(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!
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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:
- 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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Nick, i got me a clear lungs extra strength. how many you take a day? they are expensive and how can you if they work? I have MAC for 3 yrs now. I would like to take other medication. Are you better now? Thanks Cila.
Thx Nic. I do have to worry about my liver because I am alpha anti-trypsin deficient (carrier MZ only thank goodness so not as deficient as some but my doctor thinks this is why I developed Bronchiectasis. It also negatively effects the liver.
Cola I had great experience with Clear Lungs. At the beginning I did it twice a day 2 caps. I had hardly mucus after but nowI take as needed. I haven’t had any bad experience breathing since. I always have some to make sure I decongestion my lung right away. I stop when my breathing is good no wheezing. I have bronchiectasis and they found a MAC in the la culture after a bronchoscope.I haven’t had any test or other treatment since. It’s been 2 years. I thank God every day. If your symptoms are bad you can follow the directions on the bottle. You must have a good healthy diet no fried food. Once an a while I do but I treat myself with Milk Thistle, Colustrum, and clear lungs when I wheeze a bit because of the mucus forming. I stay away from citrus fruits, all sweet drinks like cola...Etc, citrus juice and dairy products, It isn’t good for acid reflux and gives me mucus when I cheat.i decided not to cheat too often lol ! Hope this help! Do not hesitate if you have any other questions! Nic
That is what my doctor said also It is related but I decided to help cleaning my liver and my family doctor then gave me Milk Thistle it might help. If your liver is congestion it leave too much bile in your stomach and the acid goes to your lungs according to him. Milk Thistle is a flower so it isn’t dangerous. Do some research on it.
OMG! Nick52! I have been thinking about you and wondering how the heck you have been. What is going on with you girl??!
That is good news. I can forfeit meds too by drinking the tea and get relief.
Kathy, I would drink one cup a day, two if having a very bad day. I would drink it when my chest felt tight or I was coughing excessively.
Unfortunately the dong quai in Clear Lungs has estrogenic properties, so those of us with estrogen positive tumors Are advised to avoid. A wonderful website re contraindications and side effects of herbs and botanicals is contained in MSKCC.org , Website for Memorial Sloan Kettering Cancer Center. They have All About Herbs App, very informative.
Thanks! I’ll try it
@clpc Thanks for that great botanical site!! Kate