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← Return to Pseudomonas treatment ?
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I am immediately hospitalized with an infection and put on IV antibiotics. They use something that was effective for the last infection until the sputum culture results come back. Use any and all inhalation drugs you can. They all help. I have heard that pulmozyme is not useful with NCFBE but my doctor who takes care of me when I am hospitalized suggested I use it. I get it paid for by the company who markets it. Anyone can apply. I pay nothing. Cayston is now covered for NCFBE! I was approved right away! I am on Medicare/Medicaid. I do NOT have CF. Yes, I will be inhaling tobi one month and cayston the alternating month for the rest of my life. Use any and all meds you can. I walk 5000 steps a day. lift light weights, do yoga and kung fu. It is important for us to be in top shape. Helps you breathe, helps you fight against infections. I have pseudomonas which is not curable so I also do not drink water from faucets. I use a .2 micron filtration Lifestraw pitcher. I do not take a shower. It's dangerous due to aerosolizing pseudomonas. My faucets have the aerosolizers taken off. I bathe standing at the kitchen sink with a wash cloth. I wash my hair in the kitchen sink. I boil my neb cups after each use for 12 minutes every. time. I. use. them. which is 3 times a day. This is my life now.
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Hello Beejenigma
Yes, "It is important for us to be in top shape."
My belief, for myself, is that originally and before symptoms of my illness began, my immune system was depressed ( I was under extreme unrelenting stress, not sleeping well and was eating too many unhealthy items) and allowed me to be more vulnerable and susceptible to contracting MAI. Don't know for sure.
Yes, "It is important for us to be in top shape."
With finally learning that I have BE/MAI and a Hiatal Hernia I am doing much to try and keep the immune system in better shape/good shape...as I imagine, we all are doing as best we can considering every persons big life picture.
I have also done some of the things you have mentioned once I learned and was able to educate myself on, what to do, after finding this site.
Wishing you the best of care and strength to do all you know you must do for yourself.
Barbara
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That is major news that Cayston is now covered for NCFBE. Thank you for letting me know. When I tried it, it raised my heart rate quite alot. But I should try it again and see. I cannot use Toby as it caused reduced urine output for me. Even inhaled it can impact the kidneys for some people. If you can use it, you are fortunate!