What is the role of an ID doctor?

Posted by kwi @kwi, Sep 11 8:01am

I am relatively new to MAC, having been diagnosed last fall after a bronchoscopy after seeing a pulmonologist for the first time ever. I have no symptoms, bronchiectasis was found incidentally from a CT for something else. My pulmonologist started me on airway clearance (nebulizing albuterol and 7% saline), but no instructions on cleaning and disinfecting. Most of the information I am getting on how to deal with MAC is from here, NTMir, and an online support group. The pulmonologist sent me to an ID doctor. He immediately dismissed the nebulizing as doing anything. Whenever I asked questions about sputum checks or other things during treatment, he said that would be up to my pulmonologist. Seems like all he wants to do is prescribe the meds and that’s all he would do. Is the ID doctor someone you contact if you are having problems with meds, you have exacerbation, etc.? I have very little confidence in him and plan to ask my pulmonologist for a referral to a new ID. After my last visit, he pretty much told me I don’t need another appointment with him until I decide to take the antibiotics (fine with me!)
My pulmonologist is also pushing for treatment, although she seems relatively unfamiliar with what to do other than prescribe airway clearance and push for treatment with antibiotics. She has not done any sputum checks or anything since my diagnosis 11 months ago. I last saw her this past February (after a scan). Seems she doesn’t know what to do with me since I refuse to take the antibiotics at this time. I have a “follow-up” appointment this month and she’s not even doing a lung functioning test.
Last month, her office called and said after a review of my records by the supervisor of the respiratory therapist section, I am eligible for a vest-6 months after my last visit and last lung function test. Good news is that I am going to NJH in December, but I know if I get sick, before or after my visit to NJH, I have to deal with my local doctors, who apparently know very little about MAC, other than the guidelines for treatment and my primary doctor has never heard of MAC.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

kwi: Welcome to MAC and bronchiectasis 🙂 I was first diagnosed with it 10 years ago and the first pulmonologist who saw me didn't recommend any treatment. Evidently she'd had a patient who got C-Diff from all the antibiotics and she didn't think the treatment was worth it. I saw another Pulmo (my current doc) who started me on ethambutol, rifampin and azithromycin. I took them as directed for 15 months. The third bronchoscopy I had in 2014 showed resolution of the MAC. Great!

But after having Covid twice (even though fully vaxxed) the culture from my routine bronchoscopy in June showed that – just like Mack the Knife – MAC is back again. Because I have kidney disease, which all those antibiotics could have caused or at least exacerbated, I am refusing another round of antibiotics, including the (very expensive) inhaled Arikayce. I feel like I could go through another 12-15 months of antibiotics and the MAC will eventually recur anyway. And further damage my kidneys.

Next week I will see an Infectious Disease doctor also trained in Nephrology and am hoping he will suggest a treatment plan without antibiotics. I have a nebulizer but no nebs at present and am interested in the saline treatment mentioned here along with Aerobika. I don't cough much and it is never productive. Things like Mucinex have never worked for me because of the bronchiectasis that is like a nest holding onto mucus. So I'm hopeful that the ID and the Pulmo will agree on something I can live with.

Good luck to you. This is a good space to get information and support!

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@lupine

kwi: Welcome to MAC and bronchiectasis 🙂 I was first diagnosed with it 10 years ago and the first pulmonologist who saw me didn't recommend any treatment. Evidently she'd had a patient who got C-Diff from all the antibiotics and she didn't think the treatment was worth it. I saw another Pulmo (my current doc) who started me on ethambutol, rifampin and azithromycin. I took them as directed for 15 months. The third bronchoscopy I had in 2014 showed resolution of the MAC. Great!

But after having Covid twice (even though fully vaxxed) the culture from my routine bronchoscopy in June showed that – just like Mack the Knife – MAC is back again. Because I have kidney disease, which all those antibiotics could have caused or at least exacerbated, I am refusing another round of antibiotics, including the (very expensive) inhaled Arikayce. I feel like I could go through another 12-15 months of antibiotics and the MAC will eventually recur anyway. And further damage my kidneys.

Next week I will see an Infectious Disease doctor also trained in Nephrology and am hoping he will suggest a treatment plan without antibiotics. I have a nebulizer but no nebs at present and am interested in the saline treatment mentioned here along with Aerobika. I don't cough much and it is never productive. Things like Mucinex have never worked for me because of the bronchiectasis that is like a nest holding onto mucus. So I'm hopeful that the ID and the Pulmo will agree on something I can live with.

Good luck to you. This is a good space to get information and support!

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I hope that the ID doc will come up with a plan that works with your CKD!
Sue

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