Does Infectious Disease need to be part of overall team?

I actually am in your same position with six month pulmonary visits. However, I was referred to an ID specialist last fall who was very thorough. After evaluating previous CT scans and medical data from pulmonologist , I was advice to continue my regimen of airway clearance and see her again after my next pulmonary doctor visit.

Many people do but I do not. I have an excellent pulmonary doc who is an expert in NTM. The infectious diseases doc I did see was not helpful at all. I couldn’t see how he could help me so I just go to the pulmonologist.

@carolinediehl Hmm, this is one of those situations where the answer is the much-hated "I depends."
If you have a highly skilled pulmonologist who is familiar with treating MAC/NTM and you are responding to the standard treatment protocol, you probably don't need an Infectious Disease doc, and your pulmonologist would probably advise you when it is time to add one to your team.

On the other hand, if your pulmonologist is not very experienced in treating NTM, adding the skills of an ID doc would be helpful. Or if you have many other health issues, or limitations on the medications you can take, an ID doc is recommended. Finally, if you don't respond to treatment after 6 months, my pulmonologist says it is time to find another specialist to help treat you.

Are you comfortable and confident in the treatment you are receiving?

Yes and no. My last visit he opened up more about his training. He said he studied under the head of pulmonology at the Cleveland Clinic in Florida. BE is not his top 5 DX treated. I kind of want a bronchoscopy to at least see if I at least have MAC besides BE. He sees improvement in latest CT and feels there is no sense in a bronchoscopy because he doesn't think I could handle the treatment for MAC. Shouldn't that be my decision?

I would not ask for a bronchoscopy myself unless absolutely necessary. It is an invasive procedure with risks of its own, including potential introduction of new pathogens and bleeding.

Instead of a bronchoscopy, if I were in your situation, I would seek the opinion of a bronchiectasis expert - there are more available all the time, you don't necessarily need to travel to Mayo or NJH.

Have you seen the new list?
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Go here to get an appointment at a center near you: https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center

@carolinediehl yes, it should be your decision whether to treat MAC, assuming you have MAC. I also agree with Sue that a bronchoscopy is not to be taken lightly. Are you unable to do sputum testing? I had a hard time with sputum testing (kept getting the respiratory culture rejected as insufficient as I have very little mucus) but they were nonetheless able to use my samples for the AFB testing (which tests for NTM). I just recently got my first respiratory sample approved (after 5-6 tries). I did a double vial of 4ml with the Pari Sprint. The Pari Sprint really pushes the saline -- at first it felt a little overwhelming compared to the Aeroclipse. But once I got use to it I much prefer the Pari as I find myself more productive, especially if I use two 4ml saline doses which has become my norm (and takes the same amount of time with the Pari as one 4 ml dose in the Aeroclipse). I did the sample at home with all my breathing exercises, etc. and then refrigerated until I took to the lab. If you have tried every which way to get a sputum sample and simply cannot, then my next question would be what do you hope to achieve with treatment, assuming you have NTM? There are essentially three main goals to treatment: improve symptoms, improve CT, convert to culture negative for NTM. If you feel ok and your CT is improving, is it worth the risks of a bronchoscopy to find out of your culture status? Of course this is a very personal choice and each of us may have a different answer. Some patients really want to know. But those patients also need to know that death is listed as a potential outcome on the informed consent form for a bronchoscopy. Certainly a rare risk, but it happens (and that is why it is on the form). Sue has pointed out other risks. This BE/NTM journey as one long balancing act, where we have to balance the risks of one course of action with the risks of another. Because of that I think, if at all possible, we each need to get ourselves to an NTM specialist. We are asked to make difficult choices, and we want the best resources to help us make those choices.