MICROBIOME Series

[PDConscience]

This is the first segment of the new microbiome series (link originally provided by 'farido'). It's well worth a look: youtu.be/2mhe0PmUIGI(Not working as expected?)

[LAJ12345]

I watched it too. Very interesting. Here is part2

interconnectedseries.com/ep....

Watch it this week all the episodes for free, then they charge for it.

[MBAnderson in reply to LAJ12345]

Thanks you two. Important series. I just got my kit from Viome and am looking forward to the results. I think all PWP have imbalanced microbiome and I think the worse it gets, the more it accelerates the progression.

[PDConscience in reply to MBAnderson]

MBA, The science supports your suspicions. The exact mechanics of it all has yet to be sorted out but the differences in microbiota composition between cohorts and PD patients become apparent in early stages of the disease: "Our data revealed differences of colonic microbiota and of microbiota metabolism between PD patients and controls at an unprecedented detail not achievable through 16S sequencing [*a lower resolution sequencing than that of Viome]. The findings point to a yet unappreciated aspect of PD, possibly involving the intestinal barrier function and immune function in PD patients. The influence of the parkinsonian medication should be further investigated in the future in larger cohorts." Let's hope some tweaks to the microbiome can help minimize inflammation and stall the toxic clumping...

genomemedicine.biomedcentra...

*Because of the recently completed lab renovations, my sample 'status' still indicates "analyzing results". The reply to a recent inquiry promised 'results and recommendations' should materialize (via app) soon...

[MBAnderson in reply to PDConscience]

PD,

I trust you will get yours soon. I'm sure you seen this or one like it. I'll be sending mine off today or tomorrow.

youtube.com/watch?v=zuVw8bG...(Not working as expected?)

The gut chemistry seems as complex as brain chemistry.

Another good link. Thanks.

Marc

[PDConscience in reply to MBAnderson]

I’m unlikely to fare as well as ‘Ben’ but am definitely looking forward to having a more reliable means by which to tweak and monitor diet/lifestyle...

[Kia17]

Amazing videos , Thank you all for sharing.

[WinnieThePoo]

I support the subject. I am reminded of the European / American divide when it comes to diet. In the UK we have a bit of an issue leaving the EU and contemplating US food standards in a UK/US trade deal. In the UK we don't add weight to our cattle by giving them antibiotics, we don't wash our chickens in chlorine, and we don't spray our genetically modified crops with ROUNDUP shortly before harvesting them. We go easy on the corn syrup.

We also tend to go easy on the hyperbole. In spite of the awesome, amazing, mind-blowing, species-changing, trillions of cell, revolutionary (etc) nature of this subject - nobody has produced one documented case of PD management through microbiome change. None of these guys discuss their failures to apply therapeutic solutions. I don't want to throw the baby out with the bathwater, but there is a lot of "wow, amazing" and not too much mainstream documented results in PD. An hour and twenty minutes - the content could have been covered in 10 minutes easily. (If I'm grumpy its because I'm silly busy with tax returns, but don't want to miss this stuff)

Viome just found a business model better than chronic disease. Never mind whether you have a disease or not, for life , at $400 pa (plus interim checks) you need to monitor your microbiome anyway, always - our way, and only our way.

I have just sent off a poo test to Atlas biomed as an interim measure - they were readily available for my short visit to the UK in a way I couldn't rely on Viome being at the moment.

But I fear neither the Viome results nor my Atlas biomed results are going to enable me to identify my microbiome in the specific context of the research papers which identified a PD group microbiome disbyosis which was specific enough to amount to a biomarker.

It will be a good thing to care for the microbiome generally - it is my main focus every waking day. But it would be interesting to have the ability to test whether the specifically PD microbiome can be changed into a specifically non-PD microbiome, and if so what effects on the disease that has. I'm not sure our amateur poo tests are going to do that.

[MBAnderson]

Poo,

May I call you that?

It certainly is true that here in the US our government has allowed our food chain to become not just unhealthy, but in many ways contaminated which, of course, is because special-interests give money to politicians who are happy to do their bidding. I, for one, think the vast majority of United States of America politicians are among the most corrupt, amoral, deceitful, hate filled, ignorant, self-aggrandizing, self-absorbed, and selfish people on the planet, so you get no argument from me on that score. Plus, we are now ruled by the King of Hyperbole.

As the Internet is virtually laden with content connecting the health of the gut to the brain of PWP, could you be a little more precise what you mean by "...PD management..." because, for example, doctors who prescribe pharmaceuticals consider that 'management' even though they do not affect the underlying disease. So, by 'management,' you must mean slow or stabilize the rate of progression?

Also, I'm not sure what you mean by, "...one documented case..." There's no shortage of videos on YouTube by real people providing authentic reports of their health being greatly improved by correcting their microbiota imbalance. While those are not RCT studies, as a person who does not have 10 years to wait for the bureaucrats blessing, I consider them documented cases.

I'm not sure we need a study believe that a compromised micro-biome is bad for us and that "fixing" it is prudent.

One thing leads to another. Doesn't a compromised microbiome impair absorption which causes nutritional deficiencies, hormonal and enzyme imbalances which trigger other health issues? Also, do you think a compromised micro-biome contributes to, among other things, IBO and a number of G.I. issues including inflammation, intestinal permeability, SIBO, which can trigger an autoimmune response or an autoimmune dysfunction which leads or contributes to ulcerated colitis or Crohn's all of which can accelerate progression?

in other words, all other things being equal, a PWP who has no other health issues would progress slower than a PWP who has a number of illnesses and as these conditions accumulate and worsen, they cause the progression to accelerate which creates a feedback loop. No?

Lastly, is the effectiveness of fecal transplants relevant?

Marc

[WinnieThePoo in reply to MBAnderson]

Marc

You can call me Poo!

Oh poo! I typed a long reply this morning and now know why my tablet was asking "are you sure you want to navigate away from this page". I forgot to save it. As noted then, I missed this post (and PDC's) as it didn't flag in my notifications. I think I allowed tax return frustration (and an 18hour return journey due to the revolting French) to taint my comment. Apologies for that

Yes - a compromised biome is bad and fixing it is good. I am an unequivocal advocate of that. It's news to many. I knew it 25 years ago when I was FD for a probiotic research company called Interprise. I have been trying to find my original textbooks from the time (lost in packing boxes, not yet opened after the move to France)

What is new, since 2015, is a growing body of research specifically linked to PD and the microbiome. Recently diagnosed with PD, I am particularly interested in that, and investigating my own condition and possible treatment in the context of that. There are many potential unknowns. For example, it may not prove possible to change the biome enough simply by diet and / or probiotics to create any effective change in the disease process, and a fecal transplant may be the only effective way to get a result. (Maybe not) Presumably that is the case with C Diff infections, or the FDA would not authorise fecal transplants, but would tell patients to eat more yoghurt. It may be that a fecal transplant, if it worked, would only provide temporary improvement, and the "disease mechanism" would change the microbiome back to its unhealthy state after a short time. I have seen no information on this - but it would be nice to know.

Personally, my hope is that the microbiome can be usefully improved on a DIY basis to improve my PD condition (and I can share that with others). But it is currently a hope. A bit of research in the field wouldn't go amiss, and is what I am keen to lobby for.

As for "one documented case" - this video ( I skimmed a bit, but don't think I missed any meat) endlessly repeats the mantra that the microbiome is a new and exciting discovery that could be the future of health care, and has successfully treated many diseases , and COULD be the key to others like PD. It strongly implies that it already is. But whilst I have read many strong implications that the general concept could and HAS been applied to the benefit of PD patients, I haven't yet met anything like

"This is Brian. Brian was diagnosed with PD 4 years ago, and his condition has deteriorated in a steady manner by 4 UPS points pa since diagnosis. 12 months ago he changed his diet / (or had a fecal transplant) and since then his disease has not progressed using the same UPS score"

(Effectively the measure used in say the steady PD 3 trial, the Exanatide trials etc)

My bet is, that for anyone with the stamina to watch this series, they will not be introduced to Brian.

Which is not to dismiss the importance of this subject, or its potential to be an important part of the future of medicine. It is just looking to take the hyperbole out of the subject.

I guess a very long winded way of saying "I like the subject and look to the microbiome as a potential component in defeating PD - but this video wasn't my style"

Richard (or Poo)

[PDConscience]

Pooh, You seem a bit conflicted in your feelings about the potential new treatment avenues opened up by microbiome testing and monitoring. At one point you state, “the more I looked, the more I noticed how much the microbiome was featuring in very recent research papers specifically related to Parkinsons research. I know a bit about the gut brain axis and microbiome generally from my interest in the subject whilst FD of the probiotic company. And I think that area offers the most promise“.

Next we find you launching a rather juvenile, flag-waving UK-vs-US rant to bemoan what you consider an excess of "hyperbole" on the subject emanating, apparently, only from the US.

With an abundance of studies and research highlighting a clear and definite connection between the microbiome, inflammation, and our immune systems - coupled with the strong indications of our guts being ground-zero for the misbehaving a-syn proteins underlying our problem - your complaint that, "nobody has produced one documented case of PD management through microbiome change" suggests you may be stumbling a bit too far out into the weeds on the issue. Your "fear" that "neither the Viome results nor [your] Atlas biomed results are going to enable [you] to identify [your] microbiome in the specific context of the research papers which identified a PD group microbiome disbyosis which was specific enough to amount to a biomarker" (huh?!?) confirms it.

You appear to be channeling 'johnpepper' when lamenting what you perceive to be a diabolical nature (Yankee conspiracy?) behind Viome's "business model". Viome is a business and operates as such. It uses the highest resolution microbiome sequencing/analysis currently available to offer people a 'personalized' analysis of their current state of health at the microbial level, together with 'personalized' diet/lifestyle recommendations for addressing any deficiencies uncovered on an ongoing, evolving basis. Many consider these to be the most promising tools thus far available through which we may adjust and monitor our diet/lifestyle and finally regain a degree of control over the progression of our disease. If at any point a user feels that testing and monitoring serves no purpose, they're certainly not obligated "for life" as you imply - they simply cease testing and monitoring.

Meanwhile, I note your praise for Atlas Biomed UK for being "readily available for [your] short visit to the UK in a way [you] couldn't rely on Viome being" (withstanding their recent lab expansion/CLIA certification). If you could escape the weeds for a spell, you may eventually come to realize the 'apples and oranges' of your comparison. Unlike the meticulous analysis and ongoing follow-up in the Viome package, Atlas Biomed UK merely provides an inferior poo-test of questionable utility void of the ongoing means by which to tweak and monitor your condition. Clearly for some, that can be a tough poo-pill to swallow...

[MBAnderson in reply to PDConscience]

Well put.

[WinnieThePoo]

Style of this video - not my cup of tea

I accepted there probably wasn't going to be a lot of new content for me, but I hoped that a well presented engaging documentary on the subject would help me share this with my wife and Dad. Both gave up after 10 minutes. I ground my way through the full show, with a handful of fast forwards. The content could have been condensed into 10 minutes. I think its "click bait" spinning its material out over more than 7 hours so that the super special never to be repeated bargain offer to acquire the whole series for an amazing 60% off - just $250 (or whatever the final pitch turns out to be) looks better value than it would if you were trying to sell a 1 or 2 hour documentary with the same content.

It isn't that I object to people making money. I object to this incessant Big Pharma bashing - especially by people looking to use viral internet marketing techniques disguised as a philanthropic desire to share new knowledge with humanity, as a way to make big bucks out of a gimmicky video production

I would love to see a properly prepared documentary by someone like the BBC Horizon team. This was excrutiating.

This video and Big Pharma bashing and John Pepper next

WTP

[WinnieThePoo]

John Pepper

My perception (I am new to this) is that JP likes to whine incessantly in a paranoid fashion about how Big Pharma delight in inflicting chronic disease on him personally to make money out of symptom management when if they wanted to they could easily cure PD and everything else, including old age.

I don't warm to that view. I reject the idea that I mirror him.

This video, repeated the idea , as part of its marketing pitch, disguised as philanthropy, that you wouldn't hear about this if you didn't assist in their viral video distribution chain letter, because Big Pharma would block it, because Big Pharma wants to keep selling you symptom management and stop you discovering you could cure yourself by eating yoghurt instead - maybe JP was a script writer. (And I paraphrase a little - blame the French)

I am not knocking Viome. I may well buy their tests myself. I am interested to see your results. If the analysis supplied lets me compare my biome with the PD research line by line, and I don't discover a better alternative in the meantime (via my discussion with my research neurologist) then I am very likely to buy it. When you sent me the link, and I looked, it wasn't offering me the chance to buy a kit due to lab refurb work. When I looked again, I wasn't sure about the UK sample return process. Moreover, as I posted on my "how do you manage your microbiome" thread - I had a course of antibiotics in July, and so it wont hurt to wait 12 months before shelling out on a Viome test. In the meantime I wanted a bit of feedback on the state of my bugs.

However, whilst not knocking anyones right to make money, I also find the Viome sales pitch a bit cheesy. It too emphasises Big Pharmas business model for chronic disease, and strongly implies that its philanthropist billionaire founder is gifting this modern health miracle to humanity as a charitable function from one wishing to use his wealth in that way. Actually, its the business model of the millenium, and I would invest in it. Never mind Big Pharma locking in those with chronic illness. Viome looks to lock in all of the human race - because in their own way, all of them can benefit.

My Dad's dose of Sinemet costs about $350 pa (and since he is on a generic, probably costs about $100pa). I don't know for sure because in the UK medication is free to over 65's) Viome is generating $400 pa at a variable cost of maybe $10 pa (there is some hefty up front investment in labs and AI, and ongoing lab staffing overheads, but even so.)

I think it not unreasonable, in the context of all this Big Pharma bashing, by both the video producers and Viome, to draw attention to their own lack of philanthropy, and very high return business models.

But lets not fall out over it

WTP

[MBAnderson in reply to WinnieThePoo]

GoodRx shows 90 tablets of Sinemet 25/100 for $17.84.

I agree with you about their marketing, it is offputting.

What you mean by comparing how they report your sequence line by line with the PD research?

I'm just wondering if the PD research applies to all of us exactly the same? Probably doesn't.

I got my kit, but haven't sent off a sample yet. When I get the results, I'll report progress or non-progress as I go along.

Marc

[WinnieThePoo in reply to MBAnderson]

Marc

I am having a frustrating time with IT after implementing a new portal for my business and have lost some links and saved pdfs. And I am silly busy at work, in part due to a long-standing client passing away, but its the UK tax busy season anyway. I'll look again soon, cos I want to discuss it with my neurologist.

Regarding the "biomarker" there was one specific piece of research from around 2015 which identified 2 bacteria groups in surplus, 2 in defecit and a virus and suggested these allowed a differential diagnosis of PWP from the control group. There is plenty of other stuff

MJFF have a trial running to identify a microbiome biomarker

michaeljfox.org/foundation/...

This also

jnmjournal.org/journal/view...

ncbi.nlm.nih.gov/pubmed/301...

and again (to an extent) this one

ncbi.nlm.nih.gov/pubmed/288...

When I find the one I want I'll link it

Regarding the virus idea

parkinsonsnewstoday.com/201...

Regarding the "line by line" - if there is a pattern to microbiome dysbiosis in PWP which is sufficiently unique to amount to a biomarker, rather than just "PWP get a disrupted microbiome" then it begs some questions

1) Can I alter that microbiome so it now on analysis drops into the control group and not that of a PWP?

2) If I can change it, does it change the PD or is it just a PWP with an artificially different microbiome ?

3) If I can change it, and it changes PD, will it stay changed?

4) What does it take to change it? (As I noted before, all the Viome analysis in the world, and diet change , is unlikely to shift C Diff - it takes a fecal transplant to do that. Why not research what it takes in PD?)

Maybe the answers will all be "no deal". But it makes sense to ask the questions, and its frustrating nobody (that I can meet and join) is doing so yet. Maybe there is research going on - the bright idea wasn't unique to me

ncbi.nlm.nih.gov/pubmed/285...

If I may, in a separate post, I'll answer a question you didn't ask

Richard

[WinnieThePoo in reply to MBAnderson]

The question you didn't ask - about Brian

I only watched the first episode, but I bet Perlmutter shows up before any viewer makes it to the finishing-tape.

The video, like others, especially with Perlmutter, and like his book "Brain Matter" from 2015 talk about this as a new subject, just discovered, about to change the world.

In fact it has been around a long time, more than 30 years (if I could find those books...) although mainstream interest is growing exponentially since about 2005 and PD specific research from about 2015.

25 years or so ago, I worked in a probiotic research company, and most of the content of that video was common knowledge then.

The likes of Perlmutter, legitimately big-up the importance of the field, but in my view disingenuously big-up the inference that it WILL be central in management of chronic illnesses, as though it were a fait-accompli

In fact, Perlmutter has a clinic and treats people with parkinsons.(sorry to pick on him, but like Brian he is a representative of the principle) . There is a video of him from 2008 with him "curing" PD with glutatione injections. So he must have had patients with Parkinsons who could pioneer and benefit from this microbiome miracle

Where is Brian? When the talk is "this could help PD" why no examples of it doing so?

I just wanted to balance the genuine potential with the risk of hyperbole. Like the "New pill stops PD in its tracks" - the problem isnt the subject, its the way the headline writers spin the story.

I would also, selfishly, like to see a good documentary specifically on PD and the microbiome. There is plenty of material available

Richard

[WinnieThePoo]

I should note that if anyone with the stamina to work through the whole series could provide a precis of any content likely to be beneficial, then I doubt very much that I would be the only one to be grateful to receive it.