Since it has been made clear that the gut microbiome plays a role in PD, I am seeking to better understand how probiotics factor in to this. I take BioKult. In her most recent talk, Dr. Mischley expressed that she is opposed to probiotics but she did not elaborate. Does anyone know? What about fermented foods? I would appreciate any links or personal experience.
Probiotics? Are they helpful? BioKult? Dr... - Cure Parkinson's
Probiotics? Are they helpful? BioKult? Dr. Mischley says no probiotics but not why?
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28 Replies
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I don’t have any links but I can tell you that I’ve been taking probiotics on and off for many many years and I think it just depends on your system and what it can tolerate. I think an over abundance makes it worse because you’ll have constipation and what not but then if you don’t take enough then you have to worry about the good flora and the bad flora. Years ago I had some dental work and because of the anabiotic‘s they gave me a lot of my good flora was destroyed so I’ve had to always take some type of probiotic to replenish that. I personally am now taking something called Holigos. They are little packets that I take once a day every day and I have an AutoShip so I never miss a dose. I put them in the fridge and then put them in water and they taste slightly sweet but I’ve had good luck with it.
• in reply toMissRita
Thank you Rita. I will look in to what you are taking. Just this morning I found Dr. Will Bulsiewicz. I am going to get his book on the gut although i doubt it addresses PD.
MissRita• in reply to
Is it on Amazon?
• in reply toMissRita
I was just listening to him on YouTubeHe rambles
His book is on Amazon
I need to preview it more before getting it
docjleonard55• in reply to
Just finished it a few weeks ago. A worthwhile read, although for me it would be difficult to follow to the letter. I do what I can to increase fiber intake.
Symprove update? Discussion of a liquid probiotic Symprove a couple years ago.
All Laurie's recommendations come from the study she has done for about 10 years on what people with slow progression do. It changes as she gets more data.
This article that received today talks about probiotics & fermented foods. Dr. Mercola seems to do a lot of thorough research.
products.mercolamarket.com/...
• in reply tolaglag
Thank you!
Based on Wahls I have made sauerkraut and kimchi staples of my diet.
Typically I would assume it was bc of her study but she talked about the study at length and made no mention of probiotics during that time. She did say something to the effect, “I have a strong opinion on probiotics” and never said her opinion.
I have an appointment with Dr. Mischley in April. I will ask her specifically.
• in reply toNRyan
Thank you!
What did Dr. Mischley have today about probiotics when you asked her?
I do wonder whether some of her results for supplements are because people with faster progression get more desperate and are prepared to spend more money trying more things. Eg if you were progressing very slowly and doing really well and not taking probiotics would you then go out and start taking them?
Her studies show associations between taking various things and speed of progression but they don’t mean those things cause the progression. Could it be the other way around?
Maybe people who start taking probiotics because they are diagnosed with PD also are more likely to take another supplement or a pharmaceutical which is the actual cause of the progression. Maybe they have already been taking a whole lot of drugs to manage symptoms of depression, constipation etc before even being diagnosed.
It would be interesting for example to have a study that looked at the general population who take probiotics consistently for years for health and don’t have a PD diagnosis. Are they more likely to develop PD? It is clear the PD starts well before symptoms appear so are there people with very early PD that develop it so slowly they never realise they have it? These people won’t ever be in her studies.
I think there are so many variables it will never be possible to do a scientifically valid study.
• in reply toLAJ12345
I really appreciate her intentions with her study but for the reason you mentioned, I am concerned that it can lead to misinformation. For example, in her study melatonin is associated with faster progression but melatonin has some neuro protective properties. Also she encourages eating all fruits but some fruit has a very high sugar content and can be detrimental to brains at risk of dementia. This is well documented by doctors like Dale Bredeson.
Sapeye2020• in reply to
CC I have a question about the Dr . Mischley Melatonin statement you posted. Do you know if is a high amount of Melatonin in the blood or a low amount of Melatonin ?, as the natural progression is for the body to slow down production over time until when we poor old mortals hit ~ 60 yrs. and then have to supplement to eg: sleep or even get to sleep and stay that way for a minimum regenerative sleep (time) .
PS. I am supplementing at 60 mg per night after ~ 6 + months of poor or no sleep I now get 6 full hrs of sleep . At about 12 weeks since dosing @ 60 mg Melatonin I also feel less creaky in my back and legs when I get up in the morning.
T I A.
• in reply toSapeye2020
I mentioned Dr. Mischley s statements about melatonin not to validate them but to point out the flaws in her study. Just bc someone with advancing PD takes melatonin does not mean that the melatonin causes the PD to advance. I find it concerning that a doctor would disseminate such unscientific information. There is much information available about the benefits of melatonin. Dr.Mischley also mentioned she eats 2 bananas with breakfast as if that is advisable when it most definitely is not. That shows a lack of understanding of the high sugar content in bananas and the affect that has on the brain. My point was that her mentioning melatonin in the way she did is evidence of the deep flaws in her study.
Sapeye2020• in reply to
Gotcha. I spoke via to my Nuero a month ago and told her I had started Melatonin daily and was taking 60 mg, she was surprised that I was not getting bad headaches and that had never heard of anyone being able to take that MUCH... My wife, a ret. Nurse Educator, and I later discussed the lack of up-to-date knowledge of different supplements etc, wife said in Nuero's defense , taking into account having a office practice, being the second Neuro on Hospital call every second weekend, as well as being the only MDS in town she probably had little time to be right up to date on small things... I acquiesced.
• in reply toSapeye2020
Neuros are overwhelmed. It’s very understandable. Which makes finding one one’s home is not burned out and who is at least aware of research very hard. All the more reason to be on this forum educating ourselves!
Wow, 60 mg a night. Art would be impressed. How is that dose working for you? Still going strong with it?
To me, probiotics, synbiotics, prebiotics and fermented foods can be useful, but, and this is a big but, bacterial species and quantity are two very important specifics that can make the difference between benefit and no benefit.
As an example, look at this study using probiotics in AD patients. They did not skimp on the bacteria amounts (400 billion bacteria for each of the 4 strains or 1,600,000,000 per day) and they only used 4 different very common strains as opposed to patented strains which can get costly very quickly at adequate dosing as used in this study and achieved benefit in just 12 weeks!
sciencedaily.com/releases/2...
Now for the downside to this study. Look at the choice of patients, all are severely cognitively impaired! Being as it seems there may be a" point of no return " in AD, perhaps the patient selection could have been a mix of different levels of disease progression rather than just severe patients. On the positive side, they were still able to show some cognitive improvement in this severe group in just 12 weeks. The downside to this aspect is it does not give any idea of what would have happened had the study been longer. Would benefits continue to accrue or would they plateau at the 12 week mark? Would a 24 week study have showed even further improvement? Would using patients with mild to moderate AD have produced better results or possibly shown a reversal of symptoms?
Another consideration, given the fact that they were able to show measureable benefit in severe AD patients in just 12 weeks, it makes sense that they would have tried another study to try and replicate this outcome and then followed that up with a longer study with a larger. cohort. Note that this study was done in 2016 and we are now at 2021 or 5 years later and no direct follow up studies to this one promising study. Given that AD is the number one neurodegenerative disease in the world that holds the potential to overwhelm our medical resources, it seems like the NIH could have funded two studies to see if this simple and minimally invasive treatment could be a way forward for people with dementia.
Look at the simplicity of this study. All they did was drink a 200ml / 6 3/4 oz of milk with the probiotic in it each day, that's it!
So I do believe probiotics have potential, but most probiotics are too expensive to take at these CFU levels and the majority of probiotic studies are using dosing levels way below one trillion. I would kind of compare it to taking 1/4th of the C/L you are supposed to be taking and then complain because it has little to no benefit for you.
Art
• in reply tochartist
Art, I will need to read this in the AM with wide eyes and coffee in hand. By Friday afternoon I’m foggy.
There are answers lurking in our gut microbiome. I wonder what your thoughts are on Symprove, that liquid probiotic being studied in the UK?
How does one determine how much US government funding is going in to PD research?
I assume a shameful pittance.
What if we were to start a petition to start government funded PD microbiome specific research? During Covid is unfortunate timing but I’m not going to accept excuses to procrastinate.
chartist• in reply to
Sorry, I somehow missed this post and only saw it just now.
My thinking on Symprove is that it is fairly expensive and when I looked on their website, they don't even list the dosing rate . To get it here in the US, costs $35 plus tax. They use 4 common gut bacteria that are available here for less. In the UK study that I saw, it was somewhat helpful for UC, but was not helpful for CD. Overall, it does not seem like anything special in the world of probiotics. They also do not say if their product contains any type of prebiotic. They do say their product is water based and less likely to trigger the digestive response and according to them, this may make their product more effective at not being destroyed by the digestion system. Imo, you can get products in the US that are comparable for less expense.
Art
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