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MAC & Bronchiectasis | Last Active: 39 minutes ago | Replies (15)Comment receiving replies
Replies to "Who are you seeing in Scottsdale? I have NTM Abscessus and am seeing Dr. Stephanie Iusum..."
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@djwork1 With MABC diagnosis, I definitely recommend NJH. Thay have, most likely the best NTM lab in the US-not to mention NTM specialists. A good local Dr would encourage you to go. Both my local ID and Pulm. Dr told me that NJH is the best and were very encouraging. Have you started treatment? Are you nebulizing with 7% saline 2/day? Do you know your NTM count? Has your doctor done a thorough Susceptibility test? When I was diagnosed with Abscessus, I was put on antibiotics too soon. Fortunately, I went to NJH just 3 weeks into my anti biotic treatment. The first few days, I was there, my ID doctor cut my Arikayce down from 7 days to 3 days per week. My Linezolid dose was literally cut in half after a series of 3 blood tests showed how the Linezolid was being metabolized. Some have their dose reduced by 2/3rds. I was also on Nuzyra which was being changed due to insurance denial. I was also recommended to switch to inhaled Amakacin. I did not have any tests that required anesthesia like ROZ. Most of my tests were GI related, CT, labs, PFT, asthma tests (HNO and methyl choline challenge) and consults with respiratory therapist, speech therapist, etc. I also met with my Dr the 2nd week (I was there 8week days) to review all my tests. My NTM count was 37 (400 is considered high) and my nodules were getting smaller. I was able to stop all meds and now in "watch and wait" period. I'm now testing negative and think the 7% nebulizing really helped (which my local Pulm had me start immediately after my diagnosis in 11/2024). Though I was an outpatient, I also had a designated hospital room-which was really nice.