more gut thoughts

I use a swedish brand atm called biosalma Mage....

potsnpans said...

Dmitry said...
actually you do not want remission from CFS if you still have an active infection, since during CFS the max killing happens

Wouldn't remission = no active infection?

If you disagree with the approach of the cfsremission guy I'd be interested in hearing more about why. I'm starting to identify more as mild sufferer of cfs rather than Lyme specifically, and not sure if I have viral issues, mito damage, or what...

i was intrigued by Dimitry's comments also ....

i have done a fair bit of reading into and had some correspondence with the cfsremission guy - but in the end i formed the opinion that - while there is some interesting discussion - cause and effect is really not demonstrated to me. its seems equally likely that the gut is inflamed and the immune system is disturbed - and that is causing perturbations in the microbiome.

not only that but my own experience with testing at two of the best known stool PCR labs highlighted that they are not even anywhere close to agreeing with each others results - not even close - in fact closer to being entirely opposite. so which lab are we to believe - and how useful is all the data gathering and projections if the basic measurements of what's inside us are false.

my gut feeling - if you will pardon the pun - is that what he is trying to measure and influence (microbiome disturbance) - is an effect not a root cause of illness in lyme and most likley CFS.
or perhaps its fairer to say its one of the downstream effects in what is one of many vicious circles in our biology - one that may well be adding to symptoms and helping perpetuate illness - but is not the root cause.

i also think its entirely possible to have lyme and CFS - or have CFS caused by a borrelia infection.
in fact i think its quite common. in the UK for instance the most common diagnosis a lyme positive patient who does not get a positive C6 ELISA test is CFS - then they will have no further infectious disease investigations and will be offered group CBT and maybe physiotherapy. nothing further (This is exactly what happened to both my partner and I).

dcd2103 said...
Ah, the chicken and the egg again! This really bothers me as it’s so confusing.

Garzie I’m not sure you’re right, but I’m also not sure you’re wrong.

There are plenty of instances where an insult to the microbiome triggers a disease state. Happens all the time. You see a kid get a stomach infection and suddenly he’s never the same again. Similarly, you see people get a neurological disease or lyme and their microbiome goes.

I just think the gut-brain axis is so tightly interconnected and there’s so much cross-talk, that when one goes so does the other. The causality can run in either direction. And if either goes so does the immune system. It’s been shown that the vagus nerve is a master switch of inflammation through the cholinergic system.

That’s why you see people take the cfsremissuon guy and try to tackle the gut. Others take the nervous system approach and try to calm the autonomics, thereby fixing the gut and immune system. Others try to attack the immune system through immune modulating herbs and removing infections. Very hard to find that homeostasis once it’s gone, but I hope it can be done

yeah, i'm pretty close to being on the same line as you here dcd.
i do believe its a loop - so causality and effects can run both ways.

in my case and my partners - and presumably for a lot of people here who have confirmed lyme disease - via well respected test lab and a very good symptoms match, response to abx etc - there is pretty clear evidence that infection was the trigger - or at least - a trigger.

Lyme disease, Bart and others are pretty good candidates for the triggers.
not that this is proof in itself - we may never have that - but there are certainly many indicators that fit very well
-they infect the gut tissues preferentially
-they cause neuropathies
-they interfere with the immune system dramatically - in many ways
-they cause auto-immune disease
-they can be proven to persist long term in the body despite abx

i don't think lyme or bart or any other co-infection are the only triggers that can do this though.
as you point out and the SIBO guy has demonstrated - food poisoning can cause similar.

gut viruses - of which there are many - can also - see the Pheonix Rising CFS guy for more on that.

i think bioaccumulating toxins of various sorts can be a trigger also - mold, heavy metals, man made organic chemicals like pesticides, etc etc

lifestyle choices also put our systems under additional stress and seem to play a part in all chronic disease.
in general - our immune systems are breaking down in the western world - as attested to the exponential rise of auto-immune diseases ( 4-10% year on year acc to many studies - that means its prevalence is doubling each decade! ) - this is way too fast to be a genetic driven issue - can only be environment.

so any or all of the above in some combination can i think be a trigger
and it keeps bringing us back to - "OK, so which of these factors - in my particular case - is the key factor that needs to be addressed to reverse this"
so the million dollar question again!!

i think this concept does help explain why the path back to health seems to be so different for each individual person with Lyme (or CFS or fibromyalgia or Neuropathy - or insert any chronic disease in the developed world here, for that matter)

the other relevant part for many here - is also - if we assume for a moment infection was/is THE trigger - or at least a big part of it for any particular individual - and we manage to remove that infection. Do the symptoms then resolve on their own over time. or do they remain? or somewhere in between.?

i think the answer is - it depends.
i think we see examples of the tremendous healing potential of the human body in some cases - in almost every disease state - and in others we see cases where many things are tried and very little seems to help.
if the above concept of multiple insults all playing a part is correct - perhaps that is what's going on.

i think common sense tells us that if a person is severely chronically ill, and continues to eat crap, not sleep, abuse their body with alcohol and tobacco and run a high stress lifestyle - few of us would expect the best outcome for them.
on the other hand - if someone is chronically ill, and does their best to eat a clean varied healthy diet, cuts out obvious harmful stuff, gets good sleep, takes steps to manage their stress levels and exercises as far as they are able - i think most here would say - of the two i think the later one has the best chance.

so if the principle is established - it seems that getting the formula right for ourselves is one of the main things we can do to give our bodies the best possible chance - and this search is exactly the one you and i find ourselves on.

its obviously just v tricky as no-one yet knows with certainly how to unpick the puzzle for each individual. at least beyond the basics of diet , lifestyle, sleep, exercise, stress management - and even there there is variation in what works from person to person - as well as disagreement among the scientific communities.

the other fly in the ointment - and relevant to the population here, in executing this approach - is of course the lack of tools to detect infection - and equally important to demonstrate its absence - eg after treatment.

it seems to be under recognised fact that there is no Lyme test available today that can prove absence of borrelia - and even the best Bart tests are shown to be no better than 50% sensitive to start with.
so there is simply no way to prove that infection is gone - in fact Lyme has been found at autopsy in someone who was well documented to have been on multiple drug lyme abx combinations for 16years - so in the absence of definitive lab tests - we all have to kind of reason our way through based on, signs, symptoms and hunches.

its very murky, as these diseases themselves can relapse and remit as one of their well known inherent features. sometimes all by themselves or unknown reasons of often precipitated by life events, stress, trauma, acute illness etc.

i don't think infection is the be-all-and end-all though - i think as many here who have made recoveries have described - other things can be critical game changers for a particular individual - and infection could be some way down the list of causes/triggers for some. i personally think the immune system itself is at least as important as infection as a potential lever to pull on - maybe more so.

i guess we just have to keep attacking the problem - while working on the basics - try to keep zeroing in on the problem logically with what evidence and tools we have - and keep trying things - after all you have to be in it to win it!

sending you massive support for your continued efforts and wishing you every success in your trials

i am due to take first dose of ivermectin tomorrow - probably a half or 1/4 dose to start with and will report back a few days after that - ( on the original thread where we were discussing it if i can find it )

I used Bravo Probiotic Suppository but only one container with 12 of them. Not because of cost, but because I really hated using a suppository.

From my practioner at the time: "I like Megasporin and Ther Biotic Complete very much but it would be good to use Bravo Yoghurt for two to three months as it is more than a broad spectrum probiotic, it also has lactoferrin, immunoglobulins and most importantly it has GcMAF; an endogenous protein which is a major part of our immune defence. GcMAF is undermined by bacteria and viruses. So I suggest finishing Megasporin and then replacing it with Bravo Yoghurt. However I think you can return to these probiotics in 3 months’ time once you have kick-started your immune system with Bravo Yoghurt."
https://www.bravo-probiotic-yogurt.com/product/bravo-probiotic-suppository

Yes, as I wrote I used one container with 12 of them. Same as I linked.

In addition to Mutaflor, Ken Lassesen (cfsremission guy) also likes Symbioflor and Miyarisan.

My wife used vsl#3 for IBS and it seemed to help whenever she was on it, but it didn't have any lasting benefit.

Garzie: I'm curious to try one of the stool test labs myself. Generally my gut behaves normally but curious to learn if abundance of lacto strains are a problem for me. If I do it I will definitely take into account what you've said. Hoping I run my results through the tool and it correlates my symptoms correctly.. then I might be able to give a little bit of credibility to the whole process.

I have zero doubt that my problems started with Lyme btw, and I figure there will always be borrelia b.. just less certain it is still the main driver 5 years later. I think the ambiguity of cfs now suits me better ..and PEM is the only thing left for me to fix really.

One of the labs you used was the now defunct ubiome, right? What was the other? Is it possible that the discrepancy was not the fault of the labs but rather variance from sample to sample?

Dcd: which lab(s) did you use? Any of the ones listed here?

https://microbiomeprescription.wordpress.com/your-microbiome-is-unique-to-you/16s-microbiome-tests/16s-providers/

Pots - the two labs i used were Diagnostics Solutions GI-Maps and Ubiome

- it was not so much that there were a few discrepancies between the results that you could explain or account for by drift in a few species over time - but the two sets or results were diametrically opposed - where one said very low counts of genus xxxx - the other said very high counts of the same genus.

this happened across the board at genus level - and even at phyla level - and was true of both my sample and my partners - this simply cannot be explained by anything at the patient end.

you can read about it here if you would like to see the specifics see my post half way down this page
https://forums.phoenixrising.me/threads/blastocystis-does-anyone-know-of-a-pcr-based-test-that-is-available.61265/page-2



the GI map test looks for parasites via PCR and also has some inflammation markers and bacterial resistance gene tests thrown in - so its attempts to be an overall view of the gut environment - but its sequencing of the microbiome is somewhat limited.

ubiome was purely 16s sequencing of the stool microbiome -

the microbiome is a pretty deep subject - and there as quite a lot of issues to be navigated -
eg what comes out in the stool is not very representative of what is in all location in the gut - esp the small intestine - which is the bit which is most in contact with the immune system - and the aspirate method is the only one which gives a picture of that.
of the microbiome stool tests there are important differences in methodology - some have you put a bit of poop in a sealed tube and send it off to a lab - but in those cases ( the American gut project was like this ) biological processes continue after you take the sample and the stool and its microbiome change over time exposed to air etc what i liked about both GI-MAP and Ubiome is they fis the biological processes in you sample with a special preservative - so that it does not change while in transit to the lab.
there are other differences between labs also
-there is the different 16s reference databases being used by different labs issue also
-differences in the methodology - both chemical and software -algorithms they use to piece together all the tiny bits of DNA they shatter then multiply up and try to work out what it was originally saying before it was broken into millions of pieces.
-differences in the chip they use to make the process affordable
-and on and on

then when you consider thatg the papers published in the research journals had the same differences in techniques at play when they measured the impacts of foods, abx, supplements, herbs on the microbiome - you may start to see why i am a little less than convinced of the value of this approach at presents -

although its a laudable effort and i do hope we eventually fathom out what is a good microbiome and how to get one - or if its off - how to restore it.

if you are planning on using Ken Lassesen's site i would just use whichever he feels is more compatible with his tools. i don't think GI-Map will be because it doesn't give a complete microbiome tree.

you may also be interested in D'adamos site where he was attempting to produce analytical tools with similar objectives - i think Larssesen made use of some of his data and tools in the past

Post Edited (Garzie) : 5/12/2021 12:33:40 PM (GMT-6)

There are some really knowledgeable people on this thread. Everyone should probably reread what they wrote.

Yeah dcd I was putzing around on his site when I first learned of it.