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bronchiectasis/pseudomonas

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I am here to find patients like me with Bronchiectasis and the complication of chronic Pseudomonas Aeruginosa. I am intersted in knowing what kind of treatments they use to stay healthy. I have had theP.A. for seven years but do not have Cystic Fibrosis.[/b]

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  • flicity94519
    flicity94519 Guest

    Posted

    Partner  has COPD and several bouts of pneumonia in the last two and a half years. Live in Australia.   Recent bronchoscope has revealed Pseudomonas Aeruginosa but not a lot of information was forthcoming.   Just completed 1 month ciprofoxacin now commencing  six months azithromyacin 3 x week at 250mg.

    does this bacteria get eradicated with this treatment or can we xpect it to rear its ugly head again.

    our troubles seemed to start following a total knee replacement.

    pseudamonas Aeruginosa is in left lung.

    appreciate any insight 

  • pinksnugsy
    pinksnugsy Guest

    Posted

    Hi there

    I've had pseudamonus in my lungs for about 10 yrs I'm afraid to say that once you get it in the lungs it rarely goes. I have about 5/6 exacerbations every year & I have to have intravenous anti biotics (when I'm not on ivs I nebulise anti biotics daily) it's all about management. Keeping your lungs clear everyday is paramount. I use an acapella which is really helpful plus I nebuliser hypertonic saline. Exercise is key so when your well try and exercise daily. I also take manuka honey and tumeric & black pepper tablets (someone on this forum recommended them).

    When I'm well I make the most of life I think that's what keeps me sane lol.

    Hope this helps

    Rachel.

    • flicity94519
      flicity94519 pinksnugsy

      Posted

      Thanks for your experience.   We believe ours has been there four 2 1/2

      years  and is either the cause of five bouts on pneumonia or exacerbated due to these bouts.  At present only on oral antibiotics,  nebulised antibiotics  seems to make more sense, is this something that is applied further on in treatment?   He uses a acapella device to help clear lungs so this seem to be consistent  with best help for clearance.  Does gym 1 day per week as well as hydrotherapy,  but effort does need improving to boost overall health.  Am. Concerned with a further knee replace in six months what affect it will have on the lungs with p Aeruginosa and whether it will cause any unpredictable outcomes.  Have you any thoughts on this.

      thanks

    • naila17308
      naila17308 pinksnugsy

      Posted

      dear pink what does Acapella mean? is it a type of dance? actually first i was asthematic(chronic) now i am also a patient of Bronchoectasis. recently joined this group. i feel these discussions so helpful. due to living in asian country did not have enough awairness about it.
    • pinksnugsy
      pinksnugsy naila17308

      Posted

      Hi there

      An acapella is a device you blow into that gently shakes your lungs to help clear the mucas. I got mine from my hospital but if you aren't able to get one off your hospital they are available online to buy. I find it very useful especially when the mucus is thick and hard to shift.

      Hope this helps.

      Keep well

      Rachel

  • carol46980
    carol46980 Guest

    Posted

    Hi, I have had sever bronchiectasis/pseudomonas for over 8 years, then an autoimmune diesease 3 years ago. Did a lot of research on the internet, tried many diets and spent heaps on pills. But how do I know if this is what my body needs? Then I come across Functional Diagnostic Nutrition (FDN) health coach (11 months ago), they test your hair, urine, blood and stool, questionaire about you/health. I haven't met the coach, this is done over the phone and email, and tests by mail. I was put on a diet to suit my body type; for me, meat and veges. My body was lacking nutritents and minerals. Taking a few supplements. Going organic and natural personal products. I decided not to take any antibiotics and most pills offered by doctors. I wanted my body to heal naturally. I feel when I get sick, my body does the same thing, whether on antibiotics or not. Antibiotics has really messed up my body/stomach. I started walking, doing up to 7km walking a day, my dogs loved it. The hospital was surprised by my lungs improvement and coughing a lot less. I feel confident that I am doing the best for myself. My FDN coach got my health better, and the hospital said the autoimmume is in remissiom and don't need to see me, and I'm slowly coming off the prednisone. I am hoping with better health, to control my bronchiectasis/pseudomonas. I don't know if it will go away completely, but am very happy with the results so far.

    • ohara
      ohara carol46980

      Posted

      Thats wonderful news Carol ,   was it very expensive to get the tests done?
    • elizabeth49611
      elizabeth49611 carol46980

      Posted

      Carol,

      Wow! I will need to check into that. Is there a website?

       think the more that you go natural and less prescribed med, the better.

      Beth

    • carol46980
      carol46980 elizabeth49611

      Posted

      Hi Beth, look up Functional Diagnostic Nutrition Coach and add your area,

      Carol

    • carol46980
      carol46980 ohara

      Posted

      Hi Ohara, My fees for the Metabolic Typing were $250 and for FDN lab testing were $500. This is based on 3 months and consists of the Metabolic Typing test, Food plan and 3 consultations plus followup support for 3 months. New Zealand $. Plus supplements. Its not forever, till I am better. I found thru tests, what my body really needed, no more guessing and wasting money. Yes it seemed expensive, but I was prepared to do anything; after told I have up to 5 years left. Also you need to be monitored/tested to see if things are improving.

      Carol

       

    • debra64041
      debra64041 carol46980

      Posted

      Hi Carol...wondering how you are doing now? I have had asthma, bx and pseudamonas for just over 3 years-can't imagine 8! I seem to only go one or two months before needing to go back on antibiotics again. It takes almost that long to start getting over being on them. How do you deal with this? Mentally it is really wearing me. Seems like just existing in my days and not enjoying. I really try to keep happy for myself and loved ones but it brings me down quicker with each flare up.  Walking on my treadmill seems to help but its like mountain climbing some days. Any good coping techniques?  My best to you😊

    • ohara
      ohara debra64041

      Posted

      Hi Debra,  this happened to me for years, an infection every two months...then I read that every infection damages the lungs more  each time ( like a vicious circle)  so I was where you are now, researching .

      Do you give in sputum samples EVERY infection...this is MOST important.  and the sample has to be fresh when tested, so investigate how your samples are tested ( ie  do they go to a lab or what and at what time)   you should get the sample to the doctors within an hour or so of producing it.   and that should be at the labs whiten the next few hours if possible.    Unless the doctor knows what the bug is then you may not be getting the correct ab for that bug ( this turned out to be my problem)   so after having Bx since a baby   I have now managed to stop the 2 month infection cycle I was on

      I don't fly anymore ( I always picked up an infection on any flight)    

  • evelinda33736
    evelinda33736 Guest

    Posted

    I too have this problem I have severe asthma since I was a child but for the last four years it has be

    nebs,advair ,Asmanex,Cipro,Topomycin,the vest just about everything.The doctors referred to the Mayo clinic but there is just no openings,Need help just feeling hopeless and tired of being this way.

    • mizsuzyq
      mizsuzyq evelinda33736

      Posted

      Hi evelinda33736, my doc sent me to national Jewish hospital in Denver. This is the place you should go. They are up to the latest in research in this area. They will have our stay for about 10 days they will put you through a rigorous testing. Have your doc contact them for an appt. if on east coast Beth Israel hospital is another place. 
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