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.

[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.

[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