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(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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Hi Y'all!
Been following nebulizer talk. I'm prescribed neb. 3 times a day with two drugs- albuterol and budesonide. I don't get up any phelm after but do get some about 4 times a day. I don't think I have dry bronchiectasis as I'm coughing up phelm at times. But I'm also not getting any phelm after using my aerobika device. Is there a connnection between how much sputum and how clear your lungs are?
Hugs from David
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1 Reaction@david1952, Hi David, I really think this might be a question to ask your Pulmonologist. I also have Bronchiectasis .. AND I know that is known for sputum production AND important to get the sputum up .. but if you ONLY have MAC I STILL found 'It is associated with excessive mucous production that results in coughing and small to copious amounts of sputum' http://www.maclungdisease.org/frequently-asked-questions
SO since each of our bodies are so different .. I think this question is one for your own doctor who knows ALL your medical info. Hope that helps! Hugs! Katherine
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1 ReactionCalling EVERYONE .. and especially newer members .. @sophie1019 and @kaystrand .. please reach out to @dianelobosco .. she is new and SO scared .. you well know how scary it is in the beginning .. you would be WONDERFUL help in her beginning journey with your positive spirit and gumptions! Hugs to you all! Katherine
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1 Reaction@dianelobosco .. Hello .. may I call you Diane? SO glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! PLEASE do not be so afraid! We ALL have been down this road .. we will be with you hand in hand now .. through out this journey of yours .. our SHARED journey .. we have ALL been down this SAME road as you have now started. We ALL were scared like you are right now.
BUT you will find IF as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. ask any questions you have .. we will be here for you .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine
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1 Reaction<br><br><br><br><br><br>Linda – this is great to learn about – thank you – I will order it! <br>Pam<br><br><br> <br><br>
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1 Reaction<br><br><br><br><br><br>I have not had any side affects with the Symbicort – it is just that <br>Katherine mentioned that these inhalers should help us cough up the sputum, and <br>the Symbicort does not make me cough – so I just wonder if some of the others <br>might be more beneficial. Pam<br><br><br> <br><br>
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1 Reaction@lindam272, Linda, thank you for jumping in. I think you are RIGHT ON!! We need to remember the theory of mycobacterium being '"aerosolizing' in showers/hot tubs etc. So it certainly would also be true for humidifiers and diffusers. Thanks for pointing this out! SO important! The ONLY time we should be using liquid into our lungs would be doctor prescribed with a nebulizer/medicine/saline! Hugs! Katherine
@lindam272, Linda and @pamelasc1, Pam , just a heads up on the 'Ionic Personal Air Purifier called the Minimate when I fly.'
I have used it for years BUT it is actually illegal on an airplane now days due to the battery. SO what I do .. I always wear a jacket when I fly .. because I am always cold .. SO I carefully tuck it into the left side of my jacket with just the air end sticking out. THEN it depends on IF the Flight Attendant is really vigilant OR mean! By being careful .. only ONCE has an Attendant DEMANDED that I remove my unit. She brought out her hefty Rules Manual! So be careful in your use .. because with it I have been really lucky not to pick up viruses on airplanes! Hugs! Katherine
<br><br><br><br><br><br>speaking of hot tubs; has anyone out there looked into wearing a vapor mask <br>when using a hot tub? I ask because I have put my hot tub to bed for the <br>time being, on the advice of my doctor. But I would like to think I could use it <br>again due to a bad back. I know it would be strange to climb into a hot <br>tub with a rather scary looking mask on, but I would do it, if I knew it was <br>giving me some protection from the vapors. I did have the water <br>tested just before I emptied it, and it came back positive for pseudemones, but <br>did not show signs of MAC ( and I had pseudemones at one point, so I could have <br>very well gotten it from the hot tub. Pam<br><br><br> <br><br>
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2 ReactionsThanks @lindam272,Linda, all these ideas really help us all! Our bodies and reactions are so different! Personally the first time I was given Albuterol it triggered a horrid migraine so I just can't use it. Because of those nasty migraines I also tried but had to STOP due to migraine triggering: Xopenex HFA, Advair, Pulmicort 200 mcg, Asmanex 220!
So I was delighted when I finally found no issues with my current Qvar and Atrovent.
Again, thanks for sharing what works for you .. that is what our community is all about! Hugs! Katherine