(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 ..
– 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.
Hello Sue, I've started back on the Azithromycin 500 mg July 4th. I took it at 8:00pm before bed. The first week was OK. Then, last night I started the Ethambutol HCL 400mg. Took it at 8:00pm also with the Azithromycin.
At 1:00am I was having cold chills that lasted until 4:00am. This morning I felt like I got hit by a train. Every muscle in my body hurts. Today, I'm going to take them separately. Any suggestions? Thanks, MacInPA.
Tylenol helped me tolerate the aches & relieved the chills.
If it doesn't resolve in a few days, amybe call the doc – is there a reason for every day instead of 3x a week?
Sue, I was worried about taking Tylenol because of the liver issues. He's never talked about 3x a week. That would help. I'll ask. Thanks again. MacInPA
GM, I need help as on the 3 MAC antibiotics, Aryikace and using my nebulizer 3 times a day 1st Albuterol and then Saline 3% I cannot cough up hardly anything. Have horrible cough and some comes up and cough is wet still very little. Any suggestions would be appreciated.
Hello Helen @helenrivera You might try Airway Clearance to help bring up the mucous/sputum. For me this includes Nebulizing 7% saline in AM and 3% in PM. Aerobica device 2-3 times throughout the day. Once daily usually late morning I will do postural drainage (you can put that in the search bar at the top of this page and you will find many helpful things to try), then manual percussion on my chest followed by huff coughing then regular coughing and I almost always get up 1-3 tsp of sputum. Luckily I have been off antibiotics for almost 2 years and I have no symptoms other than the cough. My yearly CTs and breathing tests are all stable. I read your history and I see your case is more complicated but I really think the airway clearance will help you. I would invite you to view the following youtube video by Dr McShane.
Good luck to you, Bill
It sounds like you are doing everything right. Not everyone produces much mucus. My daughter has nearly none unless she has a cold. Unless your lungs are crackling, I don't think I would be too worried.
Have you discussed this with your docs?
Thank you for setting my mind at rest. I have appt on the 19th with ID doctor. I am going to ask if I should be at 7% saline and about the Glutathione. I purchased the Aerobika and hope this helps a the Alcapala not doing much. So you know of there is a difference with the Arykace versus the Tobramycin? Thanks for answering as I feel so overwhelmed by all these meds.
Thank you Bill. I will start using a Aerobika this week as I ordered one. I am using a Message Gun and the Alcapala but little to nothing. Watching the video now. Thank you and prayers you stay off these meds. God Bless
Hi Group. I'm on day 11 of inhaled Tobi. The more the treatment goes on my cough seems to get worse–makes throat sore. The amount of yellow, green, brownish sputum has increased. Seems like all this coughing could be making my bronchiectasis worse, i.e. damaging…. Sorry I'm rambling. It seems when I think I've got the treatment figured out I cough more. Anyway, let me ask this question. When you cough up anything of color–not pale stuff either but real color and thick, does that indicate there is infection still in my lungs? And, is it a case when I'll always cough up something? I do realize we're all different and this disease just confirms that for sure. God bless us all.
Yes, the colored sputum is evidence of infection. The fact that you are coughing it up is a good thing – getting the bacteria and it's safe hiding place out of your lungs. Coughing is not going to damage your lungs, but it can give you sore ribs.
What are you doing for airway clearance to 1) thin the mucus (e.g. saline or Mucinex) and 2) move the mucus (e.g. Aerobika, postural drainage, etc)?