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.

@tinaesims

Do you use the sterilizer that goes in the microwave?

Jump to this post

@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

REPLY
@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

Jump to this post

How often do you do it?

REPLY
@tinaesims

How often do you do it?

Jump to this post

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

REPLY
@suzyqueue

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

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
@alleycatkate

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

Jump to this post

@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.

REPLY

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

REPLY
@alleycatkate

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

Jump to this post

@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.

REPLY
@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.

Jump to this post

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.

REPLY
@windwalker

@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.

Jump to this post

@alleycatkate I have also either read or heard that for some MAC can clear without medication (can't remember where and when I saw/heard it). Like @windwalker Terri says, it all depends on individual's physical condition. For those who suffer from other underlying lung illnesses, the likelihood of MAC going away on its own is low. Even for those who are otherwise healthy, bronchiectasis is always going to be the enemy in our battle against MAC infection.

REPLY

@ling123 Thanks for your imput. Always encouraging to know there is an outside chance of a resolution without drugs!!

REPLY

@alleycatkate I agree with you. I have not been on any antibiotics since diagnosis in fall of 2014. I'm doing great and condition of my lungs is not deteriorating based on one CT scan and multiple chest X-rays. Although I have not had another sputum test, I do believe I'm cleared of MAC for now. I'm making every effort to eat healthy and stay active to stake MAC infection out. But with bronchiectasis, you just never know. Got to be vigilant at all times Can't afford to take eyes off for even one day.

REPLY
Please sign in or register to post a reply.