Connect
← Return to Have Bronchiectasis, recently diagnosed with pseudomonas
Discussion
Have Bronchiectasis, recently diagnosed with pseudomonas
MAC & Bronchiectasis | Last Active: Sep 30 4:40pm | Replies (211)Comment receiving replies
Hello auntnanny - I was going back through past messages and found yours from 2018 about pseudemonas. Did the 30 days on, 30 days off of the Toby get rid of your pseudemonas? Did you do that for a full year? The many times of my using Levofloaxin for my pseudemonas over the last 6 years has now resulted in neurapathy in my feet and toes. I now have pseudemonas again but I am afraid to take the Levo for fear of the neuropathy getting worse. My doctor says nothing else treats it. Can you tell me about your experience with the Toby and your pseudemonas? Pamela
Replies to "Hello auntnanny - I was going back through past messages and found yours from 2018 about..."
@pamelasc1 Your doctor needs to run a sensitivity test on your most recent culture to see what medicine will work best in eradicating or controlling the bacteria. There are several medicines that can be prescribed for pseudomonas but without the sensitivities test, you won't know which ones are most effective to treat it. My pseudomonas is entrenched in my lungs. I have used inhaled Cayston, Colisitin, Amakacin, Tobramycin and oral antibiotics as well to control it. @lindam272
Connect
Hi, Pam..... I was told by Mayo's the tobramycin was the only way to rid the pseudemonas and they asked me to come to Rochester for a trial with it before starting the program. I did that and I did a vial through a nebulizer while someone there was with me -- no problems. So, I was given the prescription for it and was told it would take possibly a year for it to rid the bacteria. I got along with it okay for maybe 2 months and then started having difficulty breathing when I used it and it was very scary to me and I was taken off it. I've never tried it again but perhaps I will one day. I've been off it about 2 years now. I do know two ladies,though who are using it and never have any trouble with it and the results are good. So...... let me know if you give it a try. It's very expensive but my doctor at Mayo's wrote a prescription for me and Medicare picked it up.