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.

@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

REPLY

@deborahwolf I went to Mayo for a second opinion and got the same response. I think for now we can consider ourselves very fortunate. The first opinion from a local pulmonologist was basically the same but with no information or suggestions for improving my lung condition (nebulizing saline and lung clearance with an acapella device). I think it is always a good idea to get a second opinion, if for just the peace of mind. I was also told to Follow up yearly with an exray and sputum and to keep antibiotics on hand in case of a flare up (but not to use any of the big 3) Best wishes,
Kate

Liked by kristiemlove

REPLY
@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

Jump to this post

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

REPLY
@alleycatkate

@deborahwolf I went to Mayo for a second opinion and got the same response. I think for now we can consider ourselves very fortunate. The first opinion from a local pulmonologist was basically the same but with no information or suggestions for improving my lung condition (nebulizing saline and lung clearance with an acapella device). I think it is always a good idea to get a second opinion, if for just the peace of mind. I was also told to Follow up yearly with an exray and sputum and to keep antibiotics on hand in case of a flare up (but not to use any of the big 3) Best wishes,
Kate

Jump to this post

@alleycatkate I do consider myself fortunate to not be on medication. I did see an infectious disease doctor who recommended treatment but didn’t push when I expressed my concern about the medications and preference to take a watch and wait approach. Hopefully it is the right call.
I did not receive any information or recommendations for lung clearance.

REPLY
@deborahwolf

@alleycatkate I do consider myself fortunate to not be on medication. I did see an infectious disease doctor who recommended treatment but didn’t push when I expressed my concern about the medications and preference to take a watch and wait approach. Hopefully it is the right call.
I did not receive any information or recommendations for lung clearance.

Jump to this post

@alleycatkate I was treated too soon by a local doctor using 1 sputum test. Unfortunately, I did not get a second opinion and started on the meds. I was so ghastly nauseated from the meds, lost 40 pounds in 3 months. Changed doctors…. no meds, watch for signs.
3 years later still fine, moved to another state. New doctor believes in the same approach.
YAY 2 opinions!

REPLY

I've had the same experience. I am going in later in the month for a CT scan and than a 6 month follow up to see if anything has changed in my lungs. He did have me start doing the Aerobica.

Liked by deborahwolf

REPLY

@deborahwolf I’ve had the same experience. I was diagnosed 2016. No medication for me either. My pulmonary Dr was a little concerned this past October because I had developed a 1.5 cm nodule since last year and mentioned antibiotics as a consideration. but we decided to wait until another CT scan 3 months later. That showed the nodule had reduced in size. So since I still have same mild symptoms you mentioned, still no meds. I do lung clearance exercises with the Aerobika twice a day, (for the Bronchiectasis), and I nebulize .9 % and 3% saline alternately, for the MAI/MAC.
Gina

REPLY

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

REPLY
@alleycatkate

@deborahwolf I went to Mayo for a second opinion and got the same response. I think for now we can consider ourselves very fortunate. The first opinion from a local pulmonologist was basically the same but with no information or suggestions for improving my lung condition (nebulizing saline and lung clearance with an acapella device). I think it is always a good idea to get a second opinion, if for just the peace of mind. I was also told to Follow up yearly with an exray and sputum and to keep antibiotics on hand in case of a flare up (but not to use any of the big 3) Best wishes,
Kate

Jump to this post

@migizii I am also treated at Mayo and received the same recommendations following sputum test results except he wants me to do respiratory hygiene program twice daily instead of one time a day with 6-9 month follow up.

REPLY

@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.

Liked by Jennifer

REPLY
@janovr

@alleycatkate I was treated too soon by a local doctor using 1 sputum test. Unfortunately, I did not get a second opinion and started on the meds. I was so ghastly nauseated from the meds, lost 40 pounds in 3 months. Changed doctors…. no meds, watch for signs.
3 years later still fine, moved to another state. New doctor believes in the same approach.
YAY 2 opinions!

Jump to this post

@janovr I believe locale has a lot to do with how sick people become with mac and pseudomonas. Whenever I am in the state of Virginia for too long, I get re-infected with either mac or pseudomonas. 'Too long' for me in that state is like three months. Now, I take shorter visits up there. I wouldn't go at all except that ALL of my family is there, including my one and only daughter. I believe it could be due to the dampness there. That makes for more molds and god knows what under the rotting leaves. I now live in South Carolina near the shore. The ground is dry 20 minutes after it rains because it drains quickly through the sandy soil. I have done so much better health wise since I moved here. (that, and going to Mayo Clinic).

REPLY

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.

REPLY
@heathert

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

Jump to this post

@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)

REPLY
@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.

Jump to this post

@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!

REPLY

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

REPLY
Please login or register to post a reply.