Irene, this is really serious. My heart goes out to you. BUT you MUST be proactive in this situation. Your life and your health is at risk. I know the antibiotic treatment was difficult in the beginning .. it is for many people .. BUT it DOES get easier IF you have the right doctor helping you along the way .. starting the meds ONE at a time .. ONE week at a time .. letting your body adjust a little at a time can make it easier for most people.

If I sound like a Mama Bear .. I kinda am! It is SO irritating when male doctors tell females they are “depressed” when they come in with physical symptoms .. WITHOUT attempting to get to the physical ROOT CAUSES!! Luckily YOU know your body after having lived in it for a FEW more years than that mediocre doctor .. AND having a caring relative who sent you for additional testing!

BUT I really suggest you do some further reading on past pages of our Forum .. you will find that MANY have an initial difficult time with the antibiotic treatment .. BUT with help from a KNOWLEDGEABLE MAC Infectious Disease doctor who will listen and help you along on your journey .. you WILL adjust to the treatment .. and come out on the other side. I was on 4-5 antibiotics for thirty months .. AND have now been “stable” since May 2014 .. living a full happy life .. traveling .. having fun .. a good life! You can also!

I really do not think it matters where/how you got the MAC. There is a lot of debate and research going on right now on that issue .. but all you need right now to do is concentrate on getting the right help and treatment. You say “ I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved.” If I was sitting in your shoes here is what I would do:

FIRST request a copy of that: “a CT scan which showed the MAC, and consequent bronchoscopy confirmed it.” .. this initial medical information will be VITAL for any new antibiotic treatment. Do whatever is necessary to have the documents .. (you should request “Any and All Records”) be mailed to YOU directly! This eliminates the chance the documents do not get to the proper place .. you can hand carry them yourself!

THEN:
1. ask the Infectious Disease doctor at UMASS: How many MAC patients have you treated in the past 12 months? You want a doctor KNOWLEDGEABLE about our disease!
2. what would your treatment plan for me be
3. how would you handle side effects based on my past history

Before you do this Irene, I would especially recommend an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. Knowledge is power .. DO your “Due Diligence” in educating yourself .. no one cares about your body as much you do! Take care of that body so it can take care of you!
I have put the link below:
http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
Irene, again, I am so glad you found our Forum! Keep coming back .. you will find a community of very kind supportive people who will be here for you on your journey! I hope the above is of some help to you! Sending you a hug in this difficult time! Katherine

Hi Irene! Just wondering how your doing? You sound like me so much with this Mac stuff.where it come from! I'm now like you eighty some pounds,oxygen, sick, been fighting this since 2011, have you gotten any answers? God bless you.

Thank you for asking. Unfortunately, I am not doing very well and have dropped into the 70's which is very concerning. I am thankful for each day. We moved back to Connecticut to be with our many children and even more grandbabies. As Dorothy said, "There's no place like home!" I feel I know a whole lot about MAC, but getting better doesn't seem to be within reach at this point. For those of us who can maintain a healthy weight, I think the prognosis is better. God bless you real good too!

I'm so sorry to hear your not doing so well, this stuff is a real   struggle.my weight is in the 80s so I can know how you feel, I got bone to bone on my butt, it c hurts to sit, sores, you got any suggestions for them? At least we know the Lord's arms are open for us, I'm praying for you, I feel I'm right beside you,much love to you!!

@irene5 , Hi Irene. I didn't know that you had lost that much weight, I know that is VERY disconcerting to you you. Do you have any kind of 'active' infection going on right now? Do you know what kind of MAC you have? I am going to private message you my phone number. I'd like to talk to you about your treatment if you don't mind. I want to compare notes with you. I feel for you in the struggle to fight this. Hugs, Terri

@myerskaren , Karen, have you had a fairly recent sputem test to see if you have any active infections going on? What year were you diagnosed with MAC? Did you do the BIG 3 for treatment?

@myerskaren, Hi Karen. I have read back through all of your posts. I am so glad that you found this forum. Each and every member on this site has my heart when they are not feeling good. I am concerned about you not being on any kind of treatment what so ever, and also concerned that you may not be seeing a GOOD doctor. What state do you live in? It sounds like you are in need of good care.

Hi Terri. I am in a very bad way. How do you do a private message? Sorry I haven't gotten back to you. Too many bumps in the road. Trying very hard to stay positive. 🙂 Thank you.

Hi @irene5
I'm just seeing this message now. How are you doing?

PS: See "How to Send a Private Message" on this page: https://connect.mayoclinic.org/get-started-on-connect/

Thank you Colleen. Much appreciated.