Is it necessary or helpful to see an immunologist to deal with MAC?

@dls224 There is no hard and fast answer to this question. A case of MAC can certainly be treated by a pulmonologist who is familiar with bronchiectasis and NTM.
But...if there are other complicating factors - a strain resistant to the usual antibiotics, multiple infectious agents at the same time, failure to respond to the standard antibiotic protocol, allergy to any of the usual antibiotics, or other serious illnesses requiring medications, an ID specialist can be invaluable.
Many NTM specialty clinics, or doctors who treat it regularly, have an ID doc with whom they consult. It is important that the specialists work together because it is not a matter of either/or. You still need the pulmonologist to manage your lung care.
Have you gotten an appointment with a MAC pulmonologist?
Sue

Thanks Sue! I understand all you said and I do have an appt with an ID dr at Mayo in October.

I have a local pulmonologist I’ve only seen twice and the second time was for the bronchoscopy! He’s very old school and doesn’t even advise airway clearance!

I’ve had tele appt with Dr Johnson at Mayo also and plan to see her again when I get scheduled she’s very booked now!

I just got my positive AFB from the early August bronchoscopy two weeks ago. Since then I’ve been learning as much as fast as I can and hustling to get my ducks in a row with excellent care options!

I’ve got back up plans for myself with all the best drs with Bronch/NTM I have the ability to see in a timely manner; with hopes to hear their opinions of my case before I begin any treatment if possible.

I’m going to Dr Swenson in Atlanta later this month; I’ve got Mayo Jax drs; I’m going to possibly go to UNC Dr Olivier; I’m on the waiting list for UT in Tyler and I’m planning to go to NJH when they schedule me within ten days they said after the nurse intake I did last week!

So I’ve been busy to say the least!

I was actually inquiring about the necessity of an immunologist/allergist ?

I understand the role and importance of a good ID dr and ageee with you!

Have you seen an allergist/immunologist tho ?

A friend told me I needed to do that and I’m wondering if that’s truly necessary or opinion ?

Thanks so much Sue for the response and for all you do here!

Sue I am looking for MAC bronchiectasis specialist in the Chicago area or neighboring states. Can you remember any who is accepting new patients or seeing them for a second opinion.

Dls, That's a lot of providers you list ❤. Let me possible save you some time, when you go to NJH you must insist on Dr Daley or Dr Kasperbauer in the NTM department. I was at NJH for 6 months, switched back to my local Dr's (I am in Colorado), and am planning on a Mayo visit next year.

Thank you!! I did request Dr Daley! I’m going to be scheduled in January from what I understand just have to give scheduling more time. I may not choose to travel there until next year in the summer tho due to not wanting to fly and us being Floridians who aren’t used to snow etc..

Mayo seems very good to me! The one here in Jacksonville has a very good pulmonologist and I am going to see her in November.

I just like to give myself options and I will go with intuition and gut once I meet in person.

Hope you like Mayo. I assume you’d go to Phoenix location or MN?

Thanks for the input!

I do see not see an allergist or immunologist - I don't feel it necessary for me.

Wow! you really have a lot of appointments lined up. My suggestion for you is to settle on one (or possibly 2 if you get into NJH) pulmonologists who are familiar with MAC. You will be able to get all the care you need. And doctors in those locations are using the most up-to-date protocols for care.

Here are the reasons for my recommendation -
Doctors from any of the places you listed will be able to give you excellent care.
Resources are scarce, and by making appointments at many places and repeating many tests (yes many places will insist) you are limiting care for others.
Time, energy and expense - at some point your insurance company or Medicare will tell you enough too. Possibly after you have incurred the costs of care and travel.
Then there is the issue of doctors who see you jumping from place to place - they too are stretched thin, and will wonder why you are seeing so many different people, which may cause them to be impatient with you or believe you do not trust their expertise.

Maybe instead, spend your time getting up-to-speed on airway clearance. If you believe your MAC is severe enough that antibiotic therapy will be ordered, schedule baseline hearing (with an audiologist) and vision (with an ophthalmologist) tests.
Sue

Thank you Sue! I agree with most of all you said and I listen and watch airway clearance you tubes etc!! Agree on the importance of that!

I am not planning to go “all in” with any Dr until I choose my “lead Dr” which I will base on the consults. These are consults as far as I’m concerned until I choose one outside of going to NJH next year.

Had I gotten into them this year I’d have gone all in with them for sure!

So I don’t see it as taking anything away from anyone. I’m seeking the best dr and care for myself and I believe everyone should do what they’re capable of doing for themselves. The most important thing is feeling confident in your choice so I’m giving myself that; especially within such a serious situation.

Actually, Jacksonville. My son moved to Gulf Shores a few years ago and other family have moved to Florida and we visit often. My Spo2 goes from 90% here in Colorado and then 98% in Floribama. We are considering anything from Panama City Beach to Dauphin Island but we really like Fort Morgan. The lack of NTM care there is a bit of a hindrance in our search. I hoping the Mayo will be of help. Just last week, one of my NJH Doctors sent me a letter and she herself is moving to UF in Gainsville.

I really liked Dr Johnson in our tele visit. The buck may stop with her for me with our November meeting in person outside of going to NJH next year.

I think you may be doing the right thing for yourself moving to a better area for your lungs! I would definitely figure out a way to do that for myself if I were you!

Let me know how it goes with Mayo!

Brother in law lives in Panama City Beach many years and loves it there btw! I’ve never been. I’m in South Florida; Palm Beach county and the Keys part time.

I agree with Sue. I have seen an immunologist in the past for another condition that’s in spontaneous remission, but I don’t see a reason to consult one now unless you’re having allergy symptoms.
I also agree about the number of docs. These specialists are a very limited resource we need to share. My first had an emergency leave and it was very difficult to get another when I was due for follow up testing to get a diagnosis. At that point, I just had abnormal CT’s suggestive of MAC. I lucked out when Mayo had a cancellation. Once they diagnosed me with bronchiectasis, I was able to get into Penn’s clinic after 6 months. They’ll be my local provider.
I’d suggest one as near you as possible who’s up to date and one for a consult/guidelines from a big center. Just a thought . I do understand your hope to have choices.