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
Heathert thanks for posting this article….. interesting …..one statement I have never seen before… NTM Patients will have to be monitored for all their lives.
In May…the 17, 2018 in San Diego…. American Thoracic Society and NTMINFO.Org will be having a joint conference. I believe the ATA will publish current NTM treatment guidelines.
Tdrell
Liked by heathert, Terri Martin, Volunteer Mentor
For those of you who are Christians, read about the Miraculous Medal. We all say we are praying for each other to get better. When medications, and early clinical trials are not yet ready for us, we resort to allot of praying. Praying for healing, prayers for our MD’s to give us good care, prayers there will be a new treatment soon, prayers for the researchers. We just have to keep praying.
So happy yet scared to have found this site and your experience & knowledge. After 5 yrs of coughing and hacking , my newest pulmonalogist has told me,just last week I have Mac Of course it scares me,,, yet I want to take on the best attitude to face it. 2 yrs ago an infectious disease Dr prescribed Cefadroxil ,,, it threw me into Sjogrene symptoms, a celiac diagnosis, weight loss. It’s been a real battle since. I dread the idea of the protocol for this Mac as its antibiotics, which I’ve had so much of already and the gut is so damaged. How does one take these and heal the gut? Anyhow, I feel blessed to have found others who understand as with most things, unless you experience it you don’t know……. Thank you, Margaret
Liked by Colleen Young, Connect Director
Hi Margaret. Yes the antibiotics are terrible on the gut. I have been off them for a year and gut much better, but still cannot put weight on. Kind of leaves you with IBS. though I rarely get cramping anymore. I quit drugs because too rough on my system. MAC getting worse off of them, so I am hanging on hoping someone will come up with a less damaging solution. Hopong for some sort of inhalant that doesnt affect organs so much. xo
@ginak
I’m glad you were able to put the link, I received an email about it, and took the pictures of the email to share.