Hi lovely people, I wondered if any of you might have some info/input with regards to my situation, as the consultants can be blasé or not that helpful sometimes.
*I have bronchiectasis and I get haemoptysis doing anything like heavy lifting, swimming, heavy crying (my Mum just died), no chance of sexual arousal without coughing up blood. Does anyone else have this?
*Has anyone had an embolisation and was it helpful, how was the process?
*I have burkholderia and haemophilus infections at the moment. I had been feeling unwell and had awful chest pain in breathing in, this has eased and now I have bloody sputum since my last bleed on Monday and the doctor suggests either leaving it or taking Ciprofloxacin. I'd heard this had been shelved unless an emergency use due to the side effects? Or should I take a 10 day course?
*I could try Co-Amoxyclav, but this doesn't seem to kill any infections I have, are there any other antibiotics that have worked for you and not caused significant side effects? I react to Doxycycline - which is so frustrating as the 4 days I managed it killed off lots of bacteria.
*Shall I just leave the bacteria now they're not causing me too many issues?
I wish the specialist consultants were more reassuring, he said he had no idea what antibiotic for me to take if I didn't want Cipro'.
Sorry for all the questions, I thought best to get them all down and see what you think.
Thank you so much, in advance.
XX
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Yess1e
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I don't think Co-Amoxyclav, - You can't take Doxy. I wonder could you take Oxytetracycline as it come from the same family I think as Doxy. I liked it but got stuck on Doxy.
You would be better phoning this sites helpline on 0300 222 5800 - They will have an answer.
hi sorry to hear your suffering, after covid I too had terrible cough and haemophilus influenza and was on doxycycline for months without getting any better, I read on this site someone suggested Azithromycin 250 mls
My doctor reluctantly gave me 6 months on this and within 1 month the infection had gone! I still take this 3 times a week still cough up mucus but no infection since! Plus I use a flutter value 3 times daily and my inhalers for my asthma! I find putting small amount of vic on my Chest at night helps me sleep better too!! I do hope you feel better soon just remember you are not on your own going through this terrible time!!
Thank you 27Cleopatra, you're so kind. I wonder if they'll let me try Azithromycin, they keep pushing the Ciprofloxacin as the only thing that will nuke Burkolderia and the haemophilius. He also seemed reluctant to tell me what the bacterial infections were as I wanted to write them down. I'm so grateful for your message as I do feel really alone. X
Hi, they didn't know what to suggest and said I should keep trying to speak to the consultant again or team. I've emailed them and left 2 messages and they're not getting back to me...yet. fingers crossed!
Hi yess1e.I have amoxicillin and prednisolone as a rescue pack for emergency treatment, plus take azithromycin 500mg 3 x a week as I had chest infection on a regular basis but now not so many and kept under control
don’t take the Ciprofloxacin. Your consultant is an idiot he has obviously not read the new warnings on this stuff . They have caused a serious muscle wasting reaction in me that won’t stop. Try nebulising 7% or 3% saline.
I thought this was the case, and that it was in the Green Book or somewhere I saw a document reporting it only for emergency use due to the side effects. The whole lung team at The Royal Brompton see no issue with Ciprofloxacin?!
If these people don’t know the dangers of Fluroquinolone antibiotics they don’t deserve to be treating people. If your on Facebook put in Fluroquinolone toxicity in the search bar.
Oh and I already have muscle wasting I lost 8kg of muscle. So I've tried to explain that for the and the reason I have heart rhythm issues, hypermobility symndrome etc I didn't think I should take it, so he sort of left it up to me to take it or try Co-Amoxyclav but that's not cleared up my infections in the past. I wish I could take Doxycycline and that really works for me, but I can't tolerate the extreme daily migraines it give me.
I've found doxycycline 100mg x2day effective against Haemophillus influenza- it's taken up to 12 wks to clear it,at times.id go see gp face2face & seek their guidance as they're yr primary care.failing that,perhaps a + e as u need to get this infection + bleeding sorted x
Thank you Patk1. The consultant and team at the hospital aren't getting back to me, but they'd only suggested Ciprofloaxcin and seemed like there were no other options, he sort of throw away said I could try Co-Amoyclav. That seem to be their go to response "...if you can't take Cipro' then try CoAmoxi' if you have no issues with it, but it probably wont clear this bacteria..."
Unfortunately Doxycycline gives me really severe migraines daily. I wish it didn't as it's great at clearing infections in me. I only managed 4 days.
I've had this bleeding for over 2 years now. They are talking about an emobolisation, but not until the infections gone...so around and around we go. Thank you for messaging, I do appreciate it. X
I know, I feel awful today. I've got a heart rhythm thing going on too so another reason I don't want Ciprofloxacin. But I've not heard anything so I'll have to wait until Monday and hope I can speak with someone then.
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chest infections
Bronchiectasis and recurring chest infections
Chest infections
Secondary Infections Relating to Bronchiectasis
Bronchiectasis
