never treated for + MAC x3 cultures

Posted by hollyw @hollyw, Tue, Nov 5 8:53am

My daughter ,24 yo , was sputum culture + three times for MAC in May 2018. She also had 2 other bacterial infections at the same time with mulitple lung cavitations with pneumonia and pleural effusions. She was in ICU for 3 weeks and released after her chest tube was pulled. SHe was treated for the other bacterial infections with 6 weeks of combinations of oral and IV /PIC line antibiotics: metronidazole, and 2 common ones I can't remember . But they didn't get the third + MAC culture until she had completed the 6 weeks pneumonia treatment and she was feeling great. They elected , after consulting with MAC specialists in Colorado to not treat the MAC since she was doing so well and just follow her for symptoms. It has been 1 and 1/2 years and no fever , severe cough or fatigue. I thought that she should at least get a repeat CT or MRI scan to see if there was complete resolution of the cavitations but the last local doctor said no. They recommend waiting to see if has a symptoms. Does anyone have any experience with MAC completely resolving or going into long remissions without treatment much like TB did prior to TB – antibiotics? Or is it possible that she has killed off the MAC ? Is there any way of knowing? She also has chronic severe persistant asthma x 10 years but that has also miraculously improved over the past few years and didn't flare during all of the MAC and pneuonia. Thanks so much , Holly

@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?

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