Connect
Pseudomonas aureginosa: When did your doctor decide to start treating?
When were your pseudomonas treated and how did your doctor decide it was time to do it? I have bronchiectasis, MAC and was diagnosed with pseudomonas in August. My pneumonologist thought it was colonized and I did not have symptoms so she decided not to treat it. I had my sputum culture last week and again pseudomonas was grown. Now she wants me to decide if I want treatment with Cipro if I think I need it. How do I know if I need it? I asked if they counted the size of colonies (I don't know if they even ever do it) but the nurse who called me did not know the answer. So if you had pseudomonas, please respond to my post and share how yours was delt with. I am scared to start another antibiotic and is it better to start early the treatment or wait for symptoms (what kind?)?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@smc17 last year I had 4 different infections one after another , UTI, lung, left eye and left maxillary …my ENT Dr took a culture and my pulmonologist had a sputum culture from me. Both showed Psuedomonas . I was referred to the Infectious Disease Center and put on Zosyn IV antiobotic thru a PICC line for 14 days .
This year it showed up again in my left maxillary , the ENT Dr took a culture and it came back with Psuedomonas . Referred back to the Infectious Disease Dr, put on Zosyn IV through PICC line for 21 days. Dr did another culture at the end of 21 days and it came back “no growth “… good news !
-
Like -
Helpful -
Hug
1 Reaction@smc17 Perhaps look for another doctor who specializes in Bronchiectasis treatment and is proactive.
-
Like -
Helpful -
Hug
1 Reaction@kaybast
Do you think the 21 days vs 14 made the difference?
So this is an update on my battle with pseudomonas.
My pulmonologist from NYU first put me to Toby , all went well for about 2 weeks then I start to have ringing in my ears, so we discontinued that med.
I did however, have immediate improvement of my symptoms, more energy, less mucus and coughing. Next I started on Levofloxacine, about 2 weeks later developed muscle pain in every joint and muscle! Dr took me off that and the pain went away quickly, symptoms still much better. Now I have been in inhales colistimethate for about 5 weeks out of a 6 week cycle. Symptoms worse! More mucus and coughing, trouble sleeping and terrible night time leg cramps! I see my Dr is n 4/14, so I’ll see what’s next! The adventure continues.
-
Like -
Helpful -
Hug
1 Reaction@irenea8 yes I do !
@smc17 last year the pulmonologist when he received the results of the sputum culture knew that the ENT Dr has received the same results from the culture he took . the
Pulmonologist immediately referred me to the infectious Disease Center who had called them and they sat up an appt a couple weeks away. the Pulmonologist called back that afternoon and wanted to know if I had been contacted to set up appt. I told him yes and the appt was a couple weeks away . He said no no I want you seen now . I received another call and was told to come in the next day. Meanwhile the ENT Dr called to let me know what showed up in the culture and I told him that the Pulmonologist had already referred me to the Infectious Disease center and he was pleased .
This year when the maxillary culture came back with Psuedomonas the ENT Dr immediately referred me to Infectious Disease Center ,
@kaybast
How long ago was the treatment? Do you feel it is still low? Was your treatment a 24 hour drip or infusions two or three times a day? At home? Thanks for the input. Appreciate it. I am on day 14 of Meropenem today but feel I could not continue longer. Have not tried Zosyn and afraid it would give me insomnia as it can do.
Last treatment just 3 weeks ago… . 24 hr IV through PICC line for 21 days..so continuous flow. . I had to go to Inf Disease Center every day to have the bandage and around the PICC line cleaned and flushed with saline and heparin and then a a new med bag put in and programmed to the machine to dispense 24 hrs daily! This all fit into a fanny pack like bag to be mobil and able to carry around with me …..and sleep with it. So I was on continuous flow 24 hrs a day for 21 days. Last year I was on it only for 14 days so I definitely think the 21 days did the trick as the culture came back “no growth “
I did not personally have any sleep issues with the Zosyn.
All the best to you and your treatments !
@kaybast
Thank you so much. How does one sleep with a fanny pack! Or do you?
For anyone battling Pseudo, they usually try Toby inhale and Cipro or Levo (oral) first but many people do not tolerate them. Some do. Personally I think the IV options are the most effective. Often it is the thing that works best and especially if done early on in diagnosis.
-
Like -
Helpful -
Hug
1 Reaction@irenea8 it really worked well.. I put a pillow next to me and laid the fanny pack on the pillow there was sufficient lead of the tubing going from the IV packet to my arm for some movement . I could lay on my
Back or turn on my side toward the pillow /pack comfortably .
I agree with you that the IV options are the best !
-
Like -
Helpful -
Hug
2 Reactions