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!

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reneemc | @reneemc | Nov 13, 2023
In reply to @lcwilkie "Hi Sue- I tried to join Lung Matters. I was accepted and welcomed. I asked two..." + (show)
@lcwilkie

Hi Sue-
I tried to join Lung Matters. I was accepted and welcomed. I asked two questions. One was, "Has anyone ever heard of omadacycline?" and the other was "What strength saline does everyone use?" They immediately deleted me from the group. I am new to this journey and just trying to figure it all out. It was extremely disconcerting.
I have a Pulm who was ID first and then specialized in PULM. He did a fellowship at NJH. He works directly with NJH physicians.
I am happy to have found this support group at Mayo. Everyone appears to be very supportive and not judgmental.
I, too, was told daily sterilization was not necessary.
Thank you!

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Hello, I’ve been on omadacycline since June and I nebulize3% saline

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1 reply
lcwilkie | @lcwilkie | Nov 13, 2023
In reply to @reneemc "Hello, I’ve been on omadacycline since June and I nebulize3% saline" + (show)
@reneemc

Hello, I’ve been on omadacycline since June and I nebulize3% saline

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I was doing some reading and found that this med was the most recently developed. Is there a reason why they prescribed that to you rather than the Big 3? No need to respond if you don’t want to share.
thank you.

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1 reply
reneemc | @reneemc | Nov 13, 2023
In reply to @lcwilkie "I was doing some reading and found that this med was the most recently developed. Is..." + (show)
@lcwilkie

I was doing some reading and found that this med was the most recently developed. Is there a reason why they prescribed that to you rather than the Big 3? No need to respond if you don’t want to share.
thank you.

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The susceptibility report MICs only showed my mycobacteria abcessus susceptible to imipenem, Amikacin and Linezolid.. after the IVs I started the omadacycline and azithromycin. Even though showed resistance to clarithromycin .

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healthybon | @healthybon | Nov 14, 2023
In reply to @lcwilkie "Hi Sue- I tried to join Lung Matters. I was accepted and welcomed. I asked two..." + (show)
@lcwilkie

Hi Sue-
I tried to join Lung Matters. I was accepted and welcomed. I asked two questions. One was, "Has anyone ever heard of omadacycline?" and the other was "What strength saline does everyone use?" They immediately deleted me from the group. I am new to this journey and just trying to figure it all out. It was extremely disconcerting.
I have a Pulm who was ID first and then specialized in PULM. He did a fellowship at NJH. He works directly with NJH physicians.
I am happy to have found this support group at Mayo. Everyone appears to be very supportive and not judgmental.
I, too, was told daily sterilization was not necessary.
Thank you!

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Sometimes, rules and regulations get out of hand and we have to decide if we want to associate with that type of set up. I like this blog, as there is never judgement or harshness.......We all have enough to carry on our shoulders having lung issues...and a little kindness, understanding and acceptance goes a long, long way. Welcome to the Mayo blog. They have taught me EVERYTHING I know.

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isabellad | @isabellad | Nov 14, 2023
In reply to @melinda561 "Yes I do have a specialist at Mayo whom I’ve been seeing since 2020. Prior I..." + (show)
@melinda561

Yes I do have a specialist at Mayo whom I’ve been seeing since 2020. Prior I had a pulmonologist who treated me for COPD and diagnosed me with bronchiectasis in 2018. He never recommended sputum samples and or treatments. As my lung condition worsened I had an appointment with National Jewish Heath but canceled due to Covid. I then found a specialist at Mayo. I’ve had to learn about my disease and available treatments from different sites. I agree that what is effective for one person may not be for another. I too have had to take steroids on occasion and acknowledge that sometimes they are necessary. The “Lung matters “site that I have been following are evidence based treatment recommendations. For example, use of pall filter for showering, boiling drinking water and boiling reusable equipment after each use for minimum of 10minutes and adding additional minutes for x amount of feet above sea level. They have many other recommendations/guidelines . I do agree that treatment plans should be tailored to individual needs as many of us have additional illnesses that alter our plan of care. I looked at these guidelines as additional safeguards if one chose to use them. From what I’ve read, the guidelines were evidence based outcomes from National Jewish Health, Mayo Cliniic and a few other sites.. I thank you for your experience and views. After rereading my post, I realized “must “ was not appropriate as recommendations or guidelines are individual choices. I thank you for input and objective information.

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Dear Melinda,
I have just been diagnosed with MAC and have been advised by my pulmonologist to start the antibiotic protocol. But neither he or his team mentioned boiling drinking water or using shower filters. How do you navigate that?
I’ve been told that MAC is not infectious but then I read that equipment must be sterilized as to avoid re- exposure to the bacteria; that your toothbrush should not be kept in the same holder as your family’s etc. etc

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1 reply
barbdk | @barbdk | Nov 15, 2023
In reply to @sueinmn "Well, I was absolutely a skeptic about 7% saline at first - it just sounded too..." + (show)
@sueinmn

Well, I was absolutely a skeptic about 7% saline at first - it just sounded too simple. But... I am a fervent convert, and it may just have been the best thing I have done since diagnosis. For the first time in roughly 15 years, I have had upper respiratory infections (3 now) that did not evolve into either bronchitis or pneumonia. I credit the 7% saline keeping my lungs clear of mucus so the germs cannot take up residence. If I were you, I would (seriously) find myself a little battery powered hand held nebulizer and start the 7% saline routine. It takes about 10-15 minutes morning and evening. You can even do it while you watch the news or read email. Don't let all the descriptions of complicated cleaning routines scare you! I soak mine in hot water and a drop of dish soap, rinse & air dry. Once every week or 2, I boil it in a saucepan (most other people here seem to use a microwave sterilizer bag) Either one takes about as long as it takes to load or unload the dishwasher.
Maybe @thumperguy can convince you...
Sue

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I’d be interested to try a hand held nebulizer. I hate to drag the big one around on a trip (and have flat out refused to take it to Europe for 3 weeks!). Do I just google it, or is there a brand name?

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 15, 2023
In reply to @barbdk "I’d be interested to try a hand held nebulizer. I hate to drag the big one..." + (show)
@barbdk

I’d be interested to try a hand held nebulizer. I hate to drag the big one around on a trip (and have flat out refused to take it to Europe for 3 weeks!). Do I just google it, or is there a brand name?

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Unfortunately, Since my Phillips InnospireGo is no longer made, I haven't found a handheld unit that will hold up. Now I travel with my old reliable - a DeVilbiss Traveler - it is compact, has a battery pack that holds a charge for a long time, and is safe to run with an international adapter plug. I just weighed it, and with the attached battery and charger it is 2 pounds. Everything fits in a case about 3" X 5" x 7".
Do you happen to be going to the UK? They have a handheld available that is well-rated - I don't know the logistics of getting it there.
Sue

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1 reply
liangni1 | @liangni1 | Nov 15, 2023
In reply to @barbdk "I’d be interested to try a hand held nebulizer. I hate to drag the big one..." + (show)
@barbdk

I’d be interested to try a hand held nebulizer. I hate to drag the big one around on a trip (and have flat out refused to take it to Europe for 3 weeks!). Do I just google it, or is there a brand name?

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I found the portable rechargeable nebulizer on Amazon ：Naweti
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3 replies
lcwilkie | @lcwilkie | Nov 16, 2023
In reply to @liangni1 "I found the portable rechargeable nebulizer on Amazon ：Naweti" + (show)
@liangni1

I found the portable rechargeable nebulizer on Amazon ：Naweti

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I use this one. It’s fast, quiet, easy to clean, and not cumbersome. I have a larger one…no way.

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