Great discussion guys Appreciate all the feedback.
Garzie - The link you provided was interesting and definitely helped me understand better how MMC dysfunction keeps archaea out of the SI. It's well known that it's a motility issue at its root, but the physical descript
ion of how it works was very helpful, especially since it kind of illustrates why Linzess may not work (it's getting the bowels moving, yes, but its not necessarily normal MMC activity that would move archaea back out of the SI). Unfortunately the author comes back to antimicrobials, which I cant handle...it's the catch-22 I keep running into - neuropathy makes treating dysbiosis nearly impossible. Your info on the villi and the immune system was also helpful. Again, helps put a bit more of a physical descript
ion on a phenomenon I've noticed in myself, the flaring of my neuropathy w/ gut disturbances, and it sounds like you've noticed as well. Also interesting points on how this inflammation in the gut lining leads to stomach issues in other chronic illnesses.
Quin - great to hear you actually can beat this when motility is restored
Astro - very helpful story as well. Definitely found it interesting how you point out that the meat binge immediately precipitated the SIBO. Not that that was the cause, but just kind of illustrates why a lot of people fail to control SIBO w/ carnivore and low carb. Your points on very low-carb not being great for everyone are well taken. I used to take it as a fact that very low carb was superior, im kind of in your camp now where I prefer a balanced, lower-processed, lower carb diet, but not crazy. Just a common sense one. I'm almost your size exactly, 5'11.5", about
170 lbs now. On keto I got down to 158, which was way too low.
So basically, to summarize what I'm hearing from everyone: 1.) chronic illness leads to inflammation which almost always disturbs the gut.
2.) Sometimes if its mild, you can mess around with diet changes or things like cleanses, and it rights itself on its own
3.) If there's a motility issue at its root, that needs to be addressed or it will never correct permanently
Coming into this I knew all 3 points, but the discussion around point 2 was particularly helpful and insightful, as it helped me better understand and verbalize the mechanics in my head on why some people are able to get out of this loop so easily, and some aren't. Garzie's points on how readjustments coming off extreme diets are easy for a healthy person, and maybe harder for a sick person, were also helpful, as I had started to question my own dieting in 2021/2022. Appreciate the insights on all of this.
As a side note, we never answered why larazotide acetate seems to normalize my stools. No one seems interested in this anecdote but me. Maybe because I experienced it, and it was so intense and undeniable. If I could tolerate it I'd use it daily. But there is some mechanism by which leaky junctions slow motility, and I do think that could be part of the missing puzzle. If I could buy the patent cheaply, and fund a trial for IBS to get more than 1 datapoint, I would.
Next steps:So where does that leave us.....well, I'm still not certain what I need to do. Tell me if my reasoning here on next steps, at this point, makes sense:
I've assumed I had a motility issue as well. But thats not an easy fix. If it was a food sensitivity causing leaky gut like I was starting to get curious about
, based on my larazotide experiments, sure....but if the neuropathy is causing a motility issue, well I'm not sure yet how to make it go away; believe me, I want that and I've tried. Linzess, while keeping the food moving and the severe pain at bay, is not a fix for a properly functioning MMC, as we have discussed. The next option would be Motegrity, which stimulates the brain to make the MMC move, does get the MMC moving in at least a semi-natural way. I will try it next, but it does have side effects and I may not be able to handle it.
But...I do think I need to eradicate the archaea. My plan had been, if I cant fix my neuropathy or whatever is causing my motility issue, then I need to eradicate the archaea. That DOES fix things temporarily, until the MMC dysfunction causes a relapse. But in the mean time, I could clean up my diet again, and hopefully the motility agents like Motegrity could help keep it at bay for long periods, maybe even indefinitely.
So how to eradicate the archaea? Flagyl is a no-go. I've seen too many people develop neurological issues on it, and I'm ultra vulnerable. Neomycin, I'm not risking that. Herbs cause bad flares and work extremely slowly on archaea, we know I cant handle that for several months.
But I did find this paper on what compounds archaea are vulnerable too.
https://www.sciencedirect.com/science/article/pii/s1198743x14610600"Archaea are, however, susceptible to the protein synthesis inhibitor fusidic acid and imidazole derivatives"Metronidazole is an imidazole derivative, so that checks out. There is another imidazole derivative that I had used before, in 2021, when I thought I had blasto. Tinidazole. I did not flare from it. There are also a few people who I've been able to find w/ methane sibo who have responded to it and believe it is active against archaea, based on their experience. So that likely will be what I try next. I'm not sure if it will work, but since I seem to tolerate it, why not. Thoughts?
Other imidazole derivs that are worth considering are secnidazole, and possibly ketoconazole (as it may help if there's a fungal component too, it's easy to get in pill form and relatively well tolerated, just have to watch liver). I understand that none of these may have activity against archaea, but it's also possible they do. It's likely that no one has looked into it before; archaea just dont seem to be on anyone's radar for some GD reason.
I'm also not familiar with fusidic acid, anyone else know anything about
it? Safe? Tolerable?
So I will try switching to motegrity for motility, and will try to get some tindimax I think, and will continue to try to remove gluten/dairy for now in case those are intolerances slowing motilty.
Other ideas:
*The colon prep idea will have to be tabled unless I can get a prescript
ion from a dr (and I would want to do at least a weeks worth, as my 2 days colon prep wasnt enough as we discussed, so that's probably not gonna happen), my source overseas does not have access to it unfortunately.
*Elemental diet. It seems a few people have been able to get their levels down doing this, although relapse rates are high.
Thoughts on tindimax? Or that game plan? or other ideas?
Finally, one other thought has come to mind. Immediately after developing this constipation this summer, I developed "fungal acne" on my forehead that comes and goes when its humid. I then had ringworm on my thigh which I got rid of w/ a topical. A couple months later I had some fungal thing on my ear. This past 2 weeks I developed what appears to be fungal follculitis.
I'm not sure if it's the same fungus which has caused all 4. I know it's usually candida which affects the GI tract and its not candida that usually causes fungal folliculitis...or maybe it is here.
I assume this is likely a downstream affect of the messed up microbiome, and not the cause, but to what extent would an oral antifungal help this?
Thanks again! Sorry for making this all about
me, but maybe others can benefit from the discussion as well. And happy new year!
Post Edited (dcd2103) : 1/2/2025 8:22:25 AM (GMT-5)