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DiscussionIs it necessary or helpful to see an immunologist to deal with MAC?
MAC & Bronchiectasis | Last Active: Sep 9, 2023 | Replies (17)Comment receiving replies
Replies to "Thanks Sue! I understand all you said and I do have an appt with an ID..."
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
Not exactly answering your question but it's related. If you have not had your antibodies tested then a pulmonologist, immunologist or PCP can order the simple blood work. An immune deficiency is behind the cause of bronchiectasis in about 10% of people. An immune disorder should be ruled out if you have bronchiectasis.
Caution! My pulmonologist tested mine, and read the results as adequate response to the pneumonia vaccine. My allergist/immunologist had a different interpretation. Although my antibody disorder is mild, and there's really no telling if an immune def. is a cause of the bronchiectasis. I've been on a trial of immunoglobulin replacement, which has cut done on exacerbations, along with months and months long immunotherapy treatment (allergy shots) and twice daily clearance. My habit to clear my lungs as completely as possible, I believe, has been very helpful. It is so not easy!
Lastly, if you're wondering, immunoglobulin replacement does not reduce the risk of contracting NTM/MAC. As long as we have all have bronchiectasis it will be a risk.
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.