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Diagnosed with pseudomonas aeruginosa infection in my lungs

MAC & Bronchiectasis | Last Active: Jun 27 9:33pm | Replies (85)
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@gmamac

@irenea8 Well I think there is much more to learn about NCFB. Hopefully bringing awareness to the disease will bring new medications that are affordable, and quicker diagnosis to those suffering and don’t know why. In the meantime we have to figure out what works best for us and work hard at staying as healthy as possible. I remember years ago one of the allergists that I went to told me I didn’t ever want to have pseudomonas it was so hard to treat. But here we are. And it sounds like you are really struggling. Keep us posted on how you decide to continue with your care. Don’t give up, there’s good help out there!

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irenea8 | @irenea8 | Oct 28, 2022

Yes so much more help needs to emerge for NCFB. Oddly enough I have only taken antibiotics a couple of times. 2 years ago Augmentin for 4 weeks when I was very sick. It worked but we do not know if I had Pseudomonas at that time since it was never tested. Could be taking it for 4 weeks is what allowed it to take hold. Then last March I took Augmentin again for 2 weeks but that time it did not work. That is when I suggested they test me for Pseudomonas! I had a "feeling". Since the Pseudomonas I have only done inhaled Toby 5 vials then had to quit due to side effects. Currently I am doing "ok" with saline nebulizing and airway clearance twice a day and inhaled Glutathione every other day (about 2 hours a day all total). Ideally I would like to do something to knock it back but I have so many other health issues that make antibiotics very questionable. That is why I am always looking for a treatment I can tolerate. I had hoped inhaled would be my best option but the Toby was discouraging. I will not give up but it sure can be hard to navigate! Thank you again dear friend.

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