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 Brenda R.

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

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@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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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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@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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Treatment is long term ,1 year plus on Antibiotics which have side effects which can present challenges. I too am going through the same thing. How is your health otherwise, are you at a healthy weight? So much needs to be taken into consideration.

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@deannal

Treatment is long term ,1 year plus on Antibiotics which have side effects which can present challenges. I too am going through the same thing. How is your health otherwise, are you at a healthy weight? So much needs to be taken into consideration.

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My MAC symptoms were 10 x worse than any side effect from treatment.
I was running 104 fevers, unbearable chills, coughing constantly not being able to catch my breath etc.
The side effects from treatment have been manageable…still not pleasant but it is also keeping the 9 cm cavity in my upper lung from growing.

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@auntnanny

wildwalker…… I believe you are on Mayo's program of tobramycin and last week I visited Mayo's in Rochester because they wanted to test me to see I could tolerate it. I did fine with the test and my program is 30 days on (twice daily) and then 30 off. Doctor says if I have flares during the off time he will most likely do two weeks on ///// two off. My sputum testing has been coming back pseudomonas. Also, while there, they did sinus surgery and are hoping they got rid of some of the infection being harbored there. My question is: Do you remember how long it was before you notice good results from toby? I've been on it six days and I don't think the coughing has gotten any better yet. As an added note……. I remember some talking about the expense of this antibiotic and I purchased mine at the Mayo pharmacy and my Medicare paid all of it. Just thought someone might want to know.

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@auntnanny…r u on 300ml of Toby….it took a few weeks when I was on it, to notice improvement

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@suzyqueue

My MAC symptoms were 10 x worse than any side effect from treatment.
I was running 104 fevers, unbearable chills, coughing constantly not being able to catch my breath etc.
The side effects from treatment have been manageable…still not pleasant but it is also keeping the 9 cm cavity in my upper lung from growing.

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@suzyqueue Hi. I am so glad that you made this statement. Doctors do weigh and consider risk versus treatment when deciding how to tackle disease. I am also glad that you pointed out that the active mac symptoms were worse than thw treatment. I wish you continued improvement in your health.

Liked by suzyqueue

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megan123 thank you so very much for your post. Yes, 300 tobramycin. I went through the first 4 weeks and noticed no difference at all. In fact, I kind of felt the coughing and phlegm were worse. It was discouraging. I had trouble after 2-3 weeks with lots of breath shortage. Mayo doctor now has me on two weeks on and then two weeks off. I started the two week session yesterday and I'm hopeful after a period of time with it, the symptoms will lessen considerable (or miraculously just go away???) I'm 78 years and I'm wondering if anyone else on this forum is as old as I? Believe me, I'm trying…… and thanks for your support

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@auntnanny

megan123 thank you so very much for your post. Yes, 300 tobramycin. I went through the first 4 weeks and noticed no difference at all. In fact, I kind of felt the coughing and phlegm were worse. It was discouraging. I had trouble after 2-3 weeks with lots of breath shortage. Mayo doctor now has me on two weeks on and then two weeks off. I started the two week session yesterday and I'm hopeful after a period of time with it, the symptoms will lessen considerable (or miraculously just go away???) I'm 78 years and I'm wondering if anyone else on this forum is as old as I? Believe me, I'm trying…… and thanks for your support

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check with your doctor about starting to nebulize with something like Albuterol and a Saline Solution. It has done wonders for me with helping to keep my lungs cleared out and coughing easier.

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@deborahwolf

@londonritt Thank you for sharing your experience. I feel better knowing others who have been given the same recommendations.

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It helps when others share their experiences!!!!

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@suzyqueue

My MAC symptoms were 10 x worse than any side effect from treatment.
I was running 104 fevers, unbearable chills, coughing constantly not being able to catch my breath etc.
The side effects from treatment have been manageable…still not pleasant but it is also keeping the 9 cm cavity in my upper lung from growing.

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I see a lot of MAC patients, but I don’t hear what is done about abscessus!! I have it. Thanks!!!

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I have both MAC and m. Abscessus. We are waiting and monitoring based on lack of symptoms and CT scans.

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@judyhodgern

I see a lot of MAC patients, but I don’t hear what is done about abscessus!! I have it. Thanks!!!

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@judyhodgern
I tested positive with abcessus for a year but didn't treat it and then my tests started to come back negative for the least couple of years.
Did you have more than one test come back positive?
Do you have symptoms and how is your scans look?
Shari

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