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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one. Especially if we don't "feel really sick" - just coughing, or tired. Even harder to decide as we get a little older, and our bodies are more sensitive to medications.
But remember, "treatment" isn't only about the drugs. There is a lot you can do to help your body fight the infection without them - daily airway clearance, 7% saline nebs, good diet and exercise.
Here is a great video from NJH about how the experts make the decision to treat now or to wait and watch. They are talking specifically about hard to treat cases, but their explanation is very good. It's a little long, with a lot of numbers, but the bottom line is that there are choices.
https://www.youtube.com/watch?v=bcvHKHzi4Q0&t=1388s
Watching it and making a few notes might give you a great starting point for talking with your doctors. Don't be surprised if you get shrugs from your primary docs - this infection is uncommon enough that even a lot of pulmonologists only see a few cases in the course of their careers. That is why specialty centers like Mayo, NJH, and a few others are so important to our understanding.
Good luck with your decisions, whatever they may be. The group is always here to answer questions and give encouragement.
Sue
Replies to "@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one...."
Sue, I can’t tell you how much I appreciated the video. It has given me heap and heaps of NEW information. I am 66, female, and had chronic bouts of bronchitis throughout the pandemic. apparently now my lungs look like the Mississippi delta. I had a bronchoscopy a few days ago and awaiting with trepidation as to what little stowaways I am housing. I’m up in Toronto and under an impressive Bronchiectasis/CF team at St Michael’s Hospital. I’ll update the forum with the results and prognosis, I value everyone’s opinion here.
Thank you Sue. I had a great conversation with my primary Dr. He thinks I should start the meds, but agreed with me that I should introduce them gradually, say two weeks apart. That way I will be able to determine which one is making me sick if any. I am getting the Prevnar 20 tomorrow and will be getting RSV soon. I had the flu in August, but he still thinks I should get the flu shot. I am also going to Infectious Disease Dr. just for a second opinion and to share some insight into this disease etc.
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Dear Sue,
I am so grateful to have found this site. I so appreciate all the encouraging remarks from members of this group. I have always been relatively healthy; and have never had any symptoms of Bronchiectasis in the past. So this MAC diagnosis came as a surprise. I exercise regularly and eat a balanced diet.
Doctor has me on 3% saline. Should I request 7%? I have read that it can be irritating to the lungs.