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fed up with infection after infection :(

Posted , 8 users are following.

Julesb47
Julesb47

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

0 likes, 24 replies

24 Replies

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  • steve62514
    steve62514 Julesb47

    Posted

    Levafloxacin is a good broad-based non-penecillin antibiotic. Its more expensive than the penecillin antibiotics like amoxicillin/clavulanic and doxycycline.

    I say it's a good broad-based one only because the lung defence consultants at my hospital (Papworth Hospital has a good reputation) have recommended it for me in the absence of being able to detect my specific bug. It also worked very well to clear up an onset of pneumonia before I was diagnosed with bronchiectasis.

    As others say - important to at least try to get a specific id on the bug - but not always possible for eveyone or every infection.

    • Julesb47
      Julesb47 steve62514

      Posted

      thx Steve62514..docs today wouldnt give me any more antibios, Ive just finished a weeks course of Clarythomycine and that hasnt helped..he told me to send a sputum sample to hospital which i did this morning.

      This will be my 3rd now and none have found any particular bugs sad

      I am gathering info from here and other web sites to take into the docs so i can show him what other people are using and getting good results from, I know that everyone is different but Im willing to try something else if it gets me a bit more if my life back..I used to be at the gym doing classes at least 4 times a week...and now i get home from work and dont have energy to cook dinner some nights....just read an article about cutting out dairy and wheat too..and chocolate unfortunately as that helps to keep the mucus down...so Im now on almond milk and gluten free porridge smile

       

    • cofalot
      cofalot Julesb47

      Posted

      Samples are a good guide but there are flaws.  I sometimes have false neg results when I have high temp and filthy gunk.  The sample needs to be fresh as possible - not longer that 3 hours from coughing up to lab.  Try getting it from different parts of the lung as the bugs may be partying in one area and try not to get saliva in the sample.  I have my own pots, labels and fill in my own MC&S forms, then I know they are done right e.g. what day Tobra I am on etc.

      Have you checked out your consultant online to see what his special lung interest is?

      I don't quite understand 'gluten free porridge' hun.  Porridge is oats and is gluten free.  I have been put on a FODMAP diet by my GI dietician (not for lungs and not to be undertaken without a dietician, as I believe having stripped back diet, we will then iintroduce stuff again.  The best gluten free bread I have come across is from Waitrose.  Haven't got any at the mo but I think it's ds sweet breakfast rolls.  Gluten free bread is yuk.  

      Good luck.  cx

    • Julesb47
      Julesb47 cofalot

      Posted

      I think I will ask for some pots so that I have some available in future for samples.

      Apparently some porridge has the gluten left in and some not??

      I can try it anyway smile

      Not really a bread person, but may try the pasta, tesco has a complete isle for gluten free stuff.

      good luck back x

       

    • cofalot
      cofalot Julesb47

      Posted

      oats - coelliac

      Interesting article which I found interesting.  Sorry hun it wouldn't allow me to put on a link or it could be my ipad.  Grr.  That along with having to sign in every time is why I don't come on here much.  It looks like GF oats only really matter if you have coeliac disease as the oats could possibly have been contaminated in the factory by wheat etc.  It would be a shame to spend a fortune.  I am not supposed to have gluton at present and I can have rice crispies - haven't had them for yonks.

      cx

       

  • cuddles1
    cuddles1 Julesb47

    Posted

    The food industry is taking advantage of the anti gluten trend and package a lot of stuff as "gluten free" when it has always been guten free. Like corn chips.....duh!.... or rice crispies, oats, ect.

    I am going to ask for always 14 days of antibiotics, , I believe that we need this extra amount of time.

  • Russell27NOLA
    Russell27NOLA Julesb47

    Posted

    JUlesb47, I share some of your same symtoms. I was diagnosed 7 years ago, but just started having in real symptoms last year. I'm 68 and was very active, and still some days are, but then like this morning I was completley drained. I finally got out around 1 to have lunch with friends and just did 30 minutes on my exercise bike.

    I'm allergic to Penicillin also so these are meds I am alternating:

    Moxifoxacin

    Levofloxacin

    Ciprofloxacin 

    And once every 3 months or so:Metamethasone acetate-betamethasone  sodium phosphate injection 12 mg

    I think your doctors are your best advisors however. Work with them and keep your chin up which I know is not easy when you can't get any relief.

    You also have an asthma component whick takes even more energy to control. I do somewhat understand how you feel however, as do most of the people on the site. 

    Keep us posted.

    You are not alone.

    Russ

    USA

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