Pseudomonas infections

@irene5 Thank you for responding.
As I indicated to irenea8, it was my belief that you both had a long journey and why I thought it would be good to understand it, not just for me but others in terms of how things can progress for different reasons and to understand the why of you both having much experience and information to pass on to us.
One thing for sure, timing is everything.
I say that because it does appear for those of us just being diagnosed in the last few years with BE and infections....we are lucky with all that has been learned in the last two decades by the pulmonologists who, we can basically somewhat can say about them, educate themselves on all things BE, Bronchiectasis.

I feel lucky, fortunate, and blessed that my PCP finally looked at me and said : "Time for a CT Scan and not just the Ultra Sound or the X Rays. " That was after my continually seeing him and saying "Something is wrong."

I was also fortunate that I knew about National Jewish since the 90's and had insurance that would cover the week's long visit in 2023. Ventured up there to NJH since I realized the local pulmonologist was lacking.

P.S. I think; I may be wrong; in your case, Irenea's case and mine...stress, depressed immune system played a big role in bringing about the journey????? As they say "life happens and we best be ready for it".
Thanks for the details of your journey.
Barbara

@blm1007blm1007
When the Augmentin did not work it was a clue that I may have picked up Pseudo since it does not respond to it. I had read that. I was surprised to learn that the prior sputum tests had NOT included testing for Pseudo. The strange thing about my journey is that up until 2020 I did "ok" with just coughing up mucus once a day routinely. I still had weight on and did ok if not great. Lived a fairly normal life. Something happened very rapidly in 2020 and my whole situation changed. I coasted along for almost 20 years without even nebulizing (did not even know about it stupid me) and then it hit big time. Still no clue why. My pulmo called it "hitting a tipping point" but that is rather vague.

As we know....2019 Covid was floating around out there and we didn't hear about it until a good few months into 2020.

It was 2019 that my bother took a turn for the worse and was going in and out of the hospital for a two week period telling the ER medical people that something was wrong. They finally admitted him his third trip there after sending him home two times. He was on oxygen and had BE per the VA. He called me complaining that they had isolated him in this small hospital room. That was the end of January 2020. He couldn't understand why they isolated him, nor did I at that time. In hindsight I think the medical profession at that point knew of Covid and they isolated him thinking he had Covid. Lost him in March of 2020. My cousin had tried to visit him in the hospital and they were turning visitors away without a reason. She indicated all were masking at the hospital and that seemed strange to her.

Mentioning this again because of your 2020 rapid change, my initial decision that something was wrong with me in 2020 and my brother's last few months December 2019 to March 2020. We will never know but I think what was floating in the air when we were out shopping without masks, for instance, may have exposed us ever so slightly. Of course I don't know that for sure. We were probably not exposed as bad as those in NYC for instance who ride the subway, buses and then walking with five people at your sides, behind you and in front of you. I wonder????

Yes, we often "hit the tipping point' or reach a point where something happens that we could say was " the straw that broke the camels back." That is how I feel about my case with the beginning of this BE journey. My philosophy is that it is never just one thing.

Did you read my post about my last C Scan....all areas of the lungs looking much better.
Also hoping the sputum sent into Tyler should be ready in about three weeks . The last one came back no MAI showing.
I had a visit with a new pulmonologist doctor at OU Medical who is apparently well versed with matters of BE, Bronchiectasis. He immediately said let's get an Infectious Disease doctor looking at it all also. The first one to say that. After looking at all previous tests , the new CT Scan and listening to my lungs....he said I don't need to be on antibiotics. The first of five doctors to say that. My local pulmonologist referred me to him.
Apparently OU is working on becoming a Center of Excellence and they already send sputum immediately up to NJH. If all goes well with this new to me doctor and main OU facility I won't have to drive five hours to the Tyler, Pulmonologist. So much is happening for us BE patients this last year and in this 2026 year.

Again, Irene, thank you for your thoughts early on about "why would you need to go on antibiotics with such a low load of MAI and feeling well.?" You and Sue were right, THANKS.
Barbara

@irene5 I have pseudomonas and tried IV Meropenem. It did nothing. Now I am on Levoquin. I have inflamed tendons in my left foot. The Achilles has not ruptured so the podiatrist put me in a boot to protect the foot while I am on the treatment. I don’t know my outcome yet. I’m still taking the drug. I’m hopeful.

@sharonednaramsey my foot swells almost daily so I put a little Voltaren around the ankle which takes down the swelling and the pain. I also wear the short compression socks which help. The IV antibiotic I’m on now Zosyn for Pseudomonas doesn’t seem to affect the rupture much !
You do have to be sparingly with the Voltaren as it can be toxic to the skin.

@htolan Oh dear, I am so sorry. I will pray for you and that the Levoquin works. Hope springs eternal!! Irene5

The reports that come from the lab that my Pulmonologist uses identifies what bacteria it is and then list various antibiotics that are effective for killing it or getting rid of it. I have Pseudomonas aeruginosa Due to the bronchiectasis and most of the time it seems to be under control with the nebulizing treatments and the other things the doctor has me do. I have seen the lab reports and they say various drugs that would be helpful. My problem is I am allergic to a lot of the antibiotics, such as penicillin, erythromycin, Bactrim. So now we try to only take antibiotics when absolutely necessary. So I’m able to see this information on my patient portal and if you have a patient portal, which most places do now, you might look at it and see if there are medications and exactly what type of pseudonoma you have. I looked it up and it said 80% of pseudonomas are the aeruginosa type. I hope you can find an antibiotic that is helpful for you.

Interesting and helpful! I don’t think the lab my dr uses does that. Or at least it’s not on my patient portal. She just gave the levaquin prescriptions and said it was the only antibiotic that would work. I haven’t taken any of it yet, since I was already coming to Denver so soon.
I’m hoping they do that sort of testing at National Jewish Hospital. I hadn’t thought about about it until Sue said something

We’re coming into Denver right now, and I’m very hopeful.

@sarahlynn1960
Let us know what NJH results are.