Pseudomonas infections

@kaybast thank you so much. I will keep you and everyone posted.

@sarahlynn1960
Doxycycline does not typically cause tendon issues. That is usually associated with fluoroquinolone antibiotics

Looks like my brain said Levaquin, but my fingers typed doxycycline. 🙄
I meant Levaquin haha

Update: i began taking Tobramycin (TOBI)) this evening. You all may know these things already but I did not. In preparation, I learned several important things. I am not a doctor and it’s best to talk with yours and read the literature.
My doctor and pharmacist told me it is important to nebulize with 7% saline first. Apparently the ability of pseudomonas aeruginosa to fight against TOBI is lessened because the 7% saline weakens the biofilm layer that surrounds this bacteria.
Second, it’s really important to use the most effective equipment. My husband did quite a bit of research. The best air compressor according to the FDA is the DeVilbiss Pulma-Aide with at least 25 psi helping to break the liquid into a fine mist that reaches way inside your lungs. That was unavailable here so we went with the PARI PRONEB MAX which is a good nebulizer compressor with 23.2. Psi. We are ordering the other one. The one I had been using for saline was 15 psi. Also use the PARI LC PLUS nebulizer cup and kit.
Right here I can tell you I used the PARI PRONEB Max this evening for the saline too and noticed a big difference. I coughed more with the saline than I had before but I did not cough at all when I then nebbed the Tobramycin. I was surprised by that because other accounts report a lot of coughing. But we are each different.
Being 81 I am very concerned about the side effects esp re my kidneys so will try to remain well hydrated and get labs midway.
The literature recommends safety goggles since this stuff can irritate the eyes. So can albuterol. So we bought a pair from Home Depot. If you live with someone else or have animal companions apparently it is important to nebulize in a separate well ventilated area of your home or get a special filter with a daily change of the pad it holds. I remember when I first nebbed using 7% saline the flames of our gas stove turned yellow/orange! so this stuff travels through the air easily when in extremely small droplets.
I guess that’s it for now. I will report in if things change. I am hoping and praying that since this is a new infection perhaps the 28-day treatment will zap the darned thing. A thank you to those who sent notes. This is very scary for me. My mom lived with MAC until she was 89 but never had pseudomonas aer. I would like to live at least as long and remain active, too.

@speeched100 I had 4 infections last year, UTI, Lung, Eye and Sinus from Pseudomonas… I was on IV treatment of Zosyn for 2 wks . My white count was up and after 2 wks my while count came back to normal so if was decided to take me off the IV.
3 1/2 wks ago I had appt with my ENT Dr who said my left
Maxillary looked like it did last yr and he took a culture . It came back Pseudomonas , “moderate and few “.. referred back to Infectious Disease Center . I’ve now been on IV Pseudomonas for 3 weeks . I saw the ENT Dr who took a culture 3 days ago and the report came in this morning as “clear”! Yea ! I go today for IV bag change as I have done for past 3 wks. It was due to be pulled tomorrow so hopefully I may be pleasantly surprised and they pull it today !
Great news ! Good luck to all suffering with Pseudomonas !

I’m very happy for you! You give hope for anyone battling this awful disease. I pray you continue to stay well for a long time!!

@sarahlynn1960 Levaquin is a fluoroquinolone. So yes, it can cause tendon issues.

Update completed 3 full days of nebbing w tobramycin.
Other than having to spend a full hour twice a day on the routine of nebulizing first with 7%saline and then w Tobramycin, I am experiencing three things that I have reported to my team that are troubling because my afternoons are essentially shot and I am so hoping that this gets less. Are others experiencing this and what did you do?
Along about 2:30 I develop a deeper hoarse voice, a slight fever, and increased coughing up of mucous that has remained clear to pale yellow. Bottom line the most I want to do is sit and read when usually I am active. Oddly, these symptoms lessen and then go away by early evening.
The second is that coughing disrupts my sleep significantly. Last night I decided to take the child size dose of Nyquil Severe for cold and flu. I slept soundly until 7:30 this morning and at 8 am started my nebbing routine as usual. I ate breakfast afterwards. I hope to now do my stretch routine and mild exercises now since I have learned so far that my afternoons are leaving me a couch potato.

I was diagnosed with pseudomonas in 2012. Over the next 10 years I had five PICC lines, then went to NJH in 2022 and they put me on inhaled Tobramycin. I was able to tolerate it for about a year and a half but switched to Colistin when I started losing my hearing and my vocal cords became scarred. Thankfully, my voice returned (other than singing high notes) and hearing aids helped. When I first started getting hoarse, the ENT recommended nebulizing 0.9% saline (available on Amazon), which helped for a while.
I wish I could tell you that the time spent when you have to nebulize three different things (levalbuterol, 7% saline, and an antibiotic) will decrease, but I haven't yet found a way around it. I do postural drainage after the saline and that can add a half hour to the whole routine. I completely understand why "they" say that bronchiectasis has a High Disease Burden.
Hang in there! Try to find something you can do or read while nebulizing. I spend my AM routine reading my Bible and the afternoon with a library book and that has helped me push through. I hope you find something that works for you!

@kaybast FYI update from above post .
I have been on IV Zosyn for 3 wks for sinus infection Pseudomonas . My ENT Dr took a sinus culture 4 days ago and it came back “no growth” so today the IV was pulled as originally scheduled !
My side affects to the last 3 wks was stomach issues with vomit and diarrhea and extreme fatigue