1. < MAC & Bronchiectasis

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.

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alleycatkate | @alleycatkate | Feb 20, 2019
In reply to @windwalker "@deborahwolf, @migizil, I too went to Mayo, and my dr doesn't like automatically putting people on..." + (show)
@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???

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Terri Martin, Volunteer Mentor | @windwalker | Feb 21, 2019
In reply to @alleycatkate "@windwalker ....Did I just read your post correctly? Dr L says that MAC can just go..." + (show)
@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.

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alleycatkate | @alleycatkate | Feb 21, 2019

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

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Terri Martin, Volunteer Mentor | @windwalker | Feb 21, 2019
In reply to @alleycatkate "@windwalker ...Wow! I had not realized it could go away on its own. That is encouraging!!..." + (show)
@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.

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suzyqueue | @suzyqueue | Feb 21, 2019
In reply to @windwalker "@alleycatkate The likelihood of it going away on it's own probably depends on the amount of..." + (show)
@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.

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ling123 | @ling123 | Feb 21, 2019
In reply to @windwalker "@alleycatkate Yes mam, that is why our doctor doesn't like to rush into treatment. He said..." + (show)
@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.

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@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.

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alleycatkate | @alleycatkate | Feb 21, 2019

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

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ling123 | @ling123 | Feb 21, 2019

@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.

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deannal | @deannal | Mar 16, 2019

I too have MAC and it is not being treated. My physician and I discussed this at length numerous times and mutually agreed this was the appropriate decision for me.
How is your overall health? The treatment is aggressive and long term, possibly if you are not a good candidate for treatment your physician made the current decision. MAC is progressive and to my understanding is over time.
If it becomes no choice then treatment will start. The symptoms you mentioned are my challenges as well. For me I go day by day.
My quality of life would be comromised and for me not better, but worse with treatment. Once again your current health is a consideration as to whether or not you would be able to tolerate treatment. I wish you the best .

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papillion | @papillion | Mar 24, 2019
In reply to @londonritt "@deborahwolf I have the same experience as you. I went to Mayo Clinic, Jacksonville, FL for..." + (show)
@londonritt

@deborahwolf I have the same experience as you. I went to Mayo Clinic, Jacksonville, FL for second opinion. Was told not to take medicine....I would be much sicker from them. He said I had a good pulmonary doctor since he did not want me to take the medications. I hope this helps. You can always get a second opinion. Good Wishes

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Hi. I’m not taking any meds also. Tryed them twice. Side effects were terrible. So far I’m ok. My doctor said I may need them someday. Hope we all remain healthy

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