1. < MAC & Bronchiectasis

New to MAC and considering treatments options: What did you do?

Posted by ajwelsh @ajwelsh, Aug 11, 2022

Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!

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

med08 | @med08 | Aug 12, 2022
In reply to @helenrivera "Hello, can anybody join this virtual conference. I ask as I tried to register and cannot..." + (show)
@helenrivera

Hello, can anybody join this virtual conference. I ask as I tried to register and cannot as I need to fill in the required fields. Please tell me how to bypass? Thank you

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Yes anyone can join.
You can call this number
843-876-1925 Or email russellf@musc.edu

REPLY
ajwelsh | @ajwelsh | Aug 12, 2022

Wow thank you all! I am definitely going to ask and look for another pulmonologist now. I just wasn't sure if my anxiety was making me feel like I should be doing more. I do have asthma (I was told I "grew out of it" so it was untreated most of my life but I did notice an uptick in breathing especially with wearing a mask in all of the time because of COVID so I have been using Albuterol as needed. I wondered if I have something else because I do choke frequently on water or food, but I have no diagnosis.

Thanks particularly to @sueinmn @med08 @nana43 and @gej53 for thoughts and resources!

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1 reply
med08 | @med08 | Aug 12, 2022
In reply to @helenrivera "Hello, can anybody join this virtual conference. I ask as I tried to register and cannot..." + (show)
@helenrivera

Hello, can anybody join this virtual conference. I ask as I tried to register and cannot as I need to fill in the required fields. Please tell me how to bypass? Thank you

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This is a great website to join. It is where I got the info on conference
https://www.copdfoundation.org/About-Us/Who-We-Are/Bronchiectasis-and-NTM-360.aspx

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1 reply
med08 | @med08 | Aug 12, 2022

I haven’t started any form of treatment yet. I was wondering if everyone would be willing to share the specific meds they have been put on and if it worked or if they had to stop using. Maybe there is a common med that doesn’t work or one that does work. I’m so nervous to begin this treatment if and when I have to.

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1 reply
extracare808 | @extracare808 | Aug 13, 2022

Unfortunately, most community ID and pulmonologists know very little about MAC. I went to multiple doctors (including at Mayo) who gave me the same line about 'the treatment is worse than the disease'. This is pure garbage. I have been on the meds for almost one year and have had zero side effects.

Secondly, the BEST thing you can do is get to a Center of Excellence like National Jewish Health or UT Tyler. MAC/NTM is their bread and butter. They have the top experts in the field. Your current pulmo sounds both arrogant and ignorant. I would fire him, STAT. Furthermore, you can't monitor this condition via a simple x-ray, they don't have high enough resolution. You need to get CTs. Also, the newest guidelines were published in 2020, and they do not recommend waiting until you 'get sick'. I started on the meds despite having no symptoms. FYI, only 13% of physicians are actually following treatment guidelines. Pretty appalling.

Until you get to NJH/Tyler, you can check out the NJH youtube channel as well as the NTMir channel. Lot of good info there.

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1 reply
extracare808 | @extracare808 | Aug 13, 2022
In reply to @med08 "I haven’t started any form of treatment yet. I was wondering if everyone would be willing..." + (show)
@med08

I haven’t started any form of treatment yet. I was wondering if everyone would be willing to share the specific meds they have been put on and if it worked or if they had to stop using. Maybe there is a common med that doesn’t work or one that does work. I’m so nervous to begin this treatment if and when I have to.

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The 'Big 3' are the standard treatment (azithromycin, ethambutol, rifampin). However, your treatment should be a function of susceptibility tests done on the bacteria. If the bacteria aren't susceptible, they will have to look for other options.

Don't be overly anxious, I and others I know from message boards have been on the meds with little to no side effects.

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3 replies
spider109 | @spider109 | Aug 13, 2022
In reply to @extracare808 "The 'Big 3' are the standard treatment (azithromycin, ethambutol, rifampin). However, your treatment should be a..." + (show)
@extracare808

The 'Big 3' are the standard treatment (azithromycin, ethambutol, rifampin). However, your treatment should be a function of susceptibility tests done on the bacteria. If the bacteria aren't susceptible, they will have to look for other options.

Don't be overly anxious, I and others I know from message boards have been on the meds with little to no side effects.

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Is that treatment for bronchiostasis? If it is I hope it breaks up or helps break up mucus.

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