1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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.

onana | @onana | Nov 6, 2018
In reply to @margiebanks "@windwalker Good morning all. I am looking on Amazon to buy an Acapella green PEP device..." + (show)
@margiebanks

@windwalker Good morning all. I am looking on Amazon to buy an Acapella green PEP device and not sure which one to get. They talk about one you can take apart in 2 sections to clean and another 1 that you don't take apart to clean. I know I've seen this discussed in our threads but i can't seem to use the magnifying icon to look up subjects of interest. That's one reason I tagged you Terri @ windwalker. Another question. Since I'm not feeling comfortable w my doc right now and am thinking of looking for another, what are you guys being told about getting immunization shots for pneumonia and/or the flu? Plz dont suggest I ask my doc!! I've gotten eye,ear exams on my own, a vest and 7% saline and nebulizer on my own!! Thanks and have a great day to all!
Margie

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@margiebanks Hi Margie, I'm sorry you've been working with a doctor who hasn't worked with you on the preventive side (which can make a big difference!). I can only give you my experience. My doctors over the last 20 years of bronchiectasis and MAC have urged me to have the pneumonia vaccine and the annual flu shot.

REPLY
1 reply
heathert | @heathert | Nov 6, 2018
In reply to @windwalker "@america Awe, Rita, I am sorry you got sick again. You were on a good upward..." + (show)
@windwalker

@america Awe, Rita, I am sorry you got sick again. You were on a good upward trend. Children can be our krytonite. You are not alone. I have a lung infection that came on last week. I was doing fine until I started back on the toby. This go around, it gave me a cough and irritated my lungs to the point of green infection setting in. My head hurts non-stop and I have chills. I stopped the toby and I cannot reach my dr because he is out of town. I hope we both get over this crud fast. Hugs - Terri

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oh no @america and @windwalker I hope you are both feeling lots lots better soon. Terri if you dont feel up to posting at the moment dont worry, we will all help each other as much as we can but if you are up to it we love to have you. Take care and I hope your doc gets back real soon. Hugs Heather

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alleycatkate | @alleycatkate | Nov 6, 2018
In reply to @windwalker "@margiebanks the latest recommendation on the acapella was the green one. My dr had recommended it..." + (show)
@windwalker

@margiebanks the latest recommendation on the acapella was the green one. My dr had recommended it to @alleycatkate. You can ask her how she likes it.

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@windwalker @margiebanks ...I am using the acapella that i bought on Amazon that comes in two pieces. The cleaning after usage is arduous. I don't use it every day cause it takes about 45 minutes of different soaks to clean it. But it definitely breaks up the gunk in the lung so I can cough it up. I was pretty surprised the first time I used it as it was that effective. The green one seems to be for people that have good airway clearance and velocity of breath.....At least that is my impression. There is also a blue one that I believe is for those that do not have as good breathing. I totally recommend it as a clearing device. The cleaning is a soak for 5 min in hot soapy water....then rinse with sterile water that has boiled for 5 minutes....then soak in hydrogen peroxide for 30 minutes....then rinse again in sterile water that has boiled for 5 minutes. Yikes!! Ok...Just checked the literature that came with it///The Green is for patients able to maintain an expiratory flow of 15 liters per minute or greater for 3 seconds. The blue is recommended for patients capable of less than 15 liters per minute for 3 seconds. It has an adjustment on it to make it stronger or less vibratory. It says to start at the lowest level. Hope this helps...Margie...you are like me..I want everything I can get my hands on that will improve the condition. (Exception is flu shots that I really question ....I still believe they weaken the immune system....Guess I am just an old hippie at heart...haha) Kate

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1 reply
alleycatkate | @alleycatkate | Nov 6, 2018
In reply to @windwalker "@america Awe, Rita, I am sorry you got sick again. You were on a good upward..." + (show)
@windwalker

@america Awe, Rita, I am sorry you got sick again. You were on a good upward trend. Children can be our krytonite. You are not alone. I have a lung infection that came on last week. I was doing fine until I started back on the toby. This go around, it gave me a cough and irritated my lungs to the point of green infection setting in. My head hurts non-stop and I have chills. I stopped the toby and I cannot reach my dr because he is out of town. I hope we both get over this crud fast. Hugs - Terri

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@windwalker @america ...Sorry that you are both having problems... I hope you get better soon!! Hugs to you both. Kate

REPLY
2 replies
irene5 Irene Estes | @irene5 | Nov 6, 2018
In reply to @alleycatkate "@windwalker @america ...Sorry that you are both having problems... I hope you get better soon!! Hugs..." + (show)
@alleycatkate

@windwalker @america ...Sorry that you are both having problems... I hope you get better soon!! Hugs to you both. Kate

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When I taught school we had an especially tight first grade team. When one of us was having a rough time we got that friend a “poor baby” card. So I am mentally sending one to Terri and @america and anyone else who could use one.

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Margie E | @margiebanks | Nov 6, 2018
In reply to @alleycatkate "@windwalker @margiebanks ...I am using the acapella that i bought on Amazon that comes in two..." + (show)
@alleycatkate

@windwalker @margiebanks ...I am using the acapella that i bought on Amazon that comes in two pieces. The cleaning after usage is arduous. I don't use it every day cause it takes about 45 minutes of different soaks to clean it. But it definitely breaks up the gunk in the lung so I can cough it up. I was pretty surprised the first time I used it as it was that effective. The green one seems to be for people that have good airway clearance and velocity of breath.....At least that is my impression. There is also a blue one that I believe is for those that do not have as good breathing. I totally recommend it as a clearing device. The cleaning is a soak for 5 min in hot soapy water....then rinse with sterile water that has boiled for 5 minutes....then soak in hydrogen peroxide for 30 minutes....then rinse again in sterile water that has boiled for 5 minutes. Yikes!! Ok...Just checked the literature that came with it///The Green is for patients able to maintain an expiratory flow of 15 liters per minute or greater for 3 seconds. The blue is recommended for patients capable of less than 15 liters per minute for 3 seconds. It has an adjustment on it to make it stronger or less vibratory. It says to start at the lowest level. Hope this helps...Margie...you are like me..I want everything I can get my hands on that will improve the condition. (Exception is flu shots that I really question ....I still believe they weaken the immune system....Guess I am just an old hippie at heart...haha) Kate

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@alleycatkate Haha I actually laughed out loud on your last statement! Thanks for your excellent tutorial re cleansing. I knew you had the green but didn't know which one. Did your doc advise this 2 piece Acapella PEP instead of the 1 piece so you could disinfect it better? Just curious.Thanks Kate!

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1 reply
Margie E | @margiebanks | Nov 6, 2018
In reply to @onana "@margiebanks Hi Margie, I'm sorry you've been working with a doctor who hasn't worked with you..." + (show)
@onana

@margiebanks Hi Margie, I'm sorry you've been working with a doctor who hasn't worked with you on the preventive side (which can make a big difference!). I can only give you my experience. My doctors over the last 20 years of bronchiectasis and MAC have urged me to have the pneumonia vaccine and the annual flu shot.

Jump to this post

@onana thanks for your input! Margie

REPLY
Margie E | @margiebanks | Nov 6, 2018
In reply to @windwalker "@america Awe, Rita, I am sorry you got sick again. You were on a good upward..." + (show)
@windwalker

@america Awe, Rita, I am sorry you got sick again. You were on a good upward trend. Children can be our krytonite. You are not alone. I have a lung infection that came on last week. I was doing fine until I started back on the toby. This go around, it gave me a cough and irritated my lungs to the point of green infection setting in. My head hurts non-stop and I have chills. I stopped the toby and I cannot reach my dr because he is out of town. I hope we both get over this crud fast. Hugs - Terri

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@america @windwalker So sorry you both have hit a speed bump. Coming into the change of seasons is bound to wreak havoc on us, it sometimes did before our diagnosis. Guess that's why I was thinking about the flu and pneumonia shots. Saying a prayer for us all, especially you two. And thank you Terri for still checking in when you've been feeling gunky.
Margie

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pattriciaann | @pattriciaann | Nov 7, 2018
In reply to @windwalker "@america Awe, Rita, I am sorry you got sick again. You were on a good upward..." + (show)
@windwalker

@america Awe, Rita, I am sorry you got sick again. You were on a good upward trend. Children can be our krytonite. You are not alone. I have a lung infection that came on last week. I was doing fine until I started back on the toby. This go around, it gave me a cough and irritated my lungs to the point of green infection setting in. My head hurts non-stop and I have chills. I stopped the toby and I cannot reach my dr because he is out of town. I hope we both get over this crud fast. Hugs - Terri

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Hope you both feel better soon!

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Helen | @helem | Nov 7, 2018
In reply to @windwalker "@helem Wow Helen! That took nerve to sit in the car for four hours. Did everyone..." + (show)
@windwalker

@helem Wow Helen! That took nerve to sit in the car for four hours. Did everyone inside think you were being ridiculous? Not that you probably cared what they thought. Back in the day, when I would get together with family at the holidays; they all thought I was a nut-bag for being so cautious to avoid getting sick. Oh well...

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Yes, my whole family thinks I’m a germ freak. My brothers think I am faking, but with therapy and my husband’s support I just don’t care anymore. Only we who have MAC and our close family members who see us cough and suffer really understand it all. I love this group! Thank you to all who support this site!

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