Bronchiectasis, Haemoptysis and infections

[Yess1e]

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

[Ern007]

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.

[Yess1e in reply to Ern007]

Thank you. I'll try them tomorrow.

[27Cleopatra in reply to Ern007]

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!!

I hope the team at this site help you too

Best regards

[Yess1e in reply to 27Cleopatra]

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

[Yess1e in reply to Ern007]

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!

[Ern007 in reply to Yess1e]

Try ringing Consultants secretary, that's what i do or GP.

[Yess1e in reply to Ern007]

Hi, thank you. I did call the secretary and the specialist nurse and emailed them too. No response yet :/

[Ern007 in reply to Yess1e]

Normally they will, if not chase them up, my daughter did and it worked.

[Yess1e in reply to Ern007]

I'll try again on Monday, they'll not be there at the weekend. Not feeling good. I've got heart rhythm stuff going on too.

[Ern007 in reply to Yess1e]

I have AF and SVT - not pleasent is heart ryhthm problems. If you still feel the same Monday, may be a good idea to ring GP.

[Yess1e in reply to Ern007]

Hi, yes I'd thought that. It's really annoying me now as it makes me feel scared. Problem is, I'm in another area 2hrs away from my GP, as my Mum died. Thank for your support.

[B0xermad]

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

[Yess1e in reply to B0xermad]

Hi, thanks for replying. I did discuss taking Azithromycin 3x p/w for 6 months. But he wasn't that forthcoming about it and said I can if I want. I haven't yet though.

[Jack70]

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.

[Yess1e in reply to Jack70]

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?!

[Jack70 in reply to Yess1e]

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.

Colour

[Yess1e in reply to Jack70]

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.

[Yess1e in reply to Jack70]

What other antibiotics other than Ciprofloxacine or Doxycycline do you know of that might be helpful and way less harmful?

[Jack70 in reply to Yess1e]

Possibly azithromicin or clarlithromicin or maybe clofazimine. I’m no expert but I do know tens of thousands of people have had there life destroyed by Fluroquinolone antibiotics. Join the facebook group and ask the people on there for there experience

[Yess1e in reply to Jack70]

Thank you. I spoke to the registrar again today and he said the only options were Cipro for the Burkholderia or Co Amoxy for the Haemophilus, that CoAmox won't clear the Burkholderia. He said I'm not I'll enough for IV. 🤷‍♀️

[Izb1]

So sorry to hear about your mum Yess1e, that can't be easy along with all your health problems. I would ring the helpline and see what they say x

[Yess1e in reply to Izb1]

Thank you so much, it's been hard. I've now called the helpline.

[Patk1]

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

[Yess1e in reply to Patk1]

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

[Patk1 in reply to Yess1e]

Whichever one is chosen u need to get started on and get on top of infection,asap xxx

[Yess1e in reply to Patk1]

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.

[Patk1 in reply to Yess1e]

Do u have a rescue pack u can start

[Yess1e in reply to Patk1]

I've only got CoAmoxyclav. The consultant said that wouldn't help the Burkholderia, but try if I want to...meanwhile my ectopics heart beats have been going on for over a week now, they're scary. I'll try everyone again on Monday.

[Xlizixx in reply to Patk1]

Yes - doxy 2 a day worked for me as well.

[Yess1e in reply to Xlizixx]

It is really helpful but it have me awful daily Migraines. So frustrating.

[Patk1]

I hope you've got appropriate treatment by now x

[Yess1e in reply to Patk1]

That's kind of you Ptk1, not really no. I've been told to take Co Amoxyclav for the Haemophillus and that it won't help the Burkholderia. He was very nice about it but...

[Patk1 in reply to Yess1e]

I'd get started as HI can turn nasty thn address the other xxx