Probiotics and candida die-off

Allergies, blood and immune system
1

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 ■■■■ 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.

2

Not exactly Lily but stress is nearly always a trigger for many things.  12 years ago I was admitted to A & E seriously ill, they never discovered what bug caused it but suggested that something that could have been in my gut for years flared up when my immune system had to be diverted to cope with 3 very stressful incidents in my life.

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!

 

3

Hi Lilly I think you GP may well be right! I have Serogetative and lip biopsy negative SLE! I'm on MTX and Sulfazalazine. Age 68! I have like you been ill all my life, it's a bit of a horror storey actually. It started with being hypermobile. That was from my dad. From my mum I had PCOS and Psoriasis and I have been up to the top neurology hospital in the UK to prove this. If your a BSSA member then you will read about in in the next year's magazines! I am Pam from British Sjögren's a FB site. I really do feel it would be helpful to join both the BSSA and British Sjögren's. As you obviously have Sjögren's and neurological issues. Your choice obviously as we have talked many times. BSSA Tel: 01214780222 talk and ask for Heather. I am Pam Newman and please do join us on British Sjögren's. My life started with having mouth ulcers as a toddler, then Measles and after that life just became worse! Then I developed PCOS at 11 and was told I would never have children age 15! I did, I had 4.5 babies. The first was a GP error the second a cot death. Re the candida all my life from 12! I won't go on and terrify the life out of you but believe me I DO understand yout problems. However I think the drug your talking about might if it's a probiotic  could work. I am Coeliac Negative but have colitis so Sulfasalazine and my life time of IBS stopped the moment I started taking Sulfasalazine. I have Primary SS, secondary SLE (unconfirmed by rheumatologist but confirmed by neurologist) Psoriasis, PsA, hypothyroid, EDS III, fibromyalgia and POTS! 

4

Oh dear, Pam - you've had a really hard time!

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.

5

Yes I did Lily. I am interested in your product if it is a powder not a tablet! The reason I say that, is the tablet in whatever form is NOT useful in SS/SLE! I was told that drugs for MS and SS/SLE with neurological problems that are similar, can make the SS/SLE worse. Even a couple not starting with N or its low dose form can make (both tablets) used for MS can make SS or SLE worse! Dr. Hagen mentioned a couple but she said even those will make your dryness worse! As I have small fibre neuropathy, heart OK relatively low BP, but slight POTS plus sadly all the same troubles you relate to, change in personality and a short fuse, I think it is disease! In my case I think the SLE is affecting my brain. I have tinnitus and I can smell things that aren't there! I came into the lounge and smelt soot but we haven't had an open fire for 2 years due to mild winters and the chimney has been cleaned!!! Lilly wherever you live you are most welcome to join BS the BSSA were saying they accept people from other countries at the last conference, something I didn't know! Obviously the neurological complications of SS/SLE are still little understood which is why I want these brought up at the next conference. I am going to suggest neonatal heartblock. Migraines, EDS as of course that hasn't really been in the medical eye for 50 years. Also endocrinology, Psoriatic pathway (still not really understtod unless you live in Canada (Toronto). That should make the next a very interesting conference. It's in Swindon UK for any who are interested, in October. Swindon is a very pleasant town and as the conference will be on a Saturday, there are plenty of hotels all prices, and for the ladies an outlet mall and for the gents a railway museum! 

6

Hi lily

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

7

I hope Pam and Jane can get hold of the product. And I'll be very interested to hear what kind of results they get if they do decide to try it. I'll probably start again around mid-November (but slowly this time!) and keep you posted.