Hello everyone out there

Can anyone tell me why my symptoms have recently changed. I've been taking medication for bronchiectasis for the last two years having almost constant infections. I have recently stopped coughing, have no mucus and I'm only a little bit breathless. I stopped taking my ab on Sunday as I had a reaction to them (thanks to folk on here pointing that out to me) My symptoms now are extreme neck pain, my lungs are painful. I feel a lump in my throat which makes me keep swallowing. My voice is hoarse and I also have to keep clearing my throat and sometimes have mucus from there which is quite clear. My lungs feel like heavy weights! Feeling more exhausted than I did before! Thank you in anticipation :)

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  • See your GP immediately. You still have Bronchiectasis. My husband said (not the most sympathetic person) who does that remind you of "me". upper resp. infection. Maybe you need a change of ABs. I am no expert I am seeing my GP on Monday re my very bad management of the condition. I have had all yr symptoms except pain in neck. Had an inf with clear mucous, but do keep doing your physio. I was in denial have no help except good GP and BLF helpline. I spoke to a nurse who seemed to know a lot about Bronchiectasis Maybe she is still there, she was very helpful to me. Most nurses think you have bronchitis (exc spelling). Hope you get some help. I think me giving advice to anybody actually is ridiculous as it was only going on to the Bronchiectasis help web site, seeing sputum colours made me realise I was not having 3 infs a year but probably had a low lying inf most of the time! Anyway, good luck and hope you feel better soon KatieJJ

  • Thank you for your response Katie, I just found it all totally strange that my symptoms have changed like this! The pain in my neck is my main worry as it stops me doing practically everything. I am getting treated at the RBH on Wednesday so I'll probably just wait until then as my doctor is about as useful as a chocolate tea pot! I have new ab to take if I'm desperate over the weekend. Are you getting treated for your ongoing infection? Sounds like you should be going back to your consultant like I did! Take care and Thanks again Katie :)

  • Do not have consultant! Prefer it that way at moment. Hav e just finished with hospital for other things. Take care Katie.

  • I would agree you need more atibiotics that you dont have reaction with .. my doc said i had virius and antbiotics would not help .. but thay did help thus my doc was wrong

  • Yep you're right Daz I took one of my new ab earlier after chatting to Katie above and already the pain in my neck has subsided greatly, the weight I felt in my lungs has also eased off a little! I have no faith in my Doctor and hear horror stories about doctors not diagnosing illness's that are fairly obvious even to a none medical person. ( this happened to my friends 38 year old daughter who now has advanced stages of MS) it's so scary. I get more sense out of people on here! Lol thanks for the advice Daz :)

  • Hi is shocking a know first hand about gp and there sloppy tricks .. after all its not there life there taking chances with .. a can understand docs not wanting to give us antibiotics as thay dont want us to build up a resistance but if needs must thay should not piss about .. Was it striods pills you had bad reaction to ... Anyway glad your feeling better cheers all the best :)

  • It was ciprofloxin I've been taking them for two years as my doctor gave me open prescription for them because I was having back to back infections. I had pneumonia once too. She ignored all this so I got I touch with my old consultant who agreed to send me to RBH where I saw prof Wilson who told me I've had a pus sump, and partly collapsed lung since my bronchoscope in oct 2011, said I'd 2-5 years left if I carry on like this!!!!! Unbelievable! Anyway am pleased to be going in on weds to have 10 day IV ab and possible surgery! And yeah feeling much better now Thanks Daz :)

  • That is bad ... is shocking but at least you did right thing yer i have had infections like for ever defo is the pits my docs or lung specilist tells me nothing surpose thats what happens when you make complaints

  • Yep it is shocking Daz! Where do these doctors train!!!!! You sound like you're having a rotten time of it too. Hope things improve for you :)

  • Hi cheers

  • Hi Kissi

    I have bronchiectasis, my neck is so painful I can hardly move sometimes. The pain radiates down my arms, it's awful. I've got a lump in the side of my neck, I went to the doc's and she immediately phoned the one stop clinic at the hospital. when I went they put a camera down my throat and did a good examination. The consultant said he thinks the lump is muscle, however, i'm just waiting for a scan. He said that the problem with my neck could be all the coughing. I rub Tiger Balm into my neck, it does give me some relief.

    Hope you feel better soon xxx

  • That's interesting as I had a lump on my thyroid about 7 years ago, had a biopsy and it came back benign. I still have the lump but haven't had it checked out since then. I was diagnosed with an underactive thyroid beginning of last year! ....I'm not coughing at the moment so it can't be that with me :( I will try the tiger balm though, and good luck with your scan, hope it all gets better for you. Thank you for your response :))

  • Good luck to you Kissi and get well soon. Thinking of you. xxxxx

  • Thank you so much sassy :)

  • Kissi, your post was ringing bells for me as I took cipro as drug of need for many years. I have bronchiectasis.

    One of the weird, difficult to explain, things that happened whenever I was on cipro was that 2-3 days after starting the course my lungs stopped sending up sputum and my cough was unproductive. I carried on and a few days later with pysio I began to cough up the nasty stuff. Then in the days after finishing I always 'cleared out'.

    So I learned it is important to do my physio even when it seems nothing is there, to complete the course of meds and to continue with good physio after finishing course to clear out residual rubbish.That heavy feeling in your lungs is probably the rubbish you can't get out. Do you nebulise saline?

    I see from later on you are going into hosp for IV abs. Have they identified the bug that is causing you problems?

    I often have to go into hospital for IV abs as I have a bug that can be resistant to cipro which is the only oral med for this bug, so if cipro doesn't clear it up...in I go. 14 days IV - not my idea of fun, but it has to be done. I start to feel better by day 3 so - lots of newspapers, my kindle, puzzle books and, hopefully, a chatty neighbour. Oh, and some lovely student doctors to chat to!

  • Hi happyfeet, that sounds like really good advice so thanks for that. And the nebuliser I hardly use because I'm not breathless at the moment. Re the bug it states in my letter that I have had various bacteriology results including haemophilic influenzae, pseudomonas aeruginosa and mycobacterium avium complex! So basically I don't know!! I just hope they can sort me out as I feel like death right now, I haven't felt this poorly since my diagnosis. :( .....as for something to do I'm hoping to catch up on my art and design course work as I'm way behind. Maybe I can draw some of those doctors and nurses and add them in my sketch book! Thank you for taking the time to reply and for the advice. It's much appreciated. :)

  • Well you have certainly been through the 'gold star' list of bugs! No wonder you are feeling poorly. Cipro is the best for pseudamonas but I cant remember what is best for others. I had pseud then Haemopholus Influsnza then Strep Pneumonae one after the other 2 yrs ago. As one was killed off the next multiplied into the space!!!

    You do know that you can nebulise saline nebs to help loosen sticky lungs and get rid of gunge. A nebuliser can be used for lots of different meds not just ones for breathlessness. I never used to use my nebuliser much until someone told me to try saline nebs when my lungs were tight.

    I'm sure a good dose of IV abs will have you feeling much better in no time. Don't forget to do your physio while you are in hospital - I find the physiotherapists don't do much these days on the wards.

  • Hi happyfeet, well I didn't know about using my nebuliser for anything other than helping me to breath so that's very good to know. It's unbelievable how little I'd been told by the medical bods!

    Yeah I really hope this IV ab will sort me out. And this prof Wilson guy said he'd like to take out the partly collapsed bit of my lung so I hope I respond well to The IV and 'rigorous physiotherapy' so looks like I'm going to get plenty of Physio! I will let you know!! Lol

    It's funny but I'm feeling a lot better today so much happier about all this, I think it's so much easier to feel positive when the pain isn't so intense. Thank you for your replies happyfeet. You take care and keep well :)

  • Hi, I'm on Azithromycin and Ciprofloxacin. I have a sore neck and my cough has practically stopped, I have no yucky mucus but have clear mucus and am still breathless. I can't believe how similar our symptoms are!

  • Hi lesleyanne. I thought I was managing this condition for so long and so to find out all this time I wasn't was so shocking to me. I hope if you're having as many infections as I am you insist on going back to your specialist consultant for more investigations. Take care :)

  • Thank you, you keep well. L A xx