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!
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.
I don't have MAC (knock on wood) but do have bronchiectasis and pseudomonas. I did not have pseudomonas at the time I saw an allergist for bad allergies but he automatically tested those IGA IGE IGM etc. tests. Later I saw an ID dr for the pseudomonas and she automatically ran those same tests so in some cases immunoglobulins will be checked by either an allergist or the ID dr and so there wouldn't be a real need for a separate immunologist unless maybe there was something really wrong in the tests. Just an observation.
I don't have MAC (knock on wood) but do have bronchiectasis and pseudomonas. I did not have pseudomonas at the time I saw an allergist for bad allergies but he automatically tested those IGA IGE IGM etc. tests. Later I saw an ID dr for the pseudomonas and she automatically ran those same tests so in some cases immunoglobulins will be checked by either an allergist or the ID dr and so there wouldn't be a real need for a separate immunologist unless maybe there was something really wrong in the tests. Just an observation.
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.
Thank you! I have decided to stick with Mayo because I really like Dr Johnson. I plan to consult with Dr Swenson to hear his thoughts and go to NJH Summer of 2024 in case they can offer insights or help. That’s my plan.
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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.
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1 ReactionThanks so much that was very helpful!
What does immunoglobulin replacement do to help? Are there side effects?
This is a good site to read about it
https://www.aaaai.org/Tools-for-the-Public/Allergy,-Asthma-Immunology-Glossary/Immunoglobulin-(IgG)-Replacement-Therapy-Defined
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1 ReactionThank you!!
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1 ReactionI don't have MAC (knock on wood) but do have bronchiectasis and pseudomonas. I did not have pseudomonas at the time I saw an allergist for bad allergies but he automatically tested those IGA IGE IGM etc. tests. Later I saw an ID dr for the pseudomonas and she automatically ran those same tests so in some cases immunoglobulins will be checked by either an allergist or the ID dr and so there wouldn't be a real need for a separate immunologist unless maybe there was something really wrong in the tests. Just an observation.
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1 ReactionThank you!
Thank you! I have decided to stick with Mayo because I really like Dr Johnson. I plan to consult with Dr Swenson to hear his thoughts and go to NJH Summer of 2024 in case they can offer insights or help. That’s my plan.
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Helpful -
Hug
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