Hello Nan, you and I are the same age with same issues in the same state.
Should we be friends? -Terri M.
 

True!
 

Hello, you are Dale right? You are right about this mycobacterium being
endemic. I feel there needs to be more research in immunodeficiency more so than
drugs to treat it. This darn bug can keep mutating until the cows come
home!
 

Amen! Has anyone come across a systematic way of evaluating where one might contract this? If there was a checklist of things to evaluate in your daily envoronment, it might help keep the reinfection rate down.

@windwalker, aka Terri M., Yes, probably! I'm in Beaufort. I'm not sure how to contact each other but I'm sure we can figure it out. The reply buttons aren't working for me so I just go back to the main Mayo Connect main page to respond.
Nan

I live in Charleston SC and have recently been diagnosed with Bronchiectasis with MAC infection and just started on my 1st antibiotic Azithyromic which is already caused me problems and don't know how i'm going to be able to handle 2 other antibiotics along with this one for the next almost 2 years!!!!! I also have epilepsy and anytime i take anitbiotics is lower my medications and is already causing me to have more seizures! I just wander if it is worth the hardship of going thru these antibiotics side effects and just keep the infection?! and what are the chances of getting the infection again once or if you got it cleared up?

I am so sorry! The way it has been explained to me several times is that over time MAC will continue to cause damage to our lungs, so in the "big picture" it is our best option. Yes there is, unfortunately, the chance of reinfectuon. Perhaps the doctor can change that med to clarithromycin. Feel better!

anr38....I was DX with MAC and Bron. in May, 2015.  I tried twice to take the medicine.  It put me in the hospital twice.   I was a healthy, active 78 year old at the time.  I am still fairly active at 80.   I was DX last May with COPD.  Never smoked.  My MAC specialist at Emory/Atlanta said for me, the cure was worse than the disease.    I go to Pulmonary Rehab twice a week.  Everyone is different.  I am pleased with my stability with this disease and try not to even think about it.  My doctor said this is a slow growing disease and I will die someday with this disease, but not from it.  I do not have my head stuck in the sand....I just refuse for this disease to define me and my life.    God bless you as you make this decision.     Jan/Ga.

I recommend getting a second and even third opinion on the need for antibiotics at this point particularly given your contraindicated seizure meds... some docs automatically put patients on the antibiotics even if not medically necessary at that time (I'm not yet on meds as my doc, who I found through ntminfo.org thus is well versed in NTM's, felt them unneeded as I have no symptoms as yet, and have some areas healing on their own and others cropping up which is how the infection works...) - what are your symptoms? If you are asymptomatic, get thee to another doc!

What is the name of your MAC specialist at Emory? Thanks. Terry