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2 days ago · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

@auntnanny, Hi Jan! Just a heads up, tobramycin will sometimes kill both pseudo and mac. Are you still doing your inhaled saline treatments?

Tue, Nov 5 10:29am · MAC Treatment: When will I see side effects? in MAC & Bronchiectasis

@wal6578 You may be one of the lucky ones won't have side effects. Some people skate by with no problems on the meds. I had a diff treatment plan than the 'Big 3' and I too had no side effects.

Tue, Nov 5 10:24am · MAC Treatment: When will I see side effects? in MAC & Bronchiectasis

@kathyhg and @sounder27 I had terrible night sweats for years due to the mac & menopause. Have not had them for a long time now, but remember the misery of it.

Tue, Nov 5 10:21am · MAC Treatment: When will I see side effects? in MAC & Bronchiectasis

@derbeltal Hi there. Good luck at the drs today. please keep me posted on what your dr says about the chills.

Tue, Nov 5 9:29am · never treated for + MAC x3 cultures in MAC & Bronchiectasis

@hollyw, Hello Holly. Wow! Sounds like your daughter was very, very ill. That is unusual for a 24 yr old to catch so many bacterial infections. Is there something else possibly going on with her? When they did the CT scan back in May; did they mention that she has bronchiectasis by any chance? If there was no mention of it, ask the doctor if they can take another look at and determine that. That condition can go undiagnosed for years like mine did and could explain why she was susceptible to so many different bacterial infections. A patient should not get CT scans any less than five years apart unless absolutely necessary. CT's are strong and can adversely affect your cells. It would be handy for you to request all hard copies of her sputem lab tests including the suseptibilty tests. You will want to keep these in a file whether paper or electronic. That way, you can know and research the types of bacterial infections she has, and double check the susceptibility tests to be sure she is getting the right antibiotics. It sounds mean to double check a doctor's authority, but you would be amazed how many are not familiar with mac, bronchiectasis or it's treatment options. I am glad that you found this group to help you learn more to advocate for your daughter. There is a wealth of info here if you take the time to read through it. Let me know if you need help navigating this site. How is your daughter feeling now? Is she having symptoms? What prompted you to post today?

Sun, Nov 3 7:57am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jml060448 Hello John, and welcome to our group! I see that you just joined us yesterday. Just above your post, you will see a white box in the purplish/blue field that says 'Oldest to Newest' with a drop down arrow. If you click on the arrow and then click on NEWEST, you will then be included on current conversations. You can also access a list of topics on the Discussion Board that is located on this Group's main page 'Mac & Bronchiectasis. I too have had COPD for years; mine is congenital. I have bronchiectasis also and have had mac and pseudomonas. I have tested negative to both for three and half years. Are you now being treated for mac with the three antibiotic regimen?

Sun, Nov 3 7:42am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@chinasmom, Thank you for being so open and honest about the necessity of wearing pee-pads. I was wearing them also from 2013-2016 when my coughing was constant and violent. That was at the height of my infection. I thought that I would need the pads indefinitely, or need surgery to get my bladder back in better shape. After my mac and pseudomonas infections were cleared up in 2016; all coughing ceased and my bladder (thankfully) returned to normal. Things can get better!

Sun, Nov 3 6:44am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@heathert I feel the same way. The members in our group are like family. XXOX