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Had to stop Big 3, ototoxicity and switching pulmonologists

Posted by njlynn @njlynn, Aug 20, 2025

Hi, I was new here in Spring 2025 when I was starting treatment for MAC, and really appreciated the great information and support I got here. A note that I had to stop the Big 3 in July because of problems with vertigo, tinnitus and hearing, with a hearing test confirming a sharp drop in my hearing compared to the pre-Big 3 baseline. It's been hard: I don't want to let the MAC go unchecked but can't ignore the ear issues.
But I want to share something that may help others: I did another hearing test after one month and my hearing recovered.
An observation: my ENT doc popped into the room when the hearing test showing loss was done and told me "That's never coming back, that loss is permanent" - very daunting.
Much reputable info on the web says sometimes hearing may recover when antibiotic is stopped, which seems to have happened in my case.
My observation is : was that "OK" that the ENT doc said that? I feel a bit stressed and angry that I need to doublecheck my doctors. I just got a consult with Dr. Adrizzo-Harris who thinks I will need lung surgery -- something the pulmonologist I currently see at U of Penn has NEVER mentioned. This is upsetting. She sees worrisome progression in my images; he has all the images as well and always says everything looks stable.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 25, 2025
In reply to @linda1334 "Hi Sue, I'm in OC, CA. There are a lot of pulmonologists here but I have..." + (show)
Profile picture for linda1334 @linda1334

Hi Sue, I'm in OC, CA. There are a lot of pulmonologists here but I have to stick with those that would be covered by my insurance. So that limits choices to a certain degree. I do have some others on my insurance that I can consult but it's just hard to know if they specialize in MAC treatment as it doesn't generally say on their profiles when looking them up. To be fair, my pulmonologist suggested contacting NJH a couple of weeks ago after I told him that my new ID suggested watch and wait. He said they might prescribe another drug therapy that I could tolerate, but I'm not sure about that knowing all the typical drugs used to treat this disease as I'm already dealing with ototoxicity and neuropathy. I called NJH and I would need a referral approved by my insurance or I would have to pay $10s of thousands out of pocket according to their representative.

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If I were in your position, I WOULD ask the doc to write a referral, citing the complexity of your case, the expertise of NJH, and the fact that after referral, he (or another local pulmo) would oversee your care with their assistance. It is absolutely worth a try!

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Sue, Volunteer Mentor | @sueinmn | Aug 25, 2025
In reply to @nitasgirl "Gosh, this is such a safe, blessed place. @Linda1334, I pray you get the help and..." + (show)
Profile picture for nitasgirl @nitasgirl

Gosh, this is such a safe, blessed place. @linda1334, I pray you get the help and answers you need. And @sueinmn, thank you for being! We are in Baton Rouge Louisiana and need recommendations from the group for pulmonologists, and rheumatologists (specifically autoimmune specialty) Many thanks in advance.

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Here is the place to look first:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers
Perhaps LSU Health in New Orleans might be accessible to you? Also, LSU has an affiliate Pulmonology Clinic in Baton Rouge:
https://www.lsuhn.com/locations/

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linda1334 | @linda1334 | Aug 25, 2025
In reply to @sueinmn "If I were in your position, I WOULD ask the doc to write a referral, citing..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

If I were in your position, I WOULD ask the doc to write a referral, citing the complexity of your case, the expertise of NJH, and the fact that after referral, he (or another local pulmo) would oversee your care with their assistance. It is absolutely worth a try!

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Thanks, Sue. Yes, he will write a referral if I ask and then it's up to the insurance to approve it. I am waiting at the moment for a CT later this week to see status. Depending on that, I will decide how to proceed. Always appreciate your and everyone else's comments and advice here.

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bayarea58 | @bayarea58 | Aug 26, 2025
In reply to @linda1334 "Hi Sue, I'm in OC, CA. There are a lot of pulmonologists here but I have..." + (show)
Profile picture for linda1334 @linda1334

Hi Sue, I'm in OC, CA. There are a lot of pulmonologists here but I have to stick with those that would be covered by my insurance. So that limits choices to a certain degree. I do have some others on my insurance that I can consult but it's just hard to know if they specialize in MAC treatment as it doesn't generally say on their profiles when looking them up. To be fair, my pulmonologist suggested contacting NJH a couple of weeks ago after I told him that my new ID suggested watch and wait. He said they might prescribe another drug therapy that I could tolerate, but I'm not sure about that knowing all the typical drugs used to treat this disease as I'm already dealing with ototoxicity and neuropathy. I called NJH and I would need a referral approved by my insurance or I would have to pay $10s of thousands out of pocket according to their representative.

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@linda1334 I went to NJH self pay and while it wasn’t cheap, it did not cost $10s of thousands of dollars. Feel free to DM me if you would like to learn more about my experience as a self-pay patient at NJH.

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rozie83 | @rozie83 | Aug 26, 2025
In reply to @bayarea58 "@linda1334 I went to NJH self pay and while it wasn’t cheap, it did not cost..." + (show)
Profile picture for bayarea58 @bayarea58

@linda1334 I went to NJH self pay and while it wasn’t cheap, it did not cost $10s of thousands of dollars. Feel free to DM me if you would like to learn more about my experience as a self-pay patient at NJH.

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I am going to NJH in October. I'd be interested in your experience and any suggestions. Thank you. Roz

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