Fecal Microbiota Transplantation (FMT), Is It A Nearer Term Future Treatment For People Living With Parkinson's Disease?

[chartist]

Fecal Microbiota Transplantation (FMT) is a "relatively new" treatment that is already being used effectively for specific health issues such as IBS, Crohn's Disease, Clostridium Difficile, Ulcerative Colitis, Obesity and Autism. It is also currently in testing for other health issues including Parkinson's Disease (PD) with at least two trials already completed.

FMT is the process of taking the stool from a healthy donor and transplanting it into a patient with a perturbed gut microbiota for the purpose of trying to shift the gut microbiota away from an over abundance of pathogenic bacteria toward a healthier balance with more health promoting bacteria.

You may be wondering how changing the gut microbiota can help a disease like PD where most of the problems seem to originate in the brain? Previous use of FMT has shown that changing the gut microbiota to a healthier balance of bacteria can have positive health effects in other areas of the body including the brain.

In a study completed last year(2020), they used two methods of delivering the stool transplant into the PwP which included nasointestinal transplant and transplant via colonoscopy. Of these two methods, transplant via the colon was shown to be superior to the nasointestinal delivery. This preliminary study showed that FMT in PwP could improve both motor and non motor symptoms! The colonic group showed significant improvement in symptoms that lasted a minimum of 4 months to over 24 months in two patients while the nasointestinal group saw little benefit and what benefit that was seen, was short lived. As the research into this area advances, it seems likely that scientists will be able to synthesize the correct amount and type of bacteria that these FMTs deliver and this should eliminate the whole process of having to find acceptable donors, thus greatly simplifying and expediting the entire process.

In this first study they used multiple testing systems for PD to give a better and broader idea of how the patients symptoms improved significantly. These testing methods included PSQI, HAMD, HAMA, PDQ-39, NMSQ and UPDRS-III which are testing systems to measure both motor and non motor symptoms, and all of these testing systems significantly declined after FMT. In these tests, lower scores represent less symptoms while higher scores represent increased symptoms. UPDRS-lll is the "motor examination" aspect of the UPDRS testing system and asks 14 questions of which the patient is supposed to give a numbered answer of 0-4 with an answer of zero meaning that that symptom does not apply to the patient and an answer of 4 being the worst. Once all 14 questions have been answered, the numbered answers are totaled and that total is your score for the UPDRS-lll motor exam.

Adverse events (AEs) were mild and self limiting and included flatulence, diarrhea and abdominal pain. Part of the reason for using multiple testing systems is to try to improve scoring accuracy and possibly reduce the subjectivity inherent in some of these testing systems. Here is a link to the full study :

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

Here is a chart that shows how the test scores looked before FMT and then 3 months after FMT and it should be noted that the 5 participants that were treated with FMT via the nasointestinal route all faired poorly compared to the 10 who received FMT via the colonic route so this 3 month score would likely look even better had all participants been given colonic FMT.

Items (n = 12) Baseline/ 3 mo/ Change from Baseline/ p-value

-------------------------------------------------------------------------------------------------------

PSQI 12.41 +/- 3.84 /8.16 +/-3.01 /4.25+/- 3.27 .001

HAMD 22.41 +/- 7.11 10.08 +/- 4.62 12.33 +/- 6.42 <.001

HAMA 21.08 +/- 8.96 9.58 +/-6.77 11.50 +/- 7.29 <.001

PDQ-39 52.16 +/- 18.37 25.91+/- 13.48 26.25 +/- 17.10 <.001

NMSQ 15.16 +/- 3.12 9.83 +/- 3.99 5.33 +/- 3.28 <.001

UPDRS lll 41.75 +/- 14.66 24.00 +/- 7.76 17.75 +/- 11.29 <.001

As you can see, the 3 month scores compared to the baseline scores, were significantly reduced. For an example that many of you may be familiar with, look at the UPDRS lll score at baseline (41.75) compared to the UPDRS lll at 3 months (24), this is a significant reduction of 17.75 points in 3 months or approximately a 40% reduction in the test score, which translated to both improved motor and non-motor function.

In this next study, done this year (2021), they tested 11 patients with PD and assigned them to a single FMT procedure at the beginning of the study and tested them at 6 weeks and 12 weeks using multiple tests used for PD testing to determine changes in motor and non-motor symptoms. These tests included Hoehn-Yahr (H-Y) grade, Unified Parkinson's Disease Rating Scale (UPDRS ll) score, and the Non-Motion Symptom Questionnaire (NMSS) were used to assess improvements in motor and non-motor symptoms. PAC-QOL score and Wexner constipation score were used to assess the patient's constipation symptoms. All patients were tested by the small intestine breath hydrogen test, performed before and after FMT.

This study showed how the patients improved, as did their gut microbiota and test scores, over the 12 week testing period. This study also shows how the gut microbiota evolved over that 12 week testing period, which I found interesting and useful information because it showed just how potent FMT is because the participants were given one transplant that contained less than 2 ounces of stool in a warm saline solution at the beginning of the study period and that small quantity was able to effect positive gut microbiota changes in the participants over the entire 12 week period of the test. Here is a graph that shows how the test scores changed for the participants from before FMT to 6 weeks after and until 12 weeks after FMT.

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

In this study, instead of testing UPDRS lll, they tested UPDRS ll which measures the patients ability to do daily activities and involves 13 questions that you rate 0 - 4, total up all of the answer scores and this gives your UPDRS ll score. Here is a graph of the testing results of the study. From this graph, the significant test score improvements are clear.

Outcome measures in the participants

Before FMT / At6 weeks / At 12 weeks After FMT / p-value

BMI (mm/kg2)22.01 ± 1.73/23.52 ± 1.6524.65 ± 1.09

H-Y Grade**2.27 ± 0.751.45 ± 0.821.09 ± 0.830.0023

UPDRSII Score**(11.36 ± 4.70) (6.18 ± 3.60) (4.90 ± 3.33) .0036

NMSS**22.36 ± 7.0512.55 ± 5.5410.36 ± 4.540.003

PAC-QOL score**102.55 ± 5.0551.27 ± 6.7143.45 ± 5.34< 0.0001

Wexner constipation score*11.63 ± 3.228.16 ± 2.626.22 ± 1.030.0231

HCY (μmol/L)**15.85 ± 2.8912.74 ± 2.0511.22 ± 1.850.002

Alb (g/L)38.49 ± 3.9240.38 ± 4.3541.62 ± 4.26

UA (μmol/L)306.13 ± 75.94282.09 ± 65.31274.91 ± 55.73

OCTT (min)**150.91 ± 12.21NA105.45 ± 20.18< 0.0001

From this chart you can see that the UPDRS ll scoring was 11.36 + or - 4.7 prior to FMT and then at 6 weeks after FMT it was 6.18 + or -3.6 followed by 4.9 + or - 3.33 at 12 weeks. This is a significant reduction in this test score of ability to do daily activities of greater than 50%. On the other tests (PAC-QOL, NMSS, H-Y Grade) that are supposed to determine improvements or deficits in ability to do daily activities, over the 12 week period they also showed at least a 50% improvement in test scoring which results in significant improvement to do daily activities.

It is worth mentioning that all of the patients enrolled in this small study also were constipated and had Small intestinal Bacterial Overgrowth or SIBO and both of these conditions improved very significantly over the study period.

Although these two studies are small, they tend to show the significance of improving the gut microbiota bacterial content and this in turn results in significant improvement of motor and non-motor symptoms as well as SIBO, which is thought to be active in 25% to 50% of PwP, depending on the study that you reference, and the very significant reduction in constipation which is a factor in many PwP. FMT is not currently approved for PD and that may not happen for another 3 years or so, but these positive study results may help push the process along expeditiously. The fact that FMT is already in use for 6 other health issues in humans should also help push FMT along for PD and other diseases where a perturbed gut microbiota is known to be very common.

I am not aware of other adjunctive treatments that can do what FMT can in terms of reducing these test results to this extent and the consequent symptom improvements associated with those reductions and this is not talking about something that is 10 or 20 years down the road. In some areas of the world, you may even be able to get FMT done sooner.

For anyone interested in looking at or self testing the UPDRS testing, here is an online link where you can see or answer the questions to any section or all sections for free :

neurotoolkit.com/updrs/

Ideally it would be best to do these questionnaires with your neurologist or MDS if they are willing.

Here is what an early report of FMT looked like in a 71 year old PwP in 2019 :

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

This case report illustrates how quickly the science of FMT is evolving when compared to the 2020 and 2021 studies above.

I will update this post if any new data comes available that seems relevant.

Art

[jimcaster]

Until now, I never intended this literally, but I would literally eat sh#t if it resulted in a cure. I'm sure we all would... Obviously, I know there are more palatable delivery systems. Thanks for keeping track of FMT for us, Art. Any and every encouraging study is welcome regardless of the details!

[Godiv in reply to jimcaster]

That is too funny and so true.

[chartist in reply to jimcaster]

Jim,

The reason why I have been so interested in FMT since I wrote that mannitol post 3 years ago discussing it, is because it seems like an adjunctive treatment that can potentially give the most effective results in the shortest time and is now shown to be relatively safe with proper sample testing. PBM looks good also, but clearly is not as fast or as effective. FMT is already available for 6 other health conditions, suggesting that a lot of the work is done for making it a nearer term possibility for PwP. A 50% or better reduction on those test scores is impressive by any standard and I am not aware of any other adjunctive treatment that can do that!

Nothing pretty about it to be sure, but when you consider all of the other health benefits it is likely to impart on recipients, it just seems like a good thing. The analogy that seems fitting to me is that it is like adding the right "fertilizer" to a crop and can make the difference between a crop that thrives or one that languishes!

Art

[rescuema in reply to jimcaster]

A while back I watched a documentary about fecal transplant pills but I forgot the name. Seeing your comment, I had to go find it because you're not far off. The woman's response after one treatment of swallowing 30 poop pills - "It's glorious."

Watch "What's Living in You"

pbs.org/wgbh/nova/video/nov...

[MBAnderson in reply to rescuema]

rescuema. You ought to consider making a new thread featuring this video, it's so good.

[rescuema in reply to MBAnderson]

I'll leave the poo-related subjects up to Art or you're welcome to post it if you'd like. 😉

[MBAnderson in reply to rescuema]

I'm close to being sold on it.

[rescuema in reply to MBAnderson]

OK, I'll post it since many people probably missed out on it. It should inspire interesting debates. 😆

[Bolt_Upright in reply to jimcaster]

If I could get my hands on some good poop pills I would be throwing them down my throat like M&Ms every day for a year!

[chartist in reply to Bolt_Upright]

Okay, but please don't chew!

Art

[parkie13 in reply to chartist]

Ha ha

[Resano in reply to chartist]

Why not smoke them as they do it with donkey dung ? youtube.com/watch?v=wmwwtle...(Not working as expected?)

[Resano in reply to chartist]

You can also gulp the poop pill dowwn with a glass of pee (Neuro-Ayurveda medicine): “Migraine, Alzheimer, Depression, tension, anxiety, insomnia and other Psychological and Neurological Problems are treatable by Jain's Cow Urine Therapy. Swaarnim Naturscience Limited researches on the therapeutic effects of cow urine and our team has come out with effective products and cow urine therapies which help fight many psychological and neurological disorders.”

cowurine.com/treatment-for-...

[Astra7 in reply to jimcaster]

I was thinking exactly the same thing!

[MBAnderson in reply to Astra7]

Nor should they be taken sublingual.

[Astra7 in reply to MBAnderson]

Now the poor sense of smell becomes a positive!!

[MBAnderson in reply to Astra7]

ha

[Erniediaz1018 in reply to jimcaster]

🤣🤣

[Godiv]

It was kind of interesting I was looking it up myself and there are apparently banks so to speak where you can purchase it or be paid to donate. As gross as it all is it makes sense.

[chartist in reply to Godiv]

Hopefully this means everyone will be laughing all the way home from the "bank"!

Art

[Godiv in reply to chartist]

Ha!!!!!😂

[MBAnderson]

Art, This is really interesting.

1) Are you saying FMT is already FDA approved for "... that is already being used effectively for specific health issues such as IBS, Crohn's Disease, Clostridium Difficile, Ulcerative Colitis, Obesity and Autism.'

2) OK, now I see -- the last figure is the p value?

Before FMT a6 weeks After FMT12 weeks After FMT p-value

BMI (mm/kg2)22.01 ± 1.73 23.52 ± 1.65 24.65 ± 1.09

H-Y Grade**2.27 ± 0.75 1.45 ± 0.82 1.09 ± 0.83 0.0023

UPDRSII Score**11.36 ± 4.76. 18 ± 3.64. 90 ± 3.33 0.0036

NMSS**22.36 ± 7.05 12.55 ± 5.54 10.36 ± 4.54 0.003

PAC-QOL score**102.55 ± 5.05 51.27 ± 6.7 143.45 ± 5.34 < 0.0001

Wexner constipation score*11.63 ± 3.2 28.16 ± 2.6 26.22 ± 1.03 0.0231

HCY (μmol/L)**15.85 ± 2.89 12.74 ± 2.05 11.22 ± 1.85 0.002

Alb (g/L)38.49 ± 3.9 2 40.38 ± 4.35 41.62 ± 4.26

UA (μmol/L)306.13 ± 75.94 282.09 ± 65.31 274.91 ± 55.73

OCTT (min)**150.91 ± 12.21 NA105.45 ± 20.18 < 0.0001

[chartist in reply to MBAnderson]

The p value is given in the first study which is the chart I was not able to copy and paste into the post. The p-value in the second study is there in what you printed, but not every line has a p-value. Sorry, the forum formatting closes all spaces so none of the numbers stay in the correct column.

Yes, that was based on this :

designershitdocumentary.com...

Winnie The Poo mentioned to me that he is aware of one or two places in another country that might do this now, but they are expensive due to the fact that they do extensive screening of their transplants.

Art

[chartist in reply to MBAnderson]

Okay Marc, I added in the missing data for first study, but it is much easier to just go to the study as the forum formatting does not allow me to keep columns in order and consequently nothing lines up and makes it tougher to follow the numbers and values.

Art

[Hikoi]

Around 2011 this was discussed often on HU. It is a well known and effective treatment for clostridiodies difficile. What I have discovered: There are faecal(stool) banks in a number of European countries now including Poland and UK. In 2012, a team of researchers from the Massachusetts Institute of Technology founded OpenBiome, the first public stool bank in the United States. I dont know how they have faired with covid. There was some concern it could spread Covid19.. In May 1988, Australian professor Thomas Borody treated the first ulcerative colitis patient using FMT, which led to longstanding symptom resolution. Following on from that, Justin D. Bennet published the first case report documenting reversal of Bennet's own colitis using FMTThere are now evidence-based consensus guidelines for the optimal administration of FMT. These documents outline the FMT procedure, including preparation of material, donor selection and screening, and FMT administration. It may be that not just one but a number of treatments is required for PD. I never saw any mention of it being used in autism.

And a bit of light relief -

On season 23 of the show South Park, episode 8 titled “Turd Burglars” discusses the idea of Faecal Transplant

[chartist in reply to Hikoi]

The sad part is that it is taking this long to start implementing it for only a handful of diseases or health conditions, but what about all of the other diseases with dysbiosis where it could be of great utility such as PD or psoriasis? I get that it is not a huge moneymaker and will likely take some business away from the pharmaceutical industry, but isn't it about time that the patient comes before business interests?

Art

[Hikoi in reply to chartist]

Art,I dont make that conclusion, i dont have enough information to claim anything. I do agree that the patient should come before business interests but not likely as that would shake the foundations of societies based on competition.

[LauraYu]

I do believe gut bacteria affects brain functions. I did have experience of taking certain probiotics in the past, and the next couple of days both my motor functions and my mood improved significantly. However the improvement was short lived, it only lasted for about 3-4 days even I kept taking the probiotics. I had also done a candida cleanse, one day I got up in the morning and I was symptom free. I cried! The benefits lasted for less than 2 weeks and the symptoms returned. If this therapy is proved to be reliable, I am willing to try. Thanks for sharing! Laura

[chartist in reply to LauraYu]

Hi Laura,

What I have found about probiotics is that they are generally underpowered to achieve the best effect. People also report temporary benefit from certain antibiotics which likely kill off enough of the pathogenic bacteria to temporarily offer a better gut microbiome balance.

To me it is impressive how fast and effectively FMT can work.

In the first study I linked to, the benefit lasted from 4 months to over 24 months which varied from patient to patient.

Art

[LauraYu in reply to chartist]

Hi Art, this is definitely an exciting news and big advancement of the gut- brain theory. Yes, the probiotics are not only underpowered, it also mix some regular bacteria that Parkinson’s may not need. Parkinson’s need customized probiotics. I guess they still face the challenge, why do Parkinson’s symptoms return a length of time after FMT. If the patient’ s gut bacteria has been completely reset at once, why it didn’t stay that way. For me, even if it only brings temporary relief, say a year or two, I would still be willing to do it 😇this procedure isn’t invasive, and I can’t see how it can bring some permanent damage. Hopefully this is the light of the tunnel 🙏🙏🙏

[chartist in reply to LauraYu]

So much more is known about the gut microbiome than just 10 years ago, but there is still so much that is not yet understood. When it comes to probiotics, bacterial diversity is so limited and specialized and often times I feel that the "specialization of the bacteria" is merely code for "more expensive".

As far as why the symptoms return in some patients, it probably comes down to proper diet as rescuema has mentioned previously. If you feed the pathogenic bacteria the foods that they thrive on and don't feed the healthful bacteria what they need to thrive on such as high fiber, then the the gut dysbiosis is likely to return. A healthy gut balance takes work, it doesn't seem to just happen without some effort. In the 2020 study, 2 participants remained improved for at least 24 months/two years.

Another consideration is if the damage to the mucosal lining is severe and leaky gut may be causing more inflammation as gut content leaks to areas where it is neither needed or wanted. If repair does not happen in a timely manner perhaps the FMT effects only last for a shorter period.

It is basically known about which bacteria are lacking and which bacteria are over abundant in PwP and the 2021 FMT study results tend to highlight this aspect of PD. This is why I said that eventually scientists should be able to create a type of super probiotic that should be able to replicate the results of FMT, but avoid the time consuming process of donor and transplant screening, thus making the process relatively inexpensive. Keep in mind that in the 2021 study, they only delivered less than 2 ounces of stool transplant once at the beginning of the study period which showed steady improvement over the 12 week study period. Follow up review of those participants would be very interesting!

Art

rescuema

[LauraYu in reply to chartist]

Yes, interesting and encouraging! Even a person’s eating habits don’t change, and the procedure has to be repeated periodically or take some ongoing Parkinson’s probiotics , etc. It all seems doable and sounds promising. Thank you Art for bringing the good news, it lightens up my day!

[chartist in reply to LauraYu]

Another point about FMT is that the knowledge base suggests that it is a safe procedure with proper donor and transplant screening compared to some other treatments for PwP. It is also worth noting that , as Hikoi mentioned in a reply above, this was discussed on the forum in 2011, so it took from well before that just to get to this stage where it is actually being tested in PwP successfully. On the plus side, actual testing in humans with significant positive results and the fact that it is already used to treat 6 other health issues is a huge advance and should further increase interest in FMT.

My opinion is that if MJFF wants to allocate funding for something that can actually make a real improvement in quality of life for PwP, now is the time for them to step up to the plate and show their mettle or remain relegated to the other one disease groups who's sole purpose remains self preservation!!!

Art

Hikoi

[LauraYu in reply to chartist]

Agree! It’s an existing procedure used to treat other medical conditions, they simply use it to treat Parkinson’s, and thus far two clinical trials have been completed already and have yielded positive results. If it works, it should get FDA approved fairly quick. I really hope they take actions to save us , the suffering Parkinson’s.

[Hidden in reply to chartist]

Yes! Exactly! I have said similar before and was pounced upon. What was started altruistically is now big business and to not recognize this is just naive.

[laglag in reply to chartist]

Do you know what the perfect Parkinson's diet would consist of?

[chartist in reply to laglag]

I do not, as that has not yet been my focus, but higher fiber content is going to play a large part of a good PD diet as the fiber results in increased production of Short Chain Fatty Acids (SFCA) as these produce the predominant SCFAs, acetate, propionate and butyrate. Of the three, butyrate has been studied extensively and is beneficial because it has antiinflammatory activities in the gut which can have system wide positive effects. The one who may have a better answer on this topic for you, is rescuema.

The studies on butyrate suggest that butyrate degrades Asyn, can repair the gut mucosal barrier helping to reduce leaky gut/gut permeability which should have an antiinflammatory outcome, acts as a Hystone Deacetylase inhibitor (HDACi) which will have neuro protective activities, can increase antiinflammatory Regulatory T Cells (Tregs) which PwP have reduced numbers of and butyrate enhances BDNF expression which is important for PwP who are known to de deficient. Butyrate also offers protective effects for dopaminergic cells against Asyn. In a newer mouse study butyrate inhibited neuroinflammation and alleviated neurological damage from PD.

Propionate may have benefit also as this mouse study showed that propionate improved motor function. Of these three SCFAs, propionate is the most decreased of the three in PwP.

I think this is a contributing factor as to why butyrate supplementation alone is not enough. It may take the increase of all 3 dominant SCFAs in order to get maximal effect in PwP as SCFAs are reduced in the gut of PwP.

Art

@rescuema

[rescuema in reply to chartist]

Sprouted organic grains are your best bet for butyrate/SCFAs and feeding the friendly gut bacteria. Organic basmati brown rice, sorghum, barley, beans, etc. Soaking and sprouting remove phytic acid and other anti-nutrients while drastically increasing the fiber (especially when sprouted for longer) and nutrient content. Combining this with broccoli sprouts for sulforaphane will also help weed out the gut pathogens, and you must avoid sugar and refined carbs to continue to choke out the ratio of the bad strains. Snack (not too much) on low-sugar fruits such as granny smith and berries for phytonutrients when craving sweets. healthunlocked.com/cure-par...

Check out the below video around 33:22 mark (the photo below). A big surprise finding through Dr. Mischeley's data was that grains are associated with slower PD progression and better outcomes over time.

youtube.com/watch?v=dbOWo2w...(Not working as expected?)

Also, see the below video posted just a few days ago discussing the similar findings on whole ancient grains (brown rice + barley, kamut, farro, etc) and aiming for high bacterial richness/diversity through a broad range of substrates, except I believe you can improve that further exponentially by sprouting.

youtube.com/watch?v=sQf9eYd...(Not working as expected?)

2021 PD foods data

[laglag in reply to rescuema]

Thanks for all the information!

[Rebtar in reply to rescuema]

I have an appointment with Laurie once or twice a year and I know about her diet suggestions. My problem is that any significant amount of carbs, including complex carbs, spikes my blood glucose (quinoa, steel cut oats, sweet potatoes are three I've measured blood glucose for lately). I have not tried farro, buckwheat, sorghum or barley which Laurie also suggested.

I've been eating low carb for several years now, perhaps that's the reason? If I reintroduce these "good grains", would my body learn to respond with less of a glucose spike?

[rescuema in reply to Rebtar]

Yes, just take it slowly and start with a small portion and gradually increase the very fibrous sprouted (less carb) grains and beans. It's common to experience a glucose spike after being on a carb restrictive diet for a while. You should also incorporate exercise to burn off excess glucose.

[Hidden in reply to rescuema]

Rescuema, Should I not be taking mannitol? I'm so confused.

[rescuema in reply to Hidden]

cc, you could try taking about 1 tsp of mannitol a day, except monitor carefully how your body reacts. My FitBit trend showed me that it was affecting me negatively when I went up slightly in dosage and I had to address my potassium and electrolytes loss, but you can also counter that proactively by incorporating Morton Lite Salt or other K supplement + electrolytes. You can also opt to try xylitol as prebiotics instead - see below.

microbiomejournal.biomedcen...

[Resano in reply to rescuema]

Rescuema, Neuroeconomist Angela Stanton deters us from supplementing Potassium, including via Morton Lite salts. What's your take ?

hormonesmatter.com/should-y...

[rescuema in reply to Resano]

I read that article a while back but I disagree with her completely on her statement that potassium "should never be supplemented." Her line of logic is extreme and flawed and even her initial QA correspondence with the cardiac Dr answered "[Potassium] supplements can be potentially harmful in the setting of impaired elimination (renal failure, acidosis) but within reasonable dosing they should not be."

If you're a diabetic with renal issues, you should obviously be extra careful of any supplementation and already know what to avoid. Most healthy people without substance/activity affecting homeostatic balance will not need to supplement potassium. However, those with shifted balance through the use of diuretics such as mannitol, HD B1, keto or low-carb diet (wastes K and Na), gut dysbiosis, high cortisol/stress (adrenals waste K), and most elders' lack of stomach acid (hinders K absorption from food, K helps the acidity), will certainly benefit from careful K supplementation that'll help provide a kick start. No one should be foolish enough to supplement K for the entire RDA up to 4700mg (should come from food, ideally veg. trivia: 1 banana equates to only around 400mg K that you may not absorb) and only try 3-5 doses of the restricted 99mg K spaced out dosing (as labeled) should be attempted to see how the body responds. Most people without renal issues will not be harmed by careful K dosing. Potassium deficieny is one of the hardest to detect because near 98% of K is intracellular and the typical blood test will not reveal the subclinical deficiency affecting the potassium sodium pump for electrochemical gradient unless it is already extreme.

healthline.com/nutrition/po...

[Resano in reply to rescuema]

Thanks a lot for this useful thorough response.

[Hidden in reply to rescuema]

I just ordered K and a potassium powder you recommended on a different thread. Because I am doing all the things you listed that deplete it; low carb, mannitol, HD B1, I have likely been very lacking.

May I ask what doses of K and the potassium powder I should take?

Your help is so valuable to me.

I feel much less like I’m lost at sea because of you.

I put the iodine drops in my coffee daily and am still on the TUDCA amongst other things.

[rescuema in reply to Hidden]

cc, since you've been on keto, you should already know that your potassium and sodium intake needs should be higher than normal. If you have not been increasing your electrolytes, then you're most likely deficient indeed, especially when combined with the supplements and exercises that increase the demands. Again dosing K is dependent on your diet, but for people who're on Keto or LCHF diet, supplementing K along with extra sodium becomes inevitable because your kidneys will waste them with low insulin. People require up to 4700mg of K a day, and most of that must come from the diet because if you try to supplement that much you'll absolutely end up with hyperkalemia and end up at ER. As I've suggested on another thread already, start slow with perhaps 99mg pills 3 times a day in divided dosage, and you can certainly move that up slowly as you feel fine. Not that I'm recommending this keto (definitely not for others on normal diets) electrolyte product, but for example, look up the supplement fact (1000mg of K citrate) and read up on the over 8K reviews, both the positives and negatives to note what to expect, and do the same with other Keto electrolyte products out there with many ratings. Supplementing K does require careful due diligence.

amazon.com/product-reviews/...

amazon.com/s?k=keto+electro...

[MBAnderson in reply to rescuema]

rescuema, The Dr. Mischley video is one of the best ever. Thanks for posting it. Towards the end, she says 9% of PwP reverse their symptoms.

[rescuema in reply to MBAnderson]

👍 and everyone should strive for it even if out of sheer force of will.

[Hidden in reply to rescuema]

I look forward to listening to the above video today. I wonder what serving size of grains is needed to reap the benefits and at what point there is diminishing returns? Of course which grains and whether or not they are sprouted matters.

But generally speaking would a 1/4 cup or 1/2 cup be enough to positively effect the gut biome without spiking glucose?

[rescuema in reply to Hidden]

cc, start slow especially given that you've been on a keto or low carb diet for a while. Start with a smaller sensible portion (1/4 cup as you've done in the past) and monitor your postprandial glucose readings for guidance since it'll vary per individual. After a while with consistent ingestion, your beneficial gut microbiome will grow in ratio and start contributing towards keeping the glucose stable, and before you realize you'll be able to enjoy even to around a cup if you desire without a problem. The toughest time I had with glucose control was while I was trying hard to strictly limit carb intake, but now I have no problem whatsoever even through occasional cheating. In your case, yes, try up to 1/2 cup portion for a while, and sprouting will simply maximize the benefit and reduce antinutrients.

[Hidden in reply to rescuema]

Thank you Rescuema! You empower me!

[Hidden in reply to chartist]

Art, To quote you, “it’s basically known which bacteria are lacking and which are over abundant in PWP.” Where can I learn the specifics? I harp on about sugar to no avail but it’s because when I cut processed sugar and high sugar fruits from my diet, my health felt so much better I want to proclaim it from roof tops. I believe it really changed my gut biome.

[chartist in reply to Hidden]

ccl,

Well that's because by cutting sugar, you are essentially starving the pathogenic bacteria that feed on it. This allows the health promoting bacteria to do a little better as the gut biome shifts away from pathogenic bacteria.

Here is a start for the bacterial balance that is known in PD.

nature.com/articles/s41531-...

Art

[Bolt_Upright in reply to LauraYu]

To me it does not make sense that the FMT treatment itself would not go on for at least 12 months. I'd go with 24 months.

And hand in hand with FMT should be a diet that either matches the donor or my favorite, the Specific Carbohydrate Diet, which on it's own has shown the ability to normalize a microbiome:

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

[Bolt_Upright in reply to Bolt_Upright]

The Specific Carbohydrate Diet and Diet Modification as Induction Therapy for Pediatric Crohn’s Disease: A Randomized Diet Controlled Trial

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

[Hidden in reply to chartist]

Art, Recently I have heard that fasting can dramatically alter the gut biome too. Even just a 20 hour fast supposedly has a good effect on the biome. We may want to explore fasting as a means of shifting our biomes. One of my children has psoriasis. Since decreasing gluten and lactose and casein it is almost gone.

[chartist in reply to Hidden]

ccl,

That is correct. Fasting also increases SCFAs and I wrote about that as one of the methods to stimulate the repetitive pro-health cycle. I've done intermittent fasting before to good effect and may still do it as part of my current regimen.

Art

[Hidden in reply to LauraYu]

Have you tried fasting? Supposedly, the bad gut bugs die off when fasting. Why this supposedly doesn’t kill off the good bugs too, I don’t know. But I’ve heard it from a few sources whilst endeavoring to learn about my gut biome.

[LauraYu in reply to Hidden]

No, I have not tried fasting yet. With PD, I lost weight, I am scared of fasting lol. I did go through candida cleanse though, and it immediately improved my PD symptoms, but the process is hard to handle, so the benefits didn’t last long

[Hidden in reply to LauraYu]

Would you mind please sharing what your effective candida cleanse consisted of? Since your comment I have read about it online. There are different variations some of which sound like the diet I’m on daily.

I typically fast 20 hours a day now.

To keep weight on, macadamia nuts, pecans and pistachios all sure help and they are low in omega 6.

[LauraYu in reply to Hidden]

I first learned the word “ candida overgrow” was from a case report on Road To Parkinson’s Recovery ( name may not be exact). A lady, her husband and ex- husband all being diagnosed as PD. It turns out that she had candida overgrow. Once the overgrow has been controlled, her PD symptoms are much improved, similar improvements also happened to her husband and the ex. If you google neurological symptoms of candida, you will see unsteady balance, muscle stiffness, tremor, muscle tension, anxiety, brain fog……….. very much resembles that of PD. For women, repetitive UTI is typical, which was my case.

I did two steps to manage candida . I first did one time upfront candida cleanse, by ordering a 14 day cleanse kit from Amazon. During the 14 days, other than taking the candida cleanse liquid, I had to follow very strict diet. Absolutely no carbs and sugar, only eating chicken breast meat and green vegetables. You basically want to starve candida. It was really tough, with the candida die- off symptoms, I almost couldn’t move, I thought I was going to die 😂However around 13th day of the cleanse, one morning when I wake up, I suddenly feel normal again, completely normal. I stand with my legs straight, no weakness and no balance issue, my arms are free, and my hands are flexible, also no neck tension and arm swing recovered. The whole day I didn’t take Sinemet because I don’t need it. Walking my dog without taking my med, I thought I was recovered……….. The good time lasted for about 4-5 days, and I didn’t take Sinemet, then the PD came back. Not sure if that’s because of the sudden stop of Sinemet, or the benefits of the cleanse was fading as I started to eat some bread/ rice again. The only benefit that lasted for about 2 years was no neck/ shoulder tension and the arm swing. I had a dental surgery and after that, I my PD was deteriorating, balance, couldn’t get up from a chair, couldn’t make turns during sleep……….

The second step is more a long term maintenance, took probiotics right after the cleanse, staying on low carb and low sugar diet. I have to admit that I didn’t do good job for the diet part, as I cheated often 😂

The candida issue is a mystery for me. Even a month ago, my UTI came back so I took fluconazole, my PD symptoms improved again………. I really don’t have the gut to go through the same cleanse again, I will just let it be. However this experience made me deeply believe that the solution of PD may be linked to gut. Hope this helps!

[Hidden in reply to LauraYu]

This is absolutely fascinating to me and o appreciate your sharing it.

[LauraYu in reply to Hidden]

Good luck to you 🥰

[Canddy]

Nice post Art! Very easy to read and understand!

[chartist in reply to Canddy]

Thank you for saying so, Canddy!I'm trying to work on making things clearer, so your feedback is very helpful and let's me know how I am doing.

Art

[Astra7]

I was given a pro notice called mutaflora by an intergrative GP when first diagnosed. It was developed using the faeces of a soldier who didn’t get dysentery when everyone around him was getting it.It was quite pricey but might be worth trying again.

(I stopped seeing that GP as she had me taking so many different supplements and detoxes that my whole life revolved around my illness which I didn’t like).

[chartist in reply to Astra7]

Yes, I agree, if you choose a supplement approach for health issues, it is likely to be overwhelming for many people. Not many people could take MBAnderson's supplement protocol imo.

On the other hand, when or if science is able to develop an ultra potent super probiotic in place of FMT, that should be simple and easy for everyone to do. In the second FMT study above they only gave the recipients of FMT, less than 2 ounces of the donor stool at the beginning of the study period which lasted all of the participants 12 weeks of continually reduced test scores and reduced motor and non motor symptoms. In the first study, 2 participants got benefit for 2 years which was the length of follow up. Even if you had to take such a probiotic once every 12 weeks, how easy would that be? There is still much that is unknown, but would be very useful to know about FMT such as will FMT make it possible to reduce your current dosage regimen of PD meds? If it could allow recipients to reduce their C/L dosage, it might reduce the incidence of dyskinesia or having to raise the C/L dosage for a much longer period of time.

Art

[Hidden in reply to Astra7]

I believe I found it online but I am hoping to confirm. Mutaflor

Brand: Medical Futures

Currently unavailable on Amazon but has 17 5 star reviews

[Astra7 in reply to Hidden]

This is the one I took

Photo of Mutaflor package

[Bolt_Upright]

So well written Art! Thank you so much. I have been following FMT closely since my REMSBD diagnosis in April. Some points that might interest people:

1: Even though FMT is not approved for PK, there are a LOT of DIYers out there. Search on YouTube. There is risk.

2: Facebook is loaded with FMT groups (yes, I am in all of them). facebook.com/groups/FecalTr...

3: Here is a pretty positive article: Rapid improvement in Alzheimer’s disease symptoms following fecal microbiota transplantation: a case report

journals.sagepub.com/doi/10...

[chartist in reply to Bolt_Upright]

Oddly, that case report was done in 2020 and the one I linked to in the original post was done in 2019, yet AD is the number one neurodegenerative disease. Compared to the 2020 and 2021 PD/FMT studies, it seems almost primitive, but so did the 2019 PD/FMT study I linked to.

Sadly, there are many AD patients who could potentially benefit from FMT right now! In the case report they said more studies are needed to better understand how FMT helps AD. Given the known safety profile of FMT when proper screening and testing are performed on the donor and transplant material, it would be nice if they started using it and testing it simultaneously to understand exactly what FMT is doing, but allowing patients to benefit at the same time. Any safety concerns seem to center on improper screening and testing.

Bolt, thank you for posting this, it was interesting as I have not read about the effects of FMT on AD yet, and that seemed like a reasonable primer to get me started reading more!

Art

[Bolt_Upright]

I'm not endorsing. I'm just sharing. The default order is enemas, but I would make sure I got the poop pills. Microbioma, email [e-mail]

[chartist in reply to Bolt_Upright]

B_U,

It seems as though delivery of FMT to the colon via colonoscopy is very effective as they start the discharge of FMT as the colonoscopy reverses direction giving a very good spread of the FMT in the colon. The enema delivery does not reach nearly as far into the colon as the colonoscopy and I would think that would make it significantly less effective for the purpose. What is your take on the difference between these two delivery methods?

I also notice that the FMT kit you linked to uses multiple enema bottles, whereas the 2021 FMT study used only one dose of less than 2 ounces of the FMT at the beginning of the trial and that small amount continually improved disease symptoms for the full term of the 12 week study with the best benefit to tests scores and symptoms seen at the end of the trial suggesting that there may be more improvement left in the FMT tank for those study participants.

Art

[Bolt_Upright in reply to chartist]

Colonoscopy is clearly better than enema, at least it seems to be, but you need a doctor for a colonoscopy so there is no DIY for colonoscopy.

I think crapsules have been shown to work as well as colonoscopy.

If I had to choose I would take crapsules + enema over colonoscopy. And i would stick with it for at least a year.

Bolt.

[chartist in reply to Bolt_Upright]

Are capsules available to the general public? If so, who is screening the content?

Art

[Bolt_Upright in reply to chartist]

Crapsules are available from Microbioma. It defaults to enemas but you can order crapsules.

[chartist]

While FMT is not quite available for use yet by PwP, perhaps there are other considerations in the meantime.

In a previous post I mentioned that many things that are mentioned or discussed on this forum for PD, also have a positive impact on the gut microbiome. One of those things I briefly mentioned was Albert/wriga's ongoing broccoli/ sulforaphane experimenting.

In the mouse study abstract link below, it is shown how Sulforaphane normalizes the mouse gut microbiome and enhances/repairs the gut barrier function in mice with chemically induced bladder cancer. Sulforaphane also lowers the cancer related inflammation while positively altering the gut bacterial balance and increases butyric acid levels in the colon. We have already discussed butyrate and its potential benefits for PwP at significant length on this forum. Here is a link to that abstract :

pubmed.ncbi.nlm.nih.gov/303...

Here is the conclusion of the study :

>>> ' These results suggest that SFN protects against chemically induced bladder cancer through normalizing the composition of gut microbiota and repairing the physiological destruction of the gut barrier, as well as decreasing inflammation and the immune response. '<<<

Judging by the results that Albert has mentioned, Sulforaphane would seem to be quite potent as the effective dosing range seems to be fairly narrow, meaning that it may be easy to get too much and suffer adverse effects such as those experienced by forum members who have overdosed on B1, which, by the way also has a positive effect on the gut.

The point of all of this is that FMT is not the only way to make a positive impact on the gut microbiota in PwP or anyone else for that matter. Btw, I thought Millbrook may find this of interest.

Art

wriga

Millbrook

[Hidden in reply to chartist]

I intend on starting my broccoli sprout project with weekend. Rhonda Patrick has instructions. Do you have an opinion on nutritional yeast? I believe it’s a natural way of getting B in the diet. Still researching this just I just acquired some to try.

[chartist in reply to Hidden]

ccl,

Even though you are correct that nutritional yeast can be a source of some B vitamins, minerals and other healthful benefits I have avoided it in favor of actual B vitamins and individual minerals because I have read that it can promote the fungus, Candida Albicans and that is something I do not want, an overgrowth of Candida. The information I read may be wrong, but if it was correct, I am not interested in aiding Candida in any way when I can take the exact B vitamins and minerals I want without risk of candida. The Ochratoxin A issue is something I am not interested in running into either. I have also avoided Brewer's Yeast.

Despite its many potential health benefits including gut health, nutritional yeast is one that I do not feel is right for me, but that could change if I find more compelling evidence in its favor!

Art

[Hidden in reply to chartist]

Thank you ArtI will have to research further and may just have the yeast on occasion

Thank you

[chartist in reply to Hidden]

ccl,

Please keep us updated on the broccoli sprout testing and I hope you take notes to share your test in detail with the forum!

Art

[Elephantlydia]

Thank you for the information.My only reservation is where these placebo controlled trials,because it is well accepted that placebos can have up to a 40% effectiveness.

[chartist]

This post is just to give a few updates on FMT.

First a preliminary trial out of Israel shows benefit in 5 out of 6 PwP. Comparing this information to the the two trials that came out of Asia, it is clear that Israel is definitely trailing Asia in this important area of research of FMT and PD. You can see by the way that they chose to use intranasal delivery of the FMT, as this method was shown in the 2020 Asian study to be inferior in effect compared to the colonoscopy delivery of the FMT. Well, that still seems better than the US who to the best of my knowledge has produced nothing in terms of FMT trials in PwP. Asia seems so advanced in this area of PD research while the US seems so nothing. I wonder why that is? Here is a link to the 6 patient preliminary case series out of Israel.

pubmed.ncbi.nlm.nih.gov/342...

This next 2 patient case series was done in Poland and they tested FMT on two Covid-19 patients who also had C-Diff infection, a very difficult to treat gut infection that FMT is mainly used for here in the US. The results are confusing to me so I am not going to try and figure them out, but according to the title there was "rapid resolution". Here is a link to that series.

gut.bmj.com/content/early/2...

The third study seems a bit more coherent and here is a link to it :

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

Art

[Hidden]

Considering the interest in the gut biome, has anyone looked at the research being done on diet (as opposed to FMT) as a means to transform the microflora of people with IBD & Crohn's Disease?

Dr. David Suskind of Seattle Children's Hospital has had remarkable results: pulse.seattlechildrens.org/...

Fecal Microbial Transformation: Diet as Therapy in IBD (Dr. David Suskind)

youtu.be/EBTrD4m1vGU(Not working as expected?)

I am dealing with some memory issues/brain fog atm, so I hope this is coherent:

1931-1950s - clinical work of Drs. Sidney & Merrill Haas (wrote book: Management of Celiac Disease, 1951); a year later, gluten is embraced by the medical community as the cause of celiac disease and the Haas protocol fades into oblivion

1950's - Elaine Gottschall's daughter treated successfully by Dr. Sidney Haas (he died shortly afterwards). Gottschall is inspired to become a biochemist and cellular biologist to further the work begun by the Drs. Haas, and eventually writes Breaking the Vicious Cycle in 1984.

For a historical overview along with some newer findings in the SIBO community (Small Intestine Bacterial Overgrowth) (I otherwise know nothing about this site as I've only just found it through a google search for Gautschall Haas.): siboinfo.com/history.html

The SCD has also seen success in the autistic community (pecanbread.com has a lot of resources related to the SCD): pecanbread.com/p/intro/abou...

Anyway, Hi! I'm new here, and not diagnosed with PD although I do have non-motor symptoms and a family history of PD.

[chartist in reply to Hidden]

crimsonclover,

Welcome to the forum, I think you will find it interesting!!!

This is a constant ongoing conversation on this forum and of great interest to me since FMT is currently just a carrot dangling in front of PwP, but still out of reach. I believe there are multiple ways to repair the dysbiotic gut microbiota and FMT was a means to prove it can be done with great results for PwP in a relatively short period of time. I have written about one potential way here:

healthunlocked.com/cure-par...

I will watch your video as soon as I get a chance as I am interested.

Regarding your brain fog/memory issues, you may find the following link of interest in terms of resolving that issue :

healthunlocked.com/cure-par...

Art

[Hidden in reply to chartist]

Thank you so much.

When I heard Dr. Filip Scheperjans talk about the research being done with mice (removing and then reintroducing pathology by transplanting microbiota), it was so intriguing!

Also the whole yogurt debate is something that is talked about in the SCD community too. There are only some strains that are acceptable, and then only if it has been cultured 24 hours.

Anyway, looking forward to hearing if there is anything of use that can be gleaned from Dr. Suskind's work and if it will dovetail into what you've been investigating. Thank you for all of the work you (and others!) are doing on this!!

[Bolt_Upright in reply to Hidden]

Hi crimsonclover, may I ask what non-motor symptoms you are seeing? I have not been diagnosed with PD either, but have REM Sleep Behavior Disorder.

[Hidden in reply to Bolt_Upright]

I haven't decided yet how much detail I want to share in the forum. Let's just say it is a long list. I started paying attention when I began having difficulty swallowing, as that is something that happened to my PD grandfather. This week I was sick and began supplementing. One of the first things I added was NAC and within 24 hours some long-standing problems (including anxiety & lack of motivation, among a few others) completely disappeared. I also added quercetin towards the end of that 24 hour time period, and was consistent with multi-vitamin and D3, and B-complex.

[Hidden in reply to Hidden]

hmm.. when I read that it doesn't sound like much. If you knew how long I've been non-functioning due to fatigue and absolutely no initiative, it would be more impressive. And basically house-bound due to anxiety. So that change was a pretty big deal for me.

[chartist in reply to Hidden]

Many people have found relief from long standing fatigue via high dose thiamine. It doesn't work for everyone, but nothing does.

Art

[Bolt_Upright in reply to chartist]

Dr Constantini said it would stop progression which was more than good enough for me. Plus he used it to treat Hashimoto's also, which I have.

[Bolt_Upright in reply to Hidden]

Thank you. Please tell me more about the NAC. How much you are taking. I was taking 600 mg of NAC along with 1000 mg of Glycine at night until about 6 days ago. I just cut it from my stack as I thought I was taking too many things. I had not had an episode of RBD in over a month and after stopping the NAC I had an RBD episode so I am thinking of adding it back.

Please see the B3 topic also. I started taking Niacin 250 mg time released after reading that. healthunlocked.com/cure-par...

[Hidden in reply to Bolt_Upright]

I'm afraid that I'm not at all knowledgeable about NAC. I can't even say for certain that is what caused the change, although that is my suspicion. More importantly, the sudden change (along with the hygienist saying that my mouth is very dry) led me to do some random search about PD, which led to some outstanding and informative webinars, which led to here. And now I know that some of my issues are non-motor symptoms of PD, which I was not aware of before.

[chartist in reply to Hidden]

You may find this helpful :

healthunlocked.com/cure-par...

Art

[Hidden in reply to chartist]

Thank you so much!

[Bolt_Upright in reply to Hidden]

Thanks, but how much NAC are you taking?

Also, the most pro-NAC study I saw had them using NAC with Glycine. GLYNAC. That is why I combined them when I was taking it.

[Hidden in reply to Bolt_Upright]

I'm sorry; I'm just not comfortable saying as it seems (to me) too close to giving advice, and I'm not knowledgeable about it at all. It was recommended for me, and for illness (not PD).

[Bolt_Upright in reply to Hidden]

Fair enough. I frequently warn people not to take my posting as advice as I have no training and can be belligerently stupid.

I was taking 600 mg NAC with 1000 mg of Glycine. I may go to 1200 NAC with 1000 Glycine. That will get me in the same proportions as the study (but only about 15 percent of what the study used).

[Hidden in reply to Bolt_Upright]

I just looked up GLYnac. It looks good. I wonder how it is different from NAC pills with Glycine. I just acquired glycine powder.

[Bolt_Upright in reply to Hidden]

I'm sure it is the same thing except with GLYNAC the ratio is 50 50. And GLYNAC is more cost effective.

[Hidden in reply to Bolt_Upright]

Bolt, why are you concerned about taking too many things? Is it Strain on digestion? Or they might not be compatible? I’m concerned about taking too many things as well but I keep learning about more that is believed to be helpful so it’s hard to know what to omit.

[Bolt_Upright in reply to Hidden]

I think the kidneys and wallet can only take so much. Plus I so much want to get back to the days when I just had PB&J sandwiches.

[Hidden in reply to Bolt_Upright]

Have you looked in to TUDCA and milk thistle ? I believe both are good for the kidneys or maybe it’s the liver

Too much too digest

PBJ! Oh I miss it too! I would love to eat a whole jar of peanut butter.

But alas, I just ate salmon and cabbage.

[Hidden in reply to Bolt_Upright]

Thank you for that link. I've bookmarked it -- it looks really interesting!

[chartist]

I just wanted to update this thread regarding an FMT/ RCT in people with Type 1 Diabetes that I came across recently. No it is not about PD, but it is an RCT and it did get very good results in the participants and I think it illustrates the powerful and far reaching effects of gut microbiota manipulation in human health. The study is titled :

Faecal microbiota transplantation halts progression of human new-onset type 1 diabetes in a randomised controlled trial

Here is a link to the full study :

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

For people who are aware of the great difficulty of treating Type 1 Diabetes, you will clearly see the tremendous health value that gut microbiota manipulation represents!

When I was much younger, a friend died from this disease and pieces of him were chopped off of him like a car in a junkyard until he was gone in his late 40's.

Art

[chartist]

This new study abstract (August, 2021) suggests that microbiome manipulation via washed fecal transplantation in hypertensive people, lowers their blood pressure :

pubmed.ncbi.nlm.nih.gov/344...

Human studies are very slowly illustrating the broad ranging positive health effects of microbiome manipulation.

Art

[Hidden in reply to chartist]

Mind. Blown. It is incredible that such a thing is possible.

[WinnieThePoo in reply to chartist]

Interesting ArtPoo is my thing was from day one my strategy for PD.

healthunlocked.com/cure-par...

Was my first post. 3 years on, these questions remain unanswered, although the broad direction supports the original poo theory

Where is there a proper clinical trial demonstrating a clinical benefit for PD? I know of poor trials that have completed and good ones yet to report results

Where can I get a relevant poo analysis with expert interpretation of results relevant to a PD diagnosis?

Where can I find a neurologist willing to talk and treat poo

Critically, and the reason for this reply - how long does the effect last? How long before the. Microbiome reverts? Its not like clearing up a C-diff infection. When it's gone it's gone. And the minimum cost for me of a proper WMT procedure is £6000. I can find that for a one-off treatment but not a 6 monthly renewal.

My fear is people will turn to cheap bodges

[chartist in reply to WinnieThePoo]

Well, Mr. Poo, we've already discussed the obscene amount of money that the pharmaceutical industry stands to lose if "Poo Therapy" is ever used to its full potential in a multitude of diseases that it is thought it may be useful for. Under these circumstances I remain highly doubtful that Poo Therapy is ever going to get an honest shot as a viable therapy much beyond its current usage.

That is why I am experimenting on myself for the disease that manifests in me to see if I can try and manipulate my own microbiome in my vey limited way to try and reverse or at least slow the disease process. Not scientific, but my results so far are impressive to me and so the experiment continues as I have written about here :

healthunlocked.com/cure-par...

and here

healthunlocked.com/cure-par...

It may not be helpful for anyone else, but I am posting about it to share what I am doing and how I am responding on the chance that it may help other people. I now have a slightly better understanding of the role of the gut microbiome in disease and my current results in this experiment represent the best results I have been able to obtain in over a decade and I have been self experimenting to fight this for my entire adult life.

Art

[WinnieThePoo in reply to chartist]

Why bring up the pharmaceutical industry?I don't believe we have already discussed them? How do they have any relevance to the development of FMT as a therapy for Parkinson’s disease?

[chartist in reply to WinnieThePoo]

Mr. Poo,

The reason I bring up the pharmaceutical industry is because they are in the top ten largest lobbying groups in the US and their job is to do everything in their power to insure that the pharmaceutical industry retains its power and wealth which means they will work very hard against FMT because FMT threatens their profit. Its the amount of money involved that the pharmaceutical industry stands to lose if FMT became a viable treatment for any major disease. If it starts with PD, it would likely soon be used for AD, and then MS and every disease that has gut dysbiosis as a feature of the disease.

It isn't just the pharmaceutical industry, it is also other factions of the medical industry complex and suppliers of medical equipment that may lose business also. Here is the top ten industry lobbying groups that spend the most money to protect their power and wealth in the US :

1. Facebook Inc.

Most people are familiar with Facebook. They’re the social media giants that defined social media and created a new way for personal interactions to happen virtually.

You might wonder what Facebook needs lobbyists for. Well, they saw some antitrust lawsuits from both state and federal government in the last year and needed to help sway people in their favor.

There have also been a lot of concerns about how tech companies moderate content, display ads, and protect the personal information and privacy of their users.

Other issues that Facebook has lobbied for include copyright reform, election integrity, content policy, immigration, and international tax policies.

2. Amazon

Amazon is a giant in the digital retail space. This is a fairly new area and it’s growing so quickly that technology and laws are having a hard time keeping up. It’s clear that to stay where they are or where they want to be, Amazon needs to be on top of laws regarding the internet and e-commerce.

Amazon is obviously another tech company and they have several areas in common with Facebook when it comes to lobbyists. In fact, together the two of them were particularly active in 2020.

Apparently, issues related to coronavirus legislation were a big part of their efforts. When it came to Covid, they supported the CARES Act which gave relief to small businesses.

In addition to supporting the same causes, they’ve also faced the same scrutiny by Congress and the Federal Trade Commission (FTC) about possible violations of antitrust laws.

3. NCTA The Internet & Television Association

The Internet & Television Association or NCTA used to be called the National Cable & Telecommunications Association, which is where the NCTA acronym comes from. They represent broadband and pay television, which is more than 200 cable networks.

But they also represent the equipment sales and providers of other services within the cable industry.

This group is very well-known for its lobbying stances on net neutrality and municipal broadband. But other topics that they’ve had a hand in are Eliminating Abusive and Rampant Neglect of Interactive Technologies Act, Platform Accountability and Consumer Transparency Act, Online Freedom and Viewpoint Diversity Act, See Something, Say Something Online Act, and Promoting Responsibility Over Moderation in the Social Media Environment Act.

4. Business Roundtable

Business Roundtable is a collection of Chief Executive Officers from businesses around the country. Their main purpose is to promote public policy that is favorable to business interests. They were for NAFTA and No Child Left Behind while opposing the recent Trump Administration’s family separation policy.

CEOs are the only people allowed to be a part of Business Roundtable and some of the biggest hitters out there are part of the group. CEOs from Amazon, Apple, and General Motors are members. This gives the group a lot of clout in addition to power.

This lobby-centric group is quite known for blocking labor law reform in 1977 that would have given employees more power to form unions. This is part of the reason they often disparaged for putting profits ahead of their employees.

5. American Medical Association

The American Medical Association (AMA) is a huge part of lobbying efforts, especially as Coronavirus is such an all-encompassing topic and healthcare continues to be a debatable subject.

One thing the AMA comes under fire for repeatedly is its attempts to stop health care reform. But their stance shouldn’t be a surprise to anyone; the group has been opposed to a national health insurance program since 1949.

Interestingly, it seems that medical students and some professionals are fed up with this approach and are beginning to fight back. The Medicare for All topic seems to be what’s prompting the divide between professionals in the medical field and the group that claims to represent them.

6. Blue Cross/Blue Shield

A big health insurance company, Blue Cross/Blue Shield definitely has some interest in public policy related to healthcare. In the past, they’ve been involved in the Affordable Care Act, stabilization of the individual market, health care reform, and Medicare issues.

Blue Cross/Blue Shield is a Medicare contractor for the federal government, so they are very concerned with issues surrounding Medicare and any changes in current regulations.

7.American Hospital Association

The American Hospital Association (AHA) is another health-related group that does a huge amount of lobbying.

As you can tell, health care has been a very big concern as of late and that’s reflected in how active these healthcare companies are and how much money they’re spending to ensure that government reform doesn’t harm their business and the care of their patients.

The AHA officially says that they strongly support the creation of an efficient and effective infrastructure for health information exchange that facilitates the delivery of high-quality, patient-centered care.

8. Pharmaceutical Research & Manufacturers of America

Pharmaceutical Research & Manufacturers of America (PhRMA) is a trade group that represents pharmaceutical companies. They push for policy that encourages the discovery of new medicines. One big controversy that comes to mind in this realm is the use of stem cells in research.

But they do other lobbying efforts that have a huge impact. One that’s well-known is SMARxT Disposal. It is a program that they run in combination with the U.S. Fish and Wildlife Service.

This program encourages consumers to properly dispose of unused medicine to avoid environmental harm. They also do a lot to connect patients with low-cost and free prescriptions.

Their public statement is that they are devoted to advancing public policies that support innovative medical research, improve treatments, and yield real results.

9. National Association of Realtors

It might be surprising that the National Association of Realtors is so involved in lobbying. In fact, there have been years where they led the list of top lobbying spenders.

Whereas companies and lobbying groups associated with healthcare seem an obvious choice, how does the National Association of Realtors fit into the plan?

This realtor group works hard to shape public policies at all levels; national, state, and local, that affect real property.

They state that their goal is to protect the real estate industry from burdensome legislative and regulatory changes and to promote changes that enhance the business of real estate. They are also very against the government taking property through eminent domain.

10. U.S. Chamber of Commerce

The U.S Chamber of Commerce is one of the largest lobbying groups and spends a huge amount of money.

Because this group represents a vast amount of companies, they are a bit all over the place in their lobbying efforts – which is why they spend so much money. They’ve been involved in climate change and Trump’s executive order ending the Deferred Action for Childhood Arrivals.

The U.S. Chamber of Commerce is often involved in very controversial lobbying topics and comes under fire from a lot of groups who believe they’re unscrupulous.

They’re even called a money-laundering organization by some because they let a company contribute to lobbying efforts that support that company, but they get to remain anonymous, under the cloak of the U.S. Chamber of Commerce.

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

If any of these lobbying groups decide that FMT is a threat, then they will do everything in their enormous budgets to stifle it in any way they can. It's simply about the tremendous amount of money they stand to lose. Their whole existence is based on people being and remaining sick. If FMT makes people healthier, that means that people will need to see their doctors less often, go to the hospital less often, have medical procedures less often, need less medical equipment etc. FMT would have a negative impact of the bottom line of many companies simply because if FMT works as well as current studies suggest, people will not have as much need for many medical related services. The lobbying groups that would be effected simply can not let that happen. Of these top 10 spending lobbying groups, that would be numbers 5, 6, 7 and 8 at a minimum. If you think a little further out, even Amazon would be included as they sell plenty of medical equipment and supplies. I imagine even Facebook to a minor extent might be opposed because they have many groups that are dedicated to health related issues.

This is why I brought up the pharmaceutical industry as a major reason why I think FMT may never get off the ground despite what the current studies may show. I don't think it is an accident that the US has not completed an FMT/PD study. The two studies about FMT and PD came out of Asia.

Art

[WinnieThePoo in reply to chartist]

Art, mateMuch much too long.

Richard

[chartist in reply to WinnieThePoo]

.....but you knew it was going to be a long one, right! 😝😝😝

Art

[WinnieThePoo in reply to chartist]

OK my reply could be really short. Big Pharma are not going to lose billions by the development of FMT and are not going to try to block it.

I started reading it, but it's much too long and unfocussed.

I know Americans don't realise there is a world outside the USA, but that landing strip between the civilizations of Europe and Asia accounts for 4% of the worlds population only. The EU is 50% bigger. Although , for now, the USA is (just) the worlds biggest economy, it is only 20-25% of world GDP

No amount of US lobbying affects the development of FMT in Europe, China, Japan, Israel... or rather, lack of development

It hasn't affected FMT for C-diff in the USA

If FMT made a small dent in Big pharma profits (PD, for big pharma, is mostly a low margin generic of Sinemet - 30 years out of patent - high volume, low margin and low profit) it would swamp the existing clinic capacity.

In the UK there are 100000 people with PD. 100000 potential candidates for an FMT wonder cure, once its clinically proven. There is one clinic, with a capacity for maybe 10 patients a week . So, provided nobody new is diagnosed with PD until the backlog is cleared, big Pharma should have their low margin PD business wiped out in 10000 weeks, call it 200 years for cash

And that assumes its a one-off treatment and not a 6-monthly renewable! If I were CEO of Pfizer and I thought FMT for PD worked, as a businessman I'd be looking to buy an FMT clinic before the CEO of MSD beat me to it

[chartist in reply to WinnieThePoo]

Mr. Poo,

I'll keep this one short.

You can quote statistics until were dead, but the proof is in the pudding as they say here in America. The bottom line is who has actually completed preliminary studies on the use of FMT for Parkinson's Disease. The US has not completed any that I am aware of. The two that have been completed were done in Asia. How many has Europe completed? These are stepping stones to actual high quality RCTs. Without the preliminary studies, the RCTs become much less likely to ever occur and leaves FMT out of the mainstream medical treatment options for PwP.

This leaves bootleg FMT treatments as a much less than optimal choice for those willing to chance it.

I think one way forward where the pharmaceutical industry can get their "slice of the pie" is for them to use the data derived from all FMT studies and their own studies to create "Super Probiotics" that they can patent and that essentially replicate FMT. It won't be cheap, but if the pharmaceuticals are offering it, it will likely be approved by insurance companies and available to PwP that way. For many PwP, this will easily be a much more appealing option than FMT, that actually has a chance.

Art

[WinnieThePoo in reply to chartist]

Art

I think the point is - why would you expect pharmaceutical companies to research FMT?

Any more than say Ford Motor Company or Apple?

Not sponsoring research into something which has no potential to be developed into a product is not the same as blocking or obstructing.

Pharmaceutical companies operate to make a profit. They are not charities funded by donations to promote research. They pay (billions) into research as a product development investment

Research into FMT for PD is either going to be funded by charities (MJFF, Cure Parkinsons) or FMT clinics or academic institutions

But Pfizer or Smithkline are no more obliged to fund it than Walmart or Starbucks. And their failure to fund it, is accordingly not obstruction

Richard

[chartist in reply to WinnieThePoo]

Mr. Poo,

Pharmaceuticals are only going to fund what makes them money. There is no question about that and to me it makes perfect business sense! They are there to make money and their lobbyists are there to make sure that that money and power remains theirs and will spend huge sums of money to make sure nothing threatens their bottom line. That's it in a nutshell! They clearly are not are going to fund FMT studies that can only hurt their profits, but I don't doubt for a second that they will do everything in their power to make sure that FMT does not get major traction in the research arena because that is in their best interest if FMT doesn't.

Here in the US, the NIH, with their very large budget ($43 billion/2021 and up 1 billion dollars each of the last 6 years) can fund studies into FMT through universities and private institutions if they supposedly see that there is value in such research, but I do not see that they have funded a study here that has completed for FMT/PD. I can speculate on why that is, but the main point is that they haven't yet, despite the multitude of studies pointing to the idea of the huge potential of FMT for human health.

Ten years ago, PubMed had 12 studies listed under "Fecal Microbiome Transplantation". Last year they had 960 listed and this year they have 735 studies listed so far. The interest is clearly there, but the NIH, for some reason, does not seem to be putting meaningful funding toward FMT.

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

I am not holding my breath waiting for MJFF to fund such studies for FMT after the way they dealt with B1, which they were not even aware existed as adjunctive treatment for PD! That's what their business is supposed to be all about, PD. If the topic was being talked about well over 5 years ago on this forum, why isn't MJFF pursuing dispersal of their study funding for FMT/PD already?

Art

[WinnieThePoo in reply to chartist]

Nonsense

[chartist in reply to WinnieThePoo]

I agree!

Art

[WinnieThePoo in reply to chartist]

On the subject of relevance my post was about Parkinson's disease. I am pleased that you are having success treating your psoriasis. Talk about it on a psoriasis forum.

I started to read the posts you linked to, but they were much much too long, and so can I ask you instead. Where do you get your poo analysed? In summary what are the main changes in your microbiome composition between the first analysis and the most recent?

[chartist in reply to WinnieThePoo]

Mr. Poo,

The relevance is that both diseases have gut dysbiosis as a feature of the disease and in both cases repairing the gut microbiome is thought to offer significant benefit and I am trying to repair my gut based on studies and if it works, I am trying to share how I did it in case anyone is interested in trying it themselves. I am not doing any gut biome testing, but rather watching how my skin reacts to what I am doing to try to find the most effective choices, but if you don't read what I wrote, then you wouldn't know it.

Art

[WinnieThePoo in reply to chartist]

But Art

That's fine - and I'm really glad your skin is improving. It might have nothing to do with your microbiome. Not least because of the way psoriasis consists of waves of flare up and remission, and is so sensitive to stress, and like PD - the healing balm of the mind

The only way you know it's poo is to analyse the poo. I discovered the poo analysis game at Interprise in 1999 - where we made stuff like this

provita.co.uk/calving/prote...

In PD - I am interested in stuff like this nature.com/articles/s41531-...

But the point of my post was that in the context specifically of FMT (the subject in the heading), not microbiome tinkering generally, the high price of treatment, which might give only temporary relief might tempt DIY experimentation, which is high risk

I was thinking particularly of the nieces nappy (daiper for USA) and long handled teaspoon brigade

😱

We need less tea leaf reading and more science

[laglag in reply to WinnieThePoo]

I was just reading an article about gut microbiome and drilled down to this article...

It may be helpful.

drjockers.com/gi-map-stool-...

[WinnieThePoo in reply to laglag]

Thanks. I appreciate the thought. It has 3 shortcomings

It's $459 - that's exploitation pricing

It's in the USA - I'm in France

For all the exploitation (custom) pricing it provides the same packaged consumer analysis I get from Atlas biomed at a quarter of the price. It won't help me compare my situation with this nature.com/articles/s41531-...

Really - what's needed is an expert facility interested in expanding and implementing the research in the treatment of PD

[laglag in reply to WinnieThePoo]

Thanks, I didn't get down to the price. That's crazy!🥊

[Hidden in reply to WinnieThePoo]

Agreed.

[Hidden in reply to WinnieThePoo]

Where can I find a neurologist willing to talk and treat poo

Perhaps a naturopath or functional doctor that could work in conjunction with a neurologist?

Seattle Integrative Medicine (Dr. Mischley's clinic) has done telemedicine for people in other countries. I am speaking to one of their doctors today that specializes in neurology, Parkinson's and most specifically the brain and gut connection. This is my first visit though, so we'll see. I'm also hopeful that their office will be able to help in my search for a neurologist that is at least on-board with the poo connection. Maybe you have similar options available in your location.

Another advantage of a naturopath is that they spend enough time with you to actually talk about underlying causes/conditions and do some exploration. I've not found that to be true of neurologists. Having the two work as a team may be ideal.

[WinnieThePoo in reply to Hidden]

Thanks. That's a good thought. What I really want is a neurologist interested in FMT. I intend looking at this seriously next year. Covid permitting. I am not yet aware of a fmt clinic in France and only one in England. So I may have to pursue this as an English project.Meantime I'm waiting for a proper PD trial result. It bothers me that the only UK clinic makes no claims for PD efficacy. There is a potential market for 100000 PD treatments and any solid proof of efficacy would open up a gold mine for the sector.

[Hidden in reply to WinnieThePoo]

Are you completely wedded to FMT being the answer to correcting the gut biome?

I ask because of the work of Dr. David Suskind at Seattle Children's Hospital who has done FMT for Crohn's, but has had amazing results without it (through diet).

eta correction: I think it was for Crohn's, but I'm in a rush and cannot verify at the moment

[WinnieThePoo in reply to Hidden]

Nope. The A plan was diet./probiotic. But it would be nice to see an evidence based PD specific result. And that, among other things, needs an ability to analyse the microbiome in poo in the same way as the research which could distinguish a PD microbiome from a regular one.

In the meantime I continue to treat my microbiome to photobiomodulation

[Hidden in reply to WinnieThePoo]

Are you on a specific diet to promote a healthy biome? I know you like the Mediterranean diet. If you have research regarding this, much appreciated.

I’m compiling information on this off of HU. Once I have a regimen worthy of sharing I will.

Edited to clarify: massive amounts of info on Mediterranean diet are obviously accessible. I mean info that is scientific and or PD in nature.

[WinnieThePoo in reply to Hidden]

I have lapsed a bit recently, but aimed at Mediterranean and lower carb. I have no idea whether it has changed my microbiome in the way I'd like since I can't find a lab to give me the analysis (and interpretation) that I want.I include natural probiotics. Live yoghurt, kefir, sauerkraut, kombucha, unpasteurised cheese (fromage cru)

Fresh fruit, whole grain, but mostly avoid refined sugar and refined starch. I try to have a core of food monkeys and chimps eat cos, nutritionally we aren't so many steps up the ladder from them. Contrary to what I've read on this forum we are developped to eat sugars in fruit and starch in whole grain. The higher primates, including homo sapiens, are one of only 3 animals unable to manufacture enough vitamin C and needing to ingest it in their diet (fruit)

Anyway my point was meant to be it's not possible to objectively measure how effective it is. Unlike with the product we used to manufacture

provita.co.uk/calving/prote...

It worked. The calves diarrhoea cleared up. All roads lead to poo 😊

[Hidden in reply to WinnieThePoo]

I understand your reasoning that eating fruit has been part of the human diet since we were dragging our knuckles. But, what fruit? The modern day citrus is nothing like what was eaten as we were evolving. Likewise with grains. Goodness, wheat has changed in just 100 years by scientists paid to increase profit margins. And if it’s vitamin C your after, the herb thyme is loaded with it.

Sorry to be a party pooper but all the sugar is very detrimental to your brain. “Nature’s dessert” is not natural, manipulated by man to such an extent that it’s unrecognizable.

You are saying a Yorkie is a wolf.

[WinnieThePoo in reply to Hidden]

Actually, in evolutionary terms, a Yorkie is close to a wolf. It could breed with one (if you lent it a step ladder)

I don't think the sugar in modern fruit is radically different from older fruit. I realise you are opposed to sugar , and (particularly in the USA) there is an issue with refined sugar.

The point was, we were designed to run on carbs. I'm not saying pizza bases and mojito are health foods. Refined sugar and starch is lazy carbs. The fuels ok, but we were also designed to get other nutritional benefits from our food, and refined carbs have no fibre, vitamins, minerals, probiotics or other micronutrients.

But the great food designer who produced a specialist , custom nutrition for humans, made it 50% sugar. One assumes she knew a thing or two about how to make the perfect food to run the machine. The nutritional scientist I knew thought so and designed his pet foods accordingly. (Edit : 50% carbs - mostly starch, not sugar!!)

[Hidden in reply to WinnieThePoo]

Replying again to say thank you for sharing your diet philosophy. I do not mean to pounce. Based on solid evidence, I’m just very adamantly opposed to eating sugar.

[WinnieThePoo in reply to Hidden]

Understood. We each make our choices. Where we can. Where I can, I like to follow Mother Nature

[Hidden in reply to WinnieThePoo]

Whilst following what you believe to be Mother Nature, I recommend using a glucose monitor and reading info on insulin’s contribution to dementia. I will get off my soap box.

But I hope that one day you and others won’t be saying “ wish I had taken seriously what that annoying twit kept harping on about.”

[WinnieThePoo in reply to Hidden]

OK. But I think Mother Nature probably knows a thing or two. And she designed human breast milk to be 50% sugar (lactose!!!) 10% protein and 30% oils and fats. That's taking a percentages of food - dry matter . Dry matter is about 15% of the total/ It's about 80% water. (The other 5% is ash and trace elements)

(Collostrum is higher protein / lower carb)

Carb's are the fastest burn energy - converted into energy with least work by the body

Oils and fats contain about 2.5-3 times the calorific value of carbs but they are slow release - not as immediately available as carbs for energy, and they are needed for other things

Protein has about the same calorific value as carbs, but is not good to burn as fuel. It's slow release, and the conversion puts a strain on the liver and kidneys

I am sure excess sugar is a potential health problem. As is obesity. Both especially so in the USA (13% of adults diabetic - it's about 5% here in France). But that doesn't change the fact that the food nature made for us is 50% sugar.

It is worth bearing in mind that European diet is significantly different to the USA. To name a few - glyphosate is banned, antibiotics and growth hormones in cattle are banned, chlorine washed poultry is banned. And there is much less refined sugar consumed

[Hidden in reply to WinnieThePoo]

Who is breast milk intended for? Fattening up 60 year old men?

“Carbs” is so broad that a discussion in such broad terms leads to misinformation.

What is good for the general population, school children, etc, does not apply to those of us with a neurodegenerative disease. Oversimplifications and broad generalizations are very misleading.

Yes American food is much worse than European food.

I’m moving in now.

[Hidden in reply to Hidden]

If you search on Dr. David Suskind, you will find scientific info on normalizing the gut biome by use of diet. However his research has nothing to do with PD (as far as I know). I believe his starting protocol involved the SCD (Specific Carbohydrate Diet -- which is not a low carb diet, by the way) but I don't remember if, or in what manner, he may have altered from it.

[WinnieThePoo in reply to Hidden]

I know this is not the recipe book you were hoping for.

I don't have a Med diet for PD - how would I know if it worked? A sample of 1 with no control group in a complex world is unreliable

I do prefer the idea that even in this world of stress, toxins, and pollution that I try to run the machine on the fuel it was designed to run on. The likes of keto don't really fit that bill. And gluten free is wholegrain free. There is evidence of grain consumption going back 100,000 years (tools for making sorghum - not just consumption of wild grasses) My neighbour is the oldest European - Tautavel man!

One of the great myths is that carbs are not part of the human diet. We are specifically designed to run on a high sugar diet. At least in the beginning

[Rhyothemis in reply to WinnieThePoo]

... also tubers and honey (see video below).

You can be GF and still eat whole grains, though pw Celiac on GF diet actually have higher markers of inflammation associated with higher consumption of whole grains relative to refined (I suspect due to higher intake of arsenic from brown rice) hindawi.com/journals/omcl/2...

youtu.be/kaKT9rSnsoA?t=1056(Not working as expected?)

[Hidden in reply to Hidden]

Thank you for introducing me to Dr. David Suskind. I listened to him today and it was very interesting. On another thread, you mentioned a different doctor. I thought I would remember the name but alas, I do not remember. Would you mind please sharing the names of other doctors from whom you get information on diet and biome and supplementation? I think the doctor mentioned was something about Ubiquinol?

[Hidden in reply to Hidden]

I'm drawing a blank on Ubiquinol.

I've mentioned Dr. Walter Crinnion and Dr. Ralph Golan.

[chartist in reply to Hidden]

ccl,

You might be referring to Dr. Shallenberger and Ubiquinol ?

secondopinionnewsletter.com...

Art

[Hidden in reply to chartist]

Art, I just read about the UCSD Co Q 10 study from 2002. Amazing! In humans for a change! 40% reduction in progression after 8 months of treatment, safe and OTC. Yes please! Thank you so much!

How can I ever reciprocate your help? I am so grateful for your research.

[chartist in reply to Hidden]

ccl,

Yes, but you have to temper that with the rest of the research. Look at this 2017 meta analysis that showed essentially that CoQ-10 was similar to placebo. It is a meta analysis and they try to weed out questionable or weak studies or studies that don't meet their requirements, which can be stringent.

pubmed.ncbi.nlm.nih.gov/278...

You also have to do some of your own reasoning too. They are testing CoQ-10 in PwP, meaning they are an older group since PD is an age related disease. CoQ-10 is known to not do as well in older people compared to younger people whereas Ubiquinol is known to do better in older people than CoQ-10. So using Ubiquinol may be a better consideration with a better outcome.

Art

[Hidden in reply to Hidden]

Did you see this article on Dr. Suskind? pulse.seattlechildrens.org/...

[Godiv in reply to Hidden]

I think you’re on the something, although so far it doesn’t seem like neurologist or much interested in working with anyone. I shouldn’t say that it might not apply to everybody. I would love to find some kind of holistic neurologist if such a thing existed.

[Hidden]

Art, I would be very interested in hearing how you tend to your biome via the other end, what your diet or a diet you would recommend consists of. I am in the process of extensively researching this.

[chartist]

ccl,

I'm not recommending anything diet wise until I find out if what I am currently doing will offer consistent benefit. It has so far, but I haven't even reached 12 weeks yet. I tried many different things over decades to try and improve my condition and many have helped for a short time and then stopped working or not working as effectively over time. This one for now is working well and is lasting well up to this point, which is longer than most have done.

Art

[Hidden in reply to chartist]

That is great to hear Art. I’m happy to learn that so far anyways, your current regimen is working well. I too am in the trial process.

[Rebtar]

Hey, we're all different. Some people can eat some whole grains and fruit just fine without spiking their glucose too much. I restrict my carbs to some berries and kiwi (with skin, for constipation) in my morning smoothie. And lemons and limes. I've found that my glucose spikes really easily and one of my grandparents had diabetes. So I think anyone who eats a fair amount of carbs, even fruit, whole grains and tubers, should use a glucose monitor to see how it affects them. Some of us might be fine, others not so much...

Also, grains are a major source of mold (mycotoxins like Ochratoxin A which a lot of people with PD test high for). This mycotoxin has been described as teratogenic, carcinogenic, genotoxic, immunotoxic and has been proven a potent neurotoxin.

[Hidden in reply to Rebtar]

I have been adding kiwi skin to my smoothies! Thank you for the recommendation! I did not know that grains are a source of mold. Thank you for making me aware of that. I know that coffee is. It is my hope that buying the beans and grinding myself reduces the risk of mold but really I do not know. ?

[Rebtar in reply to Hidden]

I don’t know either…

[rescuema in reply to Hidden]

Soaking, rinsing multiple times, and sprouting live whole grains will lower mold contamination since you're not eating stale processed grains. You can also use a few drops of Grape Seed extracts (GSE) while soaking to minimize the risk if desired, but I personally don't bother anymore. You simply can't avoid all possible sources of nutritious foods to stay sterile for fear of minute possible contaminations. If you have a healthy diverse microbiome, the potential for fungal infection simply drops.

pubmed.ncbi.nlm.nih.gov/226...

[Hidden in reply to rescuema]

Thank you Rescuema. Sprouting grains and watching PBS videos you linked to on the biome are going to be part of our homeschool science.

[chartist]

This recent FMT meta analysis shows that "crapsules" are as highly effective as other FMT delivery routes in the treatment of C-diff.

pubmed.ncbi.nlm.nih.gov/344...

Crapsules are a much less invasive method of delivery for FMT compared to colonoscopy delivery and this adds a bit more confirmation to the idea that the science will eventually evolve to the point where doctors will no longer need FMT, but rather will be able to deliver the proper bacteria via capsules as a "super synbiotic". This will eliminate the need for donor screening, extensive fecal sample testing and other drawbacks associated with the current FMT methodology.

Art

[chartist]

For those who are still wondering how FMT may have helped PwP so effectively in the FMT/PwP studies, the following link to a new and very brief study abstract gives a a quick summary of how that may have happened.

pubmed.ncbi.nlm.nih.gov/345...

Art

[WinnieThePoo in reply to chartist]

Art"For those who are still wondering how FMT may have helped PwP so effectively in the FMT/PwP studies,"

Can you provide links to these studies where FMT has so effectively helped Pwp please?

[chartist in reply to WinnieThePoo]

Both links are in the original post at the top of this thread. Are you feeling okay?

Art

[WinnieThePoo in reply to chartist]

Thanks, It's a very long thread, mostly off-topic. I started going back up it, and ran out of oxygen

[WinnieThePoo in reply to chartist]

Thanks. Your use of the word "may" was key. I'm reluctant to shed my Comrade Poo title bestowed by PDConscience, but I am wary of the quality of the rash of short duration, small population, open label studies the Chinese are chucking out.

No placebo (although arguably the naso-gastric arm sort of fulfilled that role). The 2nd study only monitored results to 12 weeks. The first trial only had 2 of 17 showing benefits after 24 months.

What happened to the European trials?

[chartist in reply to WinnieThePoo]

Uhh, still waiting...

Art

[chartist]

This very recent article (October 14, 2021) discusses how the gut microbiome changes with age toward a microbiome more biased toward disease. If I were to ever get a fecal microbiota transplant (FMT), I might select for a donor who is not only healthy, but also younger!

scientificamerican.com/arti...

Art

[chartist]

I came across this informative article on the how and why of gut issues in PD and info on FMT that seems worth adding to this thread and makes for interesting reading on this topic .

journals.im.ac.cn/html/cjbc...

Art

[Bolt_Upright]

Fecal microbiota transplant as a potential treatment for Parkinson’s disease – A case series 2021 sci-hub.se/10.1016/j.clineu...

"In this preliminary study of PD patients, a treatment with donor FMT infused via colonoscopy, was safe and resulted in improvement of PD motor and non-motor symptoms, including constipation, at 6 months.

Further research is needed to assess longer-term maintenance of efficacy and safety, including in large scale randomized controlled trials, preferably in patients with moderate-severe PD."

[chartist in reply to Bolt_Upright]

Those studies are highly "not likely " to occur in the US. There is a study from another country (Belgium?) that should have a larger cohort and results possibly this year.

clinicaltrials.gov/ct2/show...

Art