Hi Jo Ann: In regards to the MAC medications, the big 3, I only had 2 side effects the first year and a half, bad taste in mouth and tiredness. But after that, I got very bad intestinal cramping and had to go to bathroom a lot, bit weight loss. i would say get on the meds as soon as possible for as long as you can take them. My CT scan improved while on meds and I did not cough up blood. But now cant tolerate so I depend on exercise and nebulizer to clear mucous

I am wondering were you having symptoms when you started meds or was your condition fairly mild

Jo Ann

Hmmm, I always had a little shortness of breath, but I actually went to the first lung doctor when I had little bit of blood in sputum. I probably had this disease for many years without any symptoms, and was ok other than shortness of breath. It is very slow growing. But I know someone young that actually took medication for 2 years and got rid of MAC. Now he may not have had bronchiectasis, and he was young. He is the only one know of that got well, everyone else, including myself keeps reinfecting because of enlarged airways disease. My doc said I won't get rid of this, but can live a long life if I maintain sputum clearance and aerobics. Of course, when I cough up blood, that is a danger because of clotting an airway, so there is always some fear. See there is no hard set in stone way to handle this disease. Just gather info, educate, try everything doc and people on this site suggest, and hang on, there may be a cure coming some day. xo

I had blood once 2 months ago and none since. That was the first time and it was scary. I was treated with Levaquin for 2 weeks.  Has anyone done any research

on Glutathione?  It apparently is an antioxidant for lung disease. Some says it is poorly absorbed others say it may be absorbed. It is just more for lung health I guess not to cure anything.

Jo Ann

If this helps...I was a business owner and local radio personality when RA got so bad I had to go on disability and a forced retirement...and it took 3 years to finally get disability...I understand the transition and the loss of identity, but decided early on that my work is not all I am...my training, intelligence, and personality are no different. I joined groups of like-minded people on issues/areas of interest to me, and am thriving. You will, too!

@jkiemen Hi, Jo Ann & welcome! You have found a fantastic group!!! ~Jen 🙂

I am glad I found it. I have already been learning allot from the posts.

I am pretty scared right now because I feel helpless. As a nurse, I spend allot of time helping people but feel I  am not doing any thing to help myself. Just

waiting and watching.

I am glad I  found the group.

Jo Ann

@jkiemen .. Jo Ann .. PLEASE do not be so afraid! We ALL have been down this road .. we will be with you hand in hand now .. throughout this journey of yours .. our SHARED journey .. we have ALL been down this SAME road as you have now started. We ALL were scared like you are right now. BUT you will find IF .. as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side.

Jo Ann, what is REALLY important .. the reason you feel "helpless" right now is BECAUSE of your lack of knowledge about our shared disease. That is WHY it is SO good you have found us .. AND why you must read the past pages. Yes, some of it is redundant .. BUT there is SO much good information there. AND what you will absolutely find .. I PROMISE you .. is LOSING that fear .. that sense of helplessness. Why? BECAUSE "Knowledge is Power" as we say here .. PLUS you will absolutely learn HOW to be your OWN best advocate!

Please do keep coming back .. ask any questions you have .. we will be here for you .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine

@jkiemen, Jo Ann, since you are new to Connect .. Dr Aksamit is an internationally known expert on MAC/Bronchiectasis at Mayo Clinic, Rochester MN .. so I thought I would answer you from my Trusty File Cabinet! Hugs to You! Katherine

ANTIBIOTIC .. TREAT OR NOT TREAT
Dr. Aksamit and have since 2007 .. from working with him I get a strong sense that the decision to start or NOT start antibiotic for a doctor is like putting a BIG puzzle together .. the components are CHANGES IN: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. my responses to his VARIOUS medical questions. He then puts it all together and decides if I need to come back in 3 mos .. 6 mos .. 12 mos. It ALL depends on the changes .. ie progression of the disease .. and ONLY the doctor can put that puzzle together! But THAT is the importance of proper frequency of follow up appointments .. the mycobacterium is a sneaky critter that needs to be watched and followed!

Hi Jo ann, I know, super scary, but it has happened to me 5 times, twice bad, and it always stops.