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

@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?

@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

Great idea!!!!

@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

@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.

Liked by suzyqueue

@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?

@tinaesims

Do you use the sterilizer that goes in the microwave?

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@tinaesims – I use distilled water and literally boil it for my Amikacin equipment. It's what the nurse and others in the program instruct to do. If on vacation or somewhere inconvenient, I think some use hot plates

@suzyqueue

@tinaesims – I use distilled water and literally boil it for my Amikacin equipment. It's what the nurse and others in the program instruct to do. If on vacation or somewhere inconvenient, I think some use hot plates

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How often do you do it?

@tinaesims

How often do you do it?

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I do the treatment every night and sterilize after every treatment.

@suzyqueue

I do the treatment every night and sterilize after every treatment.

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Do you also use the baby bottle steamer in the microwave once a week?

@windwalker

@deborahwolf, @migizil, I too went to Mayo, and my dr doesn't like automatically putting people on the Big 3 antibiotics when first diagnosed. He said that in many cases, the infection just goes away by itself. I had a dr try to put me on the big 3 back in 2005, I declined for fear of damaging my liver with them. My lung function has steadily declined and more damage has been done over the years since, I cannot say for sure it was mac that did it or not. I do suspect pseudomonas though. I was not under good care for all of those years; & no dr ever did a sputem test since 2005. I also have COPD, and mild pulmonary hypertension, so that may be why my lungs deteriorated over the years. Deep down though, I think I have had pseudomonas for years and nobody caught that.

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@windwalker ….Did I just read your post correctly? Dr L says that MAC can just go away by itself?? Is that right???

@alleycatkate

@windwalker ….Did I just read your post correctly? Dr L says that MAC can just go away by itself?? Is that right???

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@alleycatkate Yes mam, that is why our doctor doesn't like to rush into treatment. He said the longer you can go without using the antibiotics, the more you will be able to use them up the road when you truly need them. That way you do not risk becoming resistant to them.

@windwalker …Wow! I had not realized it could go away on its own. That is encouraging!! Thanks!!

@alleycatkate

@windwalker …Wow! I had not realized it could go away on its own. That is encouraging!! Thanks!!

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@alleycatkate The likelihood of it going away on it's own probably depends on the amount of lung damage one has, or what level of bronchiectasis one has. For instance, I am on preventative antibiotics for life because my lungs are in pretty bad shape.

Liked by Jennifer

@windwalker

@alleycatkate The likelihood of it going away on it's own probably depends on the amount of lung damage one has, or what level of bronchiectasis one has. For instance, I am on preventative antibiotics for life because my lungs are in pretty bad shape.

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I had a clear CT scan and chest xray in May. 4 months later I had a cavity/hole the size of 9 cm in my upper left lobe of my lung.
I wouldn't play roulette with this disease for a second.

Liked by heathert, brigby

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