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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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  • supercough
    supercough

    Posted

    I live in Scotland where we have the National Health Service. It has served me well over the years but lately I feel that I have gone as far as I can go in terms of helping my condition. I have had many courses of major antibiotics and have got to the stage where I feel enough is enough. I was told today by my specialist that I am likely to have PA for the rest of my life.

    One little recommendation I would like to share with you, if I cannot sleep during the night due to coughing and retching, I take a couple of whiskies..not enough to make me drunk but enough to suppress the cough reflex and I get sleep. I am not suggesting that everyone should get up during the night and party but as we all know, when we lay down, the coughing begins and it is hell. As a Scot, I of course recommend Scotch but I reckon any suitable spirit would do the same.

  • rosalind17
    rosalind17

    Posted

    I have Pseudomonas Aeruginosa in my sinuses. I have recently had sinus surgery and a wash out, unfortunately I still have the PA I can smell it when I breath in. Tried Ciprofloxacin but got severe joint pains can anyone help.
    • supercough
      supercough rosalind17

      Posted

      I also have pseudomonas in my sinuses and sometimes the smells could be dreadful. A friend advised to try a neti-pot (look it up) and every day I wash out my sinues. It is amazing the difference it makes, the smells are seldom there and my nose doesn't run constantly as it used to. I also am free from the dreaded post nasal drip that you get during the night and makes you cough. Cipro gave me dreadful joint and muscle pain and also gave my ulcerative colitis an excuse to erupt and cause no end of problems. 

      I have been offered I/V antibiotics but I have declined because the nearest hospital is quite a distance away and I would seldom see friends and family. Of course if things become accute I might have to rethink but for now, I'll take my chances.

    • karen51134
      karen51134 rosalind17

      Posted

      I too have been diagnosed with pseudomonas in sinuses . I've just had sinuses surgery 2 weeks ago .(paranasal sinusitis( I take 500 mg daily of levaquin, irrigate with budesonide solution , followed by irrigate with gentamicin solution X2 daily. How are you doing after over a year? 

       

    • mizsuzyq
      mizsuzyq karen51134

      Posted

      Hi Karen. My nose is still affected by something. They did not find any pseudomonas in my sinuses or cavitities so far. They did find staff, which I'm told is extremly hard to get rid of. I still do the rinses, just another added regiment  to an already regimented day.  UGH!!!!   I hope you are rid of these nasty flareups.  Take care.

    • tabatha84296
      tabatha84296 mizsuzyq

      Posted

      Hi, again, SuzyQ, 

      When I was having my Vitamin C IVs for lung bacteria there was a lady in the room with me also having an IV drip.   I asked her what she was having done and she said Vitamin C  for an infection in my nose.  The IVs take several weeks and so we ask how long they've been going etc. and she said she was almost finished and it felt like her nose was better.

      People have Vit. C treatments for many things.   If you can't seem to get rid of that staph infection that is something to think about.

      Tabatha

    • mizsuzyq
      mizsuzyq tabatha84296

      Posted

      Wow, good info, Tabatha.  You can bet I will be speaking to my ENT doc about this!  
    • tabatha84296
      tabatha84296 mizsuzyq

      Posted

      Uh uh uh, that will take business away from him.  Just seek out a natural doctor who does IVs.  ENTs are not going to do that unless they are integrated doctors who are both medical and natural.

      Tabs.

    • lana19504
      lana19504 karen51134

      Posted

      Hi Karen. I was diagnosed with PA in my sinus this summer , they did IV antibiotic treatment which did not solve the problem. Now I try to find a ENT doctor who will do surgery on me. What surgery have you been getting. Is that type of washing and cleaning out infection? Did they found the lesion through CT or MRI ? Any info would be appriciated. Thanks Lana.
  • Poemsgalore
    Poemsgalore

    Posted

    Firstly, I was warned when put on Ciprofloxacin that it might give me tendonitis - it did. So I stopped using it

    immediately.

    I was diagnosed with breast cancer late 2012, for which I had surgery. Whilst I was under the anaesthetic,

    they drained my lungs. I haven't had any problems since then. Although my specialist put me on

    Azithromycin, one three times a week. She started me on this as I also had chemotherapy.

    • supercough
      supercough Poemsgalore

      Posted

      I have had lung washouts many times and I have always felt the better of it for a while at least. Sorry about the breast cancer, the last thing you need on top of that is pseudomonas.
    • tabatha84296
      tabatha84296 Poemsgalore

      Posted

      Hi, Poemsgalore - just wondering - did you all discuss that before surgery?  Or did they just discover your congested problem while u were under and decided to clean out your lungs?

      How difficult is it to ask your surgeon to do that or in cooperation with another doctor who also would have to be there???   Love to hear more please ---

      Tabatha

    • mizsuzyq
      mizsuzyq tabatha84296

      Posted

      Hey, I too have had lung cleaned out. You are better for about 2-3 months, but one must still do the treatments. In my case, the congestion was so bad, and would not clear up with any type of medications. They decided to do a lung wash and is done so they can gather the junk that is in the lungs and grow in a culture. I've not had one for a couple years now.  

    • tabatha84296
      tabatha84296 mizsuzyq

      Posted

      SuzyQ,  does the doctor listen to your lungs and hear something that doesn't right to him?  Does he tell you that?  or does he mumble and go and sit down again and leave u hanging?  What prompts that cleaning out of the lungs?  How very bad do u have to be to have the doctor initiate or do YOU have to ask if he will do it?

      Tabs

    • mizsuzyq
      mizsuzyq tabatha84296

      Posted

      My Alaska doc was excellent. He listened to lungs every time I went in. He also would only clean me out if I had a really bad flare up. He did the lung washings first and did the culture which the PA grew from. He would never do lung cleaning unless I actually needed it even if I asked for it.  He never left me hanging. He was very very careful with his wordings to me about this horrible disease and told me one time that to look at me, I looked better than most of those patients he had that were not as sick as me.  That's because I refused to give in, got up every morning, showered and went to work everyday for years with this disease.  He mentioned lung cleaning and said he would let me decide AND he never let me go longer than 4 months to see him. Now here in las vegas it's different. I don't ike our docs here.  Not as good.

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