Pseudomonas aureginosa: When did your doctor decide to start treating?

Do you think maybe we are misinterpreting the doctor's response to @lilianna ?
My impression is that she is asking if she feels she can tolerate adding another drug to her already tough regimen.
Have you decided what to do? In my case, my pulmonologist decided that we had to treat the pseudomonas first, because I had a heavy colonization. Once it cleared, we started the Big-3 for MAC. I cannot imagine going through both at the same time.

@lilianna Have you decided what you are going to do?
Sue

My ID Dr. really drills me on whether I am feeling better or am I feeling worse. My pulmonologist's seem to use the radiological data to see how I feel. Maybe my case is easier for them, I have or had multiple and sometimes severe symptoms.

I recently grew pseudomonas putida and then dactylaria on the fungal culture. I’m still waiting for results for MAC from the specimen. My pulmonologist suggested nebulized tobramycin (per his note-I think he said gentamicin during appointment) for the pseudomonas. I didn’t expect them to treat and caught by surprise, I declined. I’ve read more and one review noted it was easier to treat early/eliminate in CF patients where much of research has been done.
I’ve decided to revisit the issue with him once final culture for MAC is done and will start the nebulized Tobramycin if he thinks I should.

I was diagnosed with Pseudo late September and because I could not tolerate Cipro once before I was put on IV Meropenin for 2 weeks, but it is colonized, so my doctor said I had to nebulize Tobramycin monthly which I have been doing. I felt absolutely horrible before I got help, the Meropenin helped right away, I think just time improved my health, and I'm not sure what the Tobi does except make me short of breath and anxious about the calendar waiting to start another round in addition to nebulizing Albuterol and saline twice a day every day. I am also taking Azithro 3X a week, but I do not have MAC currently. I did have MAC 10 years ago and treatment was successful with 3 antibiotics. I can only say that I am feeling better and so very thankful, as I was very sick with Pseudo. I am thinking about getting a second opinion however, as I got/get very little direction from my pulmonologist. Right now, I'm just trying to maintain. I agree that our medical system is in a sorry state. Good luck to us all.

Hi, I was diagnosed recently with MAC but not having any symptoms. Did your Dr. wait to treat you with the Big 3 or hold off until you had symptoms? How long have you been on the meds and how are you doing with them? Thanks so much.

I saw my pulmonologist this past Tuesday. I have BE and MAC. My last sputum culture, taken early last year, came back positive for pseudomonas. I have no troublesome symptoms and as long as that holds steady, my dr does not see the need for medications.

I have the same treatment as you - meropenem iv 2 weeks, sodium chloride inhalation and azithro 3 times a week. I am not doing Tobi because my kidney doctor said no to it for some reason but in any case I also feel better.

Great. Hang in there.

Hi Arlo @equanimous. I just noticed your post about Pseudomonas. If I may stick my nose into your Dr's recommendation, it is my understanding that it is important to treat it early so that it does not colonize and become chronic. Pseudomonas can become almost impossible to eradicate if that happens. I'm not sure how long I had mine but my new pulmo tested and the culture came back as a heavy infection of Pseudo. I took Cipro for 10 days and Tobi inhalation for 2 weeks and feel like a new person. I'm not sure if it is gone although it has not shown up yet in sputum testing but it was a minimal treatment. I've had Bronchiectasis and MAC for about 6-7 years if not more and have never considered any antibiotic treatment....I think Pseudomona Aeroginosa is a whole different story. Maybe a second opinion might be useful??? Also...be cautious if you go ahead with Cipro as it can have a negative irreversible impact on ligaments.....do not exercise while using it.
My best to you,
Kate

Hi Kate,
I cannot take Cipro due to experiencing those very horrid side effects. Intense knee/leg pain after just one dose! So bad, it woke me out of a deep sleep. My dr feels as long as my condition continues to be stable, it is okay not to treat. The positive lab result was quite a while ago. I've had no increased cough, fever, fatigue, weight loss, etc. If anything, my cough has improved since I am diligent about nebulizing with 7% saline & Aerobika plus using compression vest, doing regular exercise and eating a mostly plant based diet, thinking positive - all of which, I honestly believe, are largely responsible for my (knock on wood!) stable condition. This stuff is not easy to figure out. But, thanks to this group, there is much strength in our numbers! All the best to you, too, Kate!