(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.
Thanks, Katherine, and feel free to share after you doc visit...I'm sure you will!
@unicorn .. Christa I wish I had saved my money and had gone directly to the Aerobika instead of listening to my doctor and buying the Acapella first and having it do zero for me! Our Forum speaks from experience .. sometimes I think the doctors just listen to the medical sales reps! Hugs! Katherine
The aeobika does suggest to do the huff-coughing after.
@luvocean .. Connie , thank you! Good advice! Hugs! Katherine
FROM MY FILE CABINET:
A "huff" cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. Personally I judge when to "quit" by the quantity and color of the sputum.
No, no antibiotics yet. Both my regular pulmonary Dr. and the specialist, Dr. Kamelhar at NYU don't think it's necessary yet. I have no symptoms. I'm using the Aerobika twice a day, but don't have much mucus to cough up. I'm scheduled in two weeks to have a sputum induction. I've never had that before so we'll see what happens after that.
Gina K
@ginak, Gina, good for you that you are using your Aerobika twice a day .. one of the best things you could be doing for yourself!! GREAT for lung clearance .. smart girl! Keep us posted on how your sputum cultures go .. AND ALWAYS request a HARD copy of the reports so you can keep track of things .. AND ask about anything you don't understand on the reports! Hugs! Katherine
I had similar, went for the induction and nothing came up
JO Ann
@katemn Hi Katherine. As you know, Alpha-1 is near and dear to me so I
would be very interested in hearing about your dr visit in July.
I read on your previous post about ambroxol mucosolvan its available here in the philippines and we can also buy it without prescription and yes it is very effective.
@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine