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Treatment for SIBO, leaky gut and general gut dysbiosis

Mrparadise

Senior Member
Messages
119
I did a lot of testing so far regarding my CFS and nothing turned out to be wrong with me (on the surface at least). What they did find though is, that I have a dysbiosis in the gut (microbiome), SIBO and a leaky gut. With that information provided by the doctors, I decided to stick to this treatment-sub-forum for now as I think that it could help me the most to ease my symptoms.

Now my questions would be the followings:

How would you suggest to treat the mentioned conditions? Did anybody with these conditions experience major relieve of the CFS symptoms? I've already tried rifixamin (antibiotic mainly used for traveller's diarrhea and SIBO) but with no success. Is there any treatment protocols for this ? I've heared that the keto-diet could be of use here as well.

I am very thankful for everyone's suggestions!
 
Messages
72
My experience: antibiotics works best, doesn't fix the leaky gut, but get rid of IBS symptoms for several weeks, months if you are lucky, then you have to redo the treatment. I use Metronidazole + Spiramycin. Effective prokinetic drugs aren't available where I live, but I bought Prucalopride from abroad once and they work like magic for getting rid of IBS-C, as long as you are taking them.
 

Mrparadise

Senior Member
Messages
119
Many thanks for your answer! May I ask you if only the IBS-symptoms eased with the antibiotics or did your CFS in general improve after taking these medications ?
 
Messages
72
The first time my CFS improved so much I was able to get back to work for about two weeks (programmer).. but I couldn't replicate that experience since. Now I only experience long lasting IBS-symptoms improvements, which is still very useful and makes life less hellish.
 

Mrparadise

Senior Member
Messages
119
Thats actually what I expected :/ But I guess its still worth doing for the IBS-symptoms. Many thanks again for sharing your experience!
 
Messages
48
The best I can recommend its to not do this alone, get an specialized doctor that can test you. Dysbiosis is very complex in general. going out with antibiotics, even rifaximin could be a problem, because maybe you aren´t killing the right bacteria, and they adquire restitant capacity for rifaximin, you see, that would be a problem.

Test for SIBO,SIFO and parasytes. a GI-MAP, an urine acid test and a lactulose test should help. and of course, a good doctor that can interpret the exams and give you a good treatment.
 

Mrparadise

Senior Member
Messages
119
Many thanks for your post Shen but unfortunately there is no good doctor in Switzerland for this kind of issue (at least not to my knowledge). I wish that Ken Lassesen was a medical doctor...
 

kangaSue

Senior Member
Messages
1,859
Location
Brisbane, Australia
A great money spinner for clinicians on the perceived fear that these are pathologial conditions but no one has yet proved conclusively that a 'leaky gut' and SIBO are actually pathological conditions, and breath testing is prone to producing false results among its short comings.
A simple bowel cleanse such as a colonoscopy prep can remove a bacterial overgrowth, but doing so won't necessarily improve your GI symptoms.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790068/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7366247/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2852716/
https://chriskresser.com/unanswered-questions-about-sibo/
 

Mrparadise

Senior Member
Messages
119
Many thanks for replying @kangaSue! So would you say that a lot of people could have these conditions but they are maybe not even relevant regarding CFS-symptoms? I know that the "gut-approach" helped a lot of people to ease their symptoms in general and I think that Ken Lassesen who specialized in the human microbiome is on a pretty good track and it does make sense. But in the end I dont know what I should try to do right now. Maybe stick to a ketogenic diet or try some antibiotics followed by some probiotics.

If anyone got better trying to improve GI-symptoms (regarding CFS-symptoms in general) please tell me.

Many thanks in advance!
 

kangaSue

Senior Member
Messages
1,859
Location
Brisbane, Australia
So would you say that a lot of people could have these conditions but they are maybe not even relevant regarding CFS-symptoms?
Going on the opinion of experts better qualified than me to make such claims (such as some of the authors of the articles I referenced above), my take on SIBO is that if you don't get good and long lasting improvement in GI symptoms from a single course of antibiotics or a bowel purge, chances are you're dealing with a deeper issue that's likely something to with autonomic dysfunction causing GI dysmotility, so you'll be stuck with ongoing problems until such time as the autonomic issue is resolved, if that is actually possible to achieve. So it's more an autonomic related thing and ME/CFS is just one of many conditions that involves an element of autonomic dysfunction.

It's always bandied about that the small intestine normally has relatively few bacteria due to rapid flow of content and slowed motility leads to developing a proliferattion of "bad bacteria" to cause SIBO, but if that's the case, then why doesn't doing Fecal Microbiome Transplant using the 'top down' method (NJ tube into the small bowel or swallowed frozen capsules) just give every recipient a dose of SIBO and add to the patient's woes?
 

Mrparadise

Senior Member
Messages
119
So does that mean that fixing the autonomic dysfunction should be the goal here? But I guess there is no drug available to fix autonomic dyfunctions, or is there one to try out?
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
It's always bandied about that the small intestine normally has relatively few bacteria due to rapid flow of content and slowed motility leads to developing a proliferattion of "bad bacteria" to cause SIBO, but if that's the case, then why doesn't doing Fecal Microbiome Transplant using the 'top down' method (NJ tube into the small bowel or swallowed frozen capsules) just give every recipient a dose of SIBO and add to the patient's woes?

For some reason, I'm having trouble following- do we know that Fecal Microbiome Transplants (FMT) don't have short-term SIBO-like effects in some people who didn't previously have SIBO? I haven't been following the FMT literature...

But I guess there is no drug available to fix autonomic dyfunctions, or is there one to try out?

For me, personally, creatine is what seemed to resolve my SIBO-like symptoms, which I feel may have been due to dysautonomia, but your experience may vary, of course:
https://forums.phoenixrising.me/threads/creatine-helped-maybe-but.75248/#post-2182495
 

kangaSue

Senior Member
Messages
1,859
Location
Brisbane, Australia
So does that mean that fixing the autonomic dysfunction should be the goal here?
Unfortunately, that's easier said than done, but I'd try one of the known methods for treating SIBO first up just in case you're lucky and have a bacterial overgrowth responsive to such a measure.
But I guess there is no drug available to fix autonomic dyfunctions, or is there one to try out?
It really depends on the cause of autonomic dysfunction, and whether it's idiopathic or autoimmune related. There's a number of different motility drugs for hastening stomach emptying or intestinal transit times though which may be of good benefit either way. Vagus nerve dysfunction is frequently involved so things that stimulate vagus nerve activity can be tried.
For some reason, I'm having trouble following- do we know that Fecal Microbiome Transplants (FMT) don't have short-term SIBO-like effects in some people who didn't previously have SIBO? I haven't been following the FMT literature...
Don't think there's been much study into this. I can tell you from personal experience that I tested negative for SIBO one week after doing 20 top down fecal transplants over 6 weeks. I was negative for SIBO about 3 months prior to doing FMT but tried a couple of courses of antibiotics anyway as my GI said I should presume it to be SIBO anyway but the antibiotics did little for the SIBO-like symptoms.

I tried FMT because I was also was having frequent episodes of bowel pseudo obstructions and had seen a paper that found FMT improved the symptoms in Chronic Intestinal Pseudo Obstruction (CIPO) in a number of cases. That has proved to be the case for me too even though my obstruction events are ischemic related (chronic mesenteric ischemia).

Interestingly though, I saw another small study doing FMT for CIPO via an NJ tube and it also eliminated SIBO in the process too for most patients (5 out of 7 cases).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5383124/
 
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Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
. I can tell you from personal experience that I tested negative for SIBO one week after doing 20 top down fecal transplants over 6 weeks. I was negative for SIBO about 3 months prior to doing FMT but tried a couple of courses of antibiotics anyway as my GI said I should presume it to be SIBO anyway but the antibiotics did little for the SIBO-like symptoms.

I tried FMT because I was also was having frequent episodes of bowel pseudo obstructions and had seen a paper that found FMT improved the symptoms in Chronic Intestinal Pseudo Obstruction (CIPO) in a number of cases. That has proved to be the case for me too even though my obstruction events are ischemic related (chronic mesenteric ischemia).

That's indeed very interesting- thanks for sharing your experience.

I'm afraid I have more questions!

1) The following resource describes two types of CIPO, muscle-related dysmotility and nerve-related dysmotility. Would ischemic-related CIPO fall under either or both of these categories?
https://rarediseases.org/rare-diseases/chronic-intestinal-pseudo-obstruction/

2) You mention testing negative for SIBO both before and after FMT. Was your gastrointestinal doctor's presumption of SIBO based on an evaluation of symptoms?

3) Do you have an idea how the FMT might have resolved/alleviated an ischemic-related dysmotility?

Cheers!
 

kangaSue

Senior Member
Messages
1,859
Location
Brisbane, Australia
The following resource describes two types of CIPO, muscle-related dysmotility and nerve-related dysmotility. Would ischemic-related CIPO fall under either or both of these categories?
Sorry, the post of mine didn't come across too clearly and chronic mesenteric ischemia (CMI) for me is a different condition (to CIPO), but where there are extended ischemic episodes in CMI, it can cause similar symptoms to CIPO (and can have similar imaging findings sometimes).

CIPO can be due to either myopathy, neuropathy, or it can involve both. CMI and CIPO may well be linked for all anyone really knows but my GI (who diagnosed CMI) wouldn't consider doing full thickness biopsies to see if I also had CIPO as my small bowel transit time was deemed normal in a barium swallow test.
You mention testing negative for SIBO both before and after FMT. Was your gastrointestinal doctor's presumption of SIBO based on an evaluation of symptoms?
My GI thought a new onset of worsening symptoms (nausea, vomiting, diarrhea, abdominal pain) might be SIBO related and suggested just doing antibiotics anyway after expressing the opinion that the SIBO breath test results are not particularly reliable.

There can also be a large overlap of symptoms between CMI and SIBO though so I gathered my symptoms were more likely ischemic related when antibiotics had little impact on things, and actually made the diarrhea worse. It was only FMT that helped with reducing the number of daily diarrhea episodes, and helped with reducing the severity of all the other GI symptoms somewhat too.
Do you have an idea how the FMT might have resolved/alleviated an ischemic-related dysmotility?
No, I'm at a loss to explain that, I don't think I've even seen a good explanation for it helping in CIPO either. All I know for sure is that it's been close to 3 years now since I've needed to seek emergency treatment for totally disabling epigastric pain. A vasodilator med was helping a lot with the GI symptoms prior to doing FMT, but it wasn't stopping the acute ischemic pain events from happening, and I had been taking the vasodilator for the best part of 3 years before doing FMT though.

I still have significant issues of GI dysmotility that hasn't been helped with FMT, but it's easier to cope with it all in not getting the acute pain events. I strongly suspect that it all has a physical cause though (renal Nutcracker Syndrome) so FMT wasn't likely to help anymore than it has done.

I can't prove that there's a link between Nutcracker Syndrome, upper GI symptoms and intestinal ischemia as according to the available medical literature, Nutcracker Syndrome only causes upper GI problems when you also have SMA Syndrome, but I don't have the latter. I do know of many anecdotal accounts of others having significant upper GI symptoms along with Nutcracker Syndrome alone, and their GI symptoms resolved or significantly improved in fixing Nutcracker Syndrome, so it's very disheartening that I can't get any doctor interested in doing something about adressing Nutcracker Syndrome for me.
 

EddieB

Senior Member
Messages
609
Location
Northern southern California