Diagnosed with MAC but not being treated

Posted by deborahwolf @deborahwolf, Feb 15, 2019

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.

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

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@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.

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@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!

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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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@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.

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@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!

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@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.

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@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.

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@suzyqueue, @windwalker Suzy, I love your determination! We can do this!

Easy for me to say, I’m not on the Big 3 or Amikacin yet – I have colonized MAC in my lungs and abscessus in my sinuses…if I get 1 more sputum sample back positive for abscessus in my lungs & am symptomatic, then I’ll probably have to start the “Big” treatment. 🙏

I see advertisements for the “So Clean” CPAP Sterilizing device, and I’m curious if we could throw our nebulizer equipment & sinus cleaning equipment in something like that to save some time as well as get a better level of sterilization?

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@brigby

@suzyqueue, @windwalker Suzy, I love your determination! We can do this!

Easy for me to say, I’m not on the Big 3 or Amikacin yet – I have colonized MAC in my lungs and abscessus in my sinuses…if I get 1 more sputum sample back positive for abscessus in my lungs & am symptomatic, then I’ll probably have to start the “Big” treatment. 🙏

I see advertisements for the “So Clean” CPAP Sterilizing device, and I’m curious if we could throw our nebulizer equipment & sinus cleaning equipment in something like that to save some time as well as get a better level of sterilization?

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@brigby
@suzyqueue
I got the idea from someone on this forum that I have been using to sterilize my nebulizers its a baby bottle sterilizer. I purchased mine off Amazon It was pretty cheap under 50.00. It works well and quick 15 minutes and I know that the equipment is sterile.
I have about 6 nebulizer and at store them in soapy water until the end of the week then rinse and throw in the sterilizer.

Shari

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@pfists

@brigby
@suzyqueue
I got the idea from someone on this forum that I have been using to sterilize my nebulizers its a baby bottle sterilizer. I purchased mine off Amazon It was pretty cheap under 50.00. It works well and quick 15 minutes and I know that the equipment is sterile.
I have about 6 nebulizer and at store them in soapy water until the end of the week then rinse and throw in the sterilizer.

Shari

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@pfists thank you

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@brigby

@suzyqueue, @windwalker Suzy, I love your determination! We can do this!

Easy for me to say, I’m not on the Big 3 or Amikacin yet – I have colonized MAC in my lungs and abscessus in my sinuses…if I get 1 more sputum sample back positive for abscessus in my lungs & am symptomatic, then I’ll probably have to start the “Big” treatment. 🙏

I see advertisements for the “So Clean” CPAP Sterilizing device, and I’m curious if we could throw our nebulizer equipment & sinus cleaning equipment in something like that to save some time as well as get a better level of sterilization?

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I was wondering the same thing.

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@pfists

@brigby
@suzyqueue
I got the idea from someone on this forum that I have been using to sterilize my nebulizers its a baby bottle sterilizer. I purchased mine off Amazon It was pretty cheap under 50.00. It works well and quick 15 minutes and I know that the equipment is sterile.
I have about 6 nebulizer and at store them in soapy water until the end of the week then rinse and throw in the sterilizer.

Shari

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Do you use the sterilizer that goes in the microwave?

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