(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@alleycatkate

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

Jump to this post

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.

Liked by heathert, Margie E

REPLY
@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

Jump to this post

@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!

REPLY
@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
@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

Jump to this post

@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

REPLY
@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

Jump to this post

Hope you both feel better soon!

REPLY
@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…

Jump to this post

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!

REPLY

I love how you think!!!!!!! Jane

Liked by Helen

REPLY
@alleycatkate

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

Jump to this post

What about the shingles vaccine? It is very expensive, is it worth the $?

REPLY
@taya

What about the shingles vaccine? It is very expensive, is it worth the $?

Jump to this post

@taya This article by the Centers for Disease Control and Prevention provides some useful information about the shingles vaccine. If you are on Medicare or have health insurance, the cost of vaccine should be covered. https://www.cdc.gov/vaccines/vpd/shingles/public/zostavax/index.html

REPLY
@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

Jump to this post

@margiebanks …..another resource for hearing re which immunizations are suggested might be to call the local health department and ask an RN. They should have access to latest CDC and state recommendations. tdrell

REPLY
@ling123

@taya This article by the Centers for Disease Control and Prevention provides some useful information about the shingles vaccine. If you are on Medicare or have health insurance, the cost of vaccine should be covered. https://www.cdc.gov/vaccines/vpd/shingles/public/zostavax/index.html

Jump to this post

@taya be aware there seems to be a shortage of getting the new shingles vaccine….so it might be awhile….our local Walgreens where we get our shots has a wait list….the required amount is to get two shots ….separated by several months.tdrell

Liked by Margie E

REPLY
@helem

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!

Jump to this post

@helem Helen I totally understand the germ freak thing, others do not understand at all but we have to avoid germs totally. My daughter has a cold and I am very concerned, washing my hands alot and wearing a mask.

REPLY
@irene5

@ling123 Thank you sooo much Ling. FYI our first Chinese child (Yu Chun) is getting married on Saturday. She’s so little (4’7” and her fiancé is a “very tall glass of water” at just under 6 feet. She is a teacher for children with autism, and he is a math teacher at a private school of mostly Chinese international children. Praying that MAC leaves me alone that day!

Jump to this post

Irene, You have helped me in past so I hope now that I am reviewing 4,000 plus e-mails, I came across yours and hoped that you have had a wonderful day with the wedding. Jane Brown

Liked by tdrell

REPLY
@tdrell

@margiebanks …..another resource for hearing re which immunizations are suggested might be to call the local health department and ask an RN. They should have access to latest CDC and state recommendations. tdrell

Jump to this post

@tdrell another great idea, thanks so much!
Margie

Liked by tdrell

REPLY
@macjane

Irene, You have helped me in past so I hope now that I am reviewing 4,000 plus e-mails, I came across yours and hoped that you have had a wonderful day with the wedding. Jane Brown

Jump to this post

@macjane Thank you Jane. That’s nice of you.The wedding was beautiful. My sweet little Yu Chun was gorgeous. I barely made it through the church mass. My husband had to bring me home as I was just too sick and started throwing up. My oldest daughter commented “ life isn’t fair.” She has always been “my person.”What I hate the most is how much my kids and grandbabies worry about me. I hate that more than anything. My daughter has been sending me pics and brought me cake yesterday as they aren’t taking a honeymoon till the summer because of work and school. A friend who is a nurse told my husband I had used every bit of energy to just be there. I am usually ok from the neck up. On Saturday even that was problematic. In spite of this disease and recent setback I know I am truly blessed.

Liked by tdrell, ling123

REPLY
Please login or register to post a reply.