Should 4+ Pseudomonas be treated?

Hello, @rvan - I am not quite sure what you mean - this is a picture & description of the only Aerobika I am familiar with. https://www.nationaljewish.org/conditions/medications/airway-clearance-techniques-devices/using-the-aerobika

There is another PEP (Positive Expiratory Pressure) device that is also often prescribed. You can read about it here: https://www.nationaljewish.org/conditions/medications/airway-clearance-techniques-devices/acapella-dm-dh
Some doctors recommend one over the other, others leave it up to the patient's choice.

Here is my experience with both: I originally was prescribed the Green Acapella device, but I was using 2 different nebulised solutions at the time, and wanted to be able to do both airway clearance and nebs at the same time, so switched to the Aerobika. I found that, for my lungs, it was too difficult to do both at once, so I still do them separately.

I continue to use the Aerobika instead of the Acapella because:
1) I can completely disassemble the Aerobika for thorough cleaning, but only do rudimentary cleaning of the Acapella device. Since I am susceptible to MAC and Pseudomonas, to me more cleaning is better.
2) I can also more easily adjust the pressure on the Aerobika, which for me is good because my lung conditions varies quite a bit day-to-day.
3) Finally, the more compact Aerobiks fits into my pack better for travel.

In the end, it is a matter of personal preference...
Sue

Hi Rita. What about oral antibiotics to treat the pseudomonas?

@rits I just found this article on Phage therapy for Pseudomonas from Cystic Fibrosis News today. Unfortunately not something available today but maybe in the near future. Not an antibiotic, YEAH!!!!. https://cysticfibrosisnewstoday.com/2021/01/12/phase-1-2-trial-at-yale-testing-phage-therapy-chronic-p-aeruginosa-infections-in-cf/ Phage therapy is also being tested for treatment of Mycobacterial infections. https://www.genengnews.com/insights/phage-therapy-win-mycobacterium-infection-halted/

Hi Rita. I am no physician as you well know, but it appears to me that you are not being left on the antibiotic long enough to truly stamp out the pseudomonas. I was put on tobramycin in 2016 to treat mine. I felt better and all coughing ceased after one month on it, but my dr at Mayo would not take me off off it until the spring of 2020. Remember, the reason you are suseptible to pseudomonas doesn't go away with medication. We have damaged lungs and will forever be fighting against opportunistic pathegens. I had been on both cipro and tobramycin for four yrs to get it good and gone.

Thank you everyone for your advice. The ridiculous thing is that, without any treatment, the pseudomonas I have did not show up on most recent sample in Dec. I sent this one fed ex and it was tested within two days rather than the previous over a month for my last 3 samples which was caused by the slowness of the US mail. Ut Texas kept telling me to mail it but I ignored them this time.

My theory is the pseudomonas feasted on the sputum during its trip across country and grew to show up as "many" although there were probably "few" to start. No nebbing. No airway clearance. Not even any breathing. The pseudomonas must have had a great trip.

My recent sample did show klibsiella another nasty bacteria I acquired in the hospital. Dr McShane said we could take care of that with a week of Cipro. Because I have been unable to get my breathing to where it was a year ago I agreed to try it. Today is day 8 since I finished and I have been having terrible abdominal pain and feeling sick most of the day. Curiously it didn't start until the last two days of the course of antibiotics.

And worse I am having an exacerbation of chronic bronchitis. So the klibsiella was not the problem and I am worse since treatment.

I've only wanted to get back to where I was before the deterioration in my breathing this year. My next step is to do a pred burst snd then 3x a week of azithromycin. Dr McShane had been against using it for inflammation in case I need it again for infection. But with no MAC showing up and my 79th bd next week it seems unlikely I will have treatment again. However it's going to take a while before getbthr courage to try the azithromycin.

There are many things wrong with this body which has clearly lasted beyond its use by date. But I still hope to get some qol.

Just want to offer some words of encouragement. I finished my last course of Cipro (the second in a month and a half) with no relief. I had also tried a course of Tobramycin in there but only lasted 7 days because I had an allergic reaction. After the Tobramycin my doctor called in a 8 day taper of prednisone. I was still not feeling well on day 8 which was last Friday and on day 9 I woke up and my oxygen levels were better and I was able to start moving around a bit more and have improved since then and was even able to take a half hour walk this week. I am keeping my fingers crossed for continued improvement and hoping that the prednisone will also help you. I am so sorry for your reaction to Cipro and your abdominal pain.

Thanks aunt nanny. I'm glad that you found treatment that works for you. A problem is that azithromycin should not be taken alone because it is one of the best drugs for MAC and mycobacteria become resistant to it. Also, it causes digestive problems in some people. I will definitely discuss your treatment with Dr McShane.

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

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

There was some success reported in treating pseudomonas in skin infections using Manuka honey. That led to the hope that it might also be effective at treating pseudomonas lung infections because people with Cystic Fibrosis, COPD and bronchiectasis are susceptible to them.
I was a little skeptical of the theory - putting honey on the bacteria on the skin (or in a petri dish) seemed vastly different than trying to get it onto the bacteria hiding deep in lung tissue. This brief report: https://cronfa.swan.ac.uk/Record/cronfa50103 seems to say just that.
"Ex vivo" means "outside the body" - tests performed there showed that honey plus antibiotics placed on the bacteria inhibited growth. Unfortunately, there doesn't seem to be a way (yet) to deliver the antibacterial properties of the honey into the lungs. That difficulty is described here: https://www.labroots.com/trending/microbiology/14893/manuka-honey-kills-cystic-fibrosis-pathogens-culture
As with all things in medicine, stay tuned for further development.
Sue