hi, I don’t post very often as I feel there are people suffering a lot more than I do, but
Over 2 months ago I had an exacerbation of my Bronchiestasis, took my usual rescue pack antibiotics for 2 weeks plus 5 days steroids, it didn’t clear so had another 2 weeks antibiotics & steroids, which did improve how I felt , however I still feel very weak, tired all the time and breathless, just don’t feel right in myself, does anyone else ever feel like this after so long, as I am feeling very down , and wondering if it is just to feel like this.
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Samye
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Sorry to hear you're unwell I have copd and when I have exasperation I have pills and potions and inhalers it can take a few weeks ta start and pick up but if you have any concerns see a docter and see what he says I hope you feel better soon
Thank you for your reply, I think I will give it another week, and then may be contact my Consultant, who I was supposed to see this week but appointed cancelled because of strike.
I think you ought to try to get an appointment lined up as another week is October and it could be November before you get there. It is awful when you feel so exhausted but really you need to get some treat before winter. Do you not have a named nurse from the practice. Have you had a chat with the helpline nurses they are very helpful I have found. Take care
Depends. First of all, you must get a sputum sample in to your surgery for testing so that the identity of the bug you have can be found, and then you to be put on the antibiotic that will sort it. Some bugs need intravenous AB to knock 'em out.
It depends on how bad the infection was and how much you rested when you had it and afterwards. You had antibiotics over a prolonged period as well which can upset your system. If you are worried contact your consultant’s secretary. In the meantime eat well and rest well. Be kind to yourself. I hope you feel better on.
Are you having your sputum cultures done which should include AFB and fungal cultures. In order to know if treatment is effective , cultures need to be done as you risk multi drug resistant bacteria. by taking antibiotics that may not be effective in treating the infection.
Dear Samye I'm so sorry you're feeling so rough. I have Bronchiectasis and possibly Aspergilosis.I have realized that not all antibiotics are the same. Last spring I had a chest infection used my five day rescue pack of amoxicillin and Prednisone. The chest infection got worse. Had to go to doctors. They put me on Doxycycline which did the trick, but of course it takes longer because the chest infection had really taken a hold. It took over 3 wks to clear up. Fast forward to 2 weeks ago. Given Doxycycline and Prednisone for new chest infection and almost back to normal!! Doctor also said that it takes 2 weeks for an infection to clear up with Bronchiectasis. Hope and pray that you are feeling better soon Karen
My last infection was haemophilus and it took 4 months to clear after numerous combinations of antibiotics, just couldn't shift it, hospital microbiology became involved and that solved it
I have bronchiectasis and in the past with a chest infection after a few days on antibiotics I start to feel much better. Earlier this year however I had 2 chest infections within 5 weeks of each other and it has taken me a few months to recover my energy and I don't know why. I understand how frustrating it is as you just don't have the energy to do normal things. I found it more depressing that shielding during covid as lack of energy for me means I am not going out and is therefore isolating. I hope you will notice an improvement even if only gradually and this should give you hope.
Hello, sorry to hear that you have been feeling so poorly. I agree with the other posts on here that you need to speak to your Doctor or Consultant.
We are all different but for me I have found that my 'early warning signs' are getting out of breath when walking a short distance that wouldn't normally be a problem. I start my rescue pack as soon as I realise what's going on (I take Doxycycline). It has taken around six weeks from starting the antibiotics to feeling 'okay' again. I count myself as being lucky, because in between flare ups I feel well and I am able to walk without getting out of breath. I am 66, and currently on a (long) waiting list for pulmonary rehabilitation.
Hello. When I had infections pre- diagnosis they seemed to hang around for months. The last bad infection I had cleared up fairly quickly with the right antibiotics, but left me feeling tired and drained for2 or 3 months afterwards. Quite suddenly one morning I found I felt well. I hope you find the same.
I have dry bronchiectasis, used to have so many infections, but eventually seemed to find a way of managing things, and took all the help offered, especially fitness classes, etc.
Covid had the surprising benefit that I hadn’t had an infection for a couple of years, until two months ago. Took emergency meds (ciprofloxacin) and it seemed to work - but have been left with horrible lack of energy, gastro upset, a silly, tickly cough and am having to fight really low mood, which is largely due to annoyance that I seem to have lost some of the ground I’d worked hard to gain previously. Maybe you feel similarly?
For myself, I don’t think I really need medical help at this point - just need to work at fitness again-but think that others are right, and you should get a medical check to see if more help is needed?
Don’t worry about posting cos you feel not serious enough. We are learning from one another here . As few people have heard of bronchiectasis .though with more c.t. Scans I’m sure it will be more commonly known.
I found I was rough on carbocysteine and nacys they made me really ill for months .
Have rescue pack of steroids and doxycycline and it seems to work for me .
Been using saline nasal spray and nasal protector spray for few months now twice daily.
I have long COVID and that’s extremely debilitating too. Hard to know what’s the cause sometimes though must say if I’m due to be ill with bronchiectasis I feel tearfull few days before.
I also can not tolerate NAC or Carbocysteine . I am histamine intolerant so I think that is the reason as they can cause the release of histamine . If I eat high histamine foods the mucous increases and chest gets tight. I need to find other ways to get the mucous out from deep in the lungs. What nasal sprays do you use , is that for post nasal drip ?- which I have too . Hope you are feeling well at the moment.
Hi I have problems with lots of food too and found the Fodmap diet interesting to read about the interaction of foods. Certainly can’t have lactose and when I gave that up my perpetual tonsillitis and earache went away . No gluten but the odd slice of good quality sourdough bread I can get away with . There are loads of drugs can’t tolerate too .
I use puressentiel saline spray seems to contain calendula also their nasal protective spray interesting that I’ve had very little hay fever too. Stared that few moths ago. Also puressentiel room purifying spray I have used for years I take it away to spray rooms only a tiny amount needed . Meant to kill viruses etc
Go online to find 3 for 2 etc or they are a French brand. And are pure hence the name
I don’t have the drip yet !
Also have a Dyson air purifier by my bed ran for two years 8 hours a night before needing new filter. I know when I haven’t used it !
Can you produce a good sample to have tested? It may be that the bugs were not all eradicated.
Also, to bear in mind - I was unwell for several months and was given antibiotic after antibiotic. Eventually, the sputum sample picked up pseudomonas. The GP i discussed the result with said I needed no treatment as lots of people have pseudos in their lungs and they only treat them if they are causing a problem. (Which bit of 'been on and off antibiotics for months' did he not hear?). About a month later, I had my annual review with my Resp consultant. He was not surprised to hear what I had been told, but was keen to get me treated and put my on a different antibiotic. This cleared the pseudomonas and I have remained well ever since.
GPs know a little about a lot of things. Although some do know how to treat us, they don't all have the knowledge required to deal with Bronchiectasis.
Get a sample to your GP and make another appointment.
Thank you to everyone who replied to my post, I am still feeling exhausted and low mood, but fortunately my cancelled appointment with my Consultant has now been rearranged for next week so hopefully e will be able to put my mind at rest.
Again many thanks to you all for your advice and take care 🤗
I'm shocked Moy that Dr told you your Pseudomonas didn't need to be treated. When my sputum sample showed Pseudomonas I was admitted to hospital and put on a two week course of IV antibiotics.
Unfortunately I'm colonised now and take inhaled Colomycin every day to try and keep the levels down.
That's good you eventually got another antibiotic and delighted for you that you've managed to get rid of the Pseudomonas 👍
My consultant was equally horrified but not surprised!
I think we have to remember that GPs are human and can make mistakes the same as anyone else. This forum and my Breathe Easy group have been lifelines for me as I have gained so much information from reading of others' experiences. I have a lot more confidence to challenge medical decisions now.
And to be fair to them , bronchiectasis was called an orphan disease up until not long ago with very little awareness. Thank goodness things are improving
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