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Sun, Jan 12 9:47am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have always been told that the only way to get rid of the NTMs is to boil it in water (that has already boiled) for 10 minutes adding an additional minute for each 1000 feet above sea level. So, unfortunately, cleaning and rinsing for however long in hot water will NOT get rid of the bacteria. Hope that this is helpful.

Dec 13, 2019 · flutter problems in MAC & Bronchiectasis

Fluttering problems once again! I did not see any build up on aerobika but did soak in vinegar and water about three weeks ago. Soaking now for an hour of 1/2 distilled white vinegar and 1/2 distilled water. Had to keep hitting the side of the aerobika as I used it this morning in order for it to continue to flutter. Aerobika relatively new. Anyone else have this problem and solved it the same way or differently? Hope that soak does the trick as I don't want to be buying new aerobikas all the time. I am a daily boiler; after use, do give a quick swish in cool Dawn sudsy tap water and then quick rinse in cool tap water before boiling for required time. Any thoughts/suggestions would be appreciated. Hard enough for us to do all this without fluttering problems.l

Oct 7, 2019 · Testing Positive and Negative after MAC Treatment in MAC & Bronchiectasis

Sorry forgot to reply to the two year confusion: I had been on the meds for two years when I was taken off after all those negatives. Bummer when the one given at that visit tested positive.

Oct 7, 2019 · Testing Positive and Negative after MAC Treatment in MAC & Bronchiectasis

I had an appointment with my doctor and at that time, he took me off the meds because I had tested negative five times in a row. On that very day, I supplied another sputum sample and weeks later that came back positive. So it really was positive when I was still on the meds because it was the sample given on the appointment date when I was to go off the drugs. It appears that I sometimes test positive and hopefully sometimes negative. My local doctor in concert with National Jewish will not only monitor my sputum but will also consider colony count, any CTs, and symptoms in deciding whether or not I need to restart meds or begin arikayce with other meds. What maintenance drugs are you on to fight any possible future infections? I know that just being on azithromycin alone appears to be controversial. Looking forward to hearing what you are taking for maintenance.

Sep 27, 2019 · Testing Positive and Negative after MAC Treatment in MAC & Bronchiectasis

When I had my last appointment with the doctor, he took me off drugs because I had had 5 negatives in a row and it had been two years. At that appointment, I gave a sputum sample and lo and behold, it came back positive. I have not had a bronchoscopy. It appears that I intermittently test positive. My local doctor and Dr. Huitt at National Jewish will go by symptoms, CT scans, and colony count (magic number may be 50) in determining when and if (probably just when) I should return to the meds. Hoping and praying if it must be that it will be in future. Who knows! Have an appointment at National Jewish in November. Just wondering if there are others reading this blog who intermittently test positive after completing the drug treatment. Would like to hear from them.

Sep 27, 2019 · Testing Positive and Negative after MAC Treatment in MAC & Bronchiectasis

Right after I stopped taking the drugs (was on for 2 years having had 5 negative sputum in a row), I tested positive. I now seem to test intermittently positive. I was wondering if there are others who test sometimes positive and sometimes negative AFTER finishing treatment. For now not taking any meds as doctor is concerned with symptoms and not exclusively with sputum results. Would like to hear from others who are testing sometimes positive and sometimes negative AFTER finishing treatment. So comforting to know that we are not on this journey alone. Always appreciate the feedback.

Aug 17, 2019 · intermittently testing positive for MAC in MAC & Bronchiectasis

Thank you for responding. Much appreciated. I was referring to what appears to be the first fast look at a sputum sample that I sent to National Jewish. I can't believe that they would send this out on their portal without a phone call explaining to any patient what the preliminary results mean. They have never had sputum sample results on the portal before … maybe they have changed their minds on releasing it as they release other medical test information. ??? So true, this is a frustrating infection any way you look at it. Wishing everyone better health.

Aug 17, 2019 · intermittently testing positive for MAC in MAC & Bronchiectasis

Do some of you intermittently test positive? Had a couple of negative and now testing positive. This is after I stopped the meds after taking them for two years. Just got back preliminary early results from a portal that indicate that something is brewing. Hate getting messages late on Friday night when there is no one around to question.