(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!

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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:

  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

Hi Kate and others. I have not posted in a long time. I do however follow all the posts daily and have learned so much. I have had Bronchiectasis and MAC for about 5 years now, but still have not been on antibiotics. I had a Left lower lobectomy in 2002 for a Carcinoid tumour in my lung, and then became ill in 2007, with CT showing multiple tree in bud clusters in lungs, and one slightly bigger nodule. My Oncologist without having done a biopsy of nodule because of it’s small size and scar tissue, has thought it was the carcinoid back again, so has been treating me with monthly injections of Sandostatin, (known to slow growth and minimize symptoms) I also have had terrible arthritis through all this, I have had 2 shoulder replacements and most recently a knee replacement. I am 66 yrs old and still have such a zest for life. I have always been very athletic, loving biking, skiing, Kayaking, so all of these setbacks have dragged me down at times. This summer I decided I would tape up my arthritic knees and get back on my bike, to get my lungs in shape for the surgery. I even went biking the day before surgery, got the knee really sore, but lungs felt great, better than they had in years, I even managed up quite a steep hill.
Now I am almost 3 months into my knee recovery, it’s really snowy and cold outside, at times too cold for my reactive airways, but I cannot wait, till the snow melts and I can get back on the bike, and get that fresh air moving in and out of these lungs. My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year, my sputums have been positive for maic, when I have been able to get a good specimen up. Other than that, I will carry on with Ventolin puffer 3x a day, Alvesco puffer in evening, Airobika, chest physio, and excercise and hope I can stay stable for as long as possible without doing the big 3.
Thank you so much all of you for all your input, my heart goes out to all of you incredible strong people who are going through so much, with coping and living with these diseases.
Hugs to all from Canada.

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@katemn

Posted by @pfists, 10 hours ago
Do you use water in the diffuser with the oils
I heard that tap water wasn’t safe to put in humidifier/diffuse so wondered if you need to use water with the oil.
I use thieves oil also on bottoms of my feet.
Thanks
Shari

@pfists, Shari, personally I would use distilled water. Research has not ruled out mycobacterium NOT being breathed into our lungs from water .. like from hot tubs. Best to be safe! Hope this helps. Hugs! Katherine

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I will, of course!  But I do not see him until February – I will make a note to get back to all of you and if I find out about vapor masks, will also share what I find out.  Pam   

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Thank you Katherine, your example is one that could have really impacted your family and i am so glad to be talking here for these reasons and more

. Im trying to help others to nake sure they get a chest xray before staeting new lifechanging meds. My current drs didnt believe it wasnt a requirement before Humira was stsrted. Due dilegence is better tham putting ourselves in worse situatuons. Im sure your husband appreciates it. Thank you also for saying to stick around. I will and happy so far for all yours and others support.
Julie

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@judyem .. Judy, I can only speak from personal experience .. but had been working out for 30+ years on a Nordic Track .. was in great shape UNTIL I was coughing so badly that my lower back started hurting horribly! I had NEVER had lower back trouble in my life! But the coughing really affected me. In time I learned that I DID have some lower spine issues ‘DISK DISEASE (L1-2 TO L5-S1)’ .. actually the aging process I think. But in going to the Back Clinic I mentioned in another post .. I learned to STRENGHEN all the muscles AROUND the spine .. SUPPORT the spine. Now if I do my back exercises .. I have ZERO back pain. Hope this helps. Hugs! Katherine

Liked by tdrell

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@katemn

Calling 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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@dianelobosco – I’ve been on the forum for about 3 weeks now and it’s been amazing the amount of knowledge I’ve picked up from everyone and the support of all. I now have a list of questions for my doctor when I go back next week for my first follow up since being diagnosed with MAC. I’ve also learned some healthy tips along the way and lots of resources for more information. Knowledge is power so the more you learn, the better able you will be to take control so the disease doesn’t control you. You’ve got this! And we’ve got your back!! Linda

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888, Julie, thank you for your kind words! Funny, but I tease my husband that I am his ‘Unpaid Medical Secretary’ .. to which he always responds that I am ‘well paid’! We MUST advocate not only for ourselves .. but for family members or friends!

Yes, INDEED we CAN help others by reminding/teaching them to do their own ‘due diligence’ and being their own best Advocate! If there is one thing we are learning from each other .. it is those two things! .. AND if we can help others as we are being helped .. surely THAT is ‘playing it forward’! How better to thank each other than helping yet another person .. good for you! Hugs to you! Katherine

Liked by jewel8888

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Thank you Katherine. I will start adding this to my routine. I too have been exercising for years.. but I have to strengthen those muscles around my spine. It is just one more thing to add to my daily routine.. But it has got to be done.

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@judyem

Thank you Katherine. I will start adding this to my routine. I too have been exercising for years.. but I have to strengthen those muscles around my spine. It is just one more thing to add to my daily routine.. But it has got to be done.

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@judyem, Good for you Judy! It is easy just to google “best lower back exercises” .. print off what you think are the best for you .. then go to town! Something is better than nothing! Hugs! Katherine

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@katemn

@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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I am so blessed to have found thos site and appreciate you reaching out to me.

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@katemn

@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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Diane, WE ARE good .. but this is a public place .. I HOPE Colleen quickly sees this and DELETES your personal phone number .. NEVER share personal info on a place where the public can access .. some BAD people out there also! Wish I knew how to do it. I’ve emailed Colleen but she deserves a week end off! Let’s just hope no “trolls” are lurking on our site! Be careful all! No personal home addresses, last names , phone numbers. WE are safe and good people .. but unfortunately all the world is NOT like we are. Be safe .. be happy! Katherine

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@katemn

@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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Hello @dianelobosco Diane, we are in luck! Colleen got my email and quickly removed your personal info .. we ARE here for you on our Forum .. you just post any questions you may have .. we are here! Hugs to you! Katherine

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@katemn

@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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Good advice. I know many times I have wanted to talk to a real,person Katherine. Just because we might be good and trusting people doesn’t mean everybody else is – sad, but true. This forum is not only a great place to learn and share, but also a great place to not feel quite so all alone on a very difficult, life altering journey. We all need somebody to “talk” to sometime. Before my son suggested I join this forum I never knew anybody that had MAC except me. I never had even heard of it till being diagnosed with it. Apparently, there are a lot of us. That is comforting and scary all at the same time. Irene

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@katemn

@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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@irene5, I SO agree Irene .. you are very lucky to have such a good son that he sought out a Forum for you .. support .. a good guy! You are indeed blessed! I like you had not a clue what it was all about when I was diagnosed in 2007 .. am still very aware that rarely do people even RECOGNIZE the disease when I name it! I am so used to it that I usually just say I have a ‘lung condition’! So be it ..it could be a LOT worse! I just try to count my ‘gratitudes’ and be happy with what I have .. NOT worry or put energy into what I DON’T have .. a total waste! You have a son who cares about you .. that is a BIG gratitude! Hugs to you! Katherine

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@joanney

Hi Kate and others. I have not posted in a long time. I do however follow all the posts daily and have learned so much. I have had Bronchiectasis and MAC for about 5 years now, but still have not been on antibiotics. I had a Left lower lobectomy in 2002 for a Carcinoid tumour in my lung, and then became ill in 2007, with CT showing multiple tree in bud clusters in lungs, and one slightly bigger nodule. My Oncologist without having done a biopsy of nodule because of it’s small size and scar tissue, has thought it was the carcinoid back again, so has been treating me with monthly injections of Sandostatin, (known to slow growth and minimize symptoms) I also have had terrible arthritis through all this, I have had 2 shoulder replacements and most recently a knee replacement. I am 66 yrs old and still have such a zest for life. I have always been very athletic, loving biking, skiing, Kayaking, so all of these setbacks have dragged me down at times. This summer I decided I would tape up my arthritic knees and get back on my bike, to get my lungs in shape for the surgery. I even went biking the day before surgery, got the knee really sore, but lungs felt great, better than they had in years, I even managed up quite a steep hill.
Now I am almost 3 months into my knee recovery, it’s really snowy and cold outside, at times too cold for my reactive airways, but I cannot wait, till the snow melts and I can get back on the bike, and get that fresh air moving in and out of these lungs. My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year, my sputums have been positive for maic, when I have been able to get a good specimen up. Other than that, I will carry on with Ventolin puffer 3x a day, Alvesco puffer in evening, Airobika, chest physio, and excercise and hope I can stay stable for as long as possible without doing the big 3.
Thank you so much all of you for all your input, my heart goes out to all of you incredible strong people who are going through so much, with coping and living with these diseases.
Hugs to all from Canada.

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Thank you for coming back and giving the Connect members an update @joanney. I moved your post in to the large discussion on MAC so that all of the great members in this group could see your post.

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@joanney

Hi Kate and others. I have not posted in a long time. I do however follow all the posts daily and have learned so much. I have had Bronchiectasis and MAC for about 5 years now, but still have not been on antibiotics. I had a Left lower lobectomy in 2002 for a Carcinoid tumour in my lung, and then became ill in 2007, with CT showing multiple tree in bud clusters in lungs, and one slightly bigger nodule. My Oncologist without having done a biopsy of nodule because of it’s small size and scar tissue, has thought it was the carcinoid back again, so has been treating me with monthly injections of Sandostatin, (known to slow growth and minimize symptoms) I also have had terrible arthritis through all this, I have had 2 shoulder replacements and most recently a knee replacement. I am 66 yrs old and still have such a zest for life. I have always been very athletic, loving biking, skiing, Kayaking, so all of these setbacks have dragged me down at times. This summer I decided I would tape up my arthritic knees and get back on my bike, to get my lungs in shape for the surgery. I even went biking the day before surgery, got the knee really sore, but lungs felt great, better than they had in years, I even managed up quite a steep hill.
Now I am almost 3 months into my knee recovery, it’s really snowy and cold outside, at times too cold for my reactive airways, but I cannot wait, till the snow melts and I can get back on the bike, and get that fresh air moving in and out of these lungs. My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year, my sputums have been positive for maic, when I have been able to get a good specimen up. Other than that, I will carry on with Ventolin puffer 3x a day, Alvesco puffer in evening, Airobika, chest physio, and excercise and hope I can stay stable for as long as possible without doing the big 3.
Thank you so much all of you for all your input, my heart goes out to all of you incredible strong people who are going through so much, with coping and living with these diseases.
Hugs to all from Canada.

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Hello @joanney I read your post in the MAC/MAI group and noticed that you have a history of carcinoid cancer in your lung. We have a group (smaller than the MAC/MAI group) who are also dealing with carcinoid cancer. Very few of us, however, are dealing with carcinoids in the lungs. Let me introduce you to some members of our carcinoid group. @joannem
@joanney @amyh2439 @lucci50 @derekd @gaylejean @tresjur We would like to have you share your experiences with us. We learn so much from others! Best wishes as you navigate your health issues.

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