Connect
(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
That's so great, Terri! What a great feeling that must have been when you got that news! Nan
-
Like -
Helpful -
Hug
1 ReactionIt was great news. Thanks!
-
Like -
Helpful -
Hug
1 Reaction@ling123, I love it! Attitude is everything.
-
Like -
Helpful -
Hug
1 ReactionI finally got my my chloride saline! We had such a long wait! But I’m excited to start using it. And I’m looking forward to feeling great! Thanks all for the wonderful group with so many good advice. Rita
-
Like -
Helpful -
Hug
2 Reactions@gardenernj, a wholefood diet is unprocessed food. The meats are cuts of meat, not processed into hotdogs, coldcuts, etc. Fish. Vegetables and fruits are fresh or flash frozen. Avoid foods that come in a box more or less. I avoid gluten because it causes inflammation in my body and has since I was a kid. Wholefoods are basicly food left in their natural form without additives.
-
Like -
Helpful -
Hug
1 Reaction@america Yay!!! So glad you have your saline. It might feel harsh at first and make you cough. Remember coughing is good because it brings up the gunk. If you find it too irritatiing at first, do as much as you can and build up doing the full vial all at once. Most people do alright with it though. You become used to it eventually and it doesn't feel harsh (burn). Let me know if you see improvement by using it.
-
Like -
Helpful -
Hug
1 Reaction@alleycatkate Thank you for posting this. It was an interesting read. I like that NIH recognizes it's benefits as well.
-
Like -
Helpful -
Hug
2 ReactionsThanks Terri! I will let you know! I’m going to try it today. Most of the pharmacies don’t carry it here in Tampa.. I’m not sure why but I am so blessed to finally get it.
-
Like -
Helpful -
Hug
1 Reaction@boomerexpert, You are right. NTM infection is not rare. I believe a lot of it is misdiagnosed or undiagnosed. There was a push for pulmonologists to test every patient with chronic cough for 'Alpha-1' and now most of them do. I feel like it should be automatic that every patient get a sputem test and samples sent to the better labs that test for mycobacteriums.
-
Like -
Helpful -
Hug
1 Reaction@heathert, I have no answer for your dr's decision. I have no mucous either, but I will follow my drs treatment plan. He wants me to do it and I will because all that he has recommended for me since 2013 and brought me to better health and a much improved quality of life. Mind you, at Mayo, each patient is treated with individual treatment plans. It is not a cookie-cutter kind of place like so many others are. I have more than one lung disease going on, in fact, I have four. So my doctor feels the saline will be benificial for me. @alleycatkate posted that saline chart and the % that kill certain types of mycobacterium. You could print that out and show it to your dr. to open that discussion again. Or even ask why you shouldn't do saline.
-
Like -
Helpful -
Hug
1 Reaction