1. < MAC & Bronchiectasis

Misdiagnosed Mac

Posted by tracy111869 @tracy111869, Aug 26, 2023

Hi new to the group. I have Mac and bronciastasis. Diagnosed bronciastasis back in 2019. Had all symptoms of mac then. I had mri heart which showed multiple nodules. Report of cat scan findings atypical macobacteria Referred to pulmonary doc. Doc ran cultures 2 in a few months time both negative for Mac. Put me on bactrum and levequin. Seems a like better. Then for almost 3 years blood in sputum still weight loss fatigue couph. Mri in May 2022 revealed multiple nodules and much worse lung condition. June did another sputum test came up mac. Then again in august. Hospitalized in October then put on ethanbul and arizomizon for Mac.strange thing is that all my doctors notes pulmonary have disappeared off my portal as well as the broncosopy report. I believe they missed my mac diagnosis and are hiding it now. Appreciate any feedback. Mike

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Rick | @rstel7272 | Jan 4 9:24am
In reply to @kthuerk "My first CT was 2013 after an abnormal chest X-ray. Radiologist’s impression was MAC due to..." + (show)
@kthuerk

My first CT was 2013 after an abnormal chest X-ray. Radiologist’s impression was MAC due to nodules & Bronchiectasis. However, cultures done during bronchoscopy grew nothing. Over the years follow-up CT’s showed mild progression with radiologist saying probable MAC, follow-up bronchoscopies (which I believe are more reliable than sputum that you cough up) were always negative. My symptoms remained minimal. And my understanding is that docs are not supposed to treat with the MAC meds unless you grow the bacteria, plus sensitivity studies need to be done on your bacteria to make sure your bug isn’t resistant to drug they prescribe. Finally in early 2023 my CT showed progression into all 5 lobes, and my culture from bronchoscopy was positive. So it took 10 years for me to have a positive culture. I am currently taking Ethambutol and Azithromycin (couldn’t tolerate Rifampin or Rifabutin). I think this disease is tricky and the medications can have serious side effects. Just like doctors shouldn’t prescribe antibiotics for strep unless you have a positive throat culture, even though it looks like strep, I think they have to be careful prescribing for MAC. Glad you’re feeling better.

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I can retrace my history with Mac for 6-7 years before I was diagnosed. Unfortunately, I developed cavitation and scar tissue during that time.

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gjsky | @gjsky | Jan 9 8:33am

Appreciate help . CT regularly since 2014. Mac and bronchiectasis. NO treatment. bronchoscapy 2020 nutrophils. 1colony aspergilla. worse and new nodule 2023. east central Florida and Ky. Need ntm etc pulmonologist. 3hrs to mayo jax. 3hrs cleveland clinic weston. 3minutes cleveland clinic vero beach.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 9 8:49am
In reply to @gjsky "Appreciate help . CT regularly since 2014. Mac and bronchiectasis. NO treatment. bronchoscapy 2020 nutrophils. 1colony..." + (show)
@gjsky

Appreciate help . CT regularly since 2014. Mac and bronchiectasis. NO treatment. bronchoscapy 2020 nutrophils. 1colony aspergilla. worse and new nodule 2023. east central Florida and Ky. Need ntm etc pulmonologist. 3hrs to mayo jax. 3hrs cleveland clinic weston. 3minutes cleveland clinic vero beach.

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@gjsky Welcome to Mayo Connect. If you have easy access to Cleveland Clinic, they do have expertise in Bronchiectasis & related infections. Mayo Jacksonville is also another good choice.
Here is the contact link for Mayo:
http://mayocl.in/1mtmR63
If I was looking for an appointment, I would call both, tell them what my diagnosis is, and see who has the appointment that best fits my needs.
Sue

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