(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Throat clearing info
https://www.fauquierent.net/throatclearing.htm
Video of déglutition
https://www.youtube.com/watch?v=wqMCzuIiPaM&sns=em
Check video déglutition
https://www.google.ca/search?q=video+deglutition+video&ie=UTF-8&oe=UTF-8&hl=en-ca&client=safari
Check the video exercises swallowing difficulties
https://m.youtube.com/watch?v=ERQarqgyfOA
@maggiew, Hi Maggie. So glad that you are continuing to improve.
@nick52, Thank you Nicole. I will practice these exercises for swallowing. Good to know also, in case we need to help any of our family members with swallowing issues.
@nick52 Nicole, can you please explain the issue you have with radiation? Thanks!
@jkiemen, I agree with @boomerexpert . Find another doctor. Aspiration of food, drink, stomach acid, and saliva is a suspected cause of bronchiectasis and mycobacterium infections, especially MAC. Can also cause pneumonias. The Mayo did all kinds of diagnostic tests on me for swallowing. Discovered a hietal hernia and GERD.
@maggiew I looked up 'moraxella'. It is not so rare, what would be rare about it is if a totally healthy adult caught an infection from it. It is fairly common for people with COPD and bronchiectasis to contract this. It is the germ that causes pink eye in children and respiratory infection (pneumonia) in adults with illness and the elderly. It is commonly picked up in nursery schools and hospitals and is easily treated with just about any antibiotic. It is suseptible to most of them. The ones you are on; should take care of it. I am confused as to why you were put on the BIG 3 antibiotics if your bronchioscope came back negative for it. YOU MAY WANT TO SEEK A SECOND OPINION. From what I have read, you only need one antibiotic such as ciprofloxacin to get rid of the moraxella. The BIG 3 antibiotics are harsh and should only be used, according to many doctors from cutting edge institutions, if you have a full blown, colonizing case of MAC. About Katherine...... I wish you could have conversed with her here. She was an amazing person, I miss her so much. That is not a time that I get on this site and don't think of her. She not only inspired me to get well and stay well; but she also unintentionally helped me to be a better person. Stay with us, and we can walk this journey together. You posted this eight days ago, so I am hoping that each of those eight days found you feeling a little bit better with each one. Please keep us posted on how you are doing. Hugs!
@maggiew I agree w/Terri...get a second and even third opinion...being on any antibiotics let alone those associated with MAC when not necessary is dangerous.