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
@bevmac I think practicing mindfulness helps. It’s all in the attitude! My ID doctor recommended mindfulness for me. There is a lot online if you are unfamiliar with it.
Liked by Terri Martin., Volunteer Mentor, anniepie
Hi Phyllis,
Good to hear from you. I take liquid (refrigerated) probiotics ie live not freeze dried I just reckon they are more easily biologically absorbed! I take capsules when away the more more per billion per capsule and I only go to Whole Foods for them.
When I first took the ethambutol I had my eyes tested every four months for year. It was expensive but it to give me a baseline for what I can tolerate . I was fine no problems. I haven't had my eyes tested and I'm not going to unless I have to be on the big 3 for over 6 months thi time. Last time I was on the big 3 for a year every other day. As much as it's the optic
Nerve that can be affected it's the possible colour differentiation problems that can be more probable. Only we are all different. Id say check it out with the eye exams to be conservative one can't loose!
Hang on there!
Hi unicorn. My daughters, both nurses, one in an ER, and my doc have assured me there is no risk of transmission to my little grandkids. The only restriction my doc gave me was to stay away from my transplant patient cousin until I have 2 clean sputum cultures. That's because he is immunosuppressed. In fact, I am far more likely to catch a virus or infection from one of them.
Here is a new question for all of you. How common is multi-generational occuence of bronchiectasis?
My mother had bronchiectasis, probably from a combination of recurrent lung infections and rheumatoid arthritis. She had bouts of pseudomonas pneumonia, but died in her 80's from heart issues after several strokes.
I have bronchiectasis, probably from chronic asthma and serious lung infections. I also have MAC and have had pseudomonas pneumonia.
My husband has bronchiectasis too, from rheumatoid arthritis, but no MAC or pseudomonas.
Now our under-40 daughter has been diagnosed with bronchiectasis. She has at least one genetic marker for CF, but tested negative for the disease at the university of Minnesota. She has had chronic lung, sinus and digestive issues for most of her life, including bouts of intractable asthma. She is being tested for MAC. Another daughter has no known lung issues at this time, but had asthma as a child and teen, and gets pleurisy almost every winter.
One of my siblings also has bronchiectasis, as well as serious allergic and lung issues.
Is anyone aware of any cross-generational studies?
Liked by america
@unicorn
THIS IS TO everyone. My son having baby soon, I will be around a lot, What cautions if any should i take, Mask all the time? I can get fancy one and be a super hero…….