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

[canyouhearmeaya]

So I tried two things today.. (Don't judge me.)

First up I tried the MCT Oil, I did 4 tablespoons. (I haven't taken any MCT oil for 3-4 months). I was certain that 4 tablespoons would induce fire hydrant diarrhea... Waited an hour ,felt nausea and a bit cold, but nothing. So I took another 4.. Waited an hour, nothing.

So then I decided to go another step, I went to the local health store and picked up the 'low sugar gummy bears', containing loads of Maltitol, I ate 300g (that's 200g of Maltitol!) worth as I was certain that would do the trick. Given the things I've tried so far, it seems my boy is SUPER resistant to diarrhea, I don't know if there's something deeper to that, it does seem strange that the bout of diarrhea last year cleared my symptoms and yet it's so hard to get my body to 'flush' like that.

Anyway, the sweets had some effect, I had a few bouts of diarrhea, still a little underwhelming. I imagine many people would be running to the toilet for 24 hours after doing that much MCT alone, let alone all that sugar alcohol. I decided to eat a final 100g of the sweets, to see if any more happens across this afternoon. I expect I'll have a few more rounds.

It just doesn't feel like i'm 'flushing' though, if that makes sense. In April, it was like a big build up in my gut and an urgent 'evacuation', this all seems a bit childsplay in comparison. I'm really shocked my body has withstood the things i've done to try and induce it so well.

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.

Unfortunately I only have 1 sachet of Picolax, it seems often people take 2 before a colonoscopy, 1 early then 1 several hours later.. So hopefully 1 sachet will be enough to induce a decent flush of my GI tract.

But yeah, given the salt water failed, vitamin c failed, MCT failed and huge amounts of sugar alcohols still created a lack luster response, it really does have me wondering HOW my body is so resistant to diarrhea?!?! (Note, I never suffer constipation either. I always go 1-3 times a day, but often its kinda loose and not a solid great consistency.)

 

[ljimbo423]

Did you feel any direct benefit of the Rixamin itself? (I.e. improvement of symptoms as result of Rifaximin).

I had mild improvement in symptoms from the Rifaximin, not nearly what I was hoping for. Although there have been a few people here that have almost fully recovered within days of starting Rifaximin but once they stopped it, they got sick again.

The biggest benefit I had was that it allowed me to treat my sibo/dysbiosis with antibiotic herbs, without experiencing debilitating symptoms from the bacteria dying off and their toxins entering my bloodstream.

Were you 'diagnosed' with SIBO via breath test?

No, I just went by my symptoms and the research that shows most or all ME/CFS patients have significant dysbiosis.

It's interesting to see that error rate, it really almost makes you think the test pointless!

It really is almost useless, especially the lactulose breath test.

Did you run it for 14 days? I was planning on 1200mg (3x400mg) for 14 days, as the literature seemed to suggest that was likely the sweet spot. Did you split your dose through the day? OR take the full dose in one hit?

I split my 2 courses up and did one, then waited a month or so and did the second. I took 400 mg 3 times a day for 10 days each time. The other thing to consider, if you are not already aware, is that carbs, especially starchy carbs are sibo's best friend and thrive on them.

Treating sibo without a low carb diet will almost certainly fail, even if you get good benefits to start with. I've read research that says almost 50% of otherwise healthy people that treat sibo, will have a relapse. My feeling is that number is much higher in ME/CFS because of the immune activation, inflammation, mitochondrial dysfunction, etc.

What I've learned is that sibo needs to be treated long term with everything you can do to beat it. I hope I'm not discouraging you, my intent is just the opposite. I just don't want to tell you this is easy and will go away with little effort and not come back, because that's very unlikely.

I think of it like this....

If sibo or dysbiosis are the primary root cause of ME/CFS (and I think they are), then they can't be easy to fix or this forum would have a lot less people in it or many more would have recovered or be in remission.

Whatever the cause of ME/CFS is, you can bet it's going to take long term, extensive interventions to turn it around and once in remission, continued long term interventions to stay there, for the vast majority of people.

 

[Wolfcub]

My gut feeling (no pun intended) is that the gut complications most of us face are a downstream consequence of some sort of immune system dysfunction/suppression that is occurring upstream.

When I first came down with whatever it was that gave me ME/CFS I did notice sudden differences in bowel movements and belly generally. I never had diarrhea, but there was more "urgency", and nothing felt as good as it was before (even the day before!! as this all happened very suddenly indeed after a "flu-like" feeling -or illness.)

I have never had diarrhea, but some unusual events -meaning at my worst, I've had to go 3 times instead of once a day, or odd heartbeat/body shaking etc associated (also which never happened before.)

I sensed -though might be wrong of course -that the problem wasn't in my guts as such (as when I remit, I feel no gut abnormalities at all)....but it was a body reaction to something dramatic happening elsewhere, like an extreme immune response....or something....

 

[canyouhearmeaya]

It really is almost useless, especially the lactulose breath test.

This is the one I took, I thought at the time it was the superior method too! Doh.

I guess my biggest concern with Rifaximin is making myself worse. But I also expect I'm thinking worst case scenario too much also. As you've said it may do nothing, may open a gate way to another healing method, but there is also a chance that it may infact solve the issue - the only way to know is to try really.

That's why I wanted to hear peoples experiences, as it's easy to find bad experiences online and think that its almost certainly going to cause you a load of horrid issues, when in reality, generally people only write bad reviews!

I need to go back to low carb, the problem is as I've stated my tolerance for sulfury vegetables is terrible (which I suspect is H2S Sibo), that's what really causes my fatigue, so once you've eliminated starches, sulfury foods and effectively all carbs, you're not left with much! lol!

Given that this all really seemed to have been caused by taking probiotics, it does give me hope that it may not be as complex to solve as it can seem, but who knows. (Okay, not caused by probiotics, as probiotics invariably just fueled something that was already their), but prior to probiotics I wasn't having these kinds of issues, if I was it was a fraction of it, so it really all seemed to turn for the worst when I started using them, which again is what makes me suspect SIBO being a big part of it. I can't really understand what other scenarios probiotics would logically make sense causing so much ill-effect outside of SIBO?

I wish someone could be me hard odds. 'If you run the course of Rifaximin, there's a 5% chance it'll have ill effect, 95% chance no improvement or some greater or lesser degree improvement.' If the risk for harm is low, I think I want to roll the dice.

 

[canyouhearmeaya]

When I first came down with whatever it was that gave me ME/CFS I did notice sudden differences in bowel movements and belly generally. I never had diarrhea, but there was more "urgency", and nothing felt as good as it was before (even the day before!! as this all happened very suddenly indeed after a "flu-like" feeling -or illness.)

I have never had diarrhea, but some unusual events -meaning at my worst, I've had to go 3 times instead of once a day, or odd heartbeat/body shaking etc associated (also which never happened before.)

I sensed -though might be wrong of course -that the problem wasn't in my guts as such (as when I remit, I feel no gut abnormalities at all)....but it was a body reaction to something dramatic happening elsewhere, like an extreme immune response....or something....

Do you mind me asking your full list of symptoms Wolf? x

 

[pechius]

Given that this all really seemed to have been caused by taking probiotics, it does give me hope that it may not be as complex to solve as it can seem, but who knows. (Okay, not caused by probiotics, as probiotics invariably just fueled something that was already their), but prior to probiotics I wasn't having these kinds of issues, if I was it was a fraction of it, so it really all seemed to turn for the worst when I started using them, which again is what makes me suspect SIBO being a big part of it. I can't really understand what other scenarios probiotics would logically make sense causing so much ill-effect outside of SIBO?

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.

 

[Rufous McKinney]

The fact that you found him is WONDERFUL !!! To have someone in your corner who's genuinely concerned and interested in helping, whether he's an expert in this shabby little rag-bag of an illness or not, is in itself a form of healing.

My doctor is rather Perfectly Great. He is not like any other doctors, and thats probably the key. Just him, and his office manager. No nurse. Paper records. 45 minute appointments.

Generally- most procedures and pills aren't worth it- his opinion shared by us.

My doctor also is banned from our local hospital- and thats actually Good. He does not go along with the Cut and Cure for the 89 year olds in the rest home. He takes people OFF the 20 too many pills they are taking.

And he makes you feel REALLY good...in cares...in this way.

He writes books about his own cardio theories...he is very creative and gets very excited about these developments...and the recognition that others like his theories. So he is clearly- not the typical doctor.

50 years to find him.

 

[ljimbo423]

I guess my biggest concern with Rifaximin is making myself worse. But I also expect I'm thinking worst case scenario too much also. As you've said it may do nothing, may open a gate way to another healing method, but there is also a chance that it may infact solve the issue - the only way to know is to try really.

You are going through the same struggle I had. It took me a long time to convince myself to try the Rifaximin, for fear of making my self worse. It was at least a number of months and maybe a year or more, before I felt comfortable enough to try it.

 

[canyouhearmeaya]

You are going through the same struggle I had. It took me a long time to convince myself to try the Rifaximin, for fear of making my self worse. It was at least a number of months and maybe a year or more, before I felt comfortable enough to try it.

But having done it, did you look back and think 'what was all of that worry for..!'?

 

[ljimbo423]

But having done it, did you look back and think 'what was all of that worry for..!'?

Yes I do now. Not only did I only get mild loose stool for a few hours one day as my worst side effect. It also allowed me to start a more aggressive sibo/dysbiosis protocol that has improved my health dramatically.

As a side benefit, completely unexpected, the 2 courses of Rifaximin stopped the full blown anxiety and panic attacks I had been getting for 43 years! No other changes or drugs etc, just the Rifaximin.

It's clear to me that the toxins from my gut were not only having a negative impact on my body (my mitochondria, immune system and inflammation) but also a profound influence on my mind, in the way of massive anxiety attacks.

 

[canyouhearmeaya]

As a side benefit, completely unexpected, the 2 courses of Rifaximin stopped the full blown anxiety and panic attacks I had been getting for 43 years! No other changes or drugs etc, just the Rifaximin.

It's clear to me that the toxins from my gut were not only having a negative impact on my body (my mitochondria, immune system and inflammation) but also a profound influence on my mind, in the way of massive anxiety attacks.

That's incredible! I'm so happy for you. That benefit alone was worth it no doubt! And yes it's mind boggling just how much effect our physiology has on our mood, our thoughts, our emotions etc! This whole experience has made me realise that. If I eat super sulfury foods, not only am I hit by serious fatigue, but also sometimes real feelings of anxiety and even nervousness (including facial blushing - if you knew me in person, you know how unlike me this is, not a nervous person at all lol!) It's such a complex system the body, it really makes you realise how in some respects, we are just sacks of skin filled with hormones, chemicals, bacteria, you name it!

It made me understand that there really is no such thing as 'mental health', when I say that, I mean in the way that we talk about 'mental health' as if it is seperate from 'physical health', as if your physiology doesn't drive our psychology and vice versa, when really it's all one. But I think it takes these kind of experiences, having to experience different facets of your mind and body in some many rapidly varying states so reguarly to really get the contrast to appreciate it - I think most healthy people are naive to it, simply because they've never really been forced to face it.

So although these experiences can sometimes seem like a cruel existence, they can also be hugely educational and eye opening too, right!

 

[ljimbo423]

That's incredible! I'm so happy for you. That benefit alone was worth it no doubt!

Absolutely! The mental and emotional pain and agony of those panic attacks was horrific and I would wish on no-one.

It made me understand that there really is no such thing as 'mental health', when I say that, I mean in the way that we talk about 'mental health' as if it is separate from 'physical health', as if your physiology doesn't drive our psychology and vice versa, when really it's all one.

Exactly. They cannot be separated.

So although these experiences can sometimes seem like a cruel existence, they can also be hugely educational and eye opening too, right!

It's amazing how much I've learned researching my illness, better health and monitoring myself over the last 12-13 years. Countless things that I will no doubt use for the rest of my life!

 

[Wolfcub]

Do you mind me asking your full list of symptoms Wolf? x

Sure.
These symptoms came on suddenly, on a certain date at a certain time, almost 2 years ago now.
They return every time I crash but new ones i.e short lived nerve pains came late on (this year mostly)
Symptoms from the beginning were:
mild-ish nausea
Weird appetite -from unnatural ravenous hunger to complete loss.
Heavy feeling and twinges on forehead above right eye (not bad enough to be called "headache" or "migraine"
Exhaustion during any exertion, even mild.
Bowel irregularities (though no literal diarrhea or constipation.)
Inability to focus and concentrate.
Feeling of malaise (feels like the day you are either just starting to get over flu or just beginning with it. That particular "buggy" sensation.)
Very irregular heartbeat (going from 110 bpm to 80 within a couple of minutes. And many missed heartbeats. Counted 10 a minute at one time.
Feeling tearful for no apparent reason.
Odd sensation in neck, like my head kept wanting to veer to the left! (best way I can describe it!)
Chest tightness, and occasionally a bit of chest congestion which would pass completely in a day. Not like asthma though.
Sudden spasticity in both legs which comes with a creeping slightly burning pain through both legs. That is rarer but can still happen without warning and happened 4 times now. When it happens I have to sink to the floor/ground wherever I am. Only lasts a few minutes and legs work just fine again after 3-5 minutes, but is scary.
Vibrating/trembling deep down inside (not visible to an observer) which feels like being heavily over-caffeinated.
A sense of doom whenever all these symptoms come at the same time.

I'll just add that 2 doctors checked heart and breathing and all seemed okay. I've had blood tests, (and the doctor made sure the infection aspect was well covered), CT scan, basic neurological testing, urinalysis. They all show no abnormalities.

 

[canyouhearmeaya]

I'll just add that 2 doctors checked heart and breathing and all seemed okay. I've had blood tests, (and the doctor made sure the infection aspect was well covered), CT scan, basic neurological testing, urinalysis. They all show no abnormalities.

Thank's for sharing. Have you done any of the GI Testing yet? I did GI Map which I'd highly reccomend, I also did SIBO breath test but as we've established in this thread, it's not particuarly useful.

The GI MAP as far as I know however is regarded as being the more accurate way to get an idea of what's going on in your gut, will show any dysbiosis, pathogens, parasites.

I must admit it didn't lead me to any direct answers in my quest as you can tell, but it has provided clues that i'd of been complete blind to had I not done it (for example it showed I had fat in my stool, which in the absence of a liver, gallbladder or pancreatic issue, and any kind of IBD or Celiac, may for example support evidence of SIBO.)

Thankfully it did show no issue with dysbiosis in my gut, which also makes me suspect that mine is more predominately SIBO.

I did have a 'leaky gut' (elevated Zonulin, low Secretory IGA) which in of themselves aren't really telling, as they can coincide with many things, but again may be the result of SIBO. Of course 'leaky gut' is a bit of an ambigous term and grey area still as far as I'm aware, but I did develop an intolerance to Almonds in the last 2 years which I never had prior.. Which is how I've come to understand that may have developed.

I wish you the best of luck in your jouney. x

 

[Wolfcub]

It made me understand that there really is no such thing as 'mental health', when I say that, I mean in the way that we talk about 'mental health' as if it is seperate from 'physical health', as if your physiology doesn't drive our psychology and vice versa, when really it's all one.

With animals, it's well known that if they start to show any signs of emotional distress, they need a full health work-up at the vet's. Because it's accepted certainly in the veterinary field, that physical illness causes emotional distress.

 

[canyouhearmeaya]

With animals, it's well known that if they start to show any signs of emotional distress, they need a full health work-up at the vet's. Because it's accepted certainly in the veterinary field, that physical illness causes emotional distress.

Yeah that's a great comparison/analogy. I'll have to remember that one!

 

[Wolfcub]

No I haven't had any GI testing @canyouhearmeaya I haven't really wanted it (which you might find weird of me) Because when I am not crashing -I have no gut symptoms. My gut is perfectly fine, digestion healthy, and shows no food intolerances either.
These things only come on during a crash and all seem to come together as a package. (crashes unrelated to my regular food which I eat both during crashes and when I have remissions.) Any gut effects are now hardly noticeable. There's just one thing that does come if I am severely exhausted and in a bad crash and that is -I just want to go to the toilet much quicker in the morning than I would usually do. But everything "behaves" quite normally. So I can see that aspect is getting better without interference as time goes by.

 

[Wolfcub]

I honestly don't know enough about this issue, but am always very wary of taking probiotics. I keep away from them. I eat loads of "pre-biotic" foods, but probiotics give me a bad feeling.

You have probably tried this, so bear with me and forgive me if I am being tedious but have you ever tried a water-only fast for a day or two? And if so, how did it affect you?

 

[canyouhearmeaya]

I honestly don't know enough about this issue, but am always very wary of taking probiotics. I keep away from them. I eat loads of "pre-biotic" foods, but probiotics give me a bad feeling.

You have probably tried this, so bear with me and forgive me if I am being tedious but have you ever tried a water-only fast for a day or two? And if so, how did it affect you?

I think I mentioned it in my OP, but maybe I forgot! Yes. Fasting improves my symptoms without a doubt. Which again for me inforces it being GI/Food induced (Okay, I know it's not that simple as fasting has a TON of effects on the body but still!)

I'm going to revert back to low carb.. although it's going to be mega restrictive (low carb, low fodmap, low sulfur - lol!) but needs must. It will be interesting to see if I see any improvement tomorrow after today (I'm not really expecting too, but who knows.) Then likely tomorrow I'll try the Picolax to see if that achieves a better 'flush', and if that yields any benefit.

I have the Rifaximin arriving probably the start of next week, i'm still undecided but I must admit I am very tempted to run a course of that for 2 weeks, but playing it by ear for now.

 

[Wolfcub]

I wish you the very best with what you are doing, and hope that something works for you to feel better.