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Newly diagnosed

MAC & Bronchiectasis | Last Active: 1 day ago | Replies (64)

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Profile picture for kathyjjb @kathyjjb

One thing I have learned is how important it is to be your own advocate, along with how little my local "experts" know. No dig on them, it's just that there is a reason why there are clinics that specialize in NTMs. The day my pulmonologist gave me the news that I tested positive to MABC, he gave me a prescription for 7% saline and told me I need to nebulize 2x/day. I later learned, that was really smart on his part. National Jewish NTM/BE Clinic stressed to me how important it is to nebulize with 7%. Studies have shown that nebulizing at early stages of the disease improves outcome. The lab should do a count and determine if your MAC is macrolide resistant, along with which other antibiotics would be classified as Resistant, Susceptible, or Intermediate. On September 13th NJH is having a NTM conference for all those diagnosed with an NTM. This is different than their professional NTM Conference. The registration fee is $25. It may be helpful for you. I have attached info of the conference.

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Replies to "One thing I have learned is how important it is to be your own advocate, along..."

Thanks. The conference is interesting to me. This is giving me more information to ask the IDS at my next appt.
Christine