Diagnosed with MAC but not being treated

Posted by deborahwolf @deborahwolf, Fri, Feb 15 7:23pm

I was diagnosed with MAC in October 2018. My pulmonologist discussed treatment but wanted to conduct a sputum induction procedure to determine bacterial load. The load was low enough that he felt we could wait on treatment. I saw him for a follow up this week and he did not recommend treatment because my symptoms are minor (shortness of breath and occasional fatigue) and are not progressing. He indicated treatment is symptom driven and he doesn’t recommend starting treatment unless the symptoms become debilitating. He wants to see me again in 6 months.
Has anyone else had this type of recommendation? Although I am very happy not taking the medications I don’t want to let the infection to progress to a dangerous level and regret not being treated sooner.

Liked by brigby

@auntnanny

windwalker Yes, I will and thank you for your info. I've taken it a week today but am not feeling the cough is any better so I'm encouraged by your words

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windwalker — I have another question. Mayo's said I needed a different tubing/nebulizer part for the toby and they gave me one. However, it certainly is slower delivering the product that the one I use for albuterol and saline. Do you have a different type mouthpiece from the one you have used for albuterol? I fail to see why this is any better but certainly I'm not going to question what they say. Would surely like to cut down that delivery time. I'm a full hour or a little more with albuterol, saline, and then toby. Is this your experience?

@ginak

@heathert Mine come and go also, since my first CT scan in 2013 before I had been diagnosed with MAC and bronchiectasis. The term they’ve used is waxing and waning. (Lol, like the moon)

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@ginak I was diagnosed in 2014, close to you. Does your dr say if it is the MAC MAI that causes them the nodules that come and go

Liked by ginak

@heathert My first pulmonologist never gave any reason for it when I asked. I guess she didn’t really know. Before I was diagnosed in 2016, (after the lung surgery to biopsy a large nodule), that specialist said nodules are caused by aspiration from acid reflux. Due to the inflammation acid reflux causes. The pulmonary Dr I have now said the nodules MAY be caused by the MAC MAI. I really believe none of them know exactly, or maybe it’s all of the above. I have a friend who said they saw nodules in her lungs on CT scan but she was never diagnosed with any NTM, although she does have acid reflux also. I guess the NTMs are because of the bronchiectasis, which she doesn’t have. I hope someday they figure it all out so we can know exactly how we should be treated.

@ginak

@heathert My first pulmonologist never gave any reason for it when I asked. I guess she didn’t really know. Before I was diagnosed in 2016, (after the lung surgery to biopsy a large nodule), that specialist said nodules are caused by aspiration from acid reflux. Due to the inflammation acid reflux causes. The pulmonary Dr I have now said the nodules MAY be caused by the MAC MAI. I really believe none of them know exactly, or maybe it’s all of the above. I have a friend who said they saw nodules in her lungs on CT scan but she was never diagnosed with any NTM, although she does have acid reflux also. I guess the NTMs are because of the bronchiectasis, which she doesn’t have. I hope someday they figure it all out so we can know exactly how we should be treated.

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@ginak My dr says the same thing, doesnt really know but could be MAC MAI.My next scan is in a few weeks, will they have gone, who knows.

@heathert

@ginak My dr says the same thing, doesnt really know but could be MAC MAI.My next scan is in a few weeks, will they have gone, who knows.

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Fingers crossed for you.

Liked by heathert

@auntnanny

windwalker — I have another question. Mayo's said I needed a different tubing/nebulizer part for the toby and they gave me one. However, it certainly is slower delivering the product that the one I use for albuterol and saline. Do you have a different type mouthpiece from the one you have used for albuterol? I fail to see why this is any better but certainly I'm not going to question what they say. Would surely like to cut down that delivery time. I'm a full hour or a little more with albuterol, saline, and then toby. Is this your experience?

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@auntnanny I was told to use the same cup as I use for the saline and albuterol. It does take a long time to get through all three treatments. Mine take a bit longer than an hour. Sometimes I cheat and skip the saline. (Only because I am not as ill any longer) Pine pollen has hit the south already, so I am being more vigilant lately with the saline. These treatments are time consuming, but worth it. I use the time to read through the posts on our Connect site while I do it.

Have you had a CT scan and/or chest Xray done? Those will show any damage the mac has already done.
I was feeling good even with a 8.5 cm cavity in my lung that if I wouldn't have started treatment, would've devoured me.

@windwalker

@auntnanny I was told to use the same cup as I use for the saline and albuterol. It does take a long time to get through all three treatments. Mine take a bit longer than an hour. Sometimes I cheat and skip the saline. (Only because I am not as ill any longer) Pine pollen has hit the south already, so I am being more vigilant lately with the saline. These treatments are time consuming, but worth it. I use the time to read through the posts on our Connect site while I do it.

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@migizii I find the treatments very time consuming too, especially with working full time. My employer let’s me come to work an hour later which is very gracious, but it still makes for long days…….but hopefully it will keep illness at bay!

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@migizii

@migizii I find the treatments very time consuming too, especially with working full time. My employer let’s me come to work an hour later which is very gracious, but it still makes for long days…….but hopefully it will keep illness at bay!

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I nebulize the albuterol and saline twice a day and do the Amikacin inhalation treatment once a day. I do the albuterol and saline at 4:00 a.m. then go back to sleep until 6 LOL! I take the nebulizer to work and do the next one around 4 in the afternoon. I just wash the pieces in hot soapy water. Then before bed I do the Amikacin treatment which is 10 x more time consuming with how you have to wash and sterilize each time. But it works and the more you do it; the quicker it goes. Totally worth it.

Just curious why you get up at 4 to do your treatment?

@tinaesims

Just curious why you get up at 4 to do your treatment?

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Sometimes the Albuterol makes me shaky so I'll take a low dose of Xanax to keep me calm. But then I'm pretty relaxed, still groggy from nights sleep and can take an hour or so nap before I have to get up. LOL! Also, I have to do these every 12 hours so if I do my next one at 4:00 in the afternoon, I can do my Amikacin treatment a few hours later at a convenient time before bed. Doing the Albuterol and Saline solution a couple/few hours before Amikacin allows everything to be cleared out of my lungs and opened up to make it easier for the Amikacin to get in there deeper.

@suzyqueue

Sometimes the Albuterol makes me shaky so I'll take a low dose of Xanax to keep me calm. But then I'm pretty relaxed, still groggy from nights sleep and can take an hour or so nap before I have to get up. LOL! Also, I have to do these every 12 hours so if I do my next one at 4:00 in the afternoon, I can do my Amikacin treatment a few hours later at a convenient time before bed. Doing the Albuterol and Saline solution a couple/few hours before Amikacin allows everything to be cleared out of my lungs and opened up to make it easier for the Amikacin to get in there deeper.

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@suzyqueue Hi Suzi. Albuterol did the same thing to me, plus, would cause heart palpitations and bring on superventricular tachycardia
(SVT) racing heartbeat. So, my dr switched me over to 'Levalbuterol'. That is albuterol with the shaky stuff removed. Sadly, my insurance this yr doesn't cover it. I forgot that and filled the script, then got a bill for $2,400.00! Yikes!

@migizii

@migizii I find the treatments very time consuming too, especially with working full time. My employer let’s me come to work an hour later which is very gracious, but it still makes for long days…….but hopefully it will keep illness at bay!

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@migizii, There are better nebulizers that go quicker. I am looking into whether that is ok. For all I know, slower may be better to really saturate your lungs with the meds.

@suzyqueue

I nebulize the albuterol and saline twice a day and do the Amikacin inhalation treatment once a day. I do the albuterol and saline at 4:00 a.m. then go back to sleep until 6 LOL! I take the nebulizer to work and do the next one around 4 in the afternoon. I just wash the pieces in hot soapy water. Then before bed I do the Amikacin treatment which is 10 x more time consuming with how you have to wash and sterilize each time. But it works and the more you do it; the quicker it goes. Totally worth it.

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@suzyqueue I am so impressed with your 4am commitment! Good for you. If we go to the gym at 4;45am, and then I do my therapy, I often want to nap before work. I don’t think the doctors -or anyone who doesn’t have lung disease – can fully appreciate how exhausting 40 minutes of: nebulizer/postural drainage/forced coughing can be…this disease requires self discipline, (and for me, God’s help and a sense of humor) to be sure!

Liked by shooei, suzyqueue

@brigby – Only if I could fit in gym time in the morning….oh and the energy LOL! I usually go to the gym after work around 5:30 or 6:00 and weekend afternoons. This really does require everything you said. I remember my doctor saying that the nebulizing is just "a pain in the butt" and I thought "how big of a deal can it be"? LOL! One I got into routine it wasn't so bad. Adding the Amikacin treatments to my day and all that has to be done with sterilization etc with it is another story….again – once in routine not so bad.

Liked by migizii

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