Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

[Treeman]

come back here after years and people are still running in the same circles, chasing their tails. Same goes for every patient community of most chronic conditions.

That's because we're all still ill and wanting to recover, improve the quality of our lives and live instead of exist. Don't you?

 

[EddieB]

I have actually crawled through a lot of your wiki and your related site, but nothing there brings it together.

I would completely agree.
The trouble with studies, is that if you search long enough, you will find that the majority will contradict each other at some point. Hence the word, studies. They are theories based on science,,but are far from perfect in real world application.

Antidepressants are a perfect example of this..You can find study after study showing gut health improvements, keep looking and you’ll find studies on how they destroy it.

From my own personal experience, I can say that my biggest me/cfs remissions/ improvements, though temporary, were had by shifts in gut flora/ biome. Totally by accident, things like colonoscopy preps, antibiotics, etc.
And unfortunately thus far, not reproducible. But do I believe that is where a lasting improvement for myself, as well as others, may be found.

 

[Rufous McKinney]

I think you forget or ignore that one of the conditions this complex puts on people is the reduction, sometimes drastic, to process information.

You are correct- An important point around here.

It helps if there is a thread with alot of background, to just remind folks of that.

I understand feeling frustrated when folks ignore posts as posting good thorough info is taxing for all of us.

I think we are all doing our best, all things considered.

 

[Rufous McKinney]

And unfortunately thus far, not reproducible. But do I believe that is where a lasting improvement for myself, as well as others, may be found.

I"ve been trying a random supplement I ordered by accident, and ONE capsule directly seems to improve my version of IBS-d (which the "d" isn't really accurate, either).

SIBO- this pill seems to improve SIBO dramatically. I keep repeating that around here, because I'd love to encourage some other folks to try it.

Yet nobody much seems interested in trying it. From what I can tell. I did not post a thread announcing its a cure. But its tied to some work Remission Biome are doing.

Something triggered acute gastroperesis event, and the SIBO got really intensely bad. Sick for a month.

this one supplement seems to be correcting it, so I plod on.

n=1

 

[Booble]

Personally I think the amount of experimentation on oneself that people do here is misguided. Unless you are a pharmacologist or whatever kind of scientist that has been educated on all the intricacies of how these things work and why dosages are what they are and why various active and inactive ingredients are used, etc, that you are at best wasting your time and at worst hurting yourself.
I don't think you are going to come up with a magic solution.
Hopefully I'm wrong!

 

[hapl808]

Maybe some cognitive deficits on my end are contributing to the situation too, but I haven’t identified it. Nor have I identified a solution to this issue, other than to improve people's function somehow...

I think we've pinpointed contributing factors. Your approach is telling people if they look at your links…then something something? (I'm not sure if you're promising understanding, a cure, a treatment, or spiritual enlightenment.)

This is a shame, as I'm actually quite interested in this topic. Rather than throw long lists of links at us, why not provide a cogent, succinct argument we can digest here?

This. I literally don't know if you're saying FMT is already the answer, or that we need to do something else, or it's some combo, or research, or ?

This is a very simple yes/not yes question, yet you avoided answering it amidst the complaining. I must take that as 'not yes,' unless you state otherwise. If you don't believe in your product, why should we? If the answer to the question is yes, please provide details. Thank you.

And this.

I guess I could've just reposted what @almost wrote because it summed up everything.

You're not the first person who spams links and says, "Can't you read? I've figured it all out." Meanwhile we ask for clear instructions and evidence and you post more vague links and criticisms.

I'm not an immunologist. I'm not a rheumatologist. I'm not a PhD researcher in biology. What are you trying to say?

I have discussed the reasons for this at length, and could share educational links, as I did previously, but it appears to be a complete waste of time since the vast majority of people continue to demonstrate a complete lack of ability to learn from the scientific material they are presented with.

After wasting time just with just your first links, here are some of your amazing cited studies:

These common mechanisms suggest that ME/CFS is best studied in concert with other chronic conditions tied to microbiome dysbiosis, persistent infection and adverse environmental exposure. These include fibromyalgia and Gulf War Syndrome, but also conditions like Post-Ebola Syndrome in which severe chronic symptoms develop after infection with an “acute” infectious agent that is able to persist in latent forms.

While studies have to date failed to identify a distinct microbial signature that establishes a pathogenic role of the intestinal microbiota in ME/CFS, a cycle of chronic intestinal dysfunction and instability of the microbiota certainly characterizes a subset of patients with ME/CFS. Pursuing the role of intestinal microbial dysbiosis in the pathophysiology of ME/CFS may well establish how immunological dysregulation manifests in its core symptoms. The use of next-generation sequencing techniques and metagenomic tools may identify predictors of disease relapse and chronicity [175], with the technology continually being tailored for use on viral ecosystems [176,177]. Analogous to IBD studies, microbiota characterization may elucidate more distinct subpopulations within current ME/CFS classifications. Ultimately, observing any association between microbial phylogeny and the ME/CFS disease phenotype can highlight the impact of the microbial community on human health, and has the potential to identify disease biomarkers and influence therapeutics, providing much-needed approaches in preventing and managing a disease in need of confronting.

Many interventions can improve gut barrier integrity in human and animal studies (Table 2). Arguably, one of the main strategies to improve health is the reintroduction of dietary fiber in the Western diet [103]. For example, adding 10 g of fiber per day for 6 months reduced serum zonulin, insulin resistance, and serum liver enzymes and improved fatty liver score in non-alcoholic fatty liver disease subjects [104].

We've all read thousands of these studies. A Zotero wiki is not an actionable and falsifiable hypothesis.

If you have one, I'd love to hear it.

If you just want to criticize other people without providing value, I guess that's fine, too.

 

[hapl808]

Personally I think the amount of experimentation on oneself that people do here is misguided.

Felt the same when I was mild and even moderate. Once I became more severe and unable to work, to socialize, to stand without assistance - and doctors made it worse. Then some experimentation seemed more worthwhile - that's when I joined up here.

To each their own, because everyone's experiences and symptoms are drastically different. So until you've walked a mile and all that (or stood up I guess).

 

[Booble]

Felt the same when I was mild and even moderate. Once I became more severe and unable to work, to socialize, to stand without assistance - and doctors made it worse. Then some experimentation seemed more worthwhile - that's when I joined up here.

To each their own, because everyone's experiences and symptoms are drastically different. So until you've walked a mile and all that (or stood up I guess).

I 100% understand the desperation to try anything to help yourself.
I'm just saying that I think it's not a good idea, despite the very understandable feeling that it's worth a try.
And I don't think it's going to amount to a solution.
Though I guess it's a good distraction and provides some hope? I know it's hard to do nothing.
Probably I'm just too wimpy. I only try the simple things. (And luckily have had some success with them.)

 

[hapl808]

I'm just saying that I think it's not a good idea, despite the very understandable feeling that it's worth a try.
And I don't think it's going to amount to a solution.

Yep, understand and just disagree. I think it comes down to a calculation of what's at risk - which is different for each person.

I doubt it'll be a solution - but I've found many things that have made at least minor improvements. Quercetin, NAC, magnesium, allicin, antibiotics, slippery elm, and many others. All of that was experimentation?

There are no approved treatments for ME/CFS, beyond arguably the potentially permanently damaging GET (and CBT). So without experimentation, I'm not sure what's the point to a forum like this?

Now of course we all have different thresholds of what we consider the 'appropriate' amount of experimentation. Again, that's different for everyone. My father would never touch magnesium, but some here take it. Others are putting shellac on capsules. @Hip knows a lot more about pharmacology than many pharmacologists. His threshold for experimentation is much higher than mine.

To each their own.

 

[Rufous McKinney]

Hopefully I'm wrong!

I do very little experimenting. Figures, I have degrees in biology.

But I believe in accidents, and sychronicities, and signs pointing that I should pay attention to.

Often I am not paying enough attention (especially lately)

I got a random phone call from Florida last July. A salesman. I figured I'll blame my husband for giving this person our phone number. I proceeded to "get sold" some supplements.

When Florida said: we grow Acai here, in Florida. I decided to try the supplements, spent far too much money and then: DID NOT TAKe THEM for several months. I swore never to answer my cell phone again.

(I had been consuming frozen Acai, as part of a beef up my nutrition, program) Big carbon footprint, bummer for me. Florida is closer, than Brazil.

Months passed. and I decided to take the supplement (occasionally). Well, it's the best FIX in one single pill I have yet to run into. I am impressed as heck by this ACCIDENT. (and they do not grow Acai in Florida, the salesman was wrong)

I've now got a year supply shipped in.

 

[Rufous McKinney]

shellac

WOW.......I thought it was from a plant (maybe I am thinking of varnish)

WOW x 2

Shellac is a resin secreted by the female lac bug on trees in the forests of India and Thailand. Chemically, it is mainly composed of aleuritic acid, jalaric acid, shellolic acid, and other natural waxes.


I'm now voting that we should try a cure involving Shellac.

 

[Rufous McKinney]

Shellac is a resin

basically, the bug sucks the plant's juices with its sucking mouth parts.

so this resin is plant-derived, via the bug. Wonder if the bug changes it chemistry?

Ever heard of the tiny bugs which get on eucalyptus? The sweet sticky secretions which the bug hides underneath, are consumed by aboriginals.

they are called Lurps.

so we have Lacs and Lurps

 

[Booble]

To each their own.

Right on!
I usually don't say anything when my jaw is dropping to the floor of some of the experimentation.

 

[cfs since 1998]

Right on!
I usually don't say anything when my jaw is dropping to the floor of some of the experimentation.

We have waited decades for science and the healthcare industry to help us and we still don't have any answers. Anything, including self-experimentation, is better than accepting a fate of slow, gradual decline ending in death.

 

[Wishful]

The "Science for ME" forum was one of the worst in this regard. It was overwhelmingly dominated by anti-science behaviors.

Really? I find that site filled with anti-bad-science discussion: pointing out flaws in studies (especially psychological ones). I can't recall any anti-good-science arguments.

 

[Wishful]

Personally I think the amount of experimentation on oneself that people do here is misguided.

I haven't done many experiments of the "I read that <whatever> does this, so I should take this dosage along with these cofactors" type. My experiments are mostly testing whether a factor I suspected of having an effect on my ME really was having a real effect, by trying it several times and trying to hold other factors constant. Most of my actual successes were pure accidents. I wouldn't have predicted that cumin or iodine would affect my ME symptoms; I just noticed a correlation and tested it.

FWIW, I'm not presently taking or experimenting with anything for my ME. I'm waiting for the next happy accident.

 

[Wishful]

Regarding shellac, I wanted to point out that most prepared shellacs (what you'd find at a hardware or paint store) uses methanol as the solvent. It evaporates, but I suppose some of this toxic solvent might penetrate the capsule and remain in the contents. Another solvent is denatured alcohol, which is ethanol with some toxic substances to give it a bad taste. I read that liquor stores do sell nearly-pure alcohol (Everclear is one brand), so that would be safest.

 

[Booble]

Regarding shellac, I wanted to point out that most prepared shellacs (what you'd find at a hardware or paint store) uses methanol as the solvent. It evaporates, but I suppose some of this toxic solvent might penetrate the capsule and remain in the contents. Another solvent is denatured alcohol, which is ethanol with some toxic substances to give it a bad taste. I read that liquor stores do sell nearly-pure alcohol (Everclear is one brand), so that would be safest.

By shellac do people mean actual shellac?
People are actually swallowing shellac? (Or putting shellac up their bums?)

 

[almost]

By shellac do people mean actual shellac?

Here

 

[Booble]

Here

Ooooh....confectioner's glaze. Got it. Thanks.
I only know the term shellac as in the stuff you get from the hardware store to coat things.