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 You are echoing the frustration so many of us here have felt with our doctors when it coms to treating MAC & bronchiectasis! You are definitely on the right track seeking care from the best.

Part of the problem is that, even though Connect & NTMir have given us a great deal of knowledge – and the impression that a LOT of people have Bronchiectasis & MAC – these are rare conditions, and there are few articles in the monthly journals that professionals use to keep up on the treatments.

What ends up happening is that they check for the treatment "protocols" through their research portals – and off we go into the adventure of antibiotics.

What is the role of the ID doc? To treat the underlying infection presented to him by the referring specialist. Depending on the professional connection between them, and their clinical protocols, it is usually the pulmonologist who orders the cultures and scans to follow the progression of the infection.

It sounds like, your pulmonologist is a little familiar with MAC & Bronchiectasis, because they did recommend the nebs with saline. As for the lack of instruction on equipment cleaning…that could have been lack of time, my education came from an experienced pulmo nurse – most docs don't have them any more. My daughter's instruction came from a Respiratory Therapist in the Pulmo Clinic – quite rare to have one on staff.

But, it sounds like the ID doc is not, or they would have understood the importance of airway clearance.

It is great that you have an appointment with NJH. They should be able to refer you to a pulmonologist near you for maintenance care. Any exacerbations or adjustments would then be handled through consultation with them.
Please let me know how your appointment goes at NJH, and the plaan of action they recommend.
Sue

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@sueinmn

@kwi You are echoing the frustration so many of us here have felt with our doctors when it coms to treating MAC & bronchiectasis! You are definitely on the right track seeking care from the best.

Part of the problem is that, even though Connect & NTMir have given us a great deal of knowledge – and the impression that a LOT of people have Bronchiectasis & MAC – these are rare conditions, and there are few articles in the monthly journals that professionals use to keep up on the treatments.

What ends up happening is that they check for the treatment "protocols" through their research portals – and off we go into the adventure of antibiotics.

What is the role of the ID doc? To treat the underlying infection presented to him by the referring specialist. Depending on the professional connection between them, and their clinical protocols, it is usually the pulmonologist who orders the cultures and scans to follow the progression of the infection.

It sounds like, your pulmonologist is a little familiar with MAC & Bronchiectasis, because they did recommend the nebs with saline. As for the lack of instruction on equipment cleaning…that could have been lack of time, my education came from an experienced pulmo nurse – most docs don't have them any more. My daughter's instruction came from a Respiratory Therapist in the Pulmo Clinic – quite rare to have one on staff.

But, it sounds like the ID doc is not, or they would have understood the importance of airway clearance.

It is great that you have an appointment with NJH. They should be able to refer you to a pulmonologist near you for maintenance care. Any exacerbations or adjustments would then be handled through consultation with them.
Please let me know how your appointment goes at NJH, and the plaan of action they recommend.
Sue

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Thank you Sue. It sounds like I need to rely on my current pulmonologist for now and hope I don’t get sick before my visit to NJH. I’m just concerned that if I get sick I’ll be bounced between the pulmonologist and ID doctor but mostly be told I should have started the treatment. I already feel like they must think of me as a recalcitrant patient since I am resisting taking the antibiotic treatment at this time and they don’t know what to do with me.

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@kwi

Thank you Sue. It sounds like I need to rely on my current pulmonologist for now and hope I don’t get sick before my visit to NJH. I’m just concerned that if I get sick I’ll be bounced between the pulmonologist and ID doctor but mostly be told I should have started the treatment. I already feel like they must think of me as a recalcitrant patient since I am resisting taking the antibiotic treatment at this time and they don’t know what to do with me.

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When I was temporarily without a pulmonologist (long story, but he "fired" me), my primary stepped in to treat exacerbations until I got a new doc. Is that an option for you?
Sue

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@sueinmn

When I was temporarily without a pulmonologist (long story, but he "fired" me), my primary stepped in to treat exacerbations until I got a new doc. Is that an option for you?
Sue

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Yes, I do have a primary doctor, but I think I would have to clue her in how to treat me. I’ve only seen her for my annual checkups and this past spring was the first one since being diagnosed with MAC. Of course she was unfamiliar with MAC and bronchiectasis. From what I’ve learned from webinars and these forums is that I should not be treated with azithromycin ( if she feels I need antibiotics) or steroids. Am I correct?

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@kwi

Yes, I do have a primary doctor, but I think I would have to clue her in how to treat me. I’ve only seen her for my annual checkups and this past spring was the first one since being diagnosed with MAC. Of course she was unfamiliar with MAC and bronchiectasis. From what I’ve learned from webinars and these forums is that I should not be treated with azithromycin ( if she feels I need antibiotics) or steroids. Am I correct?

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So, I travel a lot, and if I get an exacerbation and need to go to my primary or Urgent Care, I am feeling so rotten that steroids are the only way to calm things down, so I take the short-term risk. Usually it is viral – cold or bronchitis, or a bad asthma attack, so I decline antibiotics. My ID doc recommended this approach almost 4 years ago and it has worked so far – only got antibiotics when it was strep, and it wasn't azithromycin.
Sue

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Thanks Sue. I imagine the asthma is a big complication added with the BE and NTM. So far I haven’t had a respiratory illness in a few years, but I have had a couple of oddball infections, but not given azithromycin. I find myself going to urgent care when I do have something instead of my primary doctor because it’s rare to get in to see my primary the same day.

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@kwi

Thanks Sue. I imagine the asthma is a big complication added with the BE and NTM. So far I haven’t had a respiratory illness in a few years, but I have had a couple of oddball infections, but not given azithromycin. I find myself going to urgent care when I do have something instead of my primary doctor because it’s rare to get in to see my primary the same day.

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Hi Sue, can you clarify "why" we don't take azithromycin" by itself. My understanding is that alone it is the most important drug to have for mycobacterium, but it is also the most important antibiotic to have available for "crisis infections" that could come down the road. They give the other 2 antibiotics (rifampin and erythromycin) to keep our bodies from building up a resistance to the azithromycin so that it can be useful for the longest possible time. Is this right?

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Sorry I meant ethambutol not erythromycin!

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@crepass

Hi Sue, can you clarify "why" we don't take azithromycin" by itself. My understanding is that alone it is the most important drug to have for mycobacterium, but it is also the most important antibiotic to have available for "crisis infections" that could come down the road. They give the other 2 antibiotics (rifampin and erythromycin) to keep our bodies from building up a resistance to the azithromycin so that it can be useful for the longest possible time. Is this right?

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I believe that is correct.
My ID doc, who is also a travel med specialist, calls it his "big gun" – he hates prescribing it, and had to be convinced by his colleague at NJH that it was the drug of choice for MAC. He can't wait for them, or some other research hospital to find a better alternative.
Sue

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The ID doctor's are familiar with the medication routine as it's about the same as TB protocol and know best what to look for that may cause you problems. He also does my sputum check monthly. It is a three med protocol which many of us lay people call it " the big three". Three meds are needed so that the azithromycin will stay working within you. They should periodically be checking for susceptibility after you go on them. If things aren't resolving other medications maybe added. Sterilizing your equipment on a regular basis is important along with daily airway clearance. Mayo clinic has a really good booklet on MAC including positional drainage positions, "huff cough" is another helpful tool which you can look up online. If your symptoms are not bad, they might do a wait and see which would be great for you since you're so unsure of taking the meds and their side affects. But in the meantime, airway clearance on a daily basis would be a good idea. Due to my circumstances I have not gone to NJH but am completely satisfied with my care team from two different health care one being the Mayo clinic in Rochester. Best wishes to you!

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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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