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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deannal | @deannal | Jun 2, 2019

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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1 reply
suzyqueue | @suzyqueue | Jun 3, 2019
In reply to @deannal "Treatment is long term ,1 year plus on Antibiotics which have side effects which can present..." + (show)
@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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2 replies
Jennifer | @megan123 | Jun 4, 2019
In reply to @auntnanny "wildwalker…… I believe you are on Mayo's program of tobramycin and last week I visited Mayo's..." + (show)
@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 2019
In reply to @suzyqueue "My MAC symptoms were 10 x worse than any side effect from treatment. I was running..." + (show)
@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.

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auntnanny | @auntnanny | Jun 4, 2019

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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2 replies
suzyqueue | @suzyqueue | Jun 5, 2019
In reply to @auntnanny "megan123 thank you so very much for your post. Yes, 300 tobramycin. I went through the..." + (show)
@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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judyhodgern | @judyhodgern | Jun 6, 2019
In reply to @deborahwolf "@londonritt Thank you for sharing your experience. I feel better knowing others who have been given..." + (show)
@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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judyhodgern | @judyhodgern | Jun 6, 2019
In reply to @suzyqueue "My MAC symptoms were 10 x worse than any side effect from treatment. I was running..." + (show)
@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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2 replies
Brenda R. | @brigby | Jun 6, 2019

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

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1 reply
pfists | @pfists | Jun 6, 2019
In reply to @judyhodgern "I see a lot of MAC patients, but I don’t hear what is done about abscessus!!..." + (show)
@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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