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@irenea8

Thank you so much for taking the time to answer. I am amazed when i read about people who are able to take so many antibiotics! I am thinking you must be younger with fewer co morbidities than myself. I have had Bronchiectasis for a long time since around 2000 and I am 71. But I also have chronic long standing intestinal issues and also possibly kidney and heart issues that are undiagnosed. I recently (March) found out I have Chronic Pseudomonas (mucoid strain found). The only antibiotics I have ever used are Augmentin twice and in August tried inhaled Toby but only got through 5 treatments due to side effects! My main issue each time is that I stop urinating enough. Out of all the options to try inhaled Cayston seemed the least likely to have that effect (reading about it). But I know I would not be able to use it ongoing. I was hoping that a couple of weeks of it would at least knock things back. From what I am reading and from studies it seems that it does not help NCFB as much. Did you find it helpful at first? Did you have side effects with it? Also curious about the Meropenem. Did that help at all? It is supposed to be relatively safe for kidney issues. And the Colistin studies show it helps NCFB with Pseudomonas the most. But I thought it was not approved by the FDA and has very bad side effects. What have you experienced with it? All I do is nebulize saline 7% twice a day followed by Aerobika and nebulized Glutathione a few times a week. I recently started trying PulmoSal saline which is supposed to be less acidic and therefore help to reduce Pseudomonas better. So far it seems good. And I started using the Aerobika not just sitting but also laying on my back and sides. That has made a big difference. Thanks again and anything more about the Cayston or Meropenem or Colistin would be appreciated. Need to read up on Bactrim but curious about it too.

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Replies to "Thank you so much for taking the time to answer. I am amazed when i read..."

@irenea8 i will try to answer all your questions. I was 45 (1998) when I started having respiratory issues. I am now 69. I was not correctly diagnosed until I was 51 and was seen by doctors at Mayo Clinic. I had lots of side effects of the different oral antibiotics I have taken over the years, but tried to tolerate as long as I possibly could as I was desperate to feel better. After the MAC diagnosis and treatment I had a few good years with only the normal colds and other viruses. The first time I had pseudomonas show up in a sputum culture was 2003. After that they would show up about any time I was sick with respiratory issues. I have other health problems but they are not related to my lungs. IV Meropenem was 3 times a day for 28 days and I drove to a regional hospital for those infusions. (I put a lot of miles on my car that month). I had no side effects that I remember and it did help. With Cayston, it seemed to help for about 5 months but gradually became ineffective. After 7 months of it I went back to Tobi and now currently Colistin. I now have gone several months without Pseudomonas showing up. However, there were several times sputum cultures came back with gram negative bacilli. I think my combined health regimen with the Colistin, Advair, nose spray, sodium chloride, airway clearance vest, staying hydrated, knowing my limitations, and regular aerobic exercise has greatly contributed to doing my best to stay healthy as possible with bronchiectasis. It is not easy and really is a full time job and requires full support from friends and family members. I hope I have answered your questions. Remain positive and advocate for yourself!