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Discussions
Overwhelmed
Hello all. Four months ago, a chest CT scan showed that I have BE with a suspected NTM infection and a lung cavity. This was a huge shock because I am very active, fit and otherwise healthy. I was regularly swimming 1.5 miles/wk and walking 25 miles/wk with no breathing issues. I only had a very mild occassional cough. Over the past 4 months, I have had many additional tests and a second CT scan confirming pulmonary M. Abscessus infection (cavitary form). My doctor recommends starting treatment with oral Clofazimine, inhaled Amikacin and oral Omadacycline. Needless to say, I am overwhelmed and scared about this disease, the notoriously stubborn infection, and the side effects from the intense treament. Is there anyone out there who has had experience with this bacterial strain and this antibiotic regimen?
Replies
Kay Jay,
Hello! I am sorry to read about your recent diagnosis but I am glad they diagnosed you early, before other respiratory symptoms began. M.Avium and M. Abscessus are the two most common types of NTM. Many others on this site have also been diagnosed with this and have successfully gone through treatment. Being diagnosed with a rare disorder that few understand is overwhelming today the least. Below is a link for newly diagnosed patients: https://www.bronchandntm.org/For-Patients/Learn-More/Diagnoses-and-Evaluation/Newly-Diagnosed
Below is a video on NTM Lung Disease: https://social.bronchandntm.org/resources/detail/17
Below is Part 2 of the video series which includes medications and more:https://social.bronchandntm.org/resources/detail/18
We are here to support you on your journey- you are not alone. Please ask any questions you may have.
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with Bronchiectasis and NTM, please consult a physician before making changes to your own Bronchiectasis and NTM management plan.
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