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Probiotics caused Fatigue/Brain Fog/Apathy/Disorientation - try Rifaximin?

Messages
75
Well I just noticed something interesting (albeit I'm so frustrated that I didn't notice this sooner), so the typical sign of Hydrogen Sulfide /H2S SIBO is a 'flat line' on the breath test. Mine showed 0 fermentation, and then when it reached the large bowel a, a small amount. The practioner who interpreted the results said she wasn't sure if it was a false negative or not.

Now I can't be sure either, however stupidly I never bothered to compare my results with other peoples, to get an idea as to what level of fermentation you typically expect to see when it reaches the large intestine. Mine showed a combined gas producting peaking at 6PPM... Turns out that's as good as 0!! Other people results seem to be showing combined gas productions of 10-20x that in the lage bowel (where you expect to see these gases.) So effectively, mine was as good as a flat line!! I pretty confident this does indicate infact that SIBO and Hydrogen Sulfide is my problem.

Especially as my GI Map showed no reason to believe there are any reasons for me to have low fermentation in my large bowel (no dysbiosis, no lack of strains, etc!) So now I'm frustrated A) with myself for not even doing this due diligence almost a year ago when I had the test done and B) naively trusting the practioners interpretation when I dubious about her knowledge anyway (she didn't inspire me with confident when we spoke on the phone, she really didn't sound like she was as clued up as she'd like to make out.)

But this then would make sense of my symptoms, and why probiotics have made this worse. But, if this is the case, the question still remains as to why it was there in the first place, and how I fix it.

H2S SIBO seems to be even more of a grey area than the other 2 forms, with no actual test available at the moment to be sure, and no real certainity on best course of treatment. Aghhh!!

But, this makes so much sense again now - if I've got it correct (I could be wrong still.)

It really does make me all the more tempted to roll the dice on Rifaximin though. Although it's hard to know if H2S should be paired up with other antibiotics. Hmm.

The other difficulty is knowing what to do with diet! Historically last year when I trialled a low sulfur diet my meat intake was high, and I was consuming a fair amount of fat through animal fats and oils - however some people seem to suggest a high fat diet should be avoided with H2S, and that even animal proteins should be limited as the high methionine/cysteine content can lead to fermentation...

But once you cut meat right now, cut sulfur vegetables, unless you live off sugar and starch ( which is also invariably not likely to be conjucive to success) - you're left with diddly squat!! Lettuce and Cucumber diet.. lol!

Going to have to think long and hard about this Rifaximin decision over the next few days. I mean even if it doesn't clear it entirely, I wonder if it'll undo some of the mess I may have created by gulping so many probiotics over the last few years (as presumebly I had SIBO before I even touched them, which is what made them problematic in the first place.)
 

Rufous McKinney

Senior Member
Messages
13,389
But once you cut meat right now, cut sulfur vegetables, unless you live off sugar and starch ( which is also invariably not likely to be conjucive to success) - you're left with diddly squat!! Lettuce and Cucumber diet.. lol!

WIell, three pieces of romaine sent me- off last week. It looked fresh, good, but raw salad is NOT on my list. But I was sure it would be fine. It wasn't.

cucumber- well that I can generally tolerate...oddly its does not cause wind (IBS-d). Wind is what I call it. I get help for the gut from the chinese traditional herbs and see an expert. Their teas are outstanding.

I do not know that I have a SIBO Issue....but I"ve gotten alot of improvement in colon from- these herbs..which i take after a meal.

My diet is quite narrow and restricted, so I feel your pain. I do well on protein and need it. But we all vary.
 

Art Vandelay

Senior Member
Messages
470
Location
Australia
Regardless, the Picolax arrived today, looking at the ingredients it also contains 3.5g of Magnesium Oxide. I will see how I feel tomorrow morning, if today has lead to any improvement (although as of yet, I don't really feel it has), but likely I will try taking the Picolax tomorrow AM and see if that does a better job of really flushing me empty.

I had Picoprep prior to a colonoscopy and I also took it to flush myself out before I started antibiotics for Blastocystis Hominis.

It certainly cleaned me out but I didn't experience any relief in my CFS symptoms (unlike when I experience the odd watery, foul-smelling bowel movements I mentioned in my first comment).
 
Messages
75
I had Picoprep prior to a colonoscopy and I also took it to flush myself out before I started antibiotics for Blastocystis Hominis.

It certainly cleaned me out but I didn't experience any relief in my CFS symptoms (unlike when I experience the odd watery, foul-smelling bowel movements I mentioned in my first comment).

Interesting, I guess all diarrhea is not created equal. I feel like the stars really aligned in April for that to happen, I Just wish I could recreate it!

I will give the Picolax a go, maybe it will work in my case, who knows.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@Rufous McKinney
50 years to find him.
And worth every day of it !!!


He really sounds like a gem, especially.... 1) Being banned from the local hospital ...... 2) Keeping paper records, and protecting his patients from cyber break ins .... 3) Thinking outside the box and constructing his own theories of illness, and his own treatment protocols for them ....
 
Messages
75
Wow !!! You are one intrepid experimenter !!! Good for you :thumbsup::thumbsup: :woot::woot::woot:!!!

LOL. If I believed eating dog poop could resolve my issues, I'd give it a shot.. (Thankfully, I don't believe that.)

It seems the Picolax has had virtually nil effect, it's been almost 5 hours so I'm assuming little will happen now. Maybe there was nothing left to come after yesterday (I ended up having a fair bit of liquid pass after the sweets, quite delayed, just wasn't as urgent as I expected.)

Not sure if I've seen any benefit at all from doing it, nevermind! Although I did pass a lot of liquid, it wasn't the explosive urgent 'flush' I experienced last April, which is what I wanted to recreate.

I think I'm talking myself more and more into trying out the Rifaximin. Realising what I did about my breathe test yesterday along with everything else over the last 2 years has totally taken my back thinking this is almost certainly hydrogen sulfide SIBO. The fact I never ever suffer with constipation also makes me think that I'm more likely to succeed with Rifaximin only (vs people with lots of methane producing bacteria / constipation that often need to use extras like Neomycin etc).

Antibiotic question:
Often you hear doctors say once you start a course of antibiotics, you should not stop prematurely. Does this apply to Rifaximin? My plan IF I run it, is to do 1200mg for 14 days.

However, if I were to get say 3 days in and really feel as if it might be having unwanted effects, is there any danger in just stopping the course dead?
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...

it's mind boggling just how much effect our physiology has on our mood, our thoughts, our emotions etc!
What's even more stunning is the effect our gut biome has on everything from our general well-being to panic/anxiety/depression disorders to bi-polar and schizophrenia.

I know that after a certain length of time, and the endless reading, researching, learning, and experimenting we do on ourselves to fight against the incursions of this irritating little weevil of an illness, we reach a point where we think that we pretty much know everything we need to about some subjects.

With that in mind, I'm once again recommending yet another book on probiotics, which has sime very helpful input on why they might backfire or be a bad idea, and where they might be beneficial. Like @Wolfcub, I've always approached them with caution and some leeriness, and this book confirmed my belief that, like herbs, they need to be treated with great respect, and greater than average layman's knowledge of their effects. I dont agree with everything in this book, but it was a trove of excellent info, and I recommend it without reservations:

The Psychobiotic Revolution
Scott C. Anderson, et al
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
However, if I were to get say 3 days in and really feel as if it might be having unwanted effects, is there any danger in just stopping the course dead?
Well....the jury seems to be out on that question. I remember researching it before for someone I know who was worried.
Some sources say it's okay....some say antibiotic resistant bacteria can survive if a course is stopped after a short time.
But then again....there is an equal risk of antibiotic resistant strains developing as a result of courses that are too long ! (albeit completed)

I once took an antibiotic (many many years ago, and for a completely different thing -a rose thorn infection) Well, a day into the treatment I felt desperately ill, literally thought I was dying. That wasn't the infection, it was the "medicine". I stopped it immediately, drank gallons of camomile tea, and within hours started to feel a lot better.
I then treated the infection with a mixture of strong herbs (no bad effects from those!) And it all cleared up in 3-4 days. As far as I could tell there were no antibiotic resistant bacteria who lived to tell the tale.
 
Messages
75
Well....the jury seems to be out on that question. I remember researching it before for someone I know who was worried.
Some sources say it's okay....some say antibiotic resistant bacteria can survive if a course is stopped after a short time.
But then again....there is an equal risk of antibiotic resistant strains developing as a result of courses that are too long ! (albeit completed)

I once took an antibiotic (many many years ago, and for a completely different thing -a rose thorn infection) Well, a day into the treatment I felt desperately ill, literally thought I was dying. That wasn't the infection, it was the "medicine". I stopped it immediately, drank gallons of camomile tea, and within hours started to feel a lot better.
I then treated the infection with a mixture of strong herbs (no bad effects from those!) And it all cleared up in 3-4 days. As far as I could tell there were no antibiotic resistant bacteria who lived to tell the tale.

That was another intesting component of GI MAP, albeit I don't really know how to interpret it - but it covers the presence of antibiotic resistant genes. I had 'ermB' and 'mefE' under 'Macrolides' showing as present for antibiotic resistance, but everythign else showed no presence.. I think this means I have very little antibiotic resistance currently.. Which I think is good, right? But maybe I'm interpreting it wrong lol
 
Messages
75
I can relate to pretty much everything that you are saying. I also got sick after taking probiotics, about 6 years ago. I had some mild issues, but it was NOTHING compared to what I have now. I could do and eat whatever I wanted. Now? Can't work, can't read, muscle weakness, severe brain fog, horrible food intolerances, etc..

I had mild SIBO, and probably still have to some extent, but after all these years and attempted treatments I came go the conclusion that it's not really the SIBO itself that is at fault. It's something else. Probably dysbiosis, and the only way to try and fix it is FMT, which I'm going to try in a few months.

P.s. I wouldn't even think twice about rifaximin if I were you. It's probably one of the safest drugs you can take. It has only very mild effect on fecal bacterial composition, so I wouldn't worry about aggravating dysbiosis. I would actually be much more worried taking any 'herbal antibiotics' like oregano. Rifaximin is also anti-inflammatory, it's probbly the reason why some people feel recovered and need to take it lomg term, because it like reduces intestinal permeability. In the end, I believe it's all about intestinal permeability, aka leaky gut.

I totally didn't see this reply yesterday, sorry - wasn't ignoring the post! Interesting to hear you've had a similar experience. I've never considered FMT becuase my GI MAP didn't show any issues with dysbiosis in my gut, which leads me to believe it could purely be a SIBO issue in my case. I know big bowel dysbiosis can be a nightmare to fix, so I'm grateful in spite of these issues that it isn't something I'm having to deal with on top of this.

I think I scare myself because I start googling about Rifaxmin experiences and naturaly you can find some horror stories, but realistically people only write up bad experiences most of the time anyway! Given that it looks like my GI issues may really lie largely/entirely in SIBO, I'd have thought that would put me at a low risk for side effects? (Vs someone who may have say SIBO and a bunch of dysbiosis etc in their gut.)

I certainly don't want to think myself into side effects if I do decided to go ahead with it - we all know how powerful the placebo and nocebo effect can be!

It's hard to know with leaky gut, chicken or the egg. I'd almost be more inclined to think that in my case, the SIBO caused the leaky gut, not vice versa. (Interestingly, I had no food intolerances until after instigating this whole nightmare with probiotics. Then I went on to develop an almond/almond milk intolerance in the last 2 years which I never had previously.)

I guess what would be ideal, is if I started the Rifaximin, and could see a very immediate benefit / dissipation in symptoms (I.e. brain fog, fatigue etc banishing) as that would give me a strong incline I was doing the right thing. I'm not sure if it's one of those scenarios where you'd expect that, or if you have to run the course of it before you expect to see the shift.

I assume you've run Rifaximin yourself in the past then..? Could you tell me more about your experience, any side effects you experienced etc? :)
 
Messages
75
Okay after spending 2 days trying to induce a strong bout of diarrhea/bowel cleanse to see if I could mimic my experience in April 2019, my thoughts are:

I think it worked, kind of. You can never be sure it isn't placebo, but I do feel a sense of clarity today that I haven't felt in a while, not to mention the disorientation albeit still somewhat there feels the least invasive it has for some time.

So if it's not placebo effect, it almost seems like it 'half worked'. The diarrhea I induced didn't ever feel like it did in April 2019, in that it wasn't this super super urgent fire hydrant 'emptying' - but I did go to the toilet many times and pass a fair bit of liquid.. It seems that the anonymous bout of diarrhea from April 2019 was almost an alignment of the stars, what mechanism induced that I'll never know, but it seems trying to recreate it 1:1 through laxatives or otherwise isn't really going to happen.

But as I've said, I do feel I have seen some benefit, which is promising.

Still waiting on the Rifaximin to arrive, right now I'm probabably about 85-90% sure I want to give the Rifaximin a go.

I think I'm in a situation where I want someone to give me a definite 'yes you should' or 'no you shouldn't' do the Rifaximin answer - which in reality isn't ever going to happen. I'd say if I collate all of the evidence I have, all the tests I've done, cross reference it with the symptoms, the onset etc then on the balance of probability, it's H2S SIBO i'm dealing with.

But regardless, even those who are as good as 100% through direct diagnosis (rather than a false negative) that they have SIBO, there's STILL no guarantee the treatments work.

Some people will take an antibiotic and have full remission and never look back, some will have remission and relapse, some will have no benefit at all, and some may even end up worse off. But I think fundamentally, no one at this stage (even the specialists) can accurately predict who will end up in which of those categories.

So I think I just need to make a decision in my mind and stick with it. The Rifaximin probably won't turn up for another few days so I've still got some time to mull it over.

If I'm saying i'm 99% sure it is infact H2S SIBO, then outside of Rifaximin I have to consider what my other options are.. which really because how much of a grey area it is, AFAIK is Herbal antibiotics. I think there are pros and cons for both camps. Although having recognised that actually all of this has been fueled by a 'harmless off the self supplement (probiotics)', I think I am now far more dubious than ever of 'supplements' (I.e. a year a go i'd of probably argued that antibiotics are the devil and supplements are descendents of heaven/harmless) - I think i've learnt the hard way that it's not that cut and paste!

Still interested to hear anyone elses experiences with Rifaximin.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
I think I'm in a situation where I want someone to give me a definite 'yes you should' or 'no you shouldn't' do the Rifaximin answer - which in reality isn't ever going to happen.
One of the rules on PR is that we NEVER, EVER, EVER give direct medical advice, altho we can share freely about anything that helped us or someone we know or someone else on this site who posted about it, or research studies or books or supplements, herbs etc that have been informative and helpful.


If we started handing out unlicensed medical hoo-haa, this site would be shut down lickety-quick. I'm not saying that it hasn't been done, but not often, and usually not twice.

And I'd really really miss it.

Listen to your gut, reread some of the posts on this and other threads, think about the pros and cons. Just because it's arriving doesn't mean you have to toss it right down, tho I soooo know that strange sense of urgency and pressure to sort of just dive in and get it over with .... hang in there til you're reasonably comfortable.

Then remember that you're an intrepid explorer, and go boldly ....
 
Messages
75
Then remember that you're an intrepid explorer, and go boldly ....

LOL, you're killing me with this intrepid explorer stuff. Yeah I totally understand about the medical advice, I even mean in a broader sense - even a 'qualified' doctor who's job it is to give the advice, can't give me any definite answers. So the situation is always going to be a roll of the dice!

I think I'm probably going to sit down and map out the pros and cons on paper. I'm also very impatient by nature, so having spent the past 2 years in the continous state of 'bleugh', yet having tasted that sweet sweet taste of symptom remission last April, it's easy for me to want to just dive in head first.

But yes, if I go ahead and do it, I want to do it 'boldly' haha. Positive expectations, no fear, no nocebo effects!!
 
Messages
75
I've decided I'm definitely going to try the Rifaxmin, so now it's just a case of waiting for it to arrive. It arrived in the UK on Friday AM according to Royal Mail, so hopefully it's not stuck at customs, was hoping it would be here today but will pray for tomorrow!

I will keep this thread updated so you can all see how I get on, hopefully it may be informative for someone in a similar predicament in the future.
 
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30
I have taken two rounds of Rifaximin.
-Strong positive for both hydrogen and methane from breath test.
-Herx reaction early on in both cases.
-$2200 if buying from local pharmacy. $75 or so if buying "online" from Canada. I went with the latter ... generic from India. My insurance would not cover for the diagnosis of SIBO. The high cost is due to patents.
-Experienced positives from first round. The second round seemed inconsequential, however, it was taken during the cold and flu season. Sometimes, it is difficult to know exactly what is knocking you down.
-I have thus far avoided probiotics for fear of doing more harm than good.