Burkholderia gladioli and Bronchiectasis

[Yess1e]

I have this infection and I feel I've had it for a long time and that it increases and then I become unwell. I went into hospital at Christmas and had IV Antibiotics (Tazocin) for 10 days.

It took a long time to see any change, typically the right Antibiotics make me feel a lot better by 3 days. By the last day I told them I was feeling worse again and coughing up stuff. They discharged me saying I was fine. I progressively got worse and very unwell. (Fever, coughing up blood, malaise, fatigue, breathless, night sweats, no appetite...)

The hospital have said there's nothing they can do, they also said they had no culture to go on. The GP cultured Burkholderia G, hospital say it's not a bacteria of concern. When I look this bacteria up it says it very much is.

I started Co-Amoxiclav as I was really worried at how ill I was. 3 weeks of it and the mucus reduced, my appetite came back and I couldn't stop eating (first time in years), gained weight, no fevers, slowly recovering though I can tell it's still there lurking not cleared. The hospital are still saying they're not prepared to do anythign unless I culture something else. that Burk' G is not a concern.

hospital said reduce Co-Amoxiclav to 2x per day (not 3) and the mucus and coughing, lack of appetite is back!

I tried a private consultant who I could tell, didn't want to step on toes, so he just took my money and said bye.

I've had cancer multiple times, I know what feeling unwell is like and my body. I feel abandoned. I have no spleen and had a blood cancer so my immune system is impaired.

This is not living I can't do anything unless I keep taking Co-amoxiclav.

**Any advice, help, thoughts, guidance, greatly appreciated as I'm absolutely stuck and desperate**.

Thank you so much in advance. X

[Swizzy]

I cannot believe that you don't have a specialised bronch consultant. It is obvious that you did not have the right antibiotic when you had IV. Tazocin is ineffective in me because it is useless against pseudomonas which most of us bronchs have. The fact that nothing shows up in the lab tests is typical of bronch. They often don't grow the bacteria for long enough and so think that nothing is there. With your co morbidities you need much better care from people who know what they are doing than you are getting. I know it is exhausting but you have to be pro active. Look for a bronch expert on the website of your nearest big teaching hospital- not a general respiratory consultant. Take the name to your GP and insist on a referral.Your condition is not being managed properly and everybody is failing in their duty of care.

[Yess1e in reply to Swizzy]

Thank you so much Swizzy I really appreciate your reply. The problem I've got is I'm being 'cared' for by the Royal Brompton hospital. The doctors there are supposed other be one hospital that is an authority on all this. I've considered a referral to the Papworth as I'm not getting anywhere. It's been really hard mentally/emotionally too as I'm really limited in what I can do when I'm so unwell. I'm limping along now on 2x per day Co-Amoxiclav until the Brompton say they can see anything wrong to treat. They've given me some sample bottles and if they can't culture anything they've said there's nothing they can do. I've not been able to grieve my mother's death end of august because if I cry my lungs bleed. I've told them this and they're not bothered. I know if the infections were managed I might be able to do some crying...

Thanks again for being so caring.

[LissacFrance]

Quick look up and found this:

However, during the latter part of his inpatient stay, the patient developed pneumonia caused by B gladioli. The isolate of B gladioli was sensitive to meropenem, levofloxacin, and trimethoprim/sulfamethoxazole and intermediate to ceftazidime. He was treated with meropenem and levofloxacin.

And,

Antimicrobial agents that are effective against B. cepacia complex in vitro include trimethoprim-sulfamethoxazole, ceftazidime, carbapenems, ureidopenicillins, fluoroquinolones, minocyline, and chloramphenicol. The antibacterial activity of cefoperazone/sulbactam is comparable to that of ceftazidime against B.

Do pass it onto your GP and lung consultant.

Try to have a good day, and stay +ve. Chris.

[Alberta56 in reply to LissacFrance]

If you can find this information easily, why can't the people who are supposed to be treating this lady????

[LissacFrance in reply to Alberta56]

Ah..... you need to ask the people😊

[Alberta56 in reply to LissacFrance]

Could it be they don't want to.

[Yess1e in reply to Alberta56]

I literally have no idea why they wont help. They repeat constantly that they haven't cultured anything of concern, then my local GP did (B. Glad') I told them and they said nothing to worry about. That they wanted to culture in their lab and if nothing found, go to my GP for infections or A&E...

[Alberta56 in reply to Yess1e]

You are obviously more vulnerable than even the average lungie, let alone a normally healthy person. That means you should get greater care than the average person. I can't understand why your so-called carers don't see this. I would have thought green sputum means that there is an infection to be dealt with. I hope and pray you get help soon.

[Yess1e in reply to LissacFrance]

Thank you LissacFrance I also found all sorts of studies around B. Glad. They said it's not a bacteria of concern and that the professor at the hospital wasn't bothered by it either. They said only B Cepacia is of interest.

I also do react to a lot of antibiotics/can't tolerate. But they've not tried any other IV's which it seems some people tolerate better than oral. Not sure why.

I reacted to one tablet of the Co-Trimoxazole which is the Trimethoprim and sulfamethoxazole. But I said if they want I'd try it again. She said no need.

[PaperQueen]

You poor luv, really sounds like you are not getting proper care from either your hospital or your GP. Can you not get a repeat prescription for Co-Amoxiclav as that seems to work? I think you are going to have to make a real nuisance of yourself to get any attention, but please don't accept their shoddy care. As if life isn't difficult enough when you're feeling unwell! Do hope you get what you need to get better. Sally xx

[Yess1e in reply to PaperQueen]

PaperQueen Your reply nearly made me cry, thank you so much for being so lovely. I've tried pushing and speaking to PALS too. I've now got some sample bottles but if they don't culture anything they wont help. I've been on Co-Amoxi' now for weeks, it is helping suppress things, thank the lord, as I was SO ill. It's not cleared though, still got bright green stuff coming out.

I'll try another hospital in a few weeks if they don't culture anything or help.

[PaperQueen in reply to Yess1e]

It's so exhausting when you struggle to breathe without the people who could help you making life even more difficult. I do so hope they do culture your samples so you/they can know how best to help you and knock this nasty episode on it's head. Hugs. xx

[watergazer]

oh dear. Poor you. Sounds like you need to see a bronch specialist x

[Alberta56]

I hope you soon find a way out of this intolerable situation. You are not getting the treatment you need. xxx

[islande]

I'm so sorry the nhs is doing this to you.i really hope you recover.can your gp give you the right antibiotics best wishes

[Patk1]

In yr position,I'd speak to gp to gey more antibiotics,as you can't risk infection getting worse.your being treat v badly,as many of us have. I'd also do as Swizzy suggests + look for a bronchiectasis specialist .keep us updated how you are.x

[Yess1e in reply to Patk1]

Thank you Patk1 you're really kind. I've got some sputum sample pots, finally. They said to contact them in a couple of weeks if I've not heard from them and see. But since they took over a week to send the pots, it'll have to be longer. This whole situation has really impacted my emotional state and I simply haven't been able to understand why one of the main lung hospitals in the UK aren't interested in helping me. They act like me having the 10 days IV was a grand gesture. They said it was because I was so unwell, but they keep shoving it in my face. I told them on day 9 and 10 I still had infection and didn't feel right...Anyway, I'm really grateful for your words and caring. X