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]
Hi, I have same problem but a lot better after 3 years of misery, contact me at-if you like. Allan
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I have also had PA together with Bronchiectasis. The doctors managed to clear the PA by giving me a six week course of antibiotic by tablet as well as twice day inhaling antibiotic through a nebuliser. This treatment cleared the PA. This has been verified in two sputum tests. I am sure that I had had PA for at least a year beforehand. I know it is common in people with our condition as well as those with a low CD4 count such as mine.
Hope this helps
I have Bronchiectasis, I was diagnosed six years ago, but recently presented with pseudomonas for the first time. I've just come out of hospital after 14 days of intravenous anti biotics and am currently going through eradication treatment of three months Colomycyn inhalation twice a day, and ciprofloxacin twice a day, also for three months. Your comments have made by very hopeful Brian, thank you.
It appears that that longer you have Bronchiectasis, the greater the likelihood there is of you developing a PA colonisation. Having suffered from this dreadful disease for 50 years, I am now seriously debilitated with a very low FEV. I was given azithromycin 3 years ago and for a while things seemed to be settling down but then suddenly I became acutely ill and I was found to have a serious PA infection/colonisation which is not responding to treatment. I can't help but think that the azithromycin didn't help things.
Yes. I have had this dreadfull disease for 4 years now, I too can not admit I have something this horrible. I have a great lung specialist that I have been seeing for 3 years now. He sent me to National Jewish Hospital and also the Cleveland Clinic. Both of these places are wonderful and you are around others with this same disease. I also have Tracheobronchomalacia.
Pseudomonas Aeruginosa has colonized in my lungs and unfortunately, this will probably be there for the rest of my life as this bacteria is very, very hard to get rid of. I constantly have flare ups, during these times, I am prescribed Biaxin and Levaquin - these two together can change the beat of the heart, so I take them consecutively, not concurrently. The Cleveland Clinic changed my diagoise to severe bronchiectasis and they prescribed "the Vest". This piece of equipment is very expensive and insurance will pay some of it if they write you a prescription for it. This is what CF patients use and it is a vest you put on - this has shown to actually improve my condition just a bit. I have been able to keep myself out of the hospital, which is a godsend. Also, I have a very runny nose, which seems to make my cough worse. My doctor has prescribed Tussionex cough medication. This is a very strong med and it can make you drowsy, do not drive, however, it seems to calm my cough some where I do not cough as often and it has been a godsend.
My routine consists of the folling:
Acetylcysteine 3mil in nebulizer 3 times per day
Acapella Flutter 2 times per day - there is a special routine that you do with this device and it is amazing how much mucus you can get out.
The Vest 2 times per day (which is used along with the nebulizer)
BiPAP machine - at night, which I cannot stand to use. As you know we sleep little as it is.
There are some clinical trials named IgY that is going on. This is an anti-pseudomonas Igy gargle. It is prepared from eggs of hens that have been vaccinated with Pseudomonas Aeruginosa. Somehow this drug is prepared with a water dilution and then it is gargled. You can look it up on the web. But it seems to that this is showing some benefit to CF patients.
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.
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