Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger while hospitalized for a rhinovirus (cold) for 17 days. It first showed up in April 2019 and continued showing up in the monthly samples I brought in while I was being treated for MAC. It disappeared in September 2019. I think it didn't like Arikayce which I began taking in August,
I stopped all MAC treatment at the end of May 2020 almost 15 months after I started and a year after it vanished from my samples. Unfortunately, pseudomonas reappeared in my June 2020 sample (mailed 4/20), my August sample (mailed 7/27), and most recently 11/20 (mailed 10/20). I had a video appointment last week with Dr. McShane who is treating my various lung organisms from UT Tyler. My breathing has been horrible and getting worse for months with lots of shortness of breath and almost constant thick, gross but clear, sputum. Is it the pseudomonas (or the bosa nova – sorry couldn't resist Thumper's influence).
Dr. McShane is reluctant to treat. I had a lot of trouble with the oral antibiotics, mainly digestive, that has improved only over the last few weeks. I had a great deal of trouble with Arikayce which affected my breathing so Dr, McShane is also reluctant to prescribe an inhaled drug. My pseudomonas is susceptible to every antibiotic on the list, But, she said that she has been "chasing bacteria" like pseudomonas since she first started practicing in this area in 2008. She said I could do a course of antibiotic and the numbers would go down enough so that it wouldn't show up in the report. However, soon after stopping the antibiotic, the numbers would go up again in a vicious cycle,
Instead, she prescribed a prednisone burst which has given me loads of energy but seems to have made the humongous amount of sputum worse, I'm breathing through cement! I'm finishing the burst tomorrow and promised I would report on how I'm doing. Dr. McShane is brilliant and probably the best doctor I have ever had and, believe me, I have been treated by A LOT of doctors. If I tell her that I want to try treating it, I believe she will prescribe something although we aren't sure that it is the pseudomonas causing this. Also, I am overdo for a chest ct scan which would be helpful but I am too stressed to have any tests until after I have confidence I will be safe. That, hopefully, will be in a couple of months.
I hope Terri and others who have a pseudomonas history will chime in. Should I push for treatment? Thanks