Asthma.B/X AND PSEUDAMOUS

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Hi I am a 48yr old patient with asthma,B/X and pseudamous aeruginosa to which i am at the moment trying to get rid off again i am on strong antibiocs orally for 6 weeks and a anitibioc through a nebliasar which i have been on for 4 weeks i was just wandering if anyone else has this much antibiocs in one go it starting to get me down as i always seam to have a cold and just feel run down all the time and finding it hard to do normal day to day task.I as also wandering if anyone gets help with there prescriptions and if anyone has applied for PIP?I finfd these dicussions really helpful that there are other people out there goimg through similiar  things to me and others hope you don't mind me posting 

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  • Posted

    Hello Deborah,

    ?I have asthma and early stages of Bx.  My asthma is getting a little more difficult, but I continue to research more about stabilizing.  Sometimes there are websites that recommend certain supplements or foods, but be cautious if they don't have the testing to prove their recommendations.  For example, I have been taking ginger for about a year and have had more heart burn than ever.  Come to find out it is from the ginger. I had read that ginger was good for respiratory problems and now I find out it has no proof for that claim.

    I have ditched the ginger as of today.

    ?So, what I am saying is to do lots of research before you try these suggestions written online.

    ?Your doctors must know what they are doing for the pseudomonas. Be patient while  you are finishing  the antibiotics.

    ?Have you tried expelling the mucus with an acapella or comparable? Getting the mucus out can help you by preventing infection. It is part of the routine of Bx. Expelling mucus is essential to preventing infection and the use of antibiotics.

    ?Ask your pulmonologist for an acapella device asap. I don't know what PIP is, but it sounds like a health aid system in your area. Absolutely, contact any organization in your area for medicinal help with medication and doctor visits with specialists if you do not have any insurance to pay for those things.  Stay upbeat and seek local assistance in every way you can. Lots of community centers can direct you to the right organization. This disease is not going to go away, but you can make it easier on yourself if you have the professional help it requires to maintain stability.  You are young and have many years ahead.

    Blessings to you Deborah,

    ?Mary Ann

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  • Posted

    Hi Deborah

    Just saw your message I to have BX asthma & colonise pseudamonus. Once you get pseudamonus in yr lungs it's almost impossible to get rid of some it's all about management. After spending many years trying to manage my condition & spending many times in hospital & also having to manage infections I realised the only way to blast pseudamonus is with intravenous anti biotics. I do my own ivs (intravenous anti biotics) at home as I have been managing my condition for so long & I know that I am past oral medication. I realise everyone is different but this is the way I manage it.

    If you can't get on top of pseudamonus try and see a chest specialist that can help you. Do you live in the UK?

    Rach

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    • Posted

      Hi Rach

      Yes i live in the uk and i am under a place called breathing space  its is very good.I have also had IV antibiocs for the pseudamonus but just feel like my life is always having the bug and been on anticbiocs at the moment and i can't get any help with my prescriptions only if i pre pay burt if you have other condtions you can get help but i've been told i will never get better i just have to manager it so was just wandering if there's anyone getting any help?

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    • Posted

      Hello Deborah,

      ​I was curious if you know how you contacted pseudamonus. How long did you have it approximately before you got the first antibiotic for it?  Is it airborne? Or does it travel through blood or mucus?

      Thanks for the info.

      Blessings,

      Mary Ann

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    • Posted

      I feel exactly the same I've spend half my life fighting infections & it's draining. Since I got pseudamonus about 9 years ago my condition has deteriorated. I'm a positive person when I'm well I make the very most of life. Last time I had ivs I had 1g of meropenum & 4g of Tazocin 3 times a day through ivs. It's the highest dose I've ever had but it worked. I'm under Papworth hospital Inow Cambridge they amazing & I was sent there by my consultant 9 yrs ago as I'd spent so many months feeling poorly.

      If you want any further information please contact me

      Rach

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    • Posted

      I was curious if you know how you contacted pseudamonus. How long did you have it approximately before you got the first antibiotic for it?  Is it airborne? Or does it travel through blood or mucus?Thanks for the info.

      ​Have you ever been free of the infection? How long between outbreaks or do you never get any relief?

      Blessings,

      Mary Ann

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    • Posted

      Hi Mary

      I'm have pseudamonus and I've no idea how I got it but it's in soil stagnant water (this is why flowers aren't allowed on wards anymore. My advice is Google it but I believe if yr lungs are damaged you are seceptible to catching it.

      For most people once you get it in yr lungs it lives there. You may get rid of it after a course of strong Anti biotics but it does tend to bounce back. It's all about management

      Rachel

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  • Posted

    Hello Deborah! I am 50 with asthma (manageable-last 15 years), BX and the dreaded pseudamonas aeruginosa that was diagnosed 3 years ago. The pseudamonas has been a nightmare that has totally taken me physically down in a huge way. I felt I was going to die about 1 1/2 years ago. It has ruined my family finances because I absolutely cannot work. I am waiting for a court date for my disability hearing. I understand totally what you are going through. It seems like there are just constant phases of getting sick, going on antibiotics for long periods of time (they make you feel wretched) and then trying to build back up after you finally get off them only for it to start over shortly. The only thing that really seemed to help me was -believe it or not- forcing myself to walk on my treadmill. Plus I take a large amount of Vit C. I HATE the treadmill but it seems to help. I started out only doing 5 minutes but promised myself I would at least TRY daily. I write it on a calender so it motivates me. Some days I go slower than my 96 year old Grandmother but I commited to it. I have done better during the time since I started than any other time since diagnosis. I now walk (still pretty slow) for 55 minutes! It is very boring but really helped me. I did use to work out HARD years ago so it was quite a blow to the ego! Try the Vit C too. We have to help each other on here!! Best of luck...we all get our down times....hang in there😊

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  • Posted

    Hi Deborah

    I have had bronchiectasis for 40 odd ears now and I never got help with my prescriptions. When I applied the assessor reckoned I wasn't in need of help. If only they knew how debilitating this condition is.

    I have taken a course for six months in the past. My current GP has said to never take less than a two week course.

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  • Posted

    Hi me again i am writing this whilst waiting for night nurses to come and give me my last iv antibioc this is the 2nd lot of iv i've had in 5 weeks the pseudamous aeruginosa did't want to do one so after tazocin iv i was no better in fact i was worst(this didn't work for me in june2016 either) i spent 9 nights in breathing space whilst having a 14 day course of meropenum iv this antibiotic seams to have done it but i have since found out it is a dearer antibotic so that why i probably wasn't able to have it in the first place but i feel i've lost a month of my life.Am just worried know if the pseudamous comes back and how long i will get between flares up's and if there give me the meropenum antibiotic i surpose only time will tell!!!!

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    • Posted

      You poor thing Deborah! Please hang in there and be well! My heart goes out to you and your current suffering. I must say that I have been doing better after much heavy praying. Pick up a Bible and read and have faith that the Lord will help you. Have patience as it does take time. ❤
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