Microbiome testing reports discussion

[jpcv]

No, I don't drink kefir, never have. What's so interesting about this bacteria?

Kefir is not a bacteria but a colony of bacteria and some yeasts, and its composition changes around the world.
It helped with my gut issues too, but it had a limited time during which it helped with my ME symptoms.
I have felt the same with many other probiotics, they improve my symptoms for a while and then the effects are gone....so I think rotating the probiotics might be a better strategy
The good thing about kefir is that it's cheap, and you can use water or milk to grow them.

 

[adreno]

Kefir is not a bacteria but a colony of bacteria and some yeasts, and its composition changes around the world.
It helped with my gut issues too, but it had a limited time during which it helped with my ME symptoms.
I have felt the same with many other probiotics, they improve my symptoms for a while and then the effects are gone....so I think rotating the probiotics might be a better strategy
The good thing about kefir is that it's cheap, and you can use water or milk to grow them.

I meant what's so interesting about Fusicatenibacter? I know what kefir is.

 

[TigerLilea]

The good thing about kefir is that it's cheap, and you can use water or milk to grow them.

Just be sure to buy the correct kefir grains as milk and water kefir are two different things.

 

[Subtropical Island]

TBH I have not taken a lot of notice of this subject so far, not enough to have a considered opinion, but I am aware of general discussion.



Off hand I do not know how that is done. Does that involve antibiotics or other chemicals? Personally I would worry if taking out one strain will have collateral damage. Or are the methods developed enough to have that kind of precision?



Maybe I am still horrified by the concept. At present I have in my head something I read recently (I have no reference) that a woman took an FMT from her obese daughter, and the woman became obese after the event. An anecdote, but do we have enough evidence to be confident of avoiding unintended consequences?

My thoughts too.

I have done some thinking about FMT as a possible worth it thing to try myself but get stuck at the who should the don't be stage. Hubbie is young enough, fit, healthy, great family, long lived most relatives, few congenital conditions nor depression nor similar issues in the family (really, it's quite incredible), but he's lactose intolerant. And has occasional wind. And maybe not the perfect skin... it's a hard road to the perfect donor

 

[Subtropical Island]

I'm amazed at how little changes in my diet affect my illness. I have made major modifications of late, cut out all flour and sugar products. Effect on my symptoms: zero.

I suspect if my microbiome had anything to do with my illness, then it should be possible to influence my symptoms at least a bit by altering diet (even if only for the worse).

This is one of those things that makes me think ME is more than one single unitary disease. There appear to be the food-sensitive and the food-insensitive subtypes, and this would seem to me to suggest a major source of variability.

I agree with your first half but not with the last para. I don't think we can segment the population based on food sensitivities. I think it's a parallel discussion.
I also think that food sensitivities tend to confound the point that the microbiome might be affecting, even effecting, our symptoms. They are quite possibly entirely independent for many people, sensitivities might just make it easy to trigger a flare-up of some gut problem (I'm being non-specific intentionally) but not be relevant to others while the gut still played a part in all.
How much we can influence things and whether diet suggestions help in the absence of a specific sensitivity is definitely a question. One that is drowned on the internet at the moment but I like to imagine researchers plugging along with the the real questions in the background, ready to release their findings only when there's more to report.

 

[Ron]

Ubiome is offering free nose swab kits to see how your nose relates to your Microbiome. They say the kits are for those who have a stuffy nose or cold or flu symptoms. I'm not sure how long they will be offering this but I thought some would want to give it a shot.

https://shop.ubiome.com/pages/sniffle-ome

 

[RosieBee]

Ken Lassesen has a website dedicated to the microbiome and ME called cfsremission.

He has produced a huge amount of information on various probiotics, gut bacteria, diet, other disorders and on Ubiome and the other biotech companys that do similar microbiome analyses.

 

[Subtropical Island]

Ubiome is offering free nose swab kits to see how your nose relates to your Microbiome. They say the kits are for those who have a stuffy nose or cold or flu symptoms. I'm not sure how long they will be offering this but I thought some would want to give it a shot.

https://shop.ubiome.com/pages/sniffle-ome

As a student I took Bliss (developed by a local university at the time though I think it's been sold to a company now - not sure how budgeting might have affected its efficacy) to reduce sore throats. Worked really well. But funnily enough I still sometimes got a cold (achy, sniffly), just without the sore throat. I swore by it.
Involved gargling with a mouthwash and then sucking on a milk lozenge (yes they made a diary free one too) and then repeating a few times. I used it first when sick but then used it as a preventative as I got closer to exams.

I took saccharomyces boullardii (sp?) for a while when I first got sick (with ME/CFS) with a lot of diarrhoea and it seemed to help while taking it. But I'm less confident of this one.

Haven't found anything else to be helpful. I think we just don't know enough and it will be quite a while before we do: ecology is complex enough when we live in it on a macro scale and can look straight at it.
My current understanding is that eating well (variety and consistently as helpful gut bacteria probably need a stable environment is the best we actually know how to do. Sorry, punctuation button not working so will go rest as it's likely me not the button.

 

[Ravn]

Does anyone understand the “Bacterial Abilities” results, specifically the "phagosome" which for me has become significantly elevated since becoming ill. Before it was very low at 0.28x compared to all samples. The two tests since falling ill came in at 13.26x and 15.73x.

I actually contacted Ubiome but their answer was... let's put it politely: uninformative.

A google search doesn't help much, the explanations are above my scientific understanding. What they seem to say, extremely simplified, is that a phagosome is a (in this case human) cell that has eaten a bacterium. But that doesn't make sense in the Ubiome context of bacterial abilities. Maybe one bacterial cell can eat another bacterial cell?

Does anyone know? And what does an elevated phagosome bacterial function signify?

@sprague (tagging you because you said in another post you had looked at thousands of results)

 

[MaximilianKohler]

These tests have extremely limited value due to current extreme technical & knowledge limitations: https://old.reddit.com/r/HumanMicrobiome/wiki/index#wiki_testing.3A

I would not advise anyone to spend money on these tests.

Anything you would do after these tests are things you should have been doing before hand anyway. There is little predictive/prescriptive information that can be gleaned from these. Currently, companies that give dietary suggestions based on their results are wrong as often as they're right.

Diet is personalized and has to be found out by an elimination diet.

 

[lansbergen]

Does anyone understand the “Bacterial Abilities” results, specifically the "phagosome"

What do you not understand from this?

In cell biology, a phagosome is a vesicle formed around a particle engulfed by a phagocyte via phagocytosis. Professional phagocytes include macrophages, neutrophils, and dendritic cells (DCs).
https://en.wikipedia.org/wiki/Phagosome

 

[Ravn]

What do you not understand from this?

In cell biology, a phagosome is a vesicle formed around a particle engulfed by a phagocyte via phagocytosis. Professional phagocytes include macrophages, neutrophils, and dendritic cells (DCs).
https://en.wikipedia.org/wiki/Phagosome

In the Ubiome results phagosome is listed under 'bacterial abilities'. It's the 'bacterial abilities' bit I don't understand.

I understood bacteria to be the 'victims' of a phagocyte, that is they are the bit being engulfed. In which case the bacteria don't have any abilities at all.

Or have I misunderstood that altogether and bacteria can also function as phagocytes and thus create a phagosome?

I'm interested in this because my phagosome bacterial abilities have been rising and at the last test were 15 times those of the average Ubiome customer and wondering what that could mean.

 

[lansbergen]

I'm interested in this because my phagosome bacterial abilities have been rising and at the last test were 15 times those of the average Ubiome customer and wondering what that could mean.

Maybe they mean the toxin level in the phagosome is high.

Can you not asked them what it means?

 

[Ravn]

Maybe they mean the toxin level in the phagosome is high.

Can you not asked them what it means?

I did ask them. Twice. Stock answer both times (paraphrased): "Thank you so much for your interest. Keep an eye on our website, we're always putting new stuff on. Thank you again for your interest". Well, definitely nothing new on phagosomes since first asking in 2017.

 

[shak8]

I am a participant in a large, on-going cohort of nurses being studied by Harvard School of Public Health. It's called The Nurses Health Study II.
I've been asked to submit my stool and the same day a saliva test.

Questionnaires ask about diet (fermented, yogurts, whole grains, etc. etc) in the past month. These researchers have generally in the past look at diet and its effects on health/illness.

They do offer, it appears, their databases for researchers (for a smallish fee, and can be accessed by an undergraduate or above).

I think they say that the illnesses (for instance, ME or fibro) purported in the database have not been diagnosed by a physician, rather that any illness is self-reported by the nurse-participant.

This limits some of the usefulness of the database. But perhaps worth looking into in the future, regarding their microbiome results.

 

[Sly Saint]

Ken Lassesen has a website dedicated to the microbiome and ME called cfsremission.

CFS Remission | Striving for true remission of CFS, chronic Lyme, FM, IBS etc

I Promote No Protocol, I promote evidence based treatment.
As a statistician, I recognized that ME/CFS consists of many, many, many, different subsets. To treat successfully means getting information. I know that my own ME/CFS was usually triggered by the interaction of an inherited coagulation defect (Prothrombin G20210A a.k.a. Factor II Mutation) interacting with stress and a microbiome that goes bad with stress. What works for me may not work for another with ME/CFS.

My Unified Model of ME/CFS and Long COVID
I have a hypothesis on the causes of ME/CFS and a treatment approach (not a protocol) that is likely to reduce the severity of ME/CFS. Some may go into remission.

The Cause of ME/CFS
The cause is rather simple: anything that causes an alteration of the microbiome. This may be food poisoning , an infection (COVID, Flu, Lyme, Epstein-Barr virus), a vaccination, a prescription or over the counter drug, pesticides, bad diet. This alteration and happenstance cascade into a microbiome dysfunction that mucks up your system. Too much of some metabolites /chemicals are being produced, too little of others, the chemicals used by the body are “hacked” and the body manifests a huge variety of symptoms.