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.

@heathert

@ginak That is interesting, I have had nodules that come and go, I have more now I hope they go on next scan.

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@heathert Mine come and go also, since my first CT scan in 2013 before I had been diagnosed with MAC and bronchiectasis. The term they’ve used is waxing and waning. (Lol, like the moon)

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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 Hi Jan! I am so glad that you could tolerate the toby. Any time I go on it, things get worse, then turn around to great by the end of the 28 day run on it. The very first time I went on it I had had a severe cough for years. I was over the cough by the end of my 28 day run; that was in 2016. I have been cough free ever since. My first experience with toby started out with sore throat, raspy voice, increased coughing, wetter lungs. I thought it was making me worse. My dr assured me that it would improve. After two 1/2 weeks, the raspy voice went away as did the sore throat. I still coughed and had increased sputem. But then, by the end of the 28 days, it was like a miracle happened. The persistant cough of years was gone, and my lungs cleared up. I felt better than I had in years. I hope that it works as well for you as it did for me. It may feel rough at first, but hang in there and let it do it's job. On the 'off' month, I take a ten day run of cipro. That is to stave off any other opportunistic bugs and keep me infection free. So far, so good, infection-wise anyway. I still have damaged lungs, COPD, and bad shortness of breath. I just keep rockin & rollin'. Will you please check back with me and let me know how that toby does for you after the 28 day run? Hugs!

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windwalker Yes, I will and thank you for your info. I've taken it a week today but am not feeling the cough is any better so I'm encouraged by your words

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@auntnanny

windwalker Yes, I will and thank you for your info. I've taken it a week today but am not feeling the cough is any better so I'm encouraged by your words

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windwalker — I have another question. Mayo's said I needed a different tubing/nebulizer part for the toby and they gave me one. However, it certainly is slower delivering the product that the one I use for albuterol and saline. Do you have a different type mouthpiece from the one you have used for albuterol? I fail to see why this is any better but certainly I'm not going to question what they say. Would surely like to cut down that delivery time. I'm a full hour or a little more with albuterol, saline, and then toby. Is this your experience?

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@ginak

@heathert Mine come and go also, since my first CT scan in 2013 before I had been diagnosed with MAC and bronchiectasis. The term they’ve used is waxing and waning. (Lol, like the moon)

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@ginak I was diagnosed in 2014, close to you. Does your dr say if it is the MAC MAI that causes them the nodules that come and go

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@heathert My first pulmonologist never gave any reason for it when I asked. I guess she didn’t really know. Before I was diagnosed in 2016, (after the lung surgery to biopsy a large nodule), that specialist said nodules are caused by aspiration from acid reflux. Due to the inflammation acid reflux causes. The pulmonary Dr I have now said the nodules MAY be caused by the MAC MAI. I really believe none of them know exactly, or maybe it’s all of the above. I have a friend who said they saw nodules in her lungs on CT scan but she was never diagnosed with any NTM, although she does have acid reflux also. I guess the NTMs are because of the bronchiectasis, which she doesn’t have. I hope someday they figure it all out so we can know exactly how we should be treated.

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@ginak

@heathert My first pulmonologist never gave any reason for it when I asked. I guess she didn’t really know. Before I was diagnosed in 2016, (after the lung surgery to biopsy a large nodule), that specialist said nodules are caused by aspiration from acid reflux. Due to the inflammation acid reflux causes. The pulmonary Dr I have now said the nodules MAY be caused by the MAC MAI. I really believe none of them know exactly, or maybe it’s all of the above. I have a friend who said they saw nodules in her lungs on CT scan but she was never diagnosed with any NTM, although she does have acid reflux also. I guess the NTMs are because of the bronchiectasis, which she doesn’t have. I hope someday they figure it all out so we can know exactly how we should be treated.

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@ginak My dr says the same thing, doesnt really know but could be MAC MAI.My next scan is in a few weeks, will they have gone, who knows.

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@heathert

@ginak My dr says the same thing, doesnt really know but could be MAC MAI.My next scan is in a few weeks, will they have gone, who knows.

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Fingers crossed for you.

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@auntnanny

windwalker — I have another question. Mayo's said I needed a different tubing/nebulizer part for the toby and they gave me one. However, it certainly is slower delivering the product that the one I use for albuterol and saline. Do you have a different type mouthpiece from the one you have used for albuterol? I fail to see why this is any better but certainly I'm not going to question what they say. Would surely like to cut down that delivery time. I'm a full hour or a little more with albuterol, saline, and then toby. Is this your experience?

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@auntnanny I was told to use the same cup as I use for the saline and albuterol. It does take a long time to get through all three treatments. Mine take a bit longer than an hour. Sometimes I cheat and skip the saline. (Only because I am not as ill any longer) Pine pollen has hit the south already, so I am being more vigilant lately with the saline. These treatments are time consuming, but worth it. I use the time to read through the posts on our Connect site while I do it.

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Have you had a CT scan and/or chest Xray done? Those will show any damage the mac has already done.
I was feeling good even with a 8.5 cm cavity in my lung that if I wouldn't have started treatment, would've devoured me.

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@windwalker

@auntnanny I was told to use the same cup as I use for the saline and albuterol. It does take a long time to get through all three treatments. Mine take a bit longer than an hour. Sometimes I cheat and skip the saline. (Only because I am not as ill any longer) Pine pollen has hit the south already, so I am being more vigilant lately with the saline. These treatments are time consuming, but worth it. I use the time to read through the posts on our Connect site while I do it.

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@migizii I find the treatments very time consuming too, especially with working full time. My employer let’s me come to work an hour later which is very gracious, but it still makes for long days…….but hopefully it will keep illness at bay!

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@migizii

@migizii I find the treatments very time consuming too, especially with working full time. My employer let’s me come to work an hour later which is very gracious, but it still makes for long days…….but hopefully it will keep illness at bay!

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I nebulize the albuterol and saline twice a day and do the Amikacin inhalation treatment once a day. I do the albuterol and saline at 4:00 a.m. then go back to sleep until 6 LOL! I take the nebulizer to work and do the next one around 4 in the afternoon. I just wash the pieces in hot soapy water. Then before bed I do the Amikacin treatment which is 10 x more time consuming with how you have to wash and sterilize each time. But it works and the more you do it; the quicker it goes. Totally worth it.

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