Burkholderia Gladioli infection

[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. 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

[Naturalway]

Have you tried the complaints route. If you don't think you've been cared for properly. If you feeling they havent done their due dilligance.Asked them again to explain in detail why they say its if no importance?

I didn't realise there were such destructive bacteria people could catch. And sepsis is so common !

I've had Psudonomas, and I hear you know what you're going through.

[Yess1e in reply to Naturalway]

Hi, I spoke with PALS and they nudged them, but they called me so begrudgingly, very odd registrar called and was so short with me. She said they've not cultured the B. Glad' and even if they did it's not something they're concerned about. Very odd. I don't have a spleen and had chemo and radiation years ago so my blood is changed, I'm at quite high risk of infection and sepsis apparently. That's why I was shocked they were leaving me when I had a fever and was so ill. They have tested my immunology a while back, they maybe should test it again.

[Naturalway]

Also : Did they send you for a scan a lung health check with the NHS if you are in the UK . What does your primary doctor say. Have you looked at LUNG HEATHMATTERS Facebook group. 🙏

[Yess1e in reply to Naturalway]

Hi Naturalway no they didn't. Though I had a CT AP after coughing up the blood. So that should show them something. Though it was at a local hospital and over 6 weeks ago and they've still not sent results to the GP. I'll have a look at the group thank you so much.

[Patk1]

Ru feeling any better Yess1e x

[Yess1e in reply to Patk1]

Hi Patk1 you're so kind for asking. I have started to feel better and then worse unfortunately. Being on Co-Amoxiclav for 7 weeks isn't ideal and I was getting weird symptoms, like dizziness and breathlessness, epigastric pain and serious exhaustion. The Brompton have said to try Azithromycin for 6 days (3 on 500mg, 3 on 250mg and then every other day of the week) I'm feeling nervous about it, I stopped Co-Amoxiclav yesterday evening as I couldn't cope with how ill I was feeling (different ill to just the infection). Waiting for GP to prescribe Azithro' and I'll see if I can tolerate it. I've asked for a referral elsewhere, but my GP is asking why, since the Brompton wrote them a letter with the Azithro' plan. The Brompton have left me feeling unheard and uncared for (without my having been a tenacious advocate). So I feel like they think I'm difficult or fussy or something.

I'm really grateful for the support from you and others on here. I've felt really quite destitute at times. I'm now having cardiac tests...

Big thanks to you for checking in on me. (Sorry I didn't see your message sooner) X

[Patk1 in reply to Yess1e]

Yr having a tough time.its so hard feeling unheard by yr medical team.id persist if u want referring somewhere else.i hope azithromycin helps you.lot of us,with various lung diseases are on it as a prophylactic.always someone here to support you. Xxx

[Yess1e in reply to Patk1]

Thanks again Patk1 how do you/people seem to fair on the Azithromycin? I'll do a search and see if there are post on it. I think you're all wonderful, truly. So grateful to have found this place. X