Bronchiectasis

[peace012]

I continually feel very ill although I am not producing sputum. I have just finished a course of antibiotics but still feel ill (flu like aching, lethargic, etc.). Any suggestions - I think the doctor is stumped.

[Hidden]

Have you done a sputum test to ensure the antibiotics you have been taking are actually for the infection you have? I know with bronchiectais you always produce mucus but you should be tested regularly to see what infections might be lurking. It maybe that you aren't breaking the back of the infection because you haven't got the right drug for the job.

I can't really believe your doctor is stumped? Have you seen a consultant? I have bronchiectasis at the base of my lungs and was put on permanent azithromycin (a low level antibiotic). Its not for everyone but its really changed things for me.

Good luck - its rubbish when you feel so rubbish isn't it?

Marie x

[pollyjj]

When you have been ill for quite a while I think it wears you down and you can't see and end to it.

I agree with Marie get a sputum test done (ask the doc for something to loosen it up) and insist on seeing a consultant.

I also have bronchiectasis at the base of one lung and have azithromycin mon, wed and friday. I think its fantastic.

Two years ago I felt like you for nearly 12 months untill I insisted on seeing a consultant and within 3 weeks of seeing him I felt like a new person.

*polly

[cofdrop-UK]

Hi Peace

Really sorry you are feeling so rough. I assume since you have a dx of bronchiectasis you are under the care of a respiratory consultant, if not, you would be wise to ask for a referal to a resp cons who who has a special interest in cystic fibrosis/bronchiectasis. You really need monitoring by a consultant. You don't say sweet how long you have felt ill. Your doctor should in no way be stumped by your problem. Although the majority of peeps on the bronchi site bring up varying degrees of mucus, I have heard of a few who have difficulty bringing up very little. I really think you need to go back to see your GP. It could well be that the bugs you are growing are not sensitive to the chosen antibiotics, and as suggested it would be good if you could manage to get up a sample to send off for microbiology culture and sensitivity.

If you have a resp consultant has he/she mentioned mucus thinners, physiotherapy, nebulising bronchodilators and saline or hypertonic, which would be helpful if the gunk is just lurking down there and not surfacing. As already mentioned prophylactic antibiotics like Azith three times a week are very beneficial to lots of bronchiectatics and peeps state they have less infection.

Have you had bronchiectasis long Peace. There is much the medics should be doing and lots we can do for ourselves.

Please see your GP and have a clear view of what you want to ask.

Let us know how you get on. Good luck and hope you feel better soon.

XXX

[peace012]

Thank you all very much for your advice. I have felt like this on and off for 18 months. Originally I felt so ill I thought I would die. I have seen a consultant and have been shown how to do 'huffing' but this produces little or nothing. If there is sputum it is 'deep seated'. I did have the CT scan which confirmed the disease. I get the impression that because I don't look too bad and am not gasping for breath that I am not taken seriously. As we all know these infections make you feel awful. It simply ruins your life. I will approach my GP again and politely suggest the azithromycin at a low dose. It's wonderful to have this forum!

Peace

[cofdrop-UK]

Hi Peace

Thats a long time to feel this bad. I've had brochiectasis for 64 years and believe me I have always looked as fit as a fiddle. So I don't think that is the reason they are not getting your condition under control.

If I were you the first thing I would do is check out what special interest your resp cons has, and if it is not cystic fibrosis and/or bronchiectasis I would defo look for one who has. Check out online consultants at your local hospital or Dr. Foster.

I assume you were shown the huffing by a physiotherapist. Did he/she also talk you through different methods of mucus clearance and did she show you helpful gadgets eg the flutter or the acapella. For what it's worth I prefer the acapella as it can be used in any position, so hellpful if you do postural draining with prcussion. Did the consultant mention inhalers or nebulisers, especially nebulising saline as you find it so difficult to get the stuff up.

It would really be your consultant who would decide re propylactic anti biotics.

The impression I get is that you are not being treated as proactively as you deserve. If you want to stay with your present consultant, you might want to 'phone his secretary and ask if your appointment could be brought forward as 18 months is too long to feel this bad.

Personally I kept getting recurring infections since Christmas and all my samples came back having cultured haemophylus influenzae and were sensitive to penicillin and doxy. Had 2 week courses of amox and doxy and always a couple of days later my temp would flare and I was back where I started. My consultant thought I was colonised with HI and put me on 3g amox for a month followed by doxy for a month and then clarith. HI got a thrashing and is now in hiding!

You really need a proactive consultant and you do have to be your own advocate.

Go for it and get well.

XXX

[solowheelie]

i take carbosistene to help me shift the mucus and azithromycin as a preventative antibiotic both prescribed by respiratory consultant and have had a session with a physiotherapist to teach me exercises to help me clear mucus