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Sun, Mar 10 8:19pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

sounder27 I believe it's a serious bacteria….. I have it in lungs and in sinus cavaties. I recently had sinus surgery because doctors thought perhaps I was getting excessive drainage into lungs. They cultured a sample from sinus and then asked me to use powdered Levaquin in a sinus wash twice daily for two weeks. I did that. I don't know if it got rid of the pro blem but I doubt it. I know that is the main bacteria in my lungs at this time. Apparently it's hard to get rid of. I've had other bacterias throughout the last few years but the pseudomonas has been the hardest for me. Don't know if this helps you at all but I'm sure there are many on here who can share more information.

Thu, Mar 7 2:25pm · Are Nebulized saline and Aerobika beneficial? in MAC & Bronchiectasis

windwalker — thanks for the response. I did email Mayo's today about the shortness of breath and they still want me to stay on it so….. hoping I don't fall over before I get through. Don't feel well on it but it's the first session. They are going to add an oral antibiotic now. We'll see…… thanks again

Thu, Mar 7 1:20pm · New member with questions in MAC & Bronchiectasis

@julez I am responding only to the question of keeping sputum sample in frig overnight. My Mayo pulmonologist says it's fine to do that and I've done it at least 10 times over the last couple of years and it's been fine.

Sat, Mar 2 11:11am · Are Nebulized saline and Aerobika beneficial? in MAC & Bronchiectasis

@windwalker888 Terri, I'm coming on to ask you a question about the toby. I've done three of the four weeks now and my breathing is not good. I never experienced much trouble with it before toby but I'm only able to do short breaths now…… is this a side effect of the med? Coughing is no better and lots of phlegm. I've done only three weeks. I also had sinus surgery at Mayo's and have been doing rinses with Levaquin because pseudomonas showed in the sinus cultures also. Do you have any advice? Thanks much — Jan

Sun, Feb 17 9:39am · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

windwalker — I have another question. Mayo's said I needed a different tubing/nebulizer part for the toby and they gave me one. However, it certainly is slower delivering the product that the one I use for albuterol and saline. Do you have a different type mouthpiece from the one you have used for albuterol? I fail to see why this is any better but certainly I'm not going to question what they say. Would surely like to cut down that delivery time. I'm a full hour or a little more with albuterol, saline, and then toby. Is this your experience?

Sun, Feb 17 8:56am · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

windwalker Yes, I will and thank you for your info. I've taken it a week today but am not feeling the cough is any better so I'm encouraged by your words

Sat, Feb 16 11:06pm · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

wildwalker…… I believe you are on Mayo's program of tobramycin and last week I visited Mayo's in Rochester because they wanted to test me to see I could tolerate it. I did fine with the test and my program is 30 days on (twice daily) and then 30 off. Doctor says if I have flares during the off time he will most likely do two weeks on ///// two off. My sputum testing has been coming back pseudomonas. Also, while there, they did sinus surgery and are hoping they got rid of some of the infection being harbored there. My question is: Do you remember how long it was before you notice good results from toby? I've been on it six days and I don't think the coughing has gotten any better yet. As an added note……. I remember some talking about the expense of this antibiotic and I purchased mine at the Mayo pharmacy and my Medicare paid all of it. Just thought someone might want to know.

Dec 3, 2018 · Long-term Antibiotics for Bronchiectasis & MAC in MAC & Bronchiectasis

spencersok — it looks like my first post did not address your question. I didn't have any significant side effects from the Levaquin. It helped the first couple of times but this last time, it didn't. Further testing and a cat scan of sinus showed a deep infection that they think is causing the cough at this time. I was told at the ER that it is possibly too deep for antibiotics to reach and I'm set up with an ENT in two weeks to see if they can get it out. But….. I think you'll be okay with 500 mg Levaquin. I tried the 750 once and didn't get along well with it.