Probiotics and candida die-off
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Anyone know anything about this? I think I've been suffering from it.
I'm 71, had Sjogrens for about 20 years, was in total remission till I had what could have been a very nasty accident about 6 months ago. I escaped largely unhurt but was absolutely terrified, and the shock brought on a flare-up a few weeks later. Dry eyes, RA, polymyalgia, tiredness and a bit of peripheral neuropathy.
Have also had all sorts of candida infections all my adult life - it pops up everywhere. Have tried everything but nothing kills it permanently. My doctor once put me on a six-week course of a systemic anti-fungal which worked a treat (gave me beautiful toenails too!) but it lasted less than a year.
I saw my GP about the flare-up symptoms and he surprised me by talking about "leaky gut", which he thought was responsible for a lot of auto-immune conditions. Though open to alternative explanations I've always been a bit sceptical about that one. Anyway, he sold me on it, asked me to try out the latest all-singing, all-dancing pre- and probiotic preparation, newly arrived in Europe from the US. He seemed to think this one really was the works. Begins with "N". If anyone wants the name I'll message you privately.
I duly started taking the stuff in the recommended dose - one large sachet of powder per day mixed with water or yoghourt. It had no apparent ill-effects till two weeks later, when the constipation suddenly kicked in. I don't just mean absence, I mean absolute rocks! Haven't had anything remotely like this for 40 years and was frankly getting worried about the ability of my elderly pelvic floor to cope with it!
I researched it, discovered this is a possible effect of rapid candida die-off in response to effective probiotic or drug treatment, though it looks as if this opinion might be controversial. The theory is that in their death-throes the candida organisms start pumping out massive amounts of toxins. (Revenge?) Decided to stop taking the powder for a few weeks. Then all hell broke out.
That was two weeks ago. Since then all the Sjogrens symptoms have got much worse and I've been exhausted. I don't mean the usual Sjogrens fatigue, I mean like a zombie. Mental symptoms too - brain-fog, depression (convinced I was going to die), depersonalisation etc. Started coming to a head three days ago when I got lost walking back from the office on a route I always take. Ended up sitting on a park bench, crying because I didn't know how I was going to get home. Finally got out of it but was scared. This isn't me at all. I thought it was the onset of dementia. (And it still might be, of course.)
I thought that was bad enough till yesterday, when I did something absolutely terrible, created a situation that might not even be recoverable by going off the deep end over a simple misunderstanding. I did further research this morning, and discovered this kind of thing could be caused by candida die-off too.
This morning the constipation finally cleared and I also think I'm mentally better. Had a lot of admin to get through in different parts of town today. Still getting brain-fog and feelings of unreality but managed to remember where I was and what I was doing, and didn't bite anyone's head off. I think too that the events of yesterday gave me a jolt that's brought me back to myself. In the course of today I've asked a couple of friends (other than the ones I frightened yesterday) whether they've noticed anything odd about me lately and got cautious answers starting with: "Erm... well...".
I'm guessing/hoping the mental symptoms will wear off, like the constipation. I'm due to see my doctor next week for my blood results and will ask him about this. It may be that I can risk re-starting the probiotic, but in smaller doses. I'm thinking half a sachet every other day rather than one a day.
I'd be interested to hear whether anyone else has experienced this kind of thing.
0 likes, 6 replies
pamela87113 lily65668
Posted
I have also experienced the complete change of character. I am normally quite placid and have a very even relationship with my husband of 48 years. During one collision of triggers, I threw something at him - I am not sure which of us was the more shocked!
More recently, post op I have suffered the extreme dryness in the mouth eyes and gut, affecting the digestion and causing constipation (not something I usually suffer from).
My aid to recovery is always to stop using as much medication and cosmetics as I can. I have natural probiotic yoghurt every day and drink plenty of plain warm water. It takes a while but things do improve - till the next time!
pam_87693 lily65668
Posted
lily65668 pam_87693
Posted
You make me realise how fortunate I am, in never having had a serious illness in my life. My SS has rarely troubled me all that much either, and had been in almost total remission for about six years in the run-up to the accident last spring. Even now it's bearable. I have comparatively minor problems with dry mouth and eyes at the moment, and even the RA flare-up seems to be dying down a little. The assorted muscle pains are my main problem now, as they tend to wake me in the night a lot.
Well, no - my main problem now is how to recover my dignity and salvage a couple of friendships after my extraordinary outburst of two days ago! Looking back, it really seems it was someone else, not me, who lived through the events of the last week or so. That's why I'm inclined to believe I might have been under the influence of a severe candida die-off. But you're quite right - this episode at least proves that probiotics are capable of bring about a major change!
The crippling fatigue and dark thoughts have subsided now, leaving only the terrible embarrassment to cope with. I think I'll wait another couple of weeks, then start back on the probiotic regime, but this time taking it more slowly. I was taking the recommended dose of one sachet per day, but I suspect it might make more sense to re-start on, say, half a sachet every two days, then build up from there. This may turn out to have been a valuable learning experience.
Thanks for the suggestion of joining BSSA and/or British Sjögrens. In fact, I'm not a UK resident (and not sure if I'm even still British!) and I'm not on any social media sites. But I wish you every success with British Sjögrens, which I think you may have founded yourself.
pam_87693 lily65668
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scoobieworld lily65668
Posted
i have suffered candida for twenty years and so would appreciate if you could email me the name of the probiotic you are trying
thanks
jane x
lily65668 scoobieworld
Posted