fed up with infection after infection :(

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I've been diagnosed for about 2 years and things seem to be getting worse now and it's starting to get me down.

I'm alergic to penicillin so my doc just give me 7 days worth of clarithramycin. .which never gets rid and I always have to go back for more which I am doing in the morning.

Are there any other antibiotics that I could ask for tomorrow? I'm in the uk by the way.

I've always been pretty fit but over the last months I and finding I just don't have the energy and even at the end of a days work I'm so tired..and im really hating this.

So I'm really keen to know what other people are doing to help live with this condition please...im now starting to feel a little desparate and depressed...im only 47 and feel I can't live the life I want because of this...at the moment I feel like I have a small child sitting on my chest all the time and everything aches from coughing.

Yes I know this is a real woe is me message..and this is really not me im usually a glass half full kinda girl smile

Thanks in anticipation smile x

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  • Posted

    Hi Jules

    I have had bronchiectasis since I was a baby and appreciate it must be difficult to find out later in life after being used to having good health to come to terms with.  

    My problem is I am intolerant to many antibiotics.  I note you are allergic to penicillin.  I have heard of folks with this particular allergy prescribed Doxycyline but I would recommend that you ask your GP to send in a sputum sample but that he starts you on an antibiotic in the hope whatever bug you grow will be sensitive to it.

    It doesn't sound as if your bronch is well controlled.  The BTS guidelines on non cf bronchiectasis state 14 days of abs are necessary.

    I hope you have a respiratory consultant, especially one with a special interest in cf/bronchiectasis.  Con should refer you to a respiratory physio.  Have you been taught physio - it is one of the most important things we can do for ourselves.  They would often refer you to an immunologist.  

    You don't say if you use a mucolytic or nebulise saline/hypertonic saline to help loosen up the gunk.

    Many bronchs also take a probylactic antibiotic (low dose ab 1 3 times a week or 1 a day).  I found they were very beneficial re my lungs but again I am intolerant to them and because I am colonised with haemophylus I nebulise Tobramycin 28 days on and 28 days off.

    You have to be your own advocate when you have bronchiectasis.  Learn all you can and make sure you get the treatment you need and deserve.

    Good luck

    x

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    • Posted

      Hi Stixlabushka,

      Yes I do twice a day after bebulising bronchodilaor, hypertonic saline, then do physio and when i'm on my 28 days nebulise Tobramycin ab.

      How about you?

      cx

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    • Posted

      thanks cofalot...that name did make me giggle...we should all have that and just add numbers to the end LOL.

      Gosh I feel like a right moany bum after reading your story sad

      Im sure Doxycyline was mentioned before i went on holiday , is that one that you are not able to go out in the sun whilst taking due to skin disclouring?

      Ive started to read some articles today and plan to get lots of info and go back to the docs, my GP is lovely but he is not a specialist, plus he has read the consultants notes wrong and only give me a weeks worth of abs..a friend of mine said with that particular one i need 14 days min for it to do the job.

      I really appricate everyones feedback its been really helpful.

      I now feel in a better position to help myself more and fight my doc for better treatment.

      So thanks to you all and good luck everyone x

       

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    • Posted

      You're not a 'moany bum' just a bit overwhelmed at the moment.  You will become more in charge of 'it' and more confident the more you know.

      Doxy is photosensitive but you can go out in the sun - just be sensible whilst on it and cover up and use a sun screen.  You just burn a bit quicker.  I believe Ciprofloxicin is the same.  Look at Sam - she is on it al the time and I don't expect she is burnt to a frazzle.

      Glad you feel more up to being your own advocate.  Go girl.

      cx

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    • Posted

      daily airway clearence bubble pep

      just seretide twice daily

      i have a 5 yr old, so germs are about. got to be careful.

      if i get a sniff of a virus i'm straight on AB's augmenton duo forte for 2 weeks, if bad - hospital for 2 weeks on IVAB.

      lung function: FEV1-41-46%, Volume- 65%

      COPD and Bronch with splashes of emphysema  

      had issues all my life.

      when i'm good i surf, play tennis, work, house dad etc....

      when i'm bad- i'm reall s**t. can't do anything.

      breathe well cofalot

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  • Posted

    i totally feel your pain Jules,

    I have had this all my life, [39] but for the last 3 years its has  taken front seat.

    i dont know how you work full time. i have taken the stay at home dad role whilst my wife works. and i work from home.

    i think you need to get a lung specialist, physio and a social worker you can talk to.

    ask you GP to take sputem samples to see what type of infection it is.

    also ask about long term antibiotics to nail this thing on the head.

    my record is 10 months on the one anti.

    as someone said to me when this kicked up a few years ago:"you have to own this disease and take control of it, dont let it own you"

    these words resinate with me always!

    good luck

     

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    • Posted

      rubbish isnt it?

      I can work from home 1 day a week but not really any more.sad

      I did see a specialist but was signed off them dec 2013 becasue everything was stable...but in the last 12 months its just so up and down and now its making me so tired from all the coughing, Ive even been taking Omeprazole to help with reflux to lessen the cough, but the problem now is that if i stop that for more than a day i get TERRIBLE heart burn.

      I'm now looking at my diet and just said to Steve that i read an article about cutting out Dairy and wheat becasue they can increase mucus, so its worth a try smile

      Took sample in to hospital this morning so lets see what that comes back with.

      thanks smile

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    • Posted

      find a good chinese medicine practiononer or TCM and talk to them. i have been recieving it for 14 years and has helped manage it.

      don't do what others have done, because we are all different.

      if you want to cut out heartburn, lay off acidic foods:

      oranges, fatty crap, pineapple, curries, chillies, 

      i am on a severely low acid diet and i don't take anything for reflux.

      push to see a specialist again and get on to airway clearance

      good luck

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    • Posted

      Oooo i tried chinese medicina for the skin condition i have (since 2003) and it was dreadful, couldnt take it made me gag and the house smelt like death..LOL.

      i was put on the omeprezole becasue the doc said everyone has tiny particles that come up from your stomach and hit your wind pipe that can cause coughing, Ive never suffered acid reflux prior to any of this.

      But now Ive been taking it for over 2 years if i stop i get it then..even though my diet is not acidic or fatty..its rubbish, so i carry on taking the pills.

      I will book another appointment after the bank holiday, took some medical insurance out in March which will be available for me to use end of Sept , so then I will ask for a referral to a chest specialist again and use that.

      xx

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  • Posted

    Hi Jules, I'm with the other guys. If you're having 4 or 5 infections or more then something is wrong.

    Cofalot is bang on - 7 days is insufficient. Also just prescribing clsrithramycin without seeing what the bug is, it's not best practice.

    You should have some rescue antibis at home. When you get unwell, deliver a sputum sample to be tested and then start the rescue antibis. When the sputum sample comes back your doctor should adjust your prescription depending upon what you've grown.

    If you're getting allot of infections- say within two weeks of finishing your course of antibis - then it suggests that you never cleared what was in there. Hence the longer, better targeted course. That said, sputum sample growth is pretty flaky. It can take a while - multiple samples- before you can get an idea of what you may be colonised with.

    There is also the chance of TB and non-TB mycobacterium. They take 6 weeks to grow and are missed a lot.

    Finally there's the issue of immunological problems. For instance I have a pronounced difficulty with the polysaccharide bugs. This helped explain why I was getting so many infections.

    Then there is also the issue of prophylactic antibis. Like cofalot I use doxycycline. It doesn't stop them, but it does reduce the severity of the infections. It helps.

    And last point, is to repeat the importance of clearing the lungs. Clear out the gunk and you remove the lovely goo that the bugs like to grow in.

    We all face the problem of GPs who have little knowledge of Bx. So absolutely take control! A good place to start is the BIG - lots of stuff on their website. Another really good place is an excellent little booklet on Bx including treatment protocols from Chest Heart Stroke Scotland. You can find it easily with a little googling "Living with Bronchiectasis".

    Good luck, clear lungs!

    S

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    • Posted

      * sigh* sorry autocorrect got the better of me. Not the BIG website, of course, but the BLF website.

      Obvs... Sorry!

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    • Posted

      Good advice Sam.  Just a little point - I take Doxy sometimes as a treatment - I can't take prophylactic abs (wish I could it would solve a lot of probs) because I have IBS.

      I agree the CHSS booklet is the best I have seen too.  Along with BLF I would recommend Bronchiectasis R Us - very reputable site full of knowledgable folks.  Shame it takes so long for links to be moderated on here - links are so helpful.

      cx

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    • Posted

      Ah sorry, misunderstanding.

      Agree re links. I understand why they do it, but it does take a long time and we have to refer to the links longhand grr!

      S

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    • Posted

      thx Sam, yes sent off sputum sample this morning to hospital.

      My consultant only ever gives me 7 days worth of antbios and even thought my consultant said 14 he will not change my notes on the system...would this be a money issue for the surgery do you think?

      Ive just downloaded the doc from the Chest Heart stroke scotland and will highlight bits and take back tothe doc this week if i can get in.

      I do have asthma and chronic idiopathic urticaria, which the consultant said is most likely why I now have this too...so i take pills for al lthat as well....its a wonder people dont tell me that I rattle LOL.

      i have a flutter at home too which I really need to start using regularly now, I didnt really need to previously as i wasnt needing to cough much as obviously not producing much mucus.

      Ive also downloaded some breathing exercises that the phsyo gave me a few years ago and Im going to have to start a proper routine now i think...

      Any way thank you for all your help and advice - greatly received.x

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