New Diagnosis of MAC/MAI & I'm scared

@papillion Hi there. You can tap on my photo and read my bio of how I went on a different regimen of antibiotics. There are other treatment options out there.

@andyj Hi there. How did your appointment go?

@windwalker Tks for asking, Terri. Cardiologist changed Sotalol (for a-fib) to a combo of metaprolol (generic & affordable) and flecainide (costly! Doc said it's generic too, but Walgreens charged $75 for 3 mos supply - retail price $503. Donut hole, here I come!) This change will allow for taking antibiotic to treat pseudomonas. I'll see infectious disease doc Tuesday 2/5 to get that started. My dear friend who has just retired from being Lab Director at County Health Dept agrees it's important to knock that asap. Will talk about MAC antibiotics after that...plan on doing more reading before then!

Tdrell: You have been such a help to me so far. I'm going to push it a little farther. I have been going to Tyler, Tx to Dr. David Griffith for eight years. I adore him and feel that my attitude of not having my life spoiled is solely due to him. However, the trip there has become such a hardship. No good way to fly- hours layover- and so terrible costly. We can fly straight to Denver from our hometown and I am seriously thinking of changing now that we're getting older and especially if Dr. Mitchell operates on me. Who is your doctor and are they taking new patients? Giving up Dr. Griffith will be huge for me!

@conniewright ....I understand your ambivalence re giving up Dr Griffin yet wanting to have surgery with Dr Mitchell in Denver......wonder if you have to give up Dr Griffen but could have surgery in Denver?? Just reread previous post where you said Dr Griffin will send you to Dr Mitchell. The Mycobacterium Dept is short a Dr....so not sure how long you’d have to wait for that part of evaluation. Dr Huitt is my ID doctor....but the other two appear very competent. Dr Daley....Dr kasperbauer.....go to national jewish.org or you tube and hunt around for NTM workshops at National Jewish health to hear each speak. Tdrell

I have read great things about Dr. Huitt and Dr. Kasperbauer both. Just wondered who you saw. They may not be taking new patients but the trip to Tyler is going to soon not be an option for us. We need direct flights! Can't describe the trouble we've had with layovers, reroutes, etc.

@conniewright ... having just returned from plane trips cross country that required changing planes/layovers....I hear you!! I hope when you buy the plane ticket you tell them you need wheelchair assistance at airport.Most important at Denver International which is twice size of Manhattan.
I did not hear that NJH Mycobacterium is not taking new clients....it may take longer....go to their site and begin process! Right now!! Tdrell

Hi...I’ve been recently diagnosed with MAC lung disease from a bronchoscopy. I was prescribed ethambutol and arythromycin. I have broncheastasis as well. Have a constant burning feeling in my lungs. It’s been 2 days since starting the antibiotics. I’m curious why my doctor didn’t prescribe the 3rd antibiotic called rifampin? Everything I read is saying it’s a hard infection to beat especially if you have damaged lungs from the broncheastasis. I am taking one pill of the arythromycin and 1200mg which is 3 pills of the ethambutol daily as well every day. Curious what everyone’s thoughts are on this if it sounds right? Not getting much answers from the doctor at the moment. I’m in the process of getting a new referal. Thanks for any reply’s.

Hi Laura, You have a number of questions that only your doc can answer. First, what is his/her experience treating MAC and/or bronchiectasis? Second, was sensitivity testing done on you specimin to determine which antibiotics to use? Third, why did the doctor omit rifampin from the regime? (May be due to other health concerns you have) Fourth, why the every day dosage regime as opposed to the 3 times weekly protocol?
Some questions for you: When were you diagnosed with bronch, and how was the diagnosis made? What symptoms were you experiencing that led to the bronchoscopy? How long was the interval from the bronchoscopy to the beginning of treatment? What other treatments have been prescribed for the bronchiectasis (nebs, inhalers, Acapella or other therapies to loosen mucus...)?

Hi Sue... a little background on me. I am 34 in the military. Deployed 3 times to Iraq once to Afghanistan. Most likely got the broncheastasis from the burn pits as I am otherwise very healthy never smoked. Last 2-1/2 years I been coughing small amounts of blood so I thought I should finally tell the doc. They did chest X-ray and saw some abnormalities. Followed up by ct and found bilateral scarring on the lungs and multiple modules and cavities. They biopsied the suspicious nodule and diagnosed with MAC lung disease. My pulmonary doctor doesn’t seem to be very knowledgeable and referred me to infectious medicine doctor who I haven’t met with yet due to referral process. I’m trying to get second opinion from a different pulmonologist on everything. I’ve had no mention of treatment for the broncheastasis. My condition is getting worse by the day and my lungs feel like they are on fire. I’ve called twice asking about the medication prescribed with no answer. It is really disappointing. For now I am taking the ethambutol and arythromycin until I can get more answers. I just feel like time is not on my side and this isn’t doing what it needs to do to treat it. Thank you for the reply.