I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!
If you have the “MS Word” program on your computer:
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal “file cabinet” on MAC/MAI! Go to it!
KateMN
These tips are what’s keeping me sane … well perhaps I have gone too far. So important to understand how best to take meds. I am hoping to go to Denver for 1/16 first appointment with Dr. Drummond. I will ask her questions and let everyone know her thinking on all. I am confident it is the same as Dr. Huitt’s. Bless all of you for everything that you do to be of such help and comfort to all – especially we newbies. It is all so frightening and overwhelming. I am hoping to be able to continue to work even on these meds. We shall see. Thanks to you and to all,TerryPS: For the first time, I look forward to going to my email. I have two email addresses and both are usually filled with nonsense or work related stuff from my students (love them – but they are needy – then again, so am I). I am so happy to see the mail that comes from this site. You are all so caring — it is truly unbelievable and beyond remarkable. You are my biggest comfort.
Liked by Katherine, Alumni Mentor
Thanks. We will just miss each other. I will ask for extra copies of my CDs, that have already been sent, as per your suggestion. I am so grateful to have the opportunity to come to Denver. I have heard nothing but great stories about their professionalism and kindness. They have a satellite operations at Mt Sinai in NY, where I live, but it is NOTHING compared to Denver. Wishing you much success and healing.
Liked by Katherine, Alumni Mentor
Just sent a blank message — sorry. Thank you for helping me NOT to cry. I have felt like crying and just couldn’t … but I felt that the tears were there and needed to come out. Your email and others have helped me to no longer feel that need. Thank you just seems so inadequate – that said, thank you.Terry
Liked by Katherine, Alumni Mentor
You mentioned your students. I wonder how many of us teachers have MAC ?? Irene
Liked by Katherine, Alumni Mentor
No need to ever apologize for crying! I am just trying not to let MAC define me. Irene
Liked by Katherine, Alumni Mentor
It appears that I had bronchiectasis first — but they are uncertain. I tell my classes (graduate school) that I may have to leave the room for a minute or two to cough as I have a non-contagious bacterial lung infection. They have been remarkably thoughtful (then again I give “grades”) and now I don’t have to feel embarrassed about the possibility of having to cough. Don’t want to swallow the phlegm. I also tell them that I am of no danger to them but they are to me. I ask that if any student feels sick to please try and not get too close. I am sounding a bit paranoid and phobic but that can’t be helped. I have found that honesty is truly the best policy. I tend to be more private than what this email suggests.Terry
Liked by Katherine, Alumni Mentor
I will do just that! I will call around. I was just thinking that I might stay with my infectious disease doctor because of her kindness but your email dissuaded me from sticking. My instinct is to change and your email made that decision more solid in my mind.Terry
Liked by Katherine, Alumni Mentor, tdrell
Just when I think that I could not be more grateful for all the responses, I am proven wrong when I read your email. You and all have helped me to fight the depression, fear, and aloneness. So grateful. Not sure if I am supposed to respond to all emails but feel the need to do. Want all to know that their emails and read and cherished by me. Terry
Liked by Katherine, Alumni Mentor, jewel8888
HMMM. I would be interested in knowing that as well. Very curious.Terry
Liked by Katherine, Alumni Mentor
RE: Bronchiectasis — I subscribe to “Bronchiectasis News Today”. Lots of good info.
Main site: https://bronchiectasisnewstoday.com/
Sample Weekly Digest you can sign up for: http://us5.campaign-archive1.com/?u=52c64784d386bd00ea57ee792&id=33155d084e&e=551e0ae719
You can easily get past issues of the Weekly Digest:
http://us5.campaign-archive2.com/home/?u=52c64784d386bd00ea57ee792&id=d9df0e1c03
Paula
Liked by Katherine, Alumni Mentor
128128terry11t, Terry, thank you is just fine! You will find that YOU will be there for others as THEY begin their first scary steps .. just as our lovely people have been there for you .. that is what our community is all about! “Playing it forward”! We are ALL on the same MAC journey .. just at different stages .. different steps along the way… BUT the absolute same journey. That is why we all understand why we need to be there for each other .. SO that a new person not feel so alone and afraid. We truly remember what it was like in the beginning .. and don’t want another person to go though any more than necessary .. THROUGH educating themselves .. due diligence .. taking charge .. advocating for themselves.. they TAKE BACK THEIR OWN POWER! Over their fears .. over their lives .. over their disease .. over getting back their positive thinking .. positive healthy living. It is part and parcel of how our community works. You are now one of us! Sending you a hug! Katherine
@katemn
@lindam272, Linda, ABSOLUTELY do check with you doctor .. BUT do ask him to check the research .. BECAUSE you have a “friend” who’s doctor AND pharmacist said “the a drug needs to hit the bloodstream at full strength. A weak dose may not knock out the bacteria and let it morph into a different bacteria that resists the medicine.” That way it requires him to do his “due diligence” and actually check .. NOT just write out a quick prescription!! Unfortunately we ALL must be our own BEST advocates .. it is OUR body and we must take darn good care of it! Hugs! Katherine