Diagnosed with pseudomonas aeruginosa infection in my lungs

Yes I am still practicing integrated medicine

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.

@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!

@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!

@irenea8 I should also add that no two people with lung disease are alike. Something that works for one, may not work for another. Your best bet is to rely on the expertise of your pulmonologist to work with you to come up with the best treatment plan for you. It is sometimes trial an error, but hopefully in working with a pulmonologist you can come up with what works best for you.

@irenea8 I should also add that no two people with lung disease are alike. Something that works for one, may not work for another. Your best bet is to rely on the expertise of your pulmonologist to work with you to come up with the best treatment plan for you. It is sometimes trial an error, but hopefully in working with a pulmonologist you can come up with what works best for you.

Thank you so much. Just a few remaining if you do not mind. What do you use for a nose spray? And which vest have you found works for you? And if Colistin is not approved how does it get prescribed and what if any side effects with it? One thing i have noticed is that Pseudomonas seems to crop up for people after long standing antibiotics. In my case i either had it all along since they never tested me for it till i suggested it or i got it after being on Augmentin for 4 weeks (that was a long time for my frail body). Thanks for the feedback on the Meropenem. That is encouraging to hear.

@irenea8 The nose spray is a compound drug that I get from the Mayo Clinic Pharmacy. It is mometasone 0.33%, ipratropium 0.02%, diphenhydramine 0.33%. (2 sprays each nostril twice a day). It really stops my constant runny nose. I used Flonase for several years but this works much better. The vest I use is from Hill-Rom. I have had one called The Vest, which in my opinion didn’t work as well. It had a battery pack that allowed you not to be hooked up to a machine, but I have found I don’t want to walk around while doing this. The Hill-Rom is what the Mayo Clinic hospital used when I was admitted there four years ago. I liked it much better so I was able to get it. It comes with a wrap, but I like the jacket much better. I use it 2 times daily for 20 minutes each time at 10 hz (which can be set higher or lower).
As far as the Colistin being unapproved, I don’t have an answer. It was prescribed and Mayo Clinic pharmacy fills it and mails it to me. It is expensive but not close to the cost of Cayston. I have not experienced any side effects in the 11 months I have used it. It is quite time consuming to get it ready to be nebulized. It comes in a dry powder form in a vial that has to be mixed with sterile water drawn out with a needle and syringe. Once that is mixed you draw out from that mixture, and place in your nebulizer cup. You then add .09% sodium chloride to that and nebulize. It took me awhile to be able to do all that…. I kept a notecard with the steps which helped. With pseudomonas, it’s my understanding that you can have it in your lungs, it may not cause any symptoms and it may not show up in a sputum culture. It doesn’t mean it’s not there, it just does not outnumber other bacteria and may not cause any symptoms. It might show up as a gram negative bacillus. (also my understanding). I still am going to a pulmonologist at Mayo Clinic and live 9 hours away. I’m not sure about the rules on this site about mentioning physicians’ names, but I will direct you to a website where you will see that he is currently co-chair of the international planning committee for World Bronchiectasis Day. (Medical Director of Bronchiectasis and NTM 360 at the COPD Foundation). Or just Google search, World Bronchiectasis Day. The website may also be helpful in finding others with similar health issues. It is: broncandntm360.org Don’t give up on finding answers, you must advocate for yourself. It sounds like your current pulmonologist is trying to help. But since dealing with my issues for so long and not having answers, I didn’t hesitate to seek out other physicians to help sort through it all. I have never once regretted making the trip to Mayo, even four times a year at the beginning. But follow your heart on this decision, you are the only one that knows how you feel. Good luck, and I hope you find the answers you need.

Thank you for being so generous with your time. A lot of this is helpful. I know which Dr you are referring to and had been thinking about trying to see him. I am on another forum Team Inspire and many of the people on it go to the National Jewish Hospital. NJH seems to put a lot of emphasis on airway clearance information and education along with treatments. I am sure both are excellent choices. Too bad NJH is at such a high altitude in Denver. Kind of ironic for those with lung issues! Pseudomonas tends to become less active when other bacterias are eliminated but it is rarely eliminated. Mine always shows up fairly heavily in cultures with mucoid strain which is the chronic form. Thank you again so much. I hope the Colistin keeps helping you. Keep us posted!

@irenea8 Well I think there is much more to learn about NCFB. Hopefully bringing awareness to the disease will bring new medications that are affordable, and quicker diagnosis to those suffering and don’t know why. In the meantime we have to figure out what works best for us and work hard at staying as healthy as possible. I remember years ago one of the allergists that I went to told me I didn’t ever want to have pseudomonas it was so hard to treat. But here we are. And it sounds like you are really struggling. Keep us posted on how you decide to continue with your care. Don’t give up, there’s good help out there!