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.

nana43 | @nana43 | Aug 13, 2022
In reply to @med08 "I am in the same boat as you. I had repeated Ct chest for last year..." + (show)
@med08

I am in the same boat as you. I had repeated Ct chest for last year and a half and ea. time Mac has gotten worse. I too am not sick enough for Antibiotics at this point. They told me treatment is worse than disease. I just started with infectious disease and she immediately did blood work for underlying disease and sent my bronchoscopy specimen for sensitivity testing. This will let them know what antibiotics to use when and if we decide to start treatment. I tried 3 % then 7% saline in nebulizer both makes my throat so sore I can’t do it. It really dries me out. I’m going to talk to my doctor next month about it. It seems to work for most everyone. I wish you all the best of luck. I’m at my wits end on what to do as well.

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Hi! I was recent diagnosed in April with MAC after living with mild Bronchiectasis since 2018.
I started treatment with the Big 3 in June. However, treatment isn’t necessarily as bad as symptoms even though I read the same things. After 2 months, I feel 50% better than I did before. Mind you, the side effects produce some of the same symptoms as the disease -but for me, on a smaller scale and more tolerable. You should definitely sign up for the virtual seminar sent by men 08. You can sign up by listing yourself under education speciality. This worked for me and someone emailed me directly concerning attendance. My best piece of advice// Get educated on your disease!! The medical community is just not well versed in this and you have to be your own health advocate. Really hope this helps!

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2 replies
med08 | @med08 | Aug 13, 2022
In reply to @nana43 "Hi! I was recent diagnosed in April with MAC after living with mild Bronchiectasis since 2018...." + (show)
@nana43

Hi! I was recent diagnosed in April with MAC after living with mild Bronchiectasis since 2018.
I started treatment with the Big 3 in June. However, treatment isn’t necessarily as bad as symptoms even though I read the same things. After 2 months, I feel 50% better than I did before. Mind you, the side effects produce some of the same symptoms as the disease -but for me, on a smaller scale and more tolerable. You should definitely sign up for the virtual seminar sent by men 08. You can sign up by listing yourself under education speciality. This worked for me and someone emailed me directly concerning attendance. My best piece of advice// Get educated on your disease!! The medical community is just not well versed in this and you have to be your own health advocate. Really hope this helps!

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What are the big 3 specifically?

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1 reply
nana43 | @nana43 | Aug 13, 2022
In reply to @med08 "What are the big 3 specifically?" + (show)
@med08

What are the big 3 specifically?

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Either azithromycin (Zithromax) OR clarithromycin (Biaxin),
Ethambutol (Myambutol), &
Rifampin (Rifadin, Rimactane)

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med08 | @med08 | Aug 13, 2022
In reply to @ajwelsh "Wow thank you all! I am definitely going to ask and look for another pulmonologist now...." + (show)
@ajwelsh

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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They thought my MAC was from silent aspiration. Coincidentally, I too have choking episodes, even on my own spit. I was referred to GI dr. They did 24 hr monitoring with impedance, Manometry and EGD. Results were good, except I have Ineffective esophageal motility. My sister, mother, cousin, etc have. I just make sure I chew food very well and always have water when eating.

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med08 | @med08 | Aug 13, 2022
In reply to @extracare808 "Unfortunately, most community ID and pulmonologists know very little about MAC. I went to multiple doctors..." + (show)
@extracare808

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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Can you list the specific meds. Thank you.

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1 reply
med08 | @med08 | Aug 13, 2022

Someone recently posted a tincture they use that helps with symptoms. I can’t find post. I think it was maybe echinacea and something. Anyone remember?

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2 replies
med08 | @med08 | 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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Thank you

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med08 | @med08 | 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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Are all protocols different. Do you take iv antibiotics or orally. Are they taken all at once or alternate?

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1 reply
extracare808 | @extracare808 | Aug 13, 2022
In reply to @med08 "Can you list the specific meds. Thank you." + (show)
@med08

Can you list the specific meds. Thank you.

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I was on Azithromycin, Ethambutol, Rifampin - Mon/Wed/Fri. This regimen didn't result in sputum conversion (except for one month), so I am now on them daily and also just started Arikayce. So far, Arikayce has resulted in hoarse voice, no other side effects to report.

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1 reply
med08 | @med08 | Aug 13, 2022
In reply to @extracare808 "I was on Azithromycin, Ethambutol, Rifampin - Mon/Wed/Fri. This regimen didn't result in sputum conversion (except..." + (show)
@extracare808

I was on Azithromycin, Ethambutol, Rifampin - Mon/Wed/Fri. This regimen didn't result in sputum conversion (except for one month), so I am now on them daily and also just started Arikayce. So far, Arikayce has resulted in hoarse voice, no other side effects to report.

Jump to this post

Thank you!

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