Oh poo - not something else! - British Lung Foun...

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Oh poo - not something else!

Claudine
Claudine
26 Replies

Apparently I may have candida in my respiratory system. A sputum test first of all revealed 'no bug grown' but then last night I received a 'phone call from my surgery to say the lab had left the sample for longer and have detected traces of candida. This is on top of pseudomonas. (I have Bronchiectasis by the way.) I have an appt. with consultant on Tuesday but GP did warn me that if he decides it needs treating, it will mean hospitalisation. What? At Christmas? Please, does anyone else have experience of this? I do feel better than 3 weeks ago but not back to normal by any means. GP did ask if I have thrush in my mouth (No) so presumably it could be in the upper respiratory tract maybe? There are very definitely two types of sputum coming up now. One is all fluff and bubbles (candida?) and I'm still getting the more meaty stuff which is normal. I'm on Azithrothromycin 3 times a week for pseudomonas. Not much energy or stamina. Help please!

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Littlepom

Hi Claudine, have you been seeing the consultant before and are they a bronch specialist?

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Claudine
Claudine
in reply to Littlepom

I've seen him several times before but, no, he's not a bronch specialist. They are all in large city hospitals and I wouldn't make that sort of journey in winter because of the crowds. In fact I don't think I would want to do that sort of journey any time of the year. He has looked after me for quite a while now. I see him privately. It would take ages to get an appt. on the NHS.

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Littlepom
Littlepom
in reply to Claudine

Hmm. It's just that azithromycin is not very effective against pseudomonas although it is a good drug for keeping other bugs at bay. You don't say that pseudo showed up in the latest test, although once you have it it is always lurking there of course. Candida is a funny thing. When you take abs you can get candida in your mouth and oesophagus and not notice it but it can get into the mucus sample from the spit in your mouth. I can cough up three different types of mucus in one day so that is not much indication of what is in it.

Bronchiectasis is so complex to treat and this is why we need to have a bronch specialist. I have to go quite a long way from Warwickshire to my specialist in Birmingham but although my anxiety levels go sky high it has proved to be essential for me over the 32 years that I have been going there. You really should not have to be paying privately and most private cons are not any more expert in bronch than a general respiratory consultant at an NHS hospital.If you are admitted for IV it should be 14 days and privately that will be v expensive. It is your decision of course but you deserve to source the best.

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Sohara
Sohara
in reply to Littlepom

I agree 100% with everything Little pom has said. You MUST get a bronch consultant , some of the bigger hospitals now do home IV's if that is what you need there are two services one where the nurses come 3 times a day to give you the IV's & one where you do it yourself . The sputum tests they do at the specialist hospitals are usually much better than the doctors . How far is the nearest GOOD respiratory hospital from you? I have a very long journey into my London one but it is REALLY worth the effort, & I am sure you could get a taxi even with the money you pay for private. In the hospital you will most probably have a CT scan & breathing tests which would be too expensive privately . Do think about it

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Claudine
Claudine
in reply to Sohara

I do have private health insurance. I think I pay the first £200 of any claim. I'll see what happens next Tuesday. I intend to take two samples with me - one fluffy and stringy (new mucus) and my usual contribution every day. Thanks for your comments though.

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Pjmf
Pjmf
in reply to Sohara

To back this up I find the specialist hospital in London where I go finds things in my sputum tests that my local hospital doesn’t. I met a lady who had travelled from North Wales for her appt. and was returning the same day. She was really poorly and on her own. I went looking for her after my appt and couldn’t find her. I wanted to recommend this site. She told me the trip was worth it for the care she got in London. I’ve worried about her since...multiple symptoms and living alone and a lovely person.

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Claudine
Claudine
in reply to Littlepom

I hear what you're saying. I just want to get this visit next Tuesday over with and see what comes out of it. I do have private medical insurance - I just make a contribution towards each claim. I know it's a difficult one but I won't even sit in the waiting room at my surgery - I always sit in the Reception area where there's plenty of fresh air. I really hate the idea of buses, trains, taxis etc. and have completely lost my confidence to drive distances since being widowed.

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Littlepom
Littlepom
in reply to Claudine

It's difficult. I will be thinking about you.x

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Oshgosh
Oshgosh
in reply to Claudine

Ido tend to agree with Littleton.

I feel lucky,as I live 40 minutes drive from the centre of excellence.

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Tinker26

I take acidophilus a probiotic to stop Candida ,try a sugar free diet for a while ,I take a 23 billion culture from Holland and Barrett ,and try to get your sugar tested ,it can be a sign of diabetes ,good luck

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Claudine
Claudine
in reply to Tinker26

I'm very touched by everyone's responses. It's very useful. I've made a note about the Acidiphilus. I do already take Bio-Kult but I'm compiling a list of questions to ask him. The sugar thing is also interesting as I was diagnosed pre-diabetic a couple of years ago. Perhaps I need to go back to the dietician because it's a battle between food and losing weight at the moment. Hot chocolate (recommended by her with full-fat milk) is my favourite drink nowadays!

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fantwalk
fantwalk
in reply to Claudine

Yes I was going to say the exact same thing as the above comment. Sugar feeds the candida big time! If you reduce your sugar and keep taking a good bio supplement you will 'starve' the candida and inhibit it's growth, it should make a big difference. Alcohol does the same thing as sugar, feeds the candida.

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Charlie_G

My daughter has cf and has been routinely culturing Candida albicans for years. The schools of thought on it as a possible pathogen are quite split, with the exception of a couple of specific Candida strains that are considered a problem regardless: if it’s definitely in the lungs (which is almost impossible to prove unless it’s cultured from a BAL) or if the patient is highly symptomatic, failing to respond to normal treatment and still culturing Candida when you’ve tried everything else, then treat it. If it’s becomes present on a regular basis without any significant symptoms e.g. you’re culturing it even when relatively well having perhaps initially cultured it during an exacerbation, odds are that the airway is colonised with it rather than being a true infection - systemic lung infection with Candida is pretty serious and usually makes someone significantly ill. Under those circumstances most cf centres don’t treat it, but there does appear to be a link between Candida and chronic pseudomonas, although as with all relationships in the lung biome it’s poorly understood at this point. The incidence of Candida culture within cf patients has been steadily increasing for the last couple of decades and is believed to be at about 30% now, most if not all of whom will also have chronic pseudo.

Unless the sensitivity profile has revealed something specific and rather weird, I’m not sure why your gp is saying you’d have to go into hospital if they decide to treat it: almost all antifungals can be taken orally and have the same efficacy as IV treatment, so IV antifungals aren’t usually used unless a patient is very, very ill and unable to manage the tabs. Posaconazole, which is the equivalent of anti-fungal domestos, is actually considered more effective orally, and my daughter was put on it at the start of her last IVs to tackle both the Candida, on the off-chance that it’s been contributing to months of recent problems, another fungus she’d cultured the admission before in September and in case what we were dealing with was actually a fungal bronchitis. We had tried a course of fluconazole in August purely for the Candida, but she continued to culture it even after a month of that so we decided to skip everything else this time and go straight for the hardcore drugs. So far she’s the most well I’ve seen her in 8 months, so it’s reasonable to believe that the fungal element was actually the main issue rather than her usual bacteria (pseudo and steno).

Hope that helps a little bit, and I wouldn’t be worrying about Xmas in hospital.

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Claudine
Claudine
in reply to Charlie_G

Many thanks for your knowledgeable reply. I have now bought a mouthwash to use each day until I see the Consultant and will then take two samples with me, one normal 'meaty' one and one consisting of the morning clearout which is quite new (and presumably containing some candida). I now have the required authorisation from the health insurance which also covers all shorts of diagnostic tests. I have been reading about the controversy re Orkambi which NICE here are approving as the all-singing all-dancing solution for CF patients but also learn that the US has a much better one and Orkambi is out-of-date already. Good luck to your daughter.

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Charlie_G
Charlie_G
in reply to Claudine

Just a note, but the Candida may be in your trachea rather than your mouth, so mouth wash is likely to make little difference to culturing it - if it was in your mouth you’d have signs of oral thrush. That’s why they usually have to rely on clinical signs to decide whether or not to treat.

Orkambi definitely isn’t that good a drug, particularly compared to some of the others coming along, and is why at no point did a cf consultant publicly step forward to support the calls to make it available on the NHS. It has a benefit for some of the patients that can take it, but not all with the right genetics for it find it works and up to a third couldn’t actually tolerate it in trials. Trikafta has just been approved by the FDA in the US and looks to be far more promising in terms of improving fev1 (15% increase over 4-6% average with Orkambi) but the coverage is misleading generally: these drugs aren’t even close to being a cure and won’t blanket prevent exacerbations, particularly in those already living with chronic infections, they aren’t always well tolerated, the effects are highly variable even in people with identical genetics and they are specific to the mutations people carry. In practice that means that there are 9000 cf patients worldwide, my daughter included, for whom these drugs are of zero consequence beyond being proof of a concept. Of the 92 thousand odd known patients worldwide, only 7 other individuals share the same 2 cf mutations as her, whereas over 50k will have 2 copies of the most common gene, which is why this is the primary gene being targeted by Vertex as it’ll benefit the most people: approximately 80k patients will have at least one copy of that gene. The only thing currently in the pipeline of use to her is gene therapy that would work for everyone with cf, but that is nowhere close to being a reality, so my focus has to be keeping her lung function as high as possible for as long as I possibly can and hope she survives long enough for a universal breakthrough to come.

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Janzo54
Janzo54
in reply to Charlie_G

Very helpful thank you. Can you suggest anything for the oral thrush from taking steroid inhalers please? I use a spacer.

Janzo

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Jaybird19

How long does it take to get specimen of sputum to lab? Everyone carries a lot of bugs in their mouth and a contaminant can multiply at RT

Do you wash your mouth out well before submitting a specimen of sputum..? Contaminants should be diluted out by the lab before culturing a specimen

Christmas in hospital . They do take a lot of extra trouble

The post from Charlie.G is very knowledgeable. Make sure you read it.

Best wishes

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Claudine
Claudine
in reply to Jaybird19

I have received a copy of the report today. It says "heavy growth of URT flora and scanty growth of candida albicans. ". I suspect the problem may be solving itself and the 'new' mucus is much less today. Many thanks. I will endeavour to keep my respondents up-to-date after visit.

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Jaybird19

Sounds doubtful . Heavy growth of upper resp flora sounds like contamination to me. Personally I would have ignored that or asked for a repeat specimen. If you take specimens with you how old are they before culturing . They have to get to the lab too . Where is the lab ?. Is it at a private hospital with own lab on site.?

Label them with date and time and keep them cold . Put this info on the request form too. ^

Charlie G is very knowledgeable. Very interesting. He has done a lot of research.

Best wishes

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crashdoll

Hi Claudine, I’ve cultured candida a few times and was always told it’s contamination. I use mouthwash but I don’t know if mine is coming from further down. It’s worth a discussion with your specialist. Best of luck.

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Janzo54

I too suffer from thrush in my mouth and throat after taking anti-biotics and inhalers its such a pain and never really clear of it.

I thought i just had to put up with it.

Good advice on here but i do like my wine at weekends!

Is it a common problem with steroid inhalers? Any tips about what to use/do i inhale through a spacer but sometimes feel its not as effective?

Janzo

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Charlie_G
Charlie_G
in reply to Janzo54

Best thing for oral thrush from steroid inhalers is prevention, and that basically amounts to thorough rinsing (and spitting out) with water immediately after using your inhaler. Don’t brush your teeth for a good 20 mins minimum afterwards, either, otherwise any remaining steroid particles will get brushed into your gums and teeth and potentially cause issues there.

In terms of treating the existing problem there are a few medications and I believe some are available otc, but the only one I can remember from when small person had issues with thrush as a toddler is nystatin which she had prescribed - it’s a liquid that you swill around your mouth. Worked well for her, and although not proven, we also used acidophilus with her out of desperation for a couple of years (she used to get absolutely horrendous thrush downstairs on IVs, cracked and bleeding) - I’m not one for alternative medicine and treatments generally, but even her consultant couldn’t deny that it worked amazingly well for stopping her issues with thrush at both ends, and although we don’t give it to her anymore, we’ve never had an issue with thrush since.

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Janzo54
Janzo54
in reply to Charlie_G

Thats brilliant! Can i get that at chemists?

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Charlie_G
Charlie_G
in reply to Janzo54

The treatment for thrush can likely be bought in a chemist. Acidophilus to prevent it is a probiotic and quite widely available at health food stores like Holland & Barrett, but you need to make sure you get a product containing a decent dose that will actually do something. We used to order online from a company called Solgar because we wanted powder we could sprinkle into her morning yogurt rather than having to open/try and get capsules down, but they’re a reputable manufacturer of acidophilus products generally. If you google acidophilus for Candida, there are some websites that advise on the kind of strength you need, but as mentioned before, it’s not considered proven - the evidence is anecdotal like ours.

Initially we gave her the acidophilus on a daily basis for about 6 months, then switched to only giving it when she was any kind of additional antibiotic (oral as well as IV). After 2 years we stopped giving it completely, and she hasn’t had any thrush at all since the outbreak she was having when we started giving her the acidophilus. We used daktarin to actually treat the existing Candida, but the acidophilus certainly appeared to work as an amazing preventer after that. We went from two years of regular thrush hell to nothing at all almost overnight.

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Claudine

I only have one inhaler - Duaklir, which my Consultant suggested some time ago because I was on Seretide and he thought it wasn't good for my pseudomonas. I can't imagine a sugar-free diet either. My list of questions for the Consultant next week is getting longer and longer! Heavens above, we have enough to cope with, without a complete change of diet too. Heyho.

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Knittingnora55

I get candida quite often the Dr told me it's like a fungus that grows on your lungs and can be cured with medication never have they mentioned going into hosy I have chronic copd stage 4 which is the final stage I sympathise with you if it's not one thing it's the other hope your soon on the road to recovery keep us updated good luck

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