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.

Liked by Brenda R.

@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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I had Kansasii and Abscessus back in March, 2005. I had part right lung removed because of cavities that were made from Kansasii. I didn't go on meds until October 2007, becasue my doctors had no idea what to do. This was in a huge teaching hospital too. I went to National Jewish in Denver, they have or did have a Day Program for 2 weeks. I was started on emipenem and amikacin IV, which I learned to do at home. Did IVs for 9 months 3 times week. Also on oral, ethambutol, rafampin, avalox for 18 months. In June 2008 I was cured. In 2014, I was told i had MAC….So tar, I have been ok …fingers crossed!!

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Same for me. I stressed that I would probably not take the big 3. He told me to come back in 6 month. My appointment is in August 2019. I have joined the YMCA and go 3 times a week to the Silver sneakers program (most insurances pay for this,check yours) I am eating better and feeling as good as I usually do. Taking probiotic .drinking Ginger Tea , eating uncured foods and also sour dough bread. I am very active.I do wear a mask while gardening and taking the dogs out if it as a windy day. I am 83 this year. Thank you.

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@poppins

Same for me. I stressed that I would probably not take the big 3. He told me to come back in 6 month. My appointment is in August 2019. I have joined the YMCA and go 3 times a week to the Silver sneakers program (most insurances pay for this,check yours) I am eating better and feeling as good as I usually do. Taking probiotic .drinking Ginger Tea , eating uncured foods and also sour dough bread. I am very active.I do wear a mask while gardening and taking the dogs out if it as a windy day. I am 83 this year. Thank you.

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Well God love you!

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@brigby

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

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To be absent of symptoms is wonderful. I am coughing lots of terrible stuff up and my CT 5 mo ago was awful!!!!

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@poppins

Same for me. I stressed that I would probably not take the big 3. He told me to come back in 6 month. My appointment is in August 2019. I have joined the YMCA and go 3 times a week to the Silver sneakers program (most insurances pay for this,check yours) I am eating better and feeling as good as I usually do. Taking probiotic .drinking Ginger Tea , eating uncured foods and also sour dough bread. I am very active.I do wear a mask while gardening and taking the dogs out if it as a windy day. I am 83 this year. Thank you.

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That is wonderful that you are having quality of life!!

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@Cathln

I had Kansasii and Abscessus back in March, 2005. I had part right lung removed because of cavities that were made from Kansasii. I didn't go on meds until October 2007, becasue my doctors had no idea what to do. This was in a huge teaching hospital too. I went to National Jewish in Denver, they have or did have a Day Program for 2 weeks. I was started on emipenem and amikacin IV, which I learned to do at home. Did IVs for 9 months 3 times week. Also on oral, ethambutol, rafampin, avalox for 18 months. In June 2008 I was cured. In 2014, I was told i had MAC….So tar, I have been ok …fingers crossed!!

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@Cathln Hi there. Just curious, did they specie the mac you got in 2014?

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@judyhodgern

To be absent of symptoms is wonderful. I am coughing lots of terrible stuff up and my CT 5 mo ago was awful!!!!

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@judyhodgern Hello. Are you nebulizing 7% saline by any chance? It will help clear out the gunk in your lungs, and keep mac a minimum.

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@pfists

@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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@pfifsts Hi Shari. Are you now testing negative for everything?

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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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@auntnanny To answer your question, yes, there are people in our group that are in your age group and older. As of today, how are you making out on that toby?

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windwalker…….. I don't feel I'm making any progress. I had breathing issues after three weeks and took a two-week break. Doctor suggested two weeks on and two off. I'm just finishing the first week of on — one more to go and then I'll get two free weeks. But….. so far I've seen no different in cough and it seems to me even greater phlegm production. I wonder if toby is breaking up more or if I just manage to make more each day. I just wrote you another note asking your knowledge/experience with gerd. Thanks for all……

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