Getting Back To The Gut Of The Matter And... - Cure Parkinson's

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Getting Back To The Gut Of The Matter And Some Real Hope!

chartist profile image
chartist

We have been talking about gut issues in PwP for years now and the conversation gets recycled about once every two months or so. We talk about multiple ways to manipulate the gut microbiome through various methods such a probiotics, prebiotics, synbiotics, Fecal Microbiome Transplant (FMT), assorted herbs and fermented foods and liquids to name some of the ones previously discussed.

In the end it always comes down to cutting through the bad studies and noise to find the good studies and eliminating the maze of articles that seem to be written for the sole purpose of writing, but with zero answers in the end.

In my reading today, I came across something that many of us have anxiously been awaiting for years with a ton of frustration all along the way!!! This seems like a real step forward in this line of research and to me offers real hope and some excellent clues, finally!

This brand new study ( May 13, 2021) gets right back to the gut of the matter, but this time in a very meaningful way and this time I am not going to give any clues about what this study showed in PwP. Yes, if you are interested, you will just have to read it for yourself!!!

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

Art

43 Replies

See also yesterday's thread from Xenos:

healthunlocked.com/cure-par...

chartist profile image
chartist in reply to jeffreyn

jeffreyn,

I missed Xenos' post yesterday which was an article that discussed this. Thank you very much Xenos!!! This is the study that the article was written about. A study I have been waiting for for a long time. These are the first results I have seen for a PwP study using a Fecal Microbiome Transplant or FMT. The results are very impressive and exciting! It is like an injection of renewed hope for PwP around the world! There have been other successful studies utilizing FMT for other health issues such as Crohn's disease, but this is the first PwP study that has reported results that I am aware of.

I think there is at least one other PwP/FMT study that should be near completion soon and hopefully they add further confirmation to these results.

There were gastrointestinal issues involved in the study participants and these have been reported in other FMT studies also. These seem to be expected if you are going to alter the gut bacteria in a very significant way as this means that bacteria are at war for dominance or balance of the microbiota. These declined as the study progressed you can see that 2 participants still had abdominal pain that had reduced and 2 participants had flatulence at follow up. If it was the same 2 participants for each symptom, that would make sense since gas can often times cause abdominal pain. Overall these symptoms seem no worse than what many PwP have experienced at one time or another.

Adverse event During treatment / During follow-up

Fever 0 / 0

Mild Diarrhea 1 (9.1%) / 0

Abdominal pain 3 (27.3%) / 2 (18.2%)

Venting 2 (18.2%) / 1 (9.1%)

Vomiting 0 / 0

Flatulence 5 (45.5%) / 2 (18.2%)

Nausea 3 (27.3%) / 0

Throat irritation 2 (18.2%) / 0

The improvements in motor and non motor symptoms were significant and positive and overall impressive. The elimination of constipation in all participants was also impressive as was the elimination of SIBO in all, which is not normally an easy fix.

Art

Xenos

Interesting, but not revolutionary. Since 2016 FMT trials have been planned and I have been awaiting their results before shelling out about £7000 on treatment. There is a trial due to report in Belgium, there is one under way in France, and one reported in another thread on this forum this week.(oops, it's the same trial) This trial is encouraging but a handful of participants, short duration, open label...

Still, another notch on the bedpost. I'm saving up... 😀

Oh Ricardo, c'mon, I saw that little happy twinkle in your eyes! 😵‍💫

I haven't seen anything else that can get these results in PwP in just 12 weeks or 12 years for that matter! I know, you're calm cool and collected and cautiously optimistic, which is good, but I don't even have PD and I am very excited! Yes, there are shortcomings as you mentioned, but those results seem impressive. I know there is at least one other FMT/PwP study that should be coming out soon. Those results should be helpful in adding a little more confirmation to their results in this study. They only used 40 to 50 ml of the frozen fecal transplant and that is very little. They also know what bacteria they ended up with after 12 weeks which may end up being very useful in creating a similar composition probiotic that could potentially avoid the downside of FMT and the cost which you pointed out.

Giving a little more perspective in terms of cost you can always use the procedure that Marc had as a comparison or even FUS here in the states. Okay, I admit it, I'm excited for the potential this is suggesting for PwP everywhere and it isn't 10 or 20 years away! 😊

Art

OkIt costs £7000 at Taymar. Does it last 6 months? Is that £14000pa cost?

And Taymar are carrying out these procedures on pwp but making no claims for results

Then there's super poo. Would that be even better? Where do you get it?

I'm a fan. But not yet in a hurry

Hoping for more information. But my very first post on this forum said I was looking to this solution and that to a very significant extent I think parkinson's is poo

😀

Ricardo,

I always wondered about the name, now I get it Mr. Poo! 😁😁😁

Art

See the last paragraph of my profile

And this

healthunlocked.com/cure-par...

Yes, Mr. Poo, I see!

Art

The "h" is a deliberate omission 😉

Somic67,

In the study, they selected 11 PwP who also had constipation and they used a fecal transplant(human poop) from healthy humans who did not have PD or constipation and put it into the PwP who had constipation. This procedure is called a Fecal Microbiome Transplant or FMT.

They gave just one transplant at the beginning of the study and then checked the PwP after 4 weeks, 8 weeks and 12 weeks after the transplant. There was significant improvement in the PwP after 8 and 12 weeks!

This is the first human results in PwP of a FMT that I have seen completed, but there is at least one more study that is not complete yet. These current results offer very significant hope for PwP in my opinion and it tends to confirm the idea that PD is very heavily influenced by the condition of the gut microbiome as the patients at the end of 12 weeks had a healthier gut microbiome more in line with what is seen in healthy controls and their motor symptoms and non motor symptoms significantly improved during the 12 week study! These results somewhat mirror what was seen in mouse studies using FMT and offer evidence that FMT has very good potential to improve the PwP condition in a relatively short period of time! Interestingly it also eliminated SIBO in all participants which is no small feat!

This study used 40 to 50 ml of of frozen microbiota or less than 2 ounces in a saline solution to produce these impressive results. I am not aware of anything else that has produced these type of positive results in PwP and the participants were all able to get rid of the dreaded constipation! Given these results, it doesn't sound like this treatment is 10 or 20 years away either! It will be interesting to see if they do follow up on these patients to see if these results are durable.

Art

Somic67 profile image
Somic67 in reply to chartist

thank you Art. Very nice post.

this is great and in line with gut role in the body.it has too be understood if the symptoms improvements for a better meds absorption (and digestion in general), for a placebo effect (if any) or for involuntary life style changes or for health real improvement.

I know more than one source that says that PD is caused by gut dysbiosis causing nutritional deficiency (tirosine, tryptophan, but also SCFA (i.e. butyric, acetic propionic and valerian acids). These nutritional deficiencies are made worst by PD therapy (levodopa compete for absorption in the intestine with other amino acids that consequently lack) and this causes the known side effects in the long term, that (according to this theory) are the symptoms of a strong neuro-transmitters unbalance - i.e. discinesia is not due to lack of dopamine but to lack

An Italian scientist wrote a book (Seeking the One Medicine) were he states "to heal the gut to let it heal yourself" and in addition to diet changes to wean again the digestive system, suggests two basic supplements: alfa-lattoalbumina (source of tryptophan and tirosine) and Sodium Butyrate (plus a pre-biotic like Inulina).

this is a link to a presentation he posted recently (in Italian but English subtitles are good) summarizing important info on the microbiota (he mentions the source study of his affirmations).

youtube.com/watch?v=_8MVQos...

But also, primarily, microbiota depends on (and dictate) the type of food we eat that feeds the microbiota that feed us, and if the bad habits persists then in the long run benefit of the new microbiota will be lost.

This happen (if I remember correctly) in the FMT done against Clostridium Difficile that used to return in 3 to 6 months if the life stile and food was not changed.

if it may interest I hereto attach some links I got recently that brought me here to look for info (you may have already seen some of them)

1. Scientists discover bacteria behind neuro-degenerative diseases

chriswoollamshealthwatch.co...

2. Increasing evidence of links between Parkinson’s and gut bacteria

chriswoollamshealthwatch.co...

3. Studies link microbiome damage to Parkinson’s disease

chriswoollamshealthwatch.co...

4. Oral microbiome can predict Parkinson’s Disease

chriswoollamshealthwatch.co...

5. Butyrate significantly improves your health

chriswoollamshealthwatch.co...

6. Sodium butyrate exerts protective effect against Parkinson's disease in mice via stimulation of glucagon like peptide-1

pubmed.ncbi.nlm.nih.gov/289...

chartist profile image
chartist in reply to Somic67

Somic67,

Thank you for this thought provoking reply! It looks like a different approach to possibly get similar effects. I will have to go through the study links. It will be of interest to see which approach can be utilized by PwP in the most timely manner!

Art

jeeves19 profile image
jeeves19 in reply to chartist

Art. I’ve never suffered from constipation. Never understood this. Any thoughts?

chartist profile image
chartist in reply to jeeves19

jeeves,

The incidence of constipation in PwP is in the 60% to 65% range and is likely due to which gut bacteria are depleted or not depleted as some have reported alleviating their constipation using probiotics. So whichever bacteria is lacking or over produced in the gut that causes constipation, you likely don't have a problem with so things are still moving right along. I think it is probably the same for many PD symptoms as you see different forum members have reported different symptoms from other members.

The FMT study showed elimination of constipation and reduction in motor and non motor symptoms in all of the study participants which adds a little confirmation to the idea of different bacteria issues may cause different symptoms.

The idea of the gut microbiome being a cause for different diseases or having a major impact on them only started to get popular about 10 years ago so this aspect of PD is in its infancy but studies are increasing at a fairly brisk pace in the past 8 years for more and more diseases.

Art

jeeves19 profile image
jeeves19 in reply to chartist

Thanks buddy 😊

rescuema profile image
rescuema in reply to Somic67

"the type of food we eat that feeds the microbiota that feed us, and if the bad habits persists then in the long run benefit of the new microbiota will be lost."

Exactly. One must modify the diet for a lasting change.

Somic67 profile image
Somic67 in reply to chartist

thank you Art. Very nice post.

this is great and in line with gut role in the body.it has too be understood if the symptoms improvements for a better meds absorption (and digestion in general), for a placebo effect (if any) or for involuntary life style changes or for health real improvement.

I know more than one source that says that PD is caused by gut dysbiosis causing nutritional deficiency (tirosine, tryptophan, but also SCFA (i.e. butyric, acetic propionic and valerian acids). These nutritional deficiencies are made worst by PD therapy (levodopa compete for absorption in the intestine with other amino acids that consequently lack) and this causes the known side effects in the long term, that (according to this theory) are the symptoms of a strong neuro-transmitters unbalance - i.e. discinesia is not due to lack of dopamine but to lack

An Italian scientist wrote a book (Seeking the One Medicine) were he states "to heal the gut to let it heal yourself" and in addition to diet changes to wean again the digestive system, suggests two basic supplements: alfa-lattoalbumina (source of tryptophan and tirosine) and Sodium Butyrate (plus a pre-biotic like Inulina).

this is a link to a presentation he posted recently (in Italian but English subtitles are good) summarizing important info on the microbiota (he mentions the source study of his affirmations).

youtube.com/watch?v=_8MVQos...

But also, primarily, microbiota depends on (and dictate) the type of food we eat that feeds the microbiota that feed us, and if the bad habits persists then in the long run benefit of the new microbiota will be lost.

This happen (if I remember correctly) in the FMT done against Clostridium Difficile that used to return in 3 to 6 months if the life stile and food was not changed.

if it may interest I hereto attach some links I got recently that brought me here to look for info (you may have already seen some of them)

1. Scientists discover bacteria behind neuro-degenerative diseases

chriswoollamshealthwatch.co...

2. Increasing evidence of links between Parkinson’s and gut bacteria

chriswoollamshealthwatch.co...

3. Studies link microbiome damage to Parkinson’s disease

chriswoollamshealthwatch.co...

4. Oral microbiome can predict Parkinson’s Disease

chriswoollamshealthwatch.co...

5. Butyrate significantly improves your health

chriswoollamshealthwatch.co...

6. Sodium butyrate exerts protective effect against Parkinson's disease in mice via stimulation of glucagon like peptide-1

pubmed.ncbi.nlm.nih.gov/289...

Despe profile image
Despe in reply to chartist

Art,

And yet, "FMT can be used for the treatment of PD with gastrointestinal symptoms, but its effectiveness and safety requires further evaluation."

Further evaluation! How long does it translates to?

chartist profile image
chartist in reply to Despe

Despe,

I believe there has been at least one death involved in FMT and I do not know the specifics, so clearly researchers are going to want to err on the side of caution. If I remember correctly the donor had something in their microbiota, that was not detected that caused the death, but I am not positive.

We've been discussing ways to manipulate the gut biome for years now, but this seems like a real step forward in the science and as other studies that have been mentioned on this forum reach conclusion, safe application of FMT in PwP will become more apparent and advance the science further.

Since other successful FMT studies and actual usage are paving the way already, that should also help expedite the process as regards moving the science forward in a timely manner. They only used 40 to 50 ml or less than 2 ounces of the transplant material in a saline solution and got these positive effects over the 12 week study period, so the results are rapid.

In this study I think they learned some very important information about gut bacteria as it relates to PwP that may also be useful in developing other methods of obtaining and delivering the appropriate bacteria in effective amounts that may ultimately be a safer approach.

As far as exactly how long this will take to actually be a treatment, that is unknown, but the fact that the participants remained on their PD meds through this trial seems to pose less of a threat to pharmaceutical suppliers of PD meds and that may be beneficial also toward speeding the process.

Cost wise it is not currently cheap, but that is a relative factor when compared to DBS and FUS which cost more, but FMT suggests the potential to do more. As this science advances, the cost seems like it should decline as the methodology is improved and streamlined.

Long term durability in PwP is not yet known, but this was one transplant at the beginning that appears to have continued to improve the disease condition over the 12 week period and we do not know if the improvement will continue to increase with time or if it will last over a greater time period.

Art

A bit like back street abortion and dodgy stem cell clinics this is a mixed bag largely unregulated arena.There has been at least one death but it is possible to pass disease and even genetic problems with bad donor poo

One of the reasons taymount is so expensive is their extensive testing, screening and quarantine of poo samples

Despe profile image
Despe in reply to chartist

Art,

I will cheer when disease modifying medication and/or procedures are on the market and available to PD patients. I will cheer when I see reverse of PD! Until then, we must live with hope. . .

clinicaltrials.gov/ct2/show... called myself Winnie the poo (sic) for a reason. 😂

It says NCT Number Not Found???

Sounds a little twisted, Winnie!

Art

clinicaltrials.gov/ct2/hist... waiting for results. Very frustrating

Wow, 6 years to get to this stage? I think a forum member mentioned a study in Australia or possibly New Zealand that sounded fairly close to results already, But I think they mentioned it a month or two ago?

Art

Despe profile image
Despe in reply to chartist

That's why I feel so irritated, trials are so slowwww!! How many are active right now? Any positive results?? :(

Art, thank you so much for linking to this article! And for vetting it. I would try this treatment in a heartbeat -- if you come across any legit research investigators who are looking for study subjects, please post them!

As always, I feel grateful for your contributions here. Good work! 👍 😍

chartist profile image
chartist in reply to T-Writer

T-Writer,

To be honest, shortly after I wrote the post about Mannitol, 3 years ago, that evolved into a discussion about gut biome manipulation via different methods such as probiotics, prebiotics, synbiotics , fermented foods/drinks and FMT and concluded that FMT would be the fastest and simplest way to find out if microbiota manipulation could have a meaningful impact on PD, I have basically been waiting for one of the studies to release their results. This study released this week is the only one that I have seen for FMT in PD to complete and release their results to the public. A long wait, but the results seem to be worth it.

Winnie did mention a place that may be performing FMT, quietly with no fanfare, but they are not cheap. As far as new studies to try and join, I suspect the release of these results could stimulate interest in more FMT/PD studies which would need to enroll PwPs, but at the moment, I am not aware of any. I think if one of the other FMT/PD studies that have been mentioned on this forum, completes soon, that could spur further interest in the science and promote a larger study that could cover even more ground.

I like that this study showed the basic microbiota breakdown of the participants before FMT, during FMT and after FMT, but it would have been nice to see the breakdown of the donor implant also, to get a better idea of the whole picture of the dynamics involved.

It would also be nice to see if they follow the participants to have an idea of durability of the FMT over time.

Lot's of questions still, but these initial answers in real life PwP are exciting!

Art

As you can see from this link, scientific interest in the gut microbiota has grown at a rapid pace over the past 10 years compared to what looks like very limited interest prior to that :

pubmed.ncbi.nlm.nih.gov/?te...

Despite the arrival of Covid-19, interest seems to continue at an increasing level.

Art

I think whats interesting with FMT is that it can be done fairly safely with trusted healthy relatives/friends as donors for free. Many people are in fact doing this DIY at home (check out you tube). It may not narrow down the actual microbiotica needed specifically for PD, but it would certainly improve gut microbiome diversity which indeed should help with general gut health.

chartist profile image
chartist in reply to saraoutwest

I am and have been a fan of FMT since I wrote the mannitol post three years ago where we discussed it quite a bit. While I would like to see it become more readily available for different diseases, there are definite risks in using transplants that have not been fully studied to the extent that science can in this day and age. The reason for this measure is simple, because a person/donor could be carrying a severe pathogen and not be aware of it and transfer it to the donor recipient! In one of the early transplants, the recipient died from such a pathogen. I can't even begin to imagine how a family donor would feel if they had such a pathogen and the receiving family member had critical complications from it.

Art

chartist profile image
chartist in reply to saraoutwest

saraoutwest,

I found an article that describes what went wrong in the FMT trial where the person died and the reason definitely suggests that do it yourself FMT can be very dangerous. It turns out that the donor had a rare form of E. coli and the recipient had a rare blood disease. The hospital ( Massachusetts General Hospital ) where the trial was performed had begun screening donor samples for rare forms of E. coli, but had not screened FMT capsules that were already made and so 21 other people were also exposed to the same bacteria with one becoming critically ill, but surviving . Here is a link to the article :

statnews.com/2019/10/30/det...

This illustrates the importance of proper donor screening and using a reputable place for FMT and the dangers of not doing so.

Art

chartist profile image
chartist in reply to chartist

This report further shows why not fully inspecting donor fecal transplants is a bad idea :

fda.gov/safety/medical-prod...

It also further illustrates why using other methods than FMT may be a safer approach to improving the the gut microbiota through controlled production of the proper bacteria in the form of very specific controlled manufacture of high dose probiotics incorporating specific bacterial strains or other options such as LED or laser red light therapy as Photobiomodulation or PBM as a way to improve the existing gut microbiota without FMT.

Art

Likewise I am in principle interested in FMT for treating my parkinson's disease. And firmly believe that due to the need to screen donor material only respectable established clinics with proven procedures should be considered. The backstreet DIY approach is likely to be at best ineffective and potentially lethal.Of course, as we are discussing elsewhere there is the intriguing possibility that a substantial beneficial improvement in the microbiome can be achieved inexpensively and non-invasively by photobiomodulation

There is growing information on that led red light therapy. Maybe the easy way is to use the crown and body bag simultaneously.

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

Art

I use the coronet and therapad simultaneously 👍

I knew you were using the crown, but not the pad. Did you start with just the crown and add the mat later or did you start them together? In the FMT study they measured improvement at 4, 8 and 12 weeks, do you see or feel similar in that time line?

Art

I have been a bit erratic. And I have been keeping sue company on a 12 week diet and exercise plan so it's not necessarily a clear picture I started with the coronet twice a day and the pad 3 times a week pulsed nir.

I have been a bit disrupted and stopped using the pad for 3 weeks and often only managed once a day with the coronet

I intend to try to be a bit more disciplined with both increasing the pad usage to daily

Keep us updated, Ricardo!

Art

This fairly new study abstract (March 2021) adds further confirmation to the idea of an altered gut microbiome in PwP. Here is a link to the abstract :

pubmed.ncbi.nlm.nih.gov/332...

Here is a quote from the study :

>>> ' In the PD group, cognitive impairment, low body mass index (BMI), frailty, constipation, and low physical activity were associated with fecal metabolome compositional differences. Notably, low SCFAs in PD were significantly associated with poorer cognition and low BMI. Lower butyrate levels correlated with worse postural instability-gait disorder scores. ' <<<

Since the study pointed out the utility of Short Chain Fatty Acids (SCFAs) and Butyrate in particular, I thought it is a good time to reiterate that Mannitol can increase butyrate production if there are enough butyrate producing bacteria left in the PD gut.

Art

Parkinson's is just one indignity piled on top of another. Every manner of embarrassing infliction from your tongue darting in and out of your mouth to urinary problems.

Now you tell me that the treatment is to take some one else's excrement and shove it up inside my body. Just shoot me now.

Jim,

I'm not telling you that, I am telling you what the science is showing through studies over the past 10 years and even more so in the past 5 years and even more so over the past 3 years. It is well known that the gut bacteria in PwP is in a state of dysbiosis and healthy people without PD have a healthier gut bacteria balance with more health promoting bacteria and less pathogenic bacteria. Using excrement, as you put it, is just the fastest and most efficient way to shift the gut bacteria back to a healthier state as seen in healthy people. It is not the only way, but the other ways have not shown to be as effective or as fast.

This whole concept is still in its infancy and eventually science should be able to use the right bacteria in the right proportions in place of someone else's feces to achieve this and they will probably be able to use capsules with this bacteria in it, similarly to taking probiotics, but more like probiotics on steroids. Unfortunately that aspect of the science is years down the road and I view PD as a disease where time is of the essence.

Jim, I'm not trying to offend you or anyone else with this whole line of thinking, I'm just trying to show what the studies show and based on the results of that very recent FMT study, FMT probably has the potential to do more for PwP than anything else currently or soon to be available for PD and a multitude of other diseases! It is already being used in several diseases.

In the end it all comes down to personal choice and nobody is making anybody do this or anything else. I'm not telling anyone to do this, but I am not ignoring this either. I wrote about this 3 years ago on this forum and I said at the time that FMT is likely to be the quickest and most effective way with current science to test the whole idea of whether shifting the gut bacteria in PwP away from bad bacteria toward health promoting bacteria would be helpful and this recent study added a lot of confirmation to that idea with the positive results they got in PwP in just 12 weeks.

Let's be honest, the gold standard treatment for PwP is 50 years old and everyone can clearly see where that ends up. Scientist now have the proof they needed and had already seen in animal studies, to move forward with manipulation studies of the gut microbiome to take this to the next level and hopefully a new and more effective gold standard treatment of simply shifting the gut biome to a healthier state.

For now that leaves FMT as the closest thing to that future gold standard and even FMT is not likely to be readily available for a few years for PwP.

Art

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