr Raymond Chaudhuri at King's College Hospital. I'm pleased there is going to be some research into this.
Thank you for your work! My question has to do with dosage. How much should I take daily? How long (approx.) will it take before I sense an improvement?
Thank you.
Interesting. A field which is attracting increasing interest and proper investigation, and as my very first post said, I think is likely to prove critical in tackling this disease (the microbiome, gut/brain axis)
Hopefully trial results will be available before too long. I might be tempted to have a go before then, since its relatively risk free (apart from money) although I think I can wait until my next scheduled trip in November to buy the 3 month trial
Interesting too that this trial quest was triggered by the mouse trial which showed the pathology of the gut brain link, and that misfolded alpha synuclein is presumed by this branch of research to be responsible. That bodes well for SPARK.
I have just finished my one month personal trial! No adverse events other than predicted changes to BMs (bowel movements) which stabilised eventually. Changing to a plant based diet had already improved BMs but I credit Symprove with further improvements. The original flavour has no artificial flavouring or sweeteners so I would only recommend that one even though it tastes awful. Its really hard to tell but I reckon it has improved my physical and mental state. Complicated by some recent tremor progression so difficult to distinguish - makes you realise how difficult it is to measure therapy in PD.
It's hard to measure for sure - particularly if the approach is tackling the disease and its progress, rather than bandaging symptoms. I had that discussion with my SPARK trial neurologist yesterday, indicating that I couldn't really say I was better or worse - the symptoms seemed to cycle round a bit, some getting better whilst others seemed worse and then all change
I measured better, but I was having a good day.
I think 2 conclusions
- even 6 months is a fairly short time for measurement of these things, especially when the powerful placebo effect is allowed for
-Whilst the disease may stay constant or deteriorate steadily, our normal "health" fluctuates in a cycle over the top of that disease. But because we have PD we see that as a fluctation in our "maladie" when in fact it is normal health fluctuations super-imposed over the top
Hopeful - thank you
I noticed that Fruugo has it for $23.95 a bottle. However, the Better Business Bureau gives Fruugo a rating of D+.
Amazon won't ship to USA address. Does anyone have a way to get it to USA?
It's available from Amazon US website. I ordered my Symprove there yesterday it's about $68 a bottle but if it works it's Worth it..
Just wanted to let you know that Fruugo has it for a pack of 4 bottles ( 4 week supply) for $100.00 (includes $10 shipping cost). I ordered it and got in 10 days from UK. Works out cheaper than Amazon that charges 68 bucks a bottle (initially ordered 2 bottles from Amazon, but wanted to try Fruugo). The Fruugo cost works out the same as what it would be if one were to order from the Symprove Website - including shipping, they charge close to 231.00 British Pounds for 12 week supply that is close to Fruugo rates when converted to dollars. Yes, they also ship to the US ( they replied to my email with the pricing details - (see below their email response)
@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
Hello
Many thanks for your email.
It is fantastic to hear Symprove is travelling far and wide! If you could please confirm where you heard about us for statistical purposes that would be great!
Please Note: We will be shipping every Wednesday for all orders received and paid for by the previous Friday.
Please be aware to comply with FDA requirements the Symprove will be in plain white boxes with the full information leaflet inside.
We have to pass on the cost of air shipping and cannot guarantee the speed of delivery due to different practices at customs in various countries. Also, please be aware that you may have to pay import duty/tax when it arrives in the country. The bacteria will be fine to travel this distance, we frequently ship Symprove overseas and our product has a 4 month shelf life.
The cost to ship the 12 week programme, including the free 4 bottles and shipping is £231.67
If you would like to order please can you confirm your full address, your contact number, and the number of bottles.
If you have a PayPal account, I can send you a payment request?
Thanks and regards
Jemma
Chris, Jemma, Abi, Amy, Louise, Rebecca
Customer Service Team
Symprove Limited ǀ symprove.com
t: 01252 413600 ǀ support@symprove.com
Jennifer - thanks for the information. Just now ordered 2 bottles for my mother from Amazon ( Mango/Passion Fruit flavor. Now that I will have 500mlx 2 bottles, taking 50 ml per day means I have enough supply for 20 days. I should definitely know within 2 weeks if it helps. Hopefully it helps and if it does, I am going to use the 50 ml from the remaining stock of Symprove to make a yogurt based culture (mixing Symprove to milk that has been almost boiled and then left to cool at room temperature or just luke warm). After all it is just like another probiotic that has bacteria. So, I wont be surprised if I can have culture that is now thriving in yogurt and use that repeatedly to make fresh yogurt using the previous cultured yogurt that was obtained using 50 ml of the stock the very first time. ( You know like making yogurt the first time - using a yogurt sample and then using a sample of the just prepared yogurt again and again to make a fresh batch, every time and any time you want, as and when you need, just before the yogurt gets over - that way you never lose the original bacteria from the Symprove). Given that the product is costly, I feel that it is worth trying. (I still prepare yogurt that I prepare at home using the sample culture - buttermilk - that was first made over 15 years back).
John, if you don't mind please share your experience with culturing yogurt using Symprove. Years ago I used to culture kefir and kombucha but no longer do that. Never tried making yogurt, however now getting interested in doing that although have some concerns about contaminants in milk.
Understand Symprove is water based so if taken before the gut wakes up it doesn’t start the digestive process therefore it gets to the lower gut. If cultured with milk it would start being digested once it gets to the stomach therefore not making it to the lower gut?
Faridaro,
Of course it would be a pleasure. Typically this is how I prepare yogurt. The procedure may seem lengthy as you read my post, but it is really simple. The details make it lengthy.
Assume that to begin with you do not have any yogurt. So get a buttermilk from the store - I want to stress that good quality would be apt to make wonderful yogurt. (some buttermilk from the store have a odd smell rather than a refreshing/no smell; use the one that has refreshing smell or no smell at all, as that is what is going to be duplicated in every batch in the Yogurt you prepare).
Get some good buttermilk. Pour about 50 ml on to a cup and let it sit for 5 to 6 hrs. at room temperature. It serves 2 purposes - 1) Bacteria that is in a chilled environment will now be more active at room temperature, alive and kicking; this helps in the formation of yogurt. 2) The buttermilk becomes more sour as it gets exposed to room temperature for long periods - meaning bacteria are live and thriving ; We want this ! as this enhances the conversion of milk to yogurt overnight (more below). The more sour it is the lesser buttermilk you need to add to milk (even 25 ml would suffice instead of 50ml). Hence, in summer as it is hot, you can keep the 50 ml buttermilk outside for 5 to 6 hours for it to be sour (assuming that it is not sour to begin with; but many times once you open the buttermilk and use it partially and keep it back in the refrigerator, it gets a little more sour than when it was fresh). In winter, you can keep the 50 ml buttermilk outside early in the morning itself allowing it to thaw to room temperature, so that it can sit for 10 to 12 hours ( does not get spoiled) before you use it in the night to make Yogurt.
With this background let us get started ( very simple and cheap too). I do this a couple of hours before going to bed at night and do it once a week. (enough yogurt for a week).
1) Take about half gallon of milk - organic or otherwise (1%, 2% or even whole milk - more fat means thicker your yogurt will be; I use 1% milk 2% should be good too - never tried whole milk as it is too much fat).
2) Heat the milk on a low flame and bring it to almost boil ( no need literally boil) when it just starts to slowly rise or even when you notice that a thin layer of cream appears distinctly. Preferably use a steel vessel to do this, or transfer to a steel bowl once the milk is done (heated milk). Low flame and slow heating means that the bottom of your vessel is not charred from the inside especially if you are using a steel vessel to boil milk. Else, you will have a layer of burnt milk on the bottom of your vessel.
3) Allow the hot milk to cool down - either to barely luke warm (best) or even room temperature will do. Remove any layer of cream formed during the process of cooling ( do this may be once or even twice as the milk cools). This cooling should take an hour or so. Allow nature to do its thing. I have seen folks cool it in a freezer to get it done immediately ! Wonder why the rush in everything and anything ? )
4) Now that the milk is cooled nicely as described above, place it on the countertop in the kitchen. Stir and add the buttermilk (50 ml or 25 ml) that has been sitting at room temperature) to the milk and give (the milk that has buttermilk added to it) a gentle stir with a spoon or a straw; use a plate to cover the container and let it stay overnight. If your buttermilk is sour, then when you get up in the morning, your yogurt will be done nicely, especially during summer - transformed from liquid overnight to a thick and chunky mass. If the yogurt is barely done - still in liquid / semi -liquid/ very loose jelly form, then let it sit for a few hours during the day and it will be done. In winter when it is cold, you can either turn up the heat overnight in the house or use a space heater (that has a thermostat) - not too close to the vessel ( I use a space heater in winter rather than heat the whole house).
Now that your yogurt is done, it is ready for use. Keep it refrigerated and you can use it for days, even up to a week or 10 days. Often, once you break the fresh yogurt and use it the first time, then it gets relatively more sour with each passing day even after being refrigerated, especially after a couple of days. Thus, typically, yogurt on day 5 will be more sour than yogurt on day 2.
Final note : When you want to prepare the next batch of fresh yogurt, there is no need to use buttermilk again. Instead, the yogurt that you prepared will serve as the culture for the next fresh batch. It will be sour (if not keep it outside at room temp. for a few hours as described above for it to become sour), has the same bacteria and will be as good as the buttermilk. Use the above process and use yogurt that you have instead of buttermilk every time you want to make a fresh batch. I have been making yogurt for more than 15 years using the yogurt from the previous batch, going back all the way to the root - the first batch. Basically, you need buttermilk only once to begin with. Then yogurt from previous batch serves as buttermilk for the next batch. (All the more as to why you need to start with a good quality buttermilk - with no odd smell etc. as it is replicated in each batch). You may want to use fresh buttermilk to make a fresh batch of Yogurt, after a few cycles.
Hope it helps. Give it a try and enjoy.
Thank you so much John for taking time to write this detailed recipe, especially the warning about burnt milk - when I was young we didn't have pasteurized milk and sometimes my mother burned it during boiling - I absolutely hated that taste, however, it's been so long that I completely forgot about it.
Also appreciate the tips about room/weather temperature affecting the fermenting process. Actually I live in Florida so no need for space heater even though we have one just in case for unexpected arctic weather front which comes down very rarely.
And I understand the concept of mother culture as years ago for a little while I attempted to bake sourdough bread using part of the previous dough to start a new batch and yogurt making process sounds very similar to that.
Although according to some studies PwPs should be avoiding dairy products I think small quantities of good cultured milk could be beneficial for building gut microbiome. Printed out your message and can't wait to start making my own yogurt.
Many thanks for sharing your longtime experience!
I am sure you will have a nice batch of Yogurt. Florida weather with the humidity and heat should help. I am planning on using Symprove instead of buttermilk as the starting culture to make Yogurt for my mother. It should work - hopefully as it has probiotic bacteria. Should it work, then I can save money and also give more quantity orally.
More info - medium.com/parkinsons-uk/pr...
I have ordered a 12 week supply so will see how it goes?
Could you please let us know how much you paid for the 12 week supply and the website ( is that from the company website or Amazon). I am assuming you are in the US.
I am in England & bought it directly from the makers £158 for 12 week supply
Ok - thanks for the reply and really hope it does some real good magic for you. Please let us know your progress - may be once a month if you do not mind.
Biff69
Any update on Symprove and its effect (hopefully something postive)?
I am now 10 weeks into taking it & will be carrying on. Only definite but important change is to bowel movements. Now much more regular & comfortable. Mood is always positive anyway & physical movement is stiff & slow to start. Will be carrying on with the Symprove for the time being. Gary
Gary,
Good to know that there is some real positive effect. My mother has been on Symprove for almost the same time as you have been. I can say without any doubt that her mood&general behavior have improved (quite noticeable); especially her bad days are now not as bad, or anywhere close to where it was before. (Yes , she has alternate good/bad day that has been going on like clockwork - rather than on/off period during the day that is typical of any PD patient. Do not ask me why/how it happens... even doctors are clueless; and it has been more than a year now - the good days are such that it is difficult to tell that she has PD in all aspects - be it behavior, speech, walking, eating, mental make up etc. while the bad days are almost the opposite as it seems that she is not in this world, lost and dazed). I am planning on giving her Symprove for another 6 months to see if there is further improvement. Her bowel movement was not bad to begin with before starting the Symprove dose and it is now even slightly better. Of course, I was/am giving her probiotic Kefir and Kombucha too. So all these may be helping her.
Good luck and hopefully there will be additional wonderful updates from your side in the next 4 to 6 months. Take care and best wishes.
Hi Biff69 - how's it going with the Symprove.....have you noticed any improvements/difference in your PD symptoms since you've been taking it?
Thanks
Gerry
Do you have to take it on an empty stomach or with food? Thank you
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