MAC Big 3 treatment and negative sputum conversion

Lavage results per bronchoscopy are usually considered more accurate.
It is standard to give the Big 3 for 12 months after conversion to negative.
Are you seeing a Pulmonologist that specializes in the treatment of MAC and Bronchiectasis?
Also, are you doing airway clearance?

@desperate2 You've come to right place for thoughtful discussion and guidance. First off, @cwal asks pertinent questions, probably the 2 most important are about airway clearance and if your pulmonologist is a NTM specialist.

Here's a link a to information, scientific papers and other up-to-date materials on NTM and bronchiectasis. You might want to spend some time there as general pulmonologists do not have knowledge, training or experience about bronchiectasis let alone NTM disease. As a fellow sufferer it's crucial to be an informed patient.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

@desperate2 There is actually a term for your type of MAC - it is called Refractory, or resistant to treatment. Your CT scan seems to support this conclusion.

Now is the time to find an NTM/MAC specialist - either a Pulmonologist or Infectious Disease doctor. If there is not one where you live, you may need to travel to a specialty center, there are quite a few around the country.

There is a recommended protocol for treating Refractory NTM - you can find it in this video from National Jewish Health at the 24 minute mark:

Are you looking for a specialist?

Hello, you are describing what I was going through for the first 6 months of 2024. Actually from Dec 2023 through june 2024, I was in the process of getting the diagnosis and initially they were just treating the symptoms of recurrent pneumonia with all the symptoms you describe, fatigue, fevers, pains, losing weight etc. I went on 7 day a week treatment. The NTB is very resistant to treatment so it can mutate. But the fact that you have been on every other day for years and still have the MAC, why not try the daily dosing? I am on 1200 mg ethambutol, 300 mg rifampin and I think 250 of the Azythromycin. Also, I was referred to an Inf Disease specialist who was the one who designed my antibiotic cocktail. maybe get a second opinion or an infectious disease consult??? good luck

I am seeing both, pulmonologist and infectious disease specialist. They haven’t treated anyone with MAC before though so they are not sure how to proceed at this point. If the lavage is more accurate, my treatment isn’t working. In that case, I need to decide whether to take big 3 daily or change/add medication. I am getting second opinion but my health insurance won’t pay for anyone outside my network and they don’t have a doctor for MAC. That’s why I am interested in hearing from others that went through this.

Thank you for the links. I am on nebulizing albuterol+7% sodium chloride 2x a day, followed with a percussion vest session. Accapella device wasn’t working for me. I am learning airway clearance techniques as well so yet to see any results. My bronchiectasis is in the lower left lobe and upper right lobe and I am having hard time clearing my lungs.

I am sorry to hear about your situation and appreciate your support. I am seeing pulmonologist and infectious disease doctor. Neither of them have direct MAC experience. I am seeking a second opinion but my insurance won’t let me to see anyone outside of their network (Kaiser) and they don’t have any MAC specialists. I put together a list of specialists but would have to pay out of pocket which I may do anyway. It seems that I may need to switch to daily regimen and/or add ALIS going forward. If my nody can handle that, how do I know the treatment is working given I can’t produce sputum?

I strongly suggest you appeal Kaiser's denial of an outside consultation. First of all, Kaiser is a very large organization, even if they don't have a specialist locally, it is probable that they have one within their reach.

MAC is a rare disease affecting less than .5 million people, and treatment protocols are quite specific, that alone is a reason to allow access to an outside specialist.

Maybe you can include a link to the NJH video in your appeal to show the complexity of this infection?

Have you tried taking long acting 1200 MG Mucinex and/or NAC? Have you tried the Aerobika instead of the acappella?Have you tried the Autogenic Drainage app available on the App Store for free? Do you know about the bronchiectasis toolbox? https://bronchiectasis.com.au/physiotherapy

It’s a lot of experimentation and hard work. Keep at it and hopefully you’ll get some of the gunk out.

I was on the Big 3 (7 days a week) for 13 months and inhaled Amikacin (3 times a week) for 8 months with all Negative sputum samples for MAC and Fungus that entire time. My 6 month CT showed a new cavity and after a Bronchoscopy I had Aspergillus and Abscessus. I was so discouraged but I am now being treated for the Aspergillus only with Voriconazole for 6 months. I finally finish that treatment next month but don't have another CT until May when I go back to NJH. I have never felt sick really except for a little coughing.