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Rare bug with Bronchiectasis

Huffs profile image
20 Replies

I am just coming to terms with Bronchiectasis and had a pseudomonas infection too. Today my GP rang me to tell me I no longer have pseudomonas but have more rare bug called achromobacter which is equally difficult to get rid of. I cannot seem to find any information about this so I wondered if anyone knows anything that can help me understand how it will affect me and what the link is with Bronchiectasis?

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Huffs profile image
Huffs
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20 Replies
Pentreath profile image
PentreathVolunteer

Don’t know anything about achromobacter but do know that bugs just seem to love bronchiectasis lungs. Bad luck for you to get two in a row and hope the medics can find a treatment to get on top of the current one. You have probably been advised of the need to keep your lungs as clear as possible and I hope you have been or will be referred to a respiratory physiotherapist to advise on the correct way to do this.

Huffs profile image
Huffs in reply toPentreath

Thanks for the reply and advice about physio. I am still waiting for more test before I will be able to access this support but think, based on what you’ve said that I need to push for it sooner rather than later.

Pentreath profile image
PentreathVolunteer in reply toHuffs

Having read another of your responses please do not think that the bronchiectasis/asthma combo could shorten your life. I am have both and am 78 and still living quite a full life. I think it does make it a bit harder to discern what is going on if things are not going well - is the asthma or is it the bronch that is causing the trouble; I still can’t tell sometimes but have a great GP practice who are very supportive and take an active approach to sorting things out for me.

Huffs profile image
Huffs in reply toPentreath

That’s very encouraging news- glad to hear you are hail and hearty at 78. I think presuming my asthma was the problem and not being more vigilant was the asthma practitioner/ gp error. They were not responsive enough to a purulent cough that would never go.

Thanks for this

Try looking up non-cystic fibrosis achromobacterial lung infections

Quite a bug you have guess might be like mine re low immunity and these being opportunistic.

Defo prefer my RAOULTELLA one than yours.

Huffs profile image
Huffs in reply to

Thanks for reply- not hear of your bug either! Seems there are more horrors out there than I realised and I’m probably susceptible to any of them. Not looking forward to a future coping with these.

Several references coming up on google search - achromobacter, bronchiectasis uk and also about achromobater in bronchiectasis, uk. Hope you are feeling better soon.

Huffs profile image
Huffs in reply to

Thanks for trying to find something. So far only found info for medical world not lay person. BLF could perhaps help out here?

illawarra profile image
illawarra

Huffs I feel for you having Acromobactor. It was a shock to me when I was diagnosed with it earlier this year. I also have had Pseudomonas. When I had the sputum test there was only one antibiotic that mine was responsive to and I was allergic to it. By the time I got the sputum test result the doctor said to me "you do not look sick enough to go to hospital. I have never treated it before" and sent me to my respiratory physician. Given my situation with no real option, I dosed up on natural supplements and thankfully in my last few sputum tests it has not shown. Did your doctor tell you what antibiotic you could take? With bronchiectasis we seem to be vulnerable to all kinds of bugs. It is most important to clear the mucous in the lungs.

Huffs profile image
Huffs in reply toillawarra

Thanks for your response and interesting to find someone else with this bug. My GP is going back to bacteriologist for more info but thinks it might be treatable with high dosage of ciprofloxcin as have responded well to this so far. Plan for now though is to do nothing as I feel quite well at the moment.

illawarra profile image
illawarra in reply toHuffs

That is good that you are feeling well and do not need to take anything. Good too that perhaps ciprofloxacin may help if needed. Best wishes for continued healthy days ahead.

simplesprout profile image
simplesprout

If you dont mind me asking, which antibiotics were you given to treat the pseudomonas, and i hope you have success with your new little bug.

Huffs profile image
Huffs in reply tosimplesprout

I have been on ciprofloxcin for 2 weeks. I think it is unclear whether I had pseudomonas and it has now cleared or whether it was achromobacter all along and was misdiagnosed

Huffs profile image
Huffs in reply toHuffs

Hi simplesprout,

It now seems ciprofloxcin did clear up pseudomonas but once gone revealed achromobacter. Hopefully this is good news for you?

I am sorry, I have never heard of achromobacter, but I do know some about bronchiectasis, my husband was diagnosed with it about 6 years ago but refuses to do anything to manage it. I think he thinks if he refuses to acknowledge it, it doesn't exist. I am glad that you are taking care of yourself.

Huffs profile image
Huffs in reply toFeelingblessed2013

Thank you, I am quite determined to do whatever I can to improve my outcome as this bug+asthma+Bronchiectasis seem to be a poor combination in terms of life expectancy. I’m not going to give in as still have lots of life plans as well as a working life I enjoy

Inamoment profile image
Inamoment

It sounds quite like ntm, my latest illness, but rarer. Ntm is multiple antibiotics for a year or so. The bateria are all over the place but only cause an infection if you are poorly in the first place. I'm not due to see the consultant for a while, i shall ask her when i do unless it gets dramtic

Huffs profile image
Huffs

Thanks for your reply. I’m not really sure what ntm is - is this another bug I need to be aware of?

Inamoment profile image
Inamoment in reply toHuffs

Nontuberculous mycobacteria not really, but it is a very common bacteria that inflicts the poorly and is a bugger to fix

Huffs profile image
Huffs in reply toInamoment

Sounds like I need to do more research into this - all these bugs seem a nightmare to treat. All very confusing.

Thanks for suggestion

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