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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 too have the sinus problem which manifests itself as a foul smell akin to sewage. For ages I kept looking for the source of the odour until I looked it up on the web and lo and behold, it's PA. Yet another indignity.

    I was also warned about the possibility of tendonitis but have had no major adverse reactions. However, the Cipro has never made any difference so it was dropped. I was on Azithromycin for years but again, it made no

    difference. I asked my GP and my specialist to review my medication and the Azithromycin was dropped. There's no point in taking powerful drugs if they have no theraputic value. My specialist told me that there are some new

    drugs coming on to the market for PA in CF patients but it is unlikely they'll be available to people with bronchiectasis.

    • mizsuzyq
      mizsuzyq supercough

      Posted

      Hey, Supercough. Yes, I was told about those new drugs for CF patients, too. And then told, it probably will not be for us.  I have had a mix that I prepare from a place in California that send you a machine for free and free 30 day supply of med to mix at home for the nose, after that each 30 day cost is $99.00. but hey, you can keep the machine for free.  Did not help me.  
    • carol78899
      carol78899 supercough

      Posted

      i have had bronchiectasis since a child been on azithromycin for over 20 years tried to stop azithromycin and was not good i am having a lot of probs with my sinis and headace is this some thing that goes with it

    • sharon_50145
      sharon_50145 supercough

      Posted

      HI Supercough,

      In regards to antibiotic treatment for people with PA and bronchiectsasis, I'm such a person and have been on Azetrenoam CAYSTON, for three years now. It's an inhaled antibiotic. It's super exspensive because its a specialty drug. Fortunately, ive been able to get it for the past three years and it keeps my PA under control along with vibrating vest treatment. Not sure where you are, but I'm in the US.

    • carol78899
      carol78899 sharon_50145

      Posted

      thank u for replying im living in uk had this condishon since a virus as a child did have a Lobe in lung taken away wen i wos 13

  • Poemsgalore
    Poemsgalore

    Posted

    Does anyone know whether or not having your lungs drained would remove the Pseudomonas? I had mine drained whilst having surgery for another condition, and my lungs have been so much better.
    • flicity94519
      flicity94519 Poemsgalore

      Posted

      yes it makes a huge difference but unfortunately it is impossible to remove every trace of PA but staying on top of it is the key to minimising the colony. lungs washed 1/2017 and no hospitalizations since but two small bouts. treated azithromyacin 250 mgs Mon, wed and Fri every week. cipro 14 days if fever.

  • supercough
    supercough

    Posted

    I used to have my lungs washed out every year and it really did help but current opinion suggests that too many bronchoscopies are undesirable and dangerous. In the case of patients with PA infections, washouts should be avoided lest the infection is spread to other parts of the body. You could ask your doctor about autogenic breathing techniques which can be helpful in clearing lung bases. Postural drainage/physiotherapy is helpful too if you are fit enough to cope with it.
  • Poemsgalore
    Poemsgalore

    Posted

    Thank you supercough. I don't think I had a wash out or a bronchoscopy. I was under the anaesthetic for surgery, and they drained my lungs then. Or is that the same thing?
  • supercough
    supercough

    Posted

    Yes, they would probably have used a scope to wash out the bases of your lungs because that's the only way they could do it.
  • christiann74538
    christiann74538 Guest

    Edited

    Hello, I have P.A. For 7 years now and I'm desperately looking for a way to get rid of them. Untill now I use lots of supplements to activate the immunity system, vitamin C in high dose and probiotics, very important for the guts.. I'm on antibiotics every day since 3 years now and in hospital once or twice a year.... I would advise the supplements  but not without your doctor telling you what to take.. Exercises are very very important as well and of course a good fysiotherapist who helps you to clear the lungs.... Good luck!
    • ohara
      ohara christiann74538

      Posted

      What  supplements do you take Christiann ?  besides the Vit C & probiotic?
    • christiann74538
      christiann74538 ohara

      Posted

      Hello Ohara, I take vitamin K2,  Sinergia for immune system,MSM, calcium and vitamin D3 on this moment.  But it all depends on results of analises they do and it's very individuel.in june new analises will be made and supplements will be adapted...Ihave this done by a hematologist who is specialized in cell regeneration as the conventional doctors don't even think of helping the body to stay in balance and be strong.  Maybe you need other supplements, every body has a different chemistry and a different way of handling illnesses. I take green juices every day as well and  no sugar, no dairy products and little meat.
    • ohara
      ohara christiann74538

      Posted

      Thanks Christiann   I am impressed with your thorough approach to it.  I take several vitamins too, and worry sometimes that they may not be doing me any good  smile smile   consulting a hematologist  seems like a good idea, I will look into it.  I do believe that for me who has had lifelong Bronchiectasis improving my immune system is a very important part of staying as infection free as I can.  
    • christiann74538
      christiann74538 ohara

      Posted

      I understand you wonder if the body benefits of supplements and vitamins... I started to take them because I have temperature every day and cold and shivers  caused by the pseudomonas, it seems. So I started to wonder if it could be of weakness and found this very good doctor. But you must know that probably there are not many hematologist who are specialized in cell regeneration and nutrition. The one I go to is in Spain, but maybe you can find one where you live as well. You must go out of the conventional circuit of doctors.....but number one, take care of the guts. They are our second brains and in direct communication with the lungs..... I hope my english is understandable.....
    • ohara
      ohara christiann74538

      Posted

      Your English is brilliant and thanks once again for the help you are giving me

      I agree about finding a Haematologist, the ones I have looked up around here all specialise in bone marrow problems

      I will keep looking, but doubt I will visit Spain to see one ....thats a bit too far  smile  smile

    • debra64041
      debra64041 christiann74538

      Posted

      I get the shivers and feel like i have a fever but it does not show on my thermometer.  I was thinking of going to a holistic practitioner for help also.  I am always cold.  When most people are sweating I am finally comfortable.  When i breathe in during even cooler weather my chest feels a weird cold feeling (like when you exercise heavily in very cold weather).  I was diagnosed with PA and bronchiectasis over a year ago.  Before that I had fairly well controlled asthma. 
    • christiann74538
      christiann74538 debra64041

      Posted

      Hello Debra, i have temperature every day since the last 2-3 years.. Up to one and a half degree and shivers every day. It's really horrible as it takes all energy out of my body.. It takes some hours to get rid of the shivers and the temperature dissapears after 4-5 hours. It's exhausting, so I understand you .. The problem with broncoectasis is the antibiotic. Too often causes PA in many patients because the PA is a very agressif and strong and intelligent bacteria and as the defenses of the body weakens, the PA gets stronger and dominates... It's big SH.... I try lots of treatments and next week I'll see an infectiologist.. I had never heard of it but I'll tell you what this professor will say about infections and PA.. i'll keep you informes!

      in the meantime, don't give up and try to enjoy every bit of the day....

      take good care, Christianne

    • pomodoros
      pomodoros christiann74538

      Posted

      Hello. Did you see the infectiologist and what did he/she say? I also have PA.
    • sharon_50145
      sharon_50145 christiann74538

      Edited

      Ive found that pineapple juice is great! it has an enzyme called bromelain that fights against infection

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