Why I want to research active microbi... - Parkinson's Movement

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Why I want to research active microbiome therapies for Parkinsons

WinnieThePoo
WinnieThePoo

Why I think the microbiome is key

(Stick with it – links to poo coming up…)

Having been diagnosed with PD, and offered regular Sinemet therapy, I resolved to look for alternatives and hope for a cure. Dopamine – whilst central to PD and effectively the definition of the disease, appears to be only part of the story. In looking for ways to stop the disease progress, it seemed that the “mechanism” itself creates a lot of the symptoms. So addressing the disease process / mechanism protects dopamine neurons (and other bits of the brain) and stops the progress, but also relieves other symptoms and treats the condition directly.

Of interest were (and still are) repurposed drugs. Exanatide, Isradipine, Simvastatin, other glp-1 receptor agonists, Defreraprine. And new drugs – I think the trial I have agreed to is the phase 2 for PX00002 – anyway, it’s a monoclonal alpha synuclein antibody. But these are probably partial solutions, if they work. And they take time to reach authorisation. It looks like Exanatide is now going forward for a phase 3 trial, but that will be 3 years trial duration, so from first intake to last finisher 4 or maybe 5 years. And it hasn’t started yet. And further licencing will be maybe 2 years. If it’s a winner, I could be taking it in 8 years time. But I will have irreversibly lost a lot of neurons in that time.

Isradipine, I can cheat. I have (borderline) hypertension and my UK GP had me on Amlodopine which I blamed for DIP before the DATscan confirmed true (quite advanced) PD. I stopped taking Amlodopine, but my French GP is prepared to prescribe Isradipine. (And my UK GP will prescribe Simvastatin for my high cholesterol). I am a bit statin phobic though

So, back on topic – new drugs aren’t here yet. And, as my reservations about statins affirm, drugs have side effects. So if there are 2 ways to get a result, that are equally effective, a non-drug approach is favourite. (Unless you work for Big Pharma***)

Hopefully – if the disease process / mechanism can be stopped / slowed – then the likes of pluripotent stem cell grafts may restore a more natural dopamine supply (and my guitar playing).

The “mechanism” isn’t (I don’t believe) comprehensively understood, but includes alpha synuclein mis-folding and excess, mitochondrial stress, inflammation, excess iron, and calcium channel vulnerability.

I’m not rejecting the drugs. They probably target only one or two of the mechanism sinners. But they are not here yet. The most interesting may not be here for 10 years. I need something now. Non-drug options were therefore researched. Some common themes were obvious – manage stress, exercise vigourously, and the ketogenic diet and gluten avoidance.

It very rapidly became very obvious that microbiome and Parkinsons research is the new kid in town – with exponential interest from about 2015. The gut-brain axis generally has been on a rising trend for at least 20 years.

First – we get the idea that not only is there a problem with the bacteria in PWP – but it is sufficiently typical to be considered a potential biomarker

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

And again - sciencedirect.com/science/a...

Then – if you give mice poo from PWP they get PD (I paraphrase a lot)

cureparkinsons.org.uk/News/...

So maybe , if you can change the bacteria in PWP, then you can significantly and usefully change the disease progress / mechanism

sciencedirect.com/science/a...

And maybe , whilst we wait for Parkinsons research to take an interest and start sponsoring research into specific targeted probiotics, it is possible to affect the microbiome with generic probiotics, prebiotics, natural fermented foods and other diet considerations

Or failing that – if faecal transplants work for mice…

biocodexmicrobiotainstitute...

This isn’t loony fringe stuff – its just that the need is more urgent for me than it is for mainstream science. But they’re looking at it

gut.bmj.com/content/66/4/569

Already too long – but that’s why I’m Winnie the Poo!

*** - regarding Big Pharma, my parents met in the research labs of Boroughs Wellcome (now the Wellcome Foundation, part of Smithkline Beecham). My Dad then moved to Merck Sharpe & Dohme (MSD) where he spent the rest of his career. I remember him launching Sinemet and watching films on a projector of PWP recovering control. Dad was diagnosed with PD 4 years ago. My sister has spent a career at Pfizer.

Oh - and I was once involved with Interprise, a probiotic company who made species specific probiotics for calves and lambs as a treatment for scour, to keep antibiotics out of the food chain. There - disclosures done with :-)

44 Replies

Not quite sure how to go about things here. Comment on my own post or create a new post. What is a blog? Is it appropriate to start one? Back on poo, and my desire to approach this with a bit of science, where can I get my gut bacteria tested AND get a report which discusses the result specifically in the context of the research I have linked to.?

Great question - hope you get some answers here!

Answers: viome.com/

Thanks. I was aware of their product. It is not evident from their web site that they test specifically in the context of PD. Nor that their generic advice would take account of medication. I am currently using flax seed powder with kefir as a "colon cleanser". Farine de Lin is sold locally as a vegan protein supplement. Probably not recommended were I on Sinemet. (One reason I am keen to delay levadopa therapy as long as possible is that it is itself associated with microbiome disruption, and conventional PD diets, which are really PD medication diets, are often diametrically opposite to what I want to do for my gut bacteria.)

Our local lab in my town in France will do a test which reports detailed results. I don't believe I am qualified to interpret them in the context of my PD. So really I want a PD neurologist to supervise the experiment.

PD and Winnie the Pooh,

You've probably seen this 51 minute interview with Nuveen Jain on the root cause of all chronic illness. He is clearly an impressive person. Lot of YouTube videos about him, a billionaire, etc. There are a few companies that do this that I've been looking at over the past month and I am getting pretty interested in it. Makes a lot of sense to me. Lot of Viome testimonials on YouTube which I double checked against their Facebook page and they seem authentic.

youtube.com/watch?v=cKb7R5z...

I'd not seen it, although I suspect I know the hymn sheet. Thank you for sharing this. I like the explanation of varied expression of response to inflammatory stress. That had been on my list of questions (although I could repeat it for PD and I'm not sure weakest link explains it). Its a paradox, but I am wary of another non-scientist knowing the science. But this is mainstream what I am attempting. My source for diet ideas has been David Perlmutter, who is big on leaky gut, but gluten fixated and a ketogenic diet promotor, and they felt wrong based on my previous microbiome experience. I will investigate this more, but maybe I got lucky with my guesses about my microbiome and that accounts for my PD experiences to date (probably too early to tell, but ...)

If you're leery about nutrition advice from a nonscientist, I wouldn't spend too much time on Perlmutter.

When I 1st started looking for nonpharmaceutical therapies, I gobbled up everything Perlmutter said. Not so much anymore.

Like Dr. Grundy claims all lectins are bad in the cause of all illness, Perlmutter claims about the same thing for gluten. Creating expectations of dramatic improvement by eliminating one thing such as gluten or lectins from your diet is a gross oversimplification of nutrition.

" ... he has sold everything from “Empowering Coconut Oil” to supplement blends tailored for specific demographics, like the $90 “Scholar’s Advantage Pack” for “young adults seeking to optimize cognitive function,” and the $160 “Senior Empowerment Pack,” a “combination of formulas designed to help keep you cognitively sharp as you age.” One book pointed readers to an $8,500 brain detoxification retreat run by Perlmutter, which included shamanic healing ceremonies. (He even has his own organic foaming hand soap.)

"

$8500 brain detoxification retreat including shamanic healing ceremonies??? Oh, please.

“[Dr. Perlmutter] contributed extensively to the world medical literature,” reads his website, “with publications appearing in The Journal of Neurosurgery, The Southern Medical Journal, Journal of Applied Nutrition, and Archives of Neurology.” Earlier bios also list the Journal of the American Medical Association.

"Yet a closer look at his publications reveals that Perlmutter hasn’t actually conducted much research. ... But his contribution to JAMA — an extremely prestigious medical journal — is actually just a letter to the editor. The Southern Medical Journal? A case report and a clinical brief, both co-authored with his father when the younger Perlmutter was still a medical student. Archives of Neurology? Another case report. (Case reports and clinical briefs are short discussions around 1-4 pages long.)"

" ... Perlmutter describes the science of Grain Brain as “undeniably conclusive.” He is similarly confident about the treatment regimens proposed in Brain Maker, telling his readers ... “I can’t wait to share with you the countless stories of individuals with myriad, enfeebling health challenges … who experienced a complete vanishing of symptoms following treatment,” he writes. “These stories are not outlier cases for me, but by standard measure of what might typically be expected, they seem almost miraculous.”

thecut.com/2015/06/problem-...

JAS9
JAS9 in reply to MBAnderson

I agree about Perlmutter. He picks up ideas and tries to find a profit, and if he can't he moves on to another one. I will give him this - he's an inspiring writer - but he's usually full of hyper-bull.

Juliegrace
Juliegrace in reply to JAS9

Exactly. He reels in the newly diagnosed, blinding them with hyperbole that does not stand up to scrutiny.

Julie, I get a email notice that you posted a comment, but when I hit the link, there is no post. Apparently, you posted an article you thought was balanced, but I don't see that post on this thread. This post that I am replying to now is the only post of yours I can find on this thread. I think someone else noticed that they can't find your posts? Put up another post on his thread and I'll see if it's still happening.

I did reply with a link, but deleted it after reading further.

AmyLindy
AmyLindy in reply to Juliegrace

Wow what a creep!

AmyLindy
AmyLindy in reply to JAS9

😑 and I had hope especially b c his parents both had PD (and he is a neurologist) if memory serves- please correct me as needed?

Interesting. I'd assumed the charlatan but having only read (most of) brain matters it wasn't as in my face as (say) John Gray, and since I'm buying nothing but one paperback, hadn't looked that hard. I took those 2 to be the route of a lot of the tree-hugger websites for PD. And I doubt most of those extolling nutrition and lifestyle solutions are fraudulent, so there is likely to be something there. As I noted previously I wonder if something in the diets like keto helps the microbiome by accident and is the rational explanation for their positive experiences. So I wasn't happy with gluten or keto (although, down the line, if I fix the microbiome and still test leaky gut, I don't mind looking at gluten. I suspect a fair handful of folks, including my son, have a problem with gluten). However the core ideas about microbiome management fit the external research in the references and led to the discovery of the PD specific research, some of which I have posted links to. And I have previous with probiotics. I think Perlmutter is right when he asserts that in the future mainstream healing will shift towards areas like microbiome management. Effectively what Naveen Jaïn is saying. And philanthropist billionaire he may be claimed as, that business venture is nonetheless structured for (stratospheric) profit potential. Which doesn't necessarily mean it's not worth a look. If I remain unable to find a PD researcher interested in pursuing it. Hence full circle to my original questions and frustrations.

AmyLindy
AmyLindy in reply to MBAnderson

Great summation, MBAnderson; saves us tons of time on rabbit 🐇 hole findings & research corroboration!

JAS9
JAS9 in reply to WinnieThePoo

You might want to check out Dr Zach Bush. He has interviews all over youtube. He tailors his talk to his audience so some go deeper than others. He has something to sell, but who doesn't? His ideas on the gut are very interesting.

WinnieThePoo
WinnieThePoo in reply to JAS9

Thanks. At least the first YouTube I watched is upfront about the commercial links. (I don't mind people earning money). I think I get the concept. I understand quite a lot from before my diagnosis about the microbiome. What I want is tests that tell me if my bacteria still match a PD biomarker after my routine of diet management, (exercise) and probiotic and prebiotic supplementation. If they do, are my alphasynuclein levels in my tears PD biomarker positive, "normal" or somewhere in between? If my microbiome is still identifiably PD can a faecal transplant change it? Will it stay changed after the transplant or will PD change it back? Lab mice didn't have PD, just injuries which caused the symptoms. If the biome changes will it affect disease progress? It needs PD research to take an interest in this. It is relatively low buck for bang and potentially very helpful. Even if its only a bit helpful it's near instant time-frame for availability compared with even repurposed drugs.

Pooh, Uncovering the likely PD culprits among our microbiota is still an ongoing process. One study indicates "gastrointestinal dysfunction, in particular constipation, is an important non‐motor symptom in PD and often precedes the onset of motor symptoms by years. Recent research has shown that intestinal microbiota interact with the autonomic and central nervous system via diverse pathways including the enteric nervous system (ENS) and vagal nerve...

"We compared the fecal microbiomes of 72 PD patients and 72 control subjects by pyrosequencing the V1–V3 regions of the bacterial 16S ribosomal RNA gene. Associations between clinical parameters and microbiota were analyzed using generalized linear models, taking into account potential confounders. On average, the abundance of Prevotellaceae in feces of PD patients was reduced by 77.6% as compared with controls...

"The relative abundance of Enterobacteriaceae was positively associated with the severity of postural instability and gait difficulty. These findings suggest that the intestinal microbiome is altered in PD and is related to motor phenotype."

'Gut microbiota are related to Parkinson's disease and clinical phenotype': onlinelibrary.wiley.com/doi...

At this point in time, I believe Viome offers the best means by which we may revitalize our microbiome: “While identifying the microorganisms in the gut is important, we gain the most insight when we can also understand their function. This is because the microbes in the gut produce thousands of chemicals, called metabolites, that affect your overall wellness. Some of these microbial metabolites can be beneficial to our health, such as vitamin B and short chain fatty acids, while others can be detrimental, such as TMAO, which causes coronary artery disease.

"By analyzing the genes that microbes express, we can identify which metabolites they produce – in other words, we can determine their role in your body’s ecosystem. By following Viome’s diet and lifestyle recommendations, a person can fine-tune the function of their gut microbiome to minimize production of harmful metabolites and maximize the production of beneficial ones." (They will offer service in France soon)

viome.com/our-science/

Thanks. Not sure its necessary to identify a culprit in the bugs - I think "they" and their balance are likely part of the delivery mechanism as much as the single disease cause. What is of interest is what can be done to change the environment for the better. What to do. How to measure it and what can it achieve? I started out looking at disease modifiers. Pretty much, I walked into my neurologist and said "I don't want to start Sinemet yet. Can you prescribe Bydureol for me?" and his reply was "No, but I'll refer you to our country's leading PD researcher". She may yet help, but in the meantime microbiome management looked the most accessible and rapid delivery of the self-serve options (and the biggest potential - it is clearly of rapidly increasing mainstream interest). It would be nice to have a measure other than "I feel better" as to whether it is succeeding. I agree with you - Viome probably looks the best of my options unless I can persuade Dr Brefel to buy into this. Viome are shut for lab redevelopment at the moment. When they reopen I return to the UK regularly for business, so even if not available in France I can use them that way. I need to research more. And its my busy season at work...

But feedback and suggestions much appreciated

Here is another interesting one, although different, I'm comparing to Viome.

ubiome.com/

I'm about 75% there to doing one or the other, probably Viome, but for $400, I need to be 90%.

Has anyone else viewed the testimonials and if so what do you think?

Just read Viomes 19 science backed ways to improve gut health. It could be the ladybird book version of Perlmutters Brain Matters (without the gluten and supplements). Essentially what I have been doing ( I eat quite a lot of natural sugar would maybe be the one area of variance). And core microbiome health lore. It's only addition is the reference to monitoring the biome by a targeted diet recommendations from a $400 analysis. No shit Sherlock! I wonder how many PWP's on here have followed a similar regimin and what results they have experienced? I also wonder how much my "results" are just normal over a short time. One of the problems with a "boutique" disease like PD is having no idea what progression to expect.

Ubiome appears to be only available in the USA and Canada. One of the advantages of Viome appears to be their simple one sample collection and preservation allowing international postage. And hence UK availability

The service offered by our local lab (Cerballiance) requires samples on 3 consecutive days, stored in the fridge, and transported by the lab here in the South of France to Paris with refrigerated shipping. 3 consecutive days. Don't they know I have Parkinsons? It's not a bloody train timetable!

I also have a long-stop eye on the Tamar clinic in the UK -and plan to approach them for advice on testing.

"It's not a bloody train timetable!" Ha.

Viome says the experience of the journalist with the other 2 companies (American Gut and uBiome) produced "completely different results," but as I look at the charts, I see modest differences. What's your take on that? (I'm trying to find the journalist's article.)

All in all, I find Viome's explanations pretty compelling.

I do believe that as our PD progresses, it causes our microbiome to become further imbalanced and dysfunctional which (causes additional illnesses and) accelerates progression creating a negative feedback loop, so doing everything possible to correct gut imbalance seems only prudent.

This individualized/personalized therapeutic approach has to be right, otherwise there wouldn't be such huge variances in PWP's experiences with both pharmaceuticals and supplements.

I guess it comes down to whether or not we have more urgent or better ways to spend $400. If we were all rich, doing it would be a no-brainer.

Viome’s new lab upgrades are just completed and ‘to celebrate’ they’re currently offering $100 discount on the analysis/recommendations service (presently $299) for a couple of weeks.

MBA, A side-by-side comparison of top 3 microbiome-testing options comparing the sophistication of Viome's testing with that of the other contenders - together with the 'personalized recommendations' aspect (with app) - should leave little to consider: viome.com/our-science (Did you receive my message/reply a few weeks ago?)

I haven't mastered this site yet. My email inbox has 3 emails notifying me of posts by juliegrace referencing independent reviews and I can't see them on this thread (although that is where it says they are posted) . If they don't show up I'll try a bit of cut and paste. The side by side comparison is interesting, but not an independent review. The frustration is, if we could get a PD specialist interested, apart from their input on diet / medication compatibility, we could use services like this one

baseclear.com/bianomics/mic...

Have you used the Viome service PDConscience?

I returned my test-kit in late September just before the lab expansion began. I was informed of the lab renovations shortly thereafter. I was assured my 'sample' was being properly stored until operations resumed at which time it would be analyzed with the personalized recommendations to follow soon thereafter (which will appear on my 'Vie' app). The nature of their 'AI' and 'Metatranscriptomic Sequencing Technology' is that the knowledge is constantly expanding and evolving. That leaves me hopeful that certain patterns in conditions such as ours (as well as that of others) will emerge along with strategies for addressing them.

Be interesting to hear what you get. Will it identify PD?

How much hard data about specific bacteria and viruses does it provide? Can these be compared with the PD research findings? Also what data backup is provided for the specific food recommendations when they come. It seems a bit rabbit out of a hat from the marketing.

I always wonder how anyone tests assertions like those.

Will,

Apparently, I missed it. I just read it. Thank you so much. As you pointed out, Viome is on sale for $299. I just ordered my kit and talked my wife into doing the same (never can be too healthy.)

I just started my thiamine injections today. Should I expect a full head of hair within the next few days?

This may turn out to be 1 of the more valuable threads for me.

I never cease to be amazed at how much value this forum provides - compared to what I get from my doctors.

Marc

Hah! I'm not too sure about a full head of hair. More likely - after a gradual dwindling of rapturous testimonials - thiamine hcl will share a similar fate as coconut/mct oil, mannitol, intranasal infrared, etc.

AmyLindy
AmyLindy in reply to MBAnderson

Just opening this chapter... you guys are talking my language for sure!

JAS9
JAS9 in reply to WinnieThePoo

Here's another youtuber who cured his gut biome and is now helping others do the same. His focus is on helping people who have SIBO, IBS, etc to clear out the bacteria that shouldn't be where it is and replace it with healthy bacteria. He is currently on a crusade to prove that the vegans who are quitting due to gut problems had the problems before becoming vegan; he's helping them fix their guts so that they can get back to eating fruits and veggies. He's just gotten his Masters degree and is about to start on his PHD in nutritional science and will focus on the biome. Here's a link to his video that explains how to interpret a stool test as an example of one type of video he does: youtu.be/4VeRuSk76hE

MBAnderson
MBAnderson in reply to JAS9

Excellent.

JerMan22
JerMan22 in reply to JAS9

Thanks, JAS9, that's very interesting and potentially useful. My wife and I are vegan and I have had PD for 12 years. But I have absolutely no problems with my digestion since I started WFPB 5 years ago. My wife OTOH, who doesn't have PD, is a bit of a "junk food vegan" and might need to look closer at this. Again, thanks!

Winnie- start a new thread with “Microbiome & Fecal transplant” or the like - it will be curious, searchable, & gain further discussion!

OK. I'll look to a new thread. But at the moment faecal transplant is my backstop option. It would be interesting if there is anyone, or more than one, who has tried it and can report back. Compared with the price of a pot of yoghurt it's big bucks. I'm keen to explore a diet and available supplement route first. Hugely superstitious about jinxing things, rubbing rabbits feet and touching wood, this last fortnight is making me wonder if I'm getting somewhere. In an ideal world I would have a before and after poo test referenced to the PD research work and reviewed by a suitable expert. Since I live in the real world I'll maybe try and organise one of the readily available poo tests. If the train timetable will behave

These guys have a good reputation locally, albeit their marketing seems a bit Janet and John

atlasbiomed.com/uk

Similar price to Viome, so indicative that , whilst top dollar, the Viome service is competetive. Still not able to access the 3 apparant posts from juliegrace...

Can't access the most interesting link, but I can repost this one

medium.com/@tdkehoe/my-viom...

Again - oh for a respectable qualified PD researcher to take this seriously

Hype Analysis on Viome medium.com/@tdkehoe/my-viom...

Thanks. I think this was one of the vanishing posts by Juliegrace. I've certainly seen it somewhere before. Viome seem keen to build a business model around getting the whole world testing and offering AI tailored plans. "Hype" may be too strong, but it's not as pure as I was looking for. (I think. I haven't seen their output direct, and will be really interested to see what PD conscience feels able to share with us when he gets his results) . I posted a link somewhere to a British lab who provide precisely the analysis I am looking for. But only to professional researchers. I will try to get sufficiently organised to get the atlas biomed poo test done when I am in the UK next week. (if I sober up. Just back from watching our rugby team Quillan win a vital match with quiet the best rugby I have seen them play, and I seem to have had a drink or two.)

Still awaiting my post-renovation results but I'll include below a preview by the Viome CMO of what one can expect from their current toolbox.

I see Viome's services as a big step above the usual blood/urine panels typically relied upon to monitor our various biological malfunctions. I feel the biggest advantage here is that, unlike these more typical means for testing where you're left afterwards to guess at possible solutions, Viome's DNA/RNA analysis is followed by recommendations (based on the beneficial vs toxic metabolites indicated) by which to monitor and tweek on an ongoing basis - a sort of DIY bio-hack until the ultimate 'poo pill' arrives. youtu.be/ABYKlHNoJaE

GioCas
GioCas in reply to PDConscience

PDConscience,

Given that I find the topic very interesting and I thank you for the video, only one question remains pending from an unauthorized person like me: how to determine if it works beyond the theoretical fact, what are the objective gains or good indicators to be observed in optimization microbiome on health and live?

Gio

PDConscience
PDConscience in reply to GioCas

Gio, Subjectively you’ll know your ‘results & recommendations’ are working in the same manner you know when a double shot of grappa is working. Objectively you’ll know from periodic testing/analysis how your response to those ‘results & recommendations’ is improving your microbiome. Combining the two brings it “beyond the theoretical”

Just ordered my Atlas biomed test - microbiome only, for UK delivery. As a stop gap. I am back in the UK for 9 days (travelling tomorrow if we can get past the revolting French and their "yellow vest" protest). Be interesting to swap notes. I doubt this test will be all I want, but it will be interesting to see if I can detect any suggestion that my diet based strategy for changing the microbiome is working

Pooh, It would be interesting to see how the results from the two different systems of testing compare. Various reviews, however, already indicate significant shortcomings among and discrepancies between reports from the less sophisticated testing services. All but Viome use either '16S sequencing' or 'metagenomic testing' from which to devise their recommendations - neither of which is able to determine the critical metabolites your microbes are actually producing.

For that reason, I have a bit more confidence in Viome's deeper level RNA sequencing/analysis which claims to uncover metabolic actions not at only the genus or species level, but all the way down to the strain in order to draw its conclusions and make its health/dietary recommendations.

According to the site, Atlas uses '16S Sequencing' (confirm on Atlas site>FAQS>Microbiome) which 'Identifies only a fraction of your gut bacteria and is unable to identify nonbacterial microorganisms'.

Viome uses 'Metatranscriptome Sequencing' which 'identifies all microorganisms living in your gut: bacteria, viruses, archaea, yeast, fungi, parasites and bacteriophages'. Viome's tests are 'the only genomic tests available that have the ability to see which molecules your microbes are actually producing'.

Comparison of testing methods (mid-page): viome.com/our-science

PDcoscience, thank you; this updated version responds very clearly to my question by highlighting which and how many vital functions are related to a healthy and balanced microbiome. Gio

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