Thank you . It is good to hear some not so scary responses. I get my baseline eye exam today and then will be starting. Jo Ann K

@jkiemen - Hi, Jo Ann, I agree with the above. I was on rifampin, ethambutol and azithromyacin and did pretty well for the first 7 months until I noticed I was experiencing confusion which is a side effect of rifampin. I went off the meds half way through the 14 months my doc wanted me to take them. I've had 4 clean sputum cultures in the last 12 months and am waiting for my latest one to come back sometime in the next couple of weeks. While on the meds, I had my blood drawn every month to check liver and kidney functions and had eye exams every 6 weeks or so for the first 6 months, then was going on quarterly but went off the meds so stopped. I had my hearing checked for a baseline and then went every 3 months for checkups. Everyone's body reacts differently so I guess the main thing is to not expect to have horrible side effects but to go into it with a positive attitude - no fear! Keep us posted on how you are doing. Linda

Thanks. I am glad I am hearing some not so bad information. Will keep you all posted and probably ask for more advise along the way.

@jenblalock, Hi Jen. It is good to hear success stories from those who have taken the BIG 3. I hope that you will stay with us even though you are not infected. Your story can inspire others. I am glad to know that that worked for you. - Hugs!

Hi @jenblalock
My mom has just been diagnosed with MAC. She is an active, healthy 65 year old woman. She is on three drugs:
Ethambutol, Rifabutin, and Azithromycin (not Clofazimine). Is there anything else you recommend for a successful eradication? Is there anything else you attribute to your defeating this disease? Thanks for any thoughts or recommendations you or the group can provide.

Hi @rosecurran I remember the confusion when I was diagnosed last year. I was diagnosed with MAC, bronchiectasis and a couple of cavitary lesions (holes in the lungs). I've been a runner and a former triathlete and have always been super healthy so I was floored! I can only speak for myself as I am definitely no expert on this disease.

Was your mom also diagnosed with Bronchiectasis? After research, I learned that while the MAC infection can be arrested with the meds, bronchiectasis is with us forever.

I was put on Clofazimine because I didn't tolerate one of the meds. So, if she is tolerating the 3 meds okay, I doubt she'll take that.

For myself, I did nothing special. I took the meds and did my lung clearance (which is for life if a person has bronchiectasis) and tried to get some exercise because that is good for the lungs. Because of the cavitary lesions I also was put on a drug called Amikacin, first by IV with a PICC line and then inhaled. My first sputum culture after 3 months came back negative and all sputum cultures after that came back negative also, although that is not the case for everyone. I stayed on the meds for a total of 15 months.

I have been off meds since April this year and doing pretty well. Started working out again although lately I've been rather lax (note to self: get back to it). Right now I'm going through some sort of little thing but lungs look no worse so I take that as a win. I am still adjusting to my lungs never being 'normal' and trying to be satisfied that there have been no negative changes in my CT scans.

So, all in all, it is a long learning process and a new normal. I just turned 63, by the way and was 61 when diagnosed. I'm sure others will chime in here. Best to you and your mom.

I am newly diagnosed with MAC and was at the gym every day and working with a
Personal trainer. Recently my severe Crohn’s disease flared. I was hospitalized 5 days last week at Mayo Florida.
My question: since you were athletic, did you suspect any problems with your lungs? I am still stunned. If I were to have a doctor listen to my lungs they sound clear. I cough up nothing and in fact, don’t even cough. My question is: once the 3 medicines start to work, will I ever cough up anything? Is there something in there to loosen up and I don’t know it exists. This is so frustrating to me to have to go on antibiotics for 18 months when I feel fine concerning my lungs. Meanwhile, I cannot start my Remicade for my Crohn’s, which is severe , until the MAC is treated.

I have similar symptoms. I exercised every day treadmill, elliptical etc and was doing OK. In fact, a week before my last CT I was climbing mountains in California with my 25 year old son. I rarely cough and when I do it seems it is more of congestion in by throat from what feels like post nasal drip. I can't cough anything up with inductions, mucinex and my Aribika device. Then I got the CT results and the prescription. Now I feel like an invalid in just one week. Maybe part if it is feeling vulnerable. I don't know. It is all overwhelming.

@jenblalock Thank you so much for your reply! I didn't see it somehow beforehand! I am so pleased to hear you are doing well. I imagine, as a former athlete, it came as quite a shock when you learned of your illness. My mom was not diagnosed with bronchiectasis, just MAC.

She walks on the treadmill daily and I know she feels this is very important for keeping her lungs strong.

She did have a question for you and the group--how close together do you take the medicines? She said she takes the first, then goes back to sleep (it makes her feel the worst); two hours later she takes the next, goes to the gym, and when she gets home eats a big bowl of oatmeal and takes the third. I think she should be taking them closer together--does anyone know? When she has taken them close together, it makes her much more sick, which is why she doesn't like to (although I think she needs to). Love any thoughts.

Thanks again for your reply!!

@jenblablock - Correction - she DOES have bronchiectasis but not severely. She also has "shattered glass effect" rather than a hole in her lung but it can develop into a hole. I will ask her to ask about it at her next appointment.