Discussions
Discussions
NTM and Bronchiectasis
I was diagnosed over 12 years ago with MAI and bronchiectasis. After having been to several doctors, I am going to one now that is treating me for asthma. I feel good using Symbicort but wonder if I should have more extensive testing to see if I still have MAI or if I should leave well enough alone. Help!
Replies
Hi Kathy,
Did you go through the standard treatment regimen 12 years ago for MAI? 3 antibiotics for at least 18 months, then at least 3 negative sputum cultures? That is what I understand is standard protocol. I can't tell from your post if you ever started culturing negative for MAI after treatment. I'm not a doctor, I'm a patient, and don't know your health history, but as I understand that using steroids, (Symbicort) on a regular basis can be a problem for those of us susceptible to MAI / NTM disease. I suggest you consult with a physician who has lots of experience with MAI / NTM disease. Laura
Thanks, Laura. I tried to do the three drug regimen but eyesight was changing so we discontinued one medication and with the two I lost ten pounds in one month. We had to stop. After that, I was receiving CT scans once a year until going to this doctor. He does the breathing tests every three months. When I have a flare up, he puts me on a steroid for seven days (tapering type) and an antibiotic. That is all the only treatment I am having. Have not had any sputum cultures in several years.
Yes, taking these antibiotics can be difficult. If you had CT scans once a year, what was the diagnosis? Progression, improvement? That would be important in deciding course of treatment. Again, my recommendation, not knowing where you live or if your near a center that treats NTM, I would seek out a physician that specializes in NTM. It is not a condition to take lightly as it does progress. If you would like further information let me know.
Laura
Hello! ! It is highly recommended to get sputum culture and sensitities periodically to see if anything is growing. This is a painless, minimal time task which serves as a good baseline.
B
Wonder if your on weekly antibiotics it wouldn't give a true culture would it? We did that once already and they said was fine but I still think there is something there. Why get worse after a hospital stay? I often wonder that.
Goid morning! Yes, being on antibiotics would interfere w true culture results.
Unfortunately, many people get infections while in the hospital , aka nosocomial infections. We have a weakened immune system to begin with and are very easily infected. The more we learn about infection precautions, the better we will be.:
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