Parkinson's Movement
12,960 members11,532 posts

Probiotics

research.va.gov/currents/06...

PWP are prone to H. pylori

research.va.gov/currents/wi...

another good link on the same page

research.va.gov/topics/gast...

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I was recently contacted by Amazon that this item has been recalled due to contamination.

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Thanks Syncletica. I deleted the reference to prescript-assist. I skimmed that recall notice and interpreted it to mean the label was deficient, but upon reading the food and drug admin notice and the link below is clear that it is best to stay away from this product.

fda.gov/Safety/Recalls/ucm6...

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More on prescript assist. This is the 1st time I've run across this blogger, but he seems knowledgeable.

fixyourgut.com/hso-probioti...

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MBA,

Kia and Gio have both found good benefits with the butyrate producing probiotic

Advanced Orthomolecular Research AOR, Probiotic-3, in conjunction with a prebiotic. Kia used the prebiotic mannitol while Gio used mannitol to start and switched to xylitol which he found more effective for him than mannitol.

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

Art

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Thanks much Art. I thought I landed on a good product, but it just goes to show ...

I take mannitol, but will now check out these other 2 products. Kia &Gio (and yourself sometimes - (ha)) always know what they're talking about.

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Yes indeed, MBA, sometimes!

Research shows which bacteria are over abundant and which are deficient or missing in PWPs, now if they would just make probiotics to rebalance the gut in PWPs to find out once and for all if this is a viable approach!

I still believe that the fastest, easiest and cheapest way to find out if rebalancing the gut microbiome can reverse the disease progression is via a fecal transplant from a healthy gut donor, but it doesn't look like that will happen soon, so once again, we are left to our own devices to figure out what we can on our own!

They already know that mice that are given the fecal bacteria from PD model mice, develop PD symptoms. When they give germ free mice the fecal bacteria from PWPs, those mice get Parkinson like symptoms and when they give those same mice fecal bacteria from healthy people, the mice do not get PD symptoms! I just don't understand why it seems to be so difficult to connect the dots!

Art

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I thought they were already doing fecal transplant in humans, no?

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I used to think there couldn't be anything more gross, but I have since come to realize it's is a lot worse for the surgeon and the patient. If it would rid me of this meddlesome pest, I would do it.

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Well, yes, a bit gross, but that is mainly based on our preconceived ideas. The reality is that you used to have those bacteria in your gut in larger numbers pre-PD. The transplant should be faster and more effective than synbiotics.

Yes, I suspect there may be a few PWPs who might be willing to try it if the opportunity came along, but for now, we are left with probiotics and prebiotics.

Xylitol, as a prebiotic , has been shown in mouse models, to increase the prevotella family of bacteria, one species that is well known to be deficient in PWPs. The deficiency has shown to increase with disease progression. Cause or effect......it shouldn't take much research to figure it out!

Art

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I seen a television program recently where the fecal transplant was done by the patient swallowing 40 capsules that had been filled with the healthy fecal matter then frozen. I do not remember the patients health problem but the transplant resolved it.

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Yes, for digestive issues, but not for PD that I am aware of.....at least not in humans. There are rodent transplants, but they have not continued on to PWPs.

Art

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Here is a story of one person a FT cured and another it did not.

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This video stops prematurely before you find out what happens.

Art

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i watched a longer version of this video months ago and basically what was shared was that the pd patient shown in the video heard about a man who was cured of PD from a FT (inadvertently...he was taking the FT treatment for something else but it cured his pd...lucky guy) .. so he wanted to try the same "soup" that cured the other man. he contacted the dr who cured this other man and he tried the same protocol but unfortunately the same "soup" didn't cure him. i don't know what happened to the version with all of the details. maybe i saw it on someones website.

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pad10,

Thank you for the information!

Something I am now just realizing is that gut bacteria content can vary by location! That seems to make sense considering that standard diet can differ by the area in which you live, so someone living in Italy will likely have a different gut microbiome makeup than someone living in Australia. The Australian fecal transplant find may have just been serendipitous as a result of treating the other health issue, but it shows it is possible to treat PD through manipulation of the gut biome and that would be the most important point of this video to me. I suspect the fecal transplant donor was likely Australian, suggesting that their healthy microbiome may have been similar enough to the recipients microbiome when they were still healthy. So in the failed case, the donor may have been incompatible with the recipients gut biome, especially if the donor was from a different area, but the video portion I was able to see did not cover this aspect of the process.

The imbalance of gut bacteria is well established in PWPs. The deficient bacteria is known and the over abundant bacteria is also known, so it does not seem that testing for the deficiencies as well as the over abundant bacteria would be too hard to do.

If this line of research continues on a positive course, I can see where one day, it may be standard operating procedure for your doctor to take stool samples when you are in a healthy state in order to have a basis of comparison for when you are sick in order to bring your gut biome back into alignment with what is your norm.

Perhaps one day in the future, when we go to the pharmacy , instead of picking up a prescription of some type, we will instead pickup a computer designed fecal enema! Hmm, sounds a bit gross, but if it works..........

Art

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At first I got a little excited when I saw this:

clinicaltrials.gov/ct2/show...

But then I saw the date and the fact that they have not even recruited the participants yet and now the thrill is gone!

Art

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Even Consumer Reports is writing about it :

consumerreports.org/parkins...

Art

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I agree with you and it could also have to do with your ethnicity. I just read about a Dr. who is reversing Alzheimer's through diet among other things. I just ordered the book so i dont have details yet...i think exercise is also part of his protocol.

amazon.com/gp/product/07352...

but i am thinking that if he does this through diet and exercise (and other things) then these things must be changing the gut biome. so im thinking diet and exercise can change the gut biome. im assuming the gut plays a big role in Alzheimer's also. i wish we could find someone who reversed pd through diet and exercise.

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I have read numerous accounts on various Parkinson's forums of PWP who have greatly diminished their symptoms and some who are symptom free from diet and exercise.

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MBA, thank you for the video. i tried the walls diet (as best i could) for several years but it didn't reverse my symptoms. having my gall bladder removed didn't help...i have trouble digesting large quantities of veggies and fat. plus cant eat raw veggies now. but i eliminated processed food .. that was a huge change...so for me i need to find the other missing pieces to heal.

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Your path is even more complex than what is already a complex path.

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pad10,

Yes, the gut is definitely thought to play a role in AD as well as PD. The following rare probiotic study in AD patients showed benefit in just 12 weeks! That is pretty unheard of in AD/dementia! A few important points or at least I thought they were, are the relatively short length of the study, the fact that it was a human study as opposed to an animal study and the probiotic dose that was used(very high)! This study really makes me wonder what would have happened had they continued the study for 6, 9 or 12 months. Would the benefits have increased?

sciencedaily.com/releases/2...

The dose used to good effect was higher than what I have previously seen in other probiotic studies and this may be a clue about probiotics in general.......is more, better? Clearly, in this study it was!

Art

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Hi Art! First so grateful you are on HU! I do take mannitol and just started AOR probiotic that Gio takes. Is it important to take them at the same time in order for them to work together ? Some days I’ll also drink some Kombucha. Can there be too much of a good thing? One last one I read somewhere on here a brief mention of b3. Should one be taking that with B1? I don’t take bcomplex because I have mthfr and can’t have folic acid . Thanks Art for any info!

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Hi Connie,

It is not critical that they be taken together, but my preference would be to have the mannitol already in my system by the time I took the probiotic. I imagine that you can take too much, but I don't think I have done that yet.

Regarding the B-3, generally when people say B-3 they are referring to niacin, niacinamide or nicotinamide, but I think the B-3 you are referring to is actually another more expensive form that is discussed on this forum, called Niagen.

Since you are already taking thiamine and Marco says he is currently available, you might want to ask him about your current protocol and what he would suggest in terms of any adjustments you might want to make. That will be your best bet in terms of getting the most out of the thiamine you are taking! Once you have maximized and stabilized your thiamine benefit, then you can consider adding to it!

Art

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Thank you very much Art!!

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Are there any foods that you know of that are good sources of prebiotics and probiotics? I can’t get xylitol or mannitol where I live (your prebiotics) and I’m finding the probiotic supps are VERY expensive!

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There are many other prebiotics and many probiotics already have prebiotics in them (synbiotics). I mention mannitol because several here on HU are already taking it as part of their daily regimens. I mention xylitol because that is what Gio and I use.

If probiotics are too costly, you can consider things like kombucha, kimchi, sauerkraut, pobiotic yogurt, kefir and the like.

Art

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Been giving my husband mannitol for several months but not noticing any symptom improvement. Thinking of changing to xylitol. May I ask, what was your thinking behind using xylitol instead of mannitol? Any tips with regard to dosage? Does it cause the same amount of gas as mannitol?

Thanks.

Gerry

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Gerry,

I think I should make it clear that I do not have PD and am taking the xylitol for another health issue and am specifically looking for its butyrate and hydrogen sulfide enhancing effects.

GioCas is taking it to help feed the very specific probiotic that he is taking and according to him , he feels the combination definitely helps him. Xylitol, like mannitol is a known butyrate enhancer and that is the main reason I take it among other reasons. There are no studies that I am aware of that show that xylitol can have the same effect on the brain as mannitol so xylitol may not be exactly what you are looking for.

Art

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Oh my goodness Art, how wonderful of you to put in so much time and effort on HU when you do not have PD!

My husband is taking the AOR probiotic so I think it's definitely worth trying xylitol. 😊

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Hi Gerry,

No, I don't have PD, but I have several friends who do and that is why I gravitated to this forum.

Please let us know how the xylitol works for your husband. Like mannitol, resistant starch and many other prebiotics, the xylitol can cause gas initially, but the body seems to adjust with time and that goes away. What I have found to be helpful is to drink about two ounces of water out of a 500 ml bottle of water, add in my 12 to 15 grams of xylitol and top the bottle off with a sports drink like gatorade. To this mix I also add my borax that keeps my arthritis in remission and then I shake vigorously. I sip this throughout the day to give " a slow release effect" that helps to reduce any potential gas while the body adjusts to the increased prebiotic intake. The sports drink effectively masks the taste of the borax and adds a little flavor without being too sweet tasting. The xylitol seems to bring the flavor of the gatorade back up closer to its original taste, but not quite as sweet.

Art

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Thanks for this info Art. Had not heard of borax before. Previously I have given my hubby a boron supplement which didn't seem to help his arthritis. Just did a quick search on google for borax and it would seem that it's not approved for use internally in Europe. Will have to do some more research but unfortunately that will not be possible for me until next week. Do you have any info on borax which you could share? Thanks.

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Gerry,

I had a very long reply typed out to you about borax/boron and was almost done when I accidentally closed the window and lost it all! I will retype it later and send it as soon as I can.

Art

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Oh isn't that just so very annoying?!

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ABSOLUTELY!!!

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Hi Gerry,

I'll try again! This is a condensed version, but it should give you a very good idea of what borax/boron can do!

I have been taking borax for about a decade and it has kept my moderate to severe arthritis in remission during that time. My arthritis was such that I could no longer go for daily walks as it was just too painful. The arthritis affected my neck, shoulders, arms, elbows, hands& fingers, wrists, upper back, lower back, hips, right knee, ankles and feet. I can now walk as far as I like as often as I like. All joint pain is gone except my left thumb joint where it meets the wrist, but I don't think this is arthritis as I had a severe injury at that area many years ago and I think it is related to that injury. The effect of borax is fairly long lasting as if I stop taking it, it will take three or more weeks for the pain to start coming back, so I never feel bad about missing a dose.

Unfortunately, like many things we take for health, some people are not able to tolerate borax. Borax is a laundry booster typically sold in the laundry isle at most markets here in the US. I take a level 1/4 measuring teaspoon (approximately one gram/ 950 ~ 1,000 mg) of it during each weekday with Saturday and Sunday off to get rid of any excess as borax passes through the system fairly quickly. Borax is mined from the ground in California and Turkey with these two as the main mining areas in the world. It is washed and then boxed for sale as a laundry booster to get your laundry cleaner, whiter and brighter. I first read about it many years ago as an arthritis supplement and there is a ton of information about arthritis and borax/boron on the internet. Borax has a fairly good safety profile at the dosing used for the purpose. Borax is slightly less toxic than table salt at equal dosing. Here are a couple of abstracts on the toxicity of borax. Borax is very inexpensive at about $5 for a box that will last many years at the dose I am taking. As you can see, at this price it is unlikely that there will be an over abundance of studies involving borax and arthritis as there is little potential to make big money off of it, however one supplement company has created a supplement that extracts boron/borax from plants. Where borax costs a few pennies per dose/day this supplement comes in around 92 cents/dose/day. Not a killing by any means at thirty times+ the price per dose, but a much more expensive way to obtain boron/borax than borax itself, but for those who can not get past the idea of taking a laundry booster as a supplement, it may be a viable option. It should also be noted that it would take more than the recommended dose of the plant based product to be equivalent to what I take in borax and that would easily push the per dose price to over a dollar.

Here is what I use:

target.com/p/mule-team-bora...

Here is the plant based product :

amazon.com/Joint-Advanced-R...

Here is a study on the plant based product along side a weaker solution of borax. When you brake down the percentages the patients got a lot more boron from the plant based supplement because the borax supplement had signifcantly less boron per dose, so the plant based version is not only more expensive, it is less effective simply because it takes much more to deliver an equivalent dose of boron! It would have been nice to see how patients not on the biologic would have done with the borax based products by themselves, but it was determined that to use no biologic would have been unethical. In other words, they did not want you to see that borax or the plant based borax may have been as or more effective than the biologic which costs approximately $20,000 per year.

ncbi.nlm.nih.gov/pmc/articl...

Borax is said to be effective against multiple forms of arthritis and anecdotal evidence would tend to confirm this.

Here is some information on the toxicity of borax/boron:

ncbi.nlm.nih.gov/pubmed/100...

ncbi.nlm.nih.gov/pubmed/265...

Borax is 11.3% boron and boron is noted for a similar anti-arthritic effect as borax, but boron supplements are typically only 3 mgs, a dose to low to have the desired effect. I took supplements with low dose boron like 6 mgs and it did nothing for my arthritis. Areas of the world that have high boron soil content, generally have lower rates of arthritis while areas with low boron soil content have higher incidence of arthritis.

Here are some articles and videos on the subject:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

growyouthful.com/remedy/bor...

ncbi.nlm.nih.gov/pubmed/164...

This link takes you to a very enlightening 10 part video series, unfortunately you will have to find them on this page link and then watch them in the correct order.

youtube.com/results?search_...

ncbi.nlm.nih.gov/pubmed/814...

ncbi.nlm.nih.gov/pubmed/150...

journals.sagepub.com/doi/ab...

rexresearch.com/newnham/new...

ncbi.nlm.nih.gov/pubmed/127...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/199...

ncbi.nlm.nih.gov/pubmed/259...

cheflynda.com/2015/03/the-i...

ncbi.nlm.nih.gov/pubmed/211...

health-science-spirit.com/b...

That's it for now, Gerry, let me know if you have any questions!

Art

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Thanks Art, a lot to read. Will only be able to do so next week 😊

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Gerry,

Well I guess you should be glad the first one got erased, it was even longer!

Art

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Art, I'm somewhat surprised that you haven't yet, single-handedly, figured out a cure for PD.

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If only I could, MBA!

Art

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bananas are prebiotic - if you google prebiotic foods you'll find a list :)

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Hi MBA,

I got a gut chart done by the american gut project but basically cant interpret the data usefully to compare with a healthy gut - do you know anyone that can interpret these things? Thanks

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I don't know. I can ask my son, he's a PhD biologists or my wife she's a PhD medical professor. I've never heard of a gut chart. Can you attach it or send it to me in a private message?

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I cant work out how to attach something on this post any thoughts?

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I sent you my email address via private message so you can attach your chart to it.

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