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Discussions
CT shows NTM MAI possibility but Negative Labs?
Multiple CTs have shown possible NTM MAI but every bronchoscopy and sputum labs have been negative. I have had the fundiplication Ctiff surgery, 4 sinus procedurbues and continue to have heavy thick sputum daily with non-stop coughing. I use 7% sodium to nebulize and when necessary Acetylcysteine with Albuterol. I also take Brinsupri (just started a few weeks ago). I was diagnosed with with Bronchiectasis in 2016 and have struggled for years. Any suggestions/ideas what/where I can find help/answers.
Replies
Lynn,
Hello! Welcome to the community. I am sorry to read of what you have been going through. Have you been seen at a top research center or by a doctor affiliated with the BNTM care center network?
Have they discussed putting you on NtM drugs without the positive cultures? Did they mention that they saw granulomas on the cat scan? Have they prescribed prednisone for an extended period of time?
We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand your concerns. You can also email us at contactus@bronchandntm.orgto get more information on any specific questions you may have.. Our Ambassadors can’t provide medical advice but may be able to assist you with additional resources.
Comments
Lynne,
Have they ever mentioned the diagnosis of hypersensitivity pneumonitis? I have had this diagnosis in the past. Please do reach out when you are up to it.
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