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New to the site… bronchiectasis, Pseudomonas and Tobramycin

Posted by mffox @mffox, Jun 23 8:18am

I just found this group…. Here’s my story:
Diagnosed with MAC in 1997 (detected early). 2 rounds of treatment over a total of 3 1/2 years eliminated it. No recurrence since, but other infections have been present, with progressive damage to lungs evident on CT scans. Lots of antibiotics over the years, minimal use of steroids.
Use Afflo vest and neb Perforomist twice a day, 7% saline daily. Also Spiriva inhaler and Albuterol as needed.
I’m 80, weigh 97 lbs, swim laps daily up to 40 minutes, walk at least an hour daily, do yoga, occasionally bike and basically arrange my life around my lungs.
Cough frequent, very productive (@ 1/2 cup of ugly dark sputum daily, occasionally with frank blood). Colonized with Pseudomonas, which became resistant to Levaquin 7 years ago. IV Ceftazadine reduced severity, but didn’t eliminate infection.
Started a trial of nebulized Tobramycin May 1st - 28 days on,28 off. I last coughed up discolored sputum a few days into treatment!
The effect has been stunning…. No coughing, great energy, I find it hard to believe. I haven’t been able to lie on my back in 20plus years, now I can swim the backstroke!
Has anyone else had a similar experience? How long can one stay on Tobramycin? Aside from the yucky taste, I have no side effects.

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irenea8 | @irenea8 | 1 day ago
In reply to @kaybast "Wow…that’s awesome . I had 4 different infections last year and through culture from sinuses ,..." + (show)
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Wow…that’s awesome . I had 4 different infections last year and through culture from sinuses , sputum from lungs it showed Pseudomonas . Was treated with IV antibiotics . Earlier this year, sinuses culture showed Moderate Pseudomonas colonized. Again 21 days of IV antibiotics . A couple of months ago I brought up a sputum from the lungs and the report showed Pseudomonas colonized , however I had no symptoms and therefore was not treated . I was at ENT Dr last week as sinuses were inflamed again so he cleaned and vacuumed what he could . He has put me on an antibiotic rinse of 3 different meds .so hoping that this will help and perhaps eradicate any Pseudomonas hanging around . Again happy to hear of your success….P,S. This was response to MFox. Best. Kay B.

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@kaybast
If you have Pseudo colonized I would imagine it would also be in the sinuses. I know mine is. Let me know how the rinses help. How long do you do the rinses? Do you know what the three meds are?

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kaybast | @kaybast | 20 hours ago

@irenea8 …..yes, earlier this year, I had a sinus infection , a culture was taken and it showed Pseudomonas , was referred back to ID Dr for IV treatment .
My ENT Dr wants to try this antibiotic rinse application in hopes it will keep infections at bay. He had a facial / bone CT scan done and the left side is all white while the right is black . (Left side being the problem area );
The meds are abbreviated so hope you can interpret …CIPR/ITRA/MOME. Had to be handled by a compound pharmacy
I do two rinses a day. The RX does not say for how long.
However it does show refills. I have another appt with my ENT Dr at the end of this month so he will no doubt have a look at my sinuses and assess the
situation and give me direction as to how long to continue .

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