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

[canyouhearmeaya]

For the last 3.5 years I have suffered with a state feeling totally 'flat'/apathetic, completely brain fogged, disorientation (think this might actually be light sensitivity, I feel very visually disorientated in high lit areas), and also bouts of severe fatigue.

I have tried a million and one things to resolve this, to no avail. The last 2 years the symptoms have been constant, the ONLY period I have had of remission was after a severe bout of diarrhea in April 2019 (spontaneous diarrhea, I think I'd actually dehdryated myself after cutting electrolytes totally whilst doing a super low carb diet), symptoms all dissipated, felt totally human again, but ultimately they came back.

Now I have done GI Map testing, nothing really to note on there. Lactulose breath test, appeared to be a flat line, so actually suspect possible false negative because of hydrogen sulfide sibo. If I eat high sulfur vegetables, my symptoms all get worse. I have been through sleep studies, nubmerous blood tests, nutrient checks, stool tests, ultra sounds etc, to no avail.

The first time I experiened this feeling was Oct 2019 - suddenly one morning at work it me like a train from one moment to the next, I just felt completely out of it, went totally flat in the head (all my motivation for anything suddenly disappeared), I went physically cold, felt super spaced out/disorientated/dizzy.

The other day it occured to me, 7-10 days prior to that experience was the first time I ever used Probiotics. I'd always had a bit of a dodgy gut prior, 'IBS' as a doctor would call it. Loose stools, bloating etc, but nothing horrific. This is why I started probiotics in the first place, trying to improve gut health. In the last 3.5 years I've gone thorugh 20+ bottles of high dose probiotics, naively thinking they're harmless and can only help. Having ruled out virtually everything diet wise, it occured to me the other day I may have induced this through probiotics.

Now, a quick google brings up anecdotal evidence supporting this. Other people mirroring the same experience. In some cases it seems abstaining from probiotic/prebiotics dissolves the symptoms, in others not.

Now I don't suspect the probiotics 'caused' this, as discussed I had some GI issues anyway, but rather they have exacerbated what was initially a minor issue, presumebly to a point now where virtually anything I eat is fermenting. Fasting also improves symptoms, water only after 2-3 days.

But I'm at a loss with this, it's ruining my life, I've spent most of the last 2 years out of work, its affected every aspect of my life and I really am at my wits end (as i'm sure so many of you can relate.)

Unlike most people, I didn't get sick or have any kind of illness prior to the onset of this 3.5 years ago. HAving racked my brain 1000 times over, the only thing I can confidently say I did that I'd never done before (significant difference) was taking damn probiotics. It was a generic multistrain, 60 billion CFU, ans since then I've run largely Renew Life's 50 Billion Critical Care formula.

I suspect it could still be SIBO, but if it's hydrogen sulfide related then there's no way to actually accurately test afaik. You just flat line, like mine appeared to. I did have some gases present once it reached the large bowel, but less than you'd tyically expect, so the practioner said it could be false negative, hard to say. But GI Mapping showed no obvious issue/dysbiosis in large bowel, which again makes me question if its sibo or something of the sort, that I've just exacerbated hugely with probiotics. Ironically my GI symptoms aren't worse. If anything they may be better, but I just feel totally out of it no matter what I do now.

I'm debating trying a course of rifaxmin, 14 days at 1200mg or similar. I wondered if anyone has had a similar experience? I don't know what else to try. I know there's an answer based on the fact that my symptoms totally disappaered after that diarrhea in April 2019, it was so amazing I actually cried tears of joy because I thought the nightmare was over. I've stupidly done 5 bottles of Probiotics since then. Part of me suspects that a course of rifaxmin might just clear out my small intestine and solve this, but I don't know if I'm being overly hopeful.

I'm also discussing it with my gastro, however as I'm sure many of yu have experienced, this area of health is so complex and new that it's even above the heads of many specialistss. I'm able to source the antibiotics myself, so I'm not dependant on him to make the decision, but I'd like his input.

The other option we discussed was trying something like a prescription grade laxative, maybe picolax etc, and seeing if inducing diarrhea might recreate what happened last year in April. I've tried my own methods to induce a total flush to no avail (the Diarrhea last year as explosive 'oh crap I cant hold this at all' diarrhea - TMI?), which is a total anomly for me. It's something i NEVER experiene, I've had loose stools since childhood, yet even as a lactose intolerant I can drink a litre of milk and still not experience liquid diarrhea, its just loose/mushy - it's almost as if my gut is totally resistant to having liquid diarrhea? Very odd. But the one period of having it, seemed to clear something out! I recently tried the 'salt flush', 2 teaspoons of salt in a litre of warm water, this gave me a very tiny mild bout of 'diarrhea' but not the 'flush' everyone seems to claim. I also tried consuming 25 grams of Sorbitol containg Vitamin c, which again gave me some but realistically mild. If I were to recreate what happened last year, it needs to be full blown explosive diarrhea (i'm sorry, i don't have a more elegant way to put it in this fogged state.)

I'd like to hear anyones suggestions, experiences etc.

 

[canyouhearmeaya]

Sorry I meant to say the first experience of this was October 2016** Not 2019.

 

[Wolfcub]

Hello, and welcome to our Forum @canyouhearmeaya
This is only a thought I just had, and may not be suitable for you at all for many reasons. You know your gut better than I do !
...but have you ever thought of experimenting with a colonic irrigation or something similar like an enema?

 

[YippeeKi YOW !!]

In the last 3.5 years I've gone thorugh 20+ bottles of high dose probiotics, naively thinking they're harmless and can only help.

Don't beat yourself up over this misconception. A powerful industry has spent a lot of time and money making probiotics the harmless cure-all that so many people, including probably everyone in these threads at one time or another, is looking for.

It's a quiet fact that probably 70-80% of all probiotics are manufactured and marketed by very large, very greedy, very powerful companies, like Proctor & Gamble, several BigPharma, and a few others.

Having ruled out virtually everything diet wise, it occured to me the other day I may have induced this through probiotics.

I'd say almost indubitably.

Now I don't suspect the probiotics 'caused' this, as discussed I had some GI issues anyway, but rather they have exacerbated what was initially a minor issue

It's a bit of both. When you're born, you come into the world provided with an array of gut microflora, already installed and ready to go. It takes about 2-3 months for them to activate. These comprise your commensal microbiome, and your system will revert to them repeatdly thru-out your lifetime.

Your microbiome changes daily, sometimes hourly, but your commensals are your main go-to. What you eat will change your gut biome, sometimes for good, sometimes not. When you introduce 'foreign' strains in fairly large amounts, there can be fierce battles between what's there already and what you introduce, creating a good deal of .... discomfort. Then there's the difficulty that inappropriate strains of even beneficial bacteria can cause.

I'm able to source the antibiotics myself, so I'm not dependant on him to make the decision, but I'd like his input.

Before you totally wipe out ALL your microbiome with antibiotics, and a good deal of other things as well, it might help to do a little reading and learn a bit more about the multi-trillions of bacteria that use us as a vehicle, as it were, to get from place to place, and control a HUGE amount of our lives that we're blissfully unaware of. I mean, who wants to describe themselves as a party bus for bacteria?

There's an interesting book you might want to browse before you take drastic measures, called:

The Psychobiotic Revolution:
Mood, Food, and the New Science of the Gut-Brain COnnection
Scott C. Anderson, et al ​

I've tried my own methods to induce a total flush to no avail (the Diarrhea last year as explosive 'oh crap I cant hold this at all' diarrhea - TMI?),

If you really want a total flush, try Magnesium Oxide. BulkSupplements has a good powdered version, and at a high enough dose (the label will tell you how much is in 1/8, 1/4, 1/2, etc teaspoons) it'll clean you out so effectively that you'll forget your name and where your shoes are. Which you'll need to keep racing to the W.C.

Do read a bit about probiotics, it'll stand you in good stead and may help you avoid some pitfalls and mistakes along the way. They're definitely not a one-size-fits-all kinda thing, and some may be actually toxic to your system.

 

[ljimbo423]

Lactulose breath test, appeared to be a flat line, so actually suspect possible false negative because of hydrogen sulfide sibo.

From the research I've done, a lactulose breath test has a big margin of error and only a 44% accuracy of being able to correctly identify those without SIBO - see below.

In medical diagnosis, test sensitivity is the ability of a test to correctly identify those with the disease (true positive rate), whereas test specificity is the ability of the test to correctly identify those without the disease (true negative rate).

Source

Therefore, it is not surprising that the sensitivity and specificity of the lactulose hydrogen breath test in detecting SIBO has been reported to be only 68% and 44%, and for the glucose breath test 62% and 83%.16

Source

Part of me suspects that a course of rifaxmin might just clear out my small intestine and solve this, but I don't know if I'm being overly hopeful.

Two courses of Rifaximin at 1200 mg a day, allowed me to tolerate antibiotic herbs like Oil of Oregano and Berberine, etc. without feeling miserable from the bacteria in my gut dying off. A small percent of people do get side effects from Rifaximin, however I didn't have any, except a few hours of loose stool one day.

Most bacteria that cause problems live in biofilms. Biofilms are often very difficult to penetrate to kill the bacteria living in them. I think this is one reason SIBO is so often a "chronic" condition and so hard to completely get rid of. If the bacteria living in these biofilms aren't completely killed off, they will multiply and again cause SIBO or dysbiosis.

Having said all that, I've at least doubled my energy and how much I can do physically before I get PEM by treating SIBO and dysbiosis. I do 6-7 hours a day of physical activity without PEM and can walk 30 minutes with very little to no PEM now and I have had ME/CFS for 42 years, been disabled with it for 30 and was mostly bedridden for several years!

Another thing I have learned is that what works for each of us is different. Probiotics help me, as do prebiotics. Some people get much worse taking these things, as you did with the probiotics. So there is a lot of trial and error involved in treating SIBO or dysbiosis as individuals.

I firmly believe it's worth the time and the effort put into it though! Your experience with the dramatic relief you had from the really bad diarrhea you had, should be and sounds like it is, a big green light pointing you in the right direction.

 

[Rufous McKinney]

I'd like to hear anyones suggestions, experiences etc.

well, I am not big on taking probiotics. Right now, I eat some of that raw organic saurcraut- is doing an excellent job.

I"ve had some negative- changes post taking them. I do them occassionally. Here and there, now and then. So I am currently- avoiding them again. I stopped taking one that I had particularly bad- immediate reaction.

Why? I follow chinese traditional medicine protocols, I use their diet recommendations, and I take herbs for IBS-d which work really well.

This does'nt mean I am cured...I still have to be very careful about what i eat, very little raw food...very very little of that. And many vegetables- can set things off. Its hard to figure out. Sometimes- its that it was just a bit too MUCH of that. (brocolli). Portions, timing, temperature all strongly affect my digestion.

 

[canyouhearmeaya]

Don't beat yourself up over this misconception. A powerful industry has spent a lot of time and money making probiotics the harmless cure-all that so many people, including probably everyone in these threads at one time or another, is looking for.

It's a quiet fact that probably 70-80% of all probiotics are manufactured and marketed by very large, very greedy, very powerful companies, like Proctor & Gamble, several BigPharma, and a few others.

I'd say almost indubitably.

It's a bit of both. When you're born, you come into the world provided with an array of gut microflora, already installed and ready to go. It takes about 2-3 months for them to activate. These comprise your commensal microbiome, and your system will revert to them repeatdly thru-out your lifetime.

Your microbiome changes daily, sometimes hourly, but your commensals are your main go-to. What you eat will change your gut biome, sometimes for good, sometimes not. When you introduce 'foreign' strains in fairly large amounts, there can be fierce battles between what's there already and what you introduce, creating a good deal of .... discomfort. Then there's the difficulty that inappropriate strains of even beneficial bacteria can cause.

Before you totally wipe out ALL your microbiome with antibiotics, and a good deal of other things as well, it might help to do a little reading and learn a bit more about the multi-trillions of bacteria that use us as a vehicle, as it were, to get from place to place, and control a HUGE amount of our lives that we're blissfully unaware of. I mean, who wants to describe themselves as a party bus for bacteria?

There's an interesting book you might want to browse before you take drastic measures, called:

The Psychobiotic Revolution:
Mood, Food, and the New Science of the Gut-Brain COnnection
Scott C. Anderson, et al ​

If you really want a total flush, try Magnesium Oxide. BulkSupplements has a good powdered version, and at a high enough dose (the label will tell you how much is in 1/8, 1/4, 1/2, etc teaspoons) it'll clean you out so effectively that you'll forget your name and where your shoes are. Which you'll need to keep racing to the W.C.

Do read a bit about probiotics, it'll stand you in good stead and may help you avoid some pitfalls and mistakes along the way. They're definitely not a one-size-fits-all kinda thing, and some may be actually toxic to your system.

I read a couple of books similar to that last year! It's mind boggling just how much effect almost seemingly insignificant bacteria can have on the state of the vehicle (US!) I will certainly have to look into the magnesium. Re-creating the explosive diarrhea is definitely something I'm keen to try, as it could be such a key to the puzzle.

With regards to antibiotics, normally I am totally anti-antibiotic - I've lectured many a people over the year on how harmful they can be! Which is why it wasn't an idea I came to likely, however I may also be naive to the risk of Rifaximin. I am aware there is never a drug or medication free of risk, especially with antibiotics, however it was to my understanding that Rifaxmin was a) isolated to effect almost entirely in the GI tract to avoid system effects B) largely isolated to action in the small intestine, which should be largely sterile anyway, as it's largely ineffective in the abscence of bile, which is absorbed before entry into the large inestine, meaning the Rifaximine would have little effect in the large intestine. I figured of all the antibiotics, its likely one of the safer ones..?

 

[canyouhearmeaya]

Hello, and welcome to our Forum @canyouhearmeaya
This is only a thought I just had, and may not be suitable for you at all for many reasons. You know your gut better than I do !
...but have you ever thought of experimenting with a colonic irrigation or something similar like an enema?

Well, it did cross my mind - however:
A) Would these not only be taking effect on the large intestine? Does an irrigation also 'flush' the small intestine?
B) I wasn't sure if they were safe? I thought there was some debate on whether or not irrigation etc was actually safe, as you could flush beneficial bacteria out too, or something to that effect.

But it's not something I know anything about, I'd be totally open to hear about it if its someone you / someone else can educate me on. Given the diarrhea seemed to alleviate the symptoms last year, it did make me wonder if an colonic irrigation might have a similar effect.

 

[canyouhearmeaya]

From the research I've done, a lactulose breath test has a big margin of error and only a 44% accuracy of being able to correctly identify those without SIBO - see below.

Two courses of Rifaximin at 1200 mg a day, allowed me to tolerate antibiotic herbs like Oil of Oregano and Berberine, etc. without feeling miserable from the bacteria in my gut dying off. A small percent of people do get side effects from Rifaximin, however I didn't have any, except a few hours of loose stool one day.

Most bacteria that cause problems live in biofilms. Biofilms are often very difficult to penetrate to kill the bacteria living in them. I think this is one reason SIBO is so often a "chronic" condition and so hard to completely get rid of. If the bacteria living in these biofilms aren't completely killed off, they will multiply and again cause SIBO or dysbiosis.

Having said all that, I've at least doubled my energy and how much I can do physically before I get PEM by treating SIBO and dysbiosis. I do 6-7 hours a day of physical activity without PEM and can walk 30 minutes with very little to no PEM now and I have had ME/CFS for 42 years, been disabled with it for 30 and was mostly bedridden for several years!

Another thing I have learned is that what works for each of us is different. Probiotics help me, as do prebiotics. Some people get much worse taking these things, as you did with the probiotics. So there is a lot of trial and error involved in treating SIBO or dysbiosis as individuals.

I firmly believe it's worth the time and the effort put into it though! Your experience with the relief you had from the really bad diarrhea, should be and sounds like it is, a big green light pointing you in the right direction.

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

Were you 'diagnosed' with SIBO via breath test? It's interesting to see that error rate, it really almost makes you think the test pointless!

It's difficult because it's so easy to want a test result to tell you exactly whats going on, but in many cases you can't neccessarily do that, so you have to go by experience. Which is what i'm questioning now, is this a case where I'll never have a piece of paper that tells me exactly what it is, which I suppose is why I felt based on the timeline, my experience with it etc it may be worth 'rolling the dice' on a course of Rifaximin.

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?

 

[canyouhearmeaya]

Also if anyone has any other suggestions on how to induce strong watery diarrhea - please put them forward! (That's something I never imagined i'd be typing.. -_-)

I have a sachet of Picolax coming hopefully tomorrow, which I may try first. Although looking into it, it seems Picolax may only induce movements from the large intestine down, which may not have the desired effect.

Something else I read up on was Epsom salts? I have a big 1kg bag of Epsom Salts which I'd normally use for a bath.. Do Epsom Salts need to be 'food grade' to consume via mouth? I don't want to consume the wrong kind and do something worse.. They're not scented, but they're also a cheap brand too - which I suppose may be a bad idea? I'd read consuming 30g of Epsom Salts and a few glasses of water can cause a flush.

 

[YippeeKi YOW !!]

I'd read consuming 30g of Epsom Salts and a few glasses of water can cause a flush.

My guess is that it would flush out your liver, your kidneys, and your small and large intestines.

Yes, you should use food grade Epsom Salts. The run-of-the-mill type for bathing and for use on plants could contain harmful contaminants.

I'd be really really careful with Epsm Salts as a laxative. They're difficult to predict and control, and as you've noted, if you have a contaminated batch, could cause additional damages. You mentiond that you have issues with sulfur rich foods. Keep in mind that Epsom Salts are magnesium sulfate and might act in a similar way in your system

Trust me and give magnesium oxide a try. It's beyond effective. It's also extremely safe, since less than 4% of the magnesium gets into your system. It functions because it's a large molecule and isn;t absorbed in either the stomach or small intestine, so it zooms straight thru to your colon, draws in a lot of water, loosens things up and kick-starts contractions (which are mild and not of the gripping kind) and voila!!!

If you want to clear your small intestine, try using the mag oxide, then fasting and drinking a lot of water, then using the mag oxide again. Repeat until you're fairly sure your system is completely cleared.

UNSOLICITED POSTING TIP
Instead of hitting the 'Reply' button on the post you want to respond to, which will post the entire thing in your reply, try highlighting a sentence or a paragraph that will let both the poster and subsequent readers know what you're responding to.

When you do that, a pop-up box will appear with 'Quote' or 'Reply', click on 'Reply', and your highlighted portion will appear in your 'Reply' box, ready for you to answer in the usual way. Otherwise, your answers will get very long, possibly discouraging readers, and will clog up the thread.

 

[canyouhearmeaya]

My guess is that it would flush out your liver, your kidneys, and your small and large intestines.

LOL, this made me laugh. Thanks for the tip on quoting, I suspect I was doing it wrong but I had no idea how to do it correctly - solved!

I'm going to see if I can get hold of some Magnesium Oxide in a local store tomorrow. The Epsom Salts I have I just checked, it does say on the back they are in fact 'Food Grand and Pharmaceutical Grade', and they are 100% Magnesium Sulfate no extras.. But as you've said, SULFATE, so although it might induce diarrhea, I don't know if it'll also make me worse at the same time.

Do you know if Magnesium Citrate is comparable? (I know I can buy this locally), Tablet form though. I know in the states you can buy liquid magnesium which has a laxative effect, but it doesn't seem to be a thing in the UK. More so just tablet forms of magnesium like you'd take as a magnesium level boosting supplement.

What does of Oxide/Citrate is usually required for a 'fire hydrant cleanse'..?

Another two options I thought of are:
- MCT Oil. I have a load of this in the cupboard, I haven't used MCT in months, but I know often people can get pretty strong diarrhea when first using it, if you use too much. I figured I could try chucking back a few tablespoons in a coffee and see if that did the trick.

- Sugar free gummy bears. There was a bit of an internet meme about these years ago, people writing humerous reviews. But from personal experience, I once ate two little bags of these when I went to the cinema many years ago, and I missed 80% of the film because it turned out the laxative effect was strong to say the least. It's Maltitol I believe which is responsible for the effect.

But ofcourse in a case of SIBO, using something like Magnesium/MCT I guess would be preferable as you're not adding in FODMAPS/Fermentables.

Edit:

Just found this:
https://www.boots.com/boots-magnesium-375-mg-60-2-a-day-tablets-10145805

Tablet form, says it contains Magnesium Oxide. Ingredients: (Magnesium Oxide, Cellulose, Hydroxypropylmethylcellulose, Magnesium Stearate, Cross-Linked Sodium Carboxymethylcellulose, Colour (Titanium Dioxide), Talc.)

375mg for 2 Tablets.

Think that would work? How many would you take?

Will this induce 'water diarrhea'? As this is what I had in April 19, it was just like urgent explosive water, no consistency whatsoever.. Which I can only guess somehow flushed my bowel by some miracle.

 

[YippeeKi YOW !!]

Do you know if Magnesium Citrate is comparable? (I know I can buy this locally), Tablet form though. I know in the states you can buy liquid magnesium which has a laxative effect, but it doesn't seem to be a thing in the UK.

I'd avoid mag citrate. It's used over here as a pre-surgery cleanse, it is effective but it's also somewhat unpredictable and a little harsh, particularly in a single dose pill where you can't control the dose/amount.

What does of Oxide/Citrate is usually required for a 'fire hydrant cleanse'..?

You can order magesium oxide from Amazon.india ..... Bulk Supplements is the powder form that I use.

For a mild laxative, I use 3/8 teaspoon, works overnight comfortably and without issue. If you're wildly experimental and can hang around a loo all day, I'd suggest taking it in the morning, which will give it all day to work as opposed to waking you with an urgent need and perhaps an unfortunate accident sometime in the night. Not to mention wrecking your sleep.

You might want to start with 1/2 to 5/8s of a teaspoon (1/2 plus 1/8th teaspoon 5/8ths) and see what that does and then work up from that if need be.

ANOTHER TEDIOUS UNSOLICITED POSTING TIP
When someone posts something for you that you find helpful, or that you just want to acknowledge, hit the 'Like' button at the bottom right of their post. This lets them know that you've seen their post, or appreciate it, or at least know that it's there. Otheriwse, they have to keep coming back to your thread and checking for a response.

Here’s a stellar, brief, video on various aspects of posting on the site, provided to us thru the industry and creativity of Hip. You may have already received a copy in your intro package, but thought I’d post it for you here just in case.

 

[YippeeKi YOW !!]

Tablet form, says it contains Magnesium Oxide. Ingredients: (Magnesium Oxide, Cellulose, Hydroxypropylmethylcellulose, Magnesium Stearate, Cross-Linked Sodium Carboxymethylcellulose, Colour (Titanium Dioxide), Talc.)

It's virtually impossible to convert 375 mgs to teaspoons, but it's roughly about 1/2 to maybe 3/4 teaspoon. I think.

On top of that conversion problem, the additives in that pill are really horrendous. I mean, really ugly.

 

[Wolfcub]

@canyouhearmeaya I am sorry I have kind of lost track a little bit so forgive me if you already mentioned this....but would this watery diarrhea incident cause any marked change?
I am sure you said the last time -it did, but it was very temporary.
I'm a little bit confused -probably as a result of my lack of ability to focus 10% right now (owing to personal weirdness and not feeling too great) But if it's only a temporary fix why go through that? Is there another track to walk down?

Doing what you want to do would absolutely make my heart jump out of my chest....for hours on end....I would get seriously tachy on that method of cleansing.

But re: colonic irrigation -Yes as far as I know, a colonic cleanses the colon only. I have never had one, but have heard from a couple of people I know who swear by them occasionally for a whole new "fresh start" in the bathroom department, and a fresher general feeling (once the adrenaline stops pumping !!).
Of course they do NOT suit everyone, and one would need a very skilled and safe practitioner with many 5-star customer reviews !

 

[Art Vandelay]

The last 2 years the symptoms have been constant, the ONLY period I have had of remission was after a severe bout of diarrhea in April 2019 (spontaneous diarrhea, I think I'd actually dehdryated myself after cutting electrolytes totally whilst doing a super low carb diet), symptoms all dissipated, felt totally human again, but ultimately they came back.

This sounds familiar to me. About 6 months after I first got sick, I had this overwhelming urge to go to the toilet (I was in an airport in Japan of all places!). I can't remember how long I was in there but it felt like hours. My gut seemed to expel everything. There was lots of putrid-smelling diarrhea in particular,

I felt almost like I was remission for the next week until my symptoms came back gradually.

More about my experiences here:

https://forums.phoenixrising.me/thr...parasite-warning-long-post.48377/#post-795387

Over the past 12 months, I have been using digestive enzymes and feel like they have given me my greatest improvement. I still experience the phenomenon of a number of normal bowel movements during the day followed by watery, smelly bowel movements. My CFS symptoms are much relieved after this.

Sometimes I get odd-looking 'gunk' coming out also. One specialist said what I was describing was just mucous although I am not convinced. From the look of it, I wonder if it could be biofilm, parasites or candida. It's all very odd and I can't find a doctor who will take me seriously.

 

[YippeeKi YOW !!]

I can't find a doctor who will take me seriously.

Wow !!! Who'da guessed?

I'm not making light of your predicament relative to Drs, just highlighting something that so many of us have confronted: the absolute inability of most Drs to deal with something that they don;t immediately grasp and can figure out a quick prescription for. I know, first hand, how frustrating, demoralizing, and dismissive that is. Am putting out good thoughts for your finding a more receptive, less reductionist Dr in the very near future, for all the good that'll do. The thoughts, not the Dr ......

I find the info in your post really interesting, and the connection between expelling foul, putrid "stuff", for want of a better word, and a brief improvement in your ME .....

 

[Art Vandelay]

I'm not making light of your predicament relative to Drs, just highlighting something that so many of us have confronted: the absolute inability of most Drs to deal with something that they don;t immediately grasp and can figure out a quick prescription for.

In all my years of being sick, I think I've come across maybe 2-3 doctors who were analytical, intelligent and able to think outside the box. It's very demoralising. Medicine is a wasteland when it comes to original thinkers.

Thanks for your words and best wishes. 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.

 

[canyouhearmeaya]

But if it's only a temporary fix why go through that? Is there another track to walk down?

More than anything, it would help me clarify:
A) It's definitely gut/bacteria/GI related.
B) Give me a sense of hope. Given that I've felt like a totally spaced out apathetic zombie for the last 2 years bar that period, I've at times had a real hard time believing this will ever get better, especially when test after test has come up trumps.

If diarrhea helped clear the symptoms again, I feel it would give me real clarity on the situation. I mean given everything I've tried/eliminated in the 10 months since that period, I find it very hard to believe it wasn't the diarrhea that resolved the symptoms, BUT, there's always a seed of doubt.

Spending a day on the toilet doesn't concern me at all. If it gave me some respite from this, temporary or not, i'm down.

I felt almost like I was remission for the next week until my symptoms came back gradually.

This is it. I felt amazing. I felt like MYSELF again. I Actually cried tears of work on my way to work one day that week (I was working during that period) and it was beautiful. I thought it was all over! I couldn't believe what it felt like to actually feel SOMETHING, to not be in a permanent state of disorientation and brain fog. It was so gutting it came back. But that's why I'm keen to see if I can almost recreate the experience. Heck just a day of feeling normal again if it worked would be amazing.

I'm not making light of your predicament relative to Drs, just highlighting something that so many of us have confronted: the absolute inability of most Drs to deal with something that they don;t immediately grasp and can figure out a quick prescription for.

Yes, my experience with Dr's has also been similar. Most have been almost passive aggressive! If they can't find it with a rudimentary blood test, they act as if you're making it up. Thankfully that gastro I am now working with seems amazing, he's the first doctor who really sat down with me and went through my history, asked me lots of questions and made me feel comfortable fully explaining the situation. Whether or not he knows enough about this area to help I don't know, but he seemed to want to do his best to help.

 

[YippeeKi YOW !!]

@Art Vandelay , @canyouhearmeaya

In all my years of being sick, I think I've come across maybe 2-3 doctors who were analytical, intelligent and able to think outside the box. It's very demoralising. Medicine is a wasteland when it comes to original thinkers.

I've posted a version of this elsewhere, some time ago, but will repost it here because it's illuminating.

First, almost all major, and many of the smaller, med schools in universities are funded largely by BigPharma, who also sets the curriculum and even the course syllabuses. They dole out richly rewarding speaking engagements, grants, and other preferments, and are in almost total control of the research undertaken, which they also fund lavishly. If they don;t like a particular research endeavor, it's gone, because the university knows that it could easily lose all those rich rewards .... This doesn't encourage questing minds, eager to find new ways to treat or diagnose diseases and/ or develop new treatments for them.

Then we come to the second factor: for approximately the last decade and a half, hospitals have been buying out the practices of all the doctors who have privileges at their .....ummm, establshment. This takes a heavy financial burden off the doctor, who can ostensibly continue to operate the same as before, but it also makes it clear who's going to be calling the tune, and it isn't the patient, or often even the insurance company, an issue for a different rant.

And now, third, the cherry on the sundae: In an anonymous poll sent out to doctors, one of the questions was: Did you ever cheat during med school?

The astonishing answer was that either 70 or 75% responded that, why yes, they had. More than once.

This lends a frightening new ominous chord to the old joke: whadaya call the guy who graduates dead last from Harvard Med?

Doctor.

Possibly yours. Or mine.

My gut feeling (no pun intended)

Great pun, claim it proudly, intended or not.

Most have been almost passive aggressive! If they can't find it with a rudimentary blood test, they act as if you're making it up.

I've confronted that, too. Repeatedly. One series of episodes of "It's all in your head, here, have a 3 month trial of (fill in any anti-depressant you can think of, I was offered 6 or 7 different ones by various recklessly unconcerned doctors, so you're bound to hit at least one of them) and I'll see you in a month or so...." almost killed me. Literally.

It's because deep down in the dusty, moldy, 'This Space For Rent' hole where there should be a heart, they know that they're substandard, that they only entered the medical field for the money and prestige, that they dont give a damn about their patient, and they want the simplest, most direct answer to the most obvious illness possible. Thinking is way outside their skill-set, and anyone who presents them with something that requires thoughtful consideration and even possibly some research is a personal affront, almost an assault.

Let me qualify all the foregoing by saying that this doesnt apply to ALL doctors, that there are still genuine, concerned, intelligent healers out there, who really want to help their patients in any way they can. Not just by shoving anti-depressants and various forms of benzodiazepines at them and calling "Next !!!".

The problem is that they're rare, like unicorns, and hard to find. And like the old fairy tale says, you have to kiss a lot of toads to finally find one genuine prince.

Whether or not he knows enough about this area to help I don't know, but he seemed to want to do his best to help.

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. And since like usually attracts like, he may know, or meet up with, another unicorn who DOES know something about your illness.

I'm truly happy for you CYHMA !!!

In the meantime, I think your experiment is brave, and I'm cheering you on from the cyber-sidelines !!!