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.

irene5 Irene Estes | @irene5 | Jan 14, 2017
In reply to @katemn "@dianelobosco .. Hello .. may I call you Diane? SO glad you found our Forum! It..." + (show)
@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

REPLY
Katherine, Alumni Mentor | @katemn | Jan 14, 2017
In reply to @katemn "@dianelobosco .. Hello .. may I call you Diane? SO glad you found our Forum! It..." + (show)
@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

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 14, 2017
In reply to @joanney "Hi Kate and others. I have not posted in a long time. I do however follow..." + (show)
@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.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 15, 2017
In reply to @joanney "Hi Kate and others. I have not posted in a long time. I do however follow..." + (show)
@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.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 15, 2017
In reply to @joanney "Hi Kate and others. I have not posted in a long time. I do however follow..." + (show)
@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.

Jump to this post

Hi @joanney. You can go here http://mayocl.in/2cK4PdN to see the conversation of the Carcinoid group where you can meet the people @hopeful33520 has mentioned.

REPLY
pamelasc | @pamelasc1 | Jan 15, 2017
In reply to @katemn "Posted by @pfists, 10 hours ago Do you use water in the diffuser with the oils..." + (show)
@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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Katherine - I just went to order the mini-mate air purifier at amazon, but I find there are several options... can you tell me which one you have? I am ready to go with my cart filling up with Halo, Airborne, and I will add the purifier once I hear from you. All of this SO helpful - thank you! Pam

REPLY
lindam272 | @lindam272 | Jan 15, 2017
In reply to @katemn "Posted by @pfists, 10 hours ago Do you use water in the diffuser with the oils..." + (show)
@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

Jump to this post

Pam, Here is the link for the one I ordered. I think it's the same as the one Katherine got but I'm not sure. I love mine though if that's any help. https://smile.amazon.com/gp/product/B00GXOK86I/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1
I also got the rechargeable batteries that they recommend with it. Linda

REPLY
pamelasc | @pamelasc1 | Jan 15, 2017
In reply to @katemn "Posted by @pfists, 10 hours ago Do you use water in the diffuser with the oils..." + (show)
@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

Jump to this post

thank you so much!  Pam   

REPLY
Katherine, Alumni Mentor | @katemn | Jan 15, 2017

Posted by @dianelobosco, 13 hours ago
I went and saw my pulmonary dr 1/3/2017. He discussed whatvwas fkund and told me that i would get a referall ti an infectuous disease dr. He precribed azithromycin and got me started on it. I just saw the infectious disease dr on 1/11/2017. She took me off of the azithromycin, and said ti wait till we know what antibiotics will work for me. She said it can take upnto 6 weeks. My next appt at this rime in 3/12/2017. Unless she gets the report sooner. I am worried that I will cause damage to my lungs. Ibwant to gwt started and hopefully beat this.

@dianelobosco Diane, I hope you don't mind but I am going to answer you on our wonderfully supportive MAC Forum . I think you will find really GREAT information if you read the past pages of this Forum .. plus meet some lovely people who will walk with you every step of our shared MAC journey.

Diane, do NOT be afraid .. if you do read the past pages of the Forum .. you will find probably the reason your Infectious Disease doctor is waiting for your treatment is BECAUSE she is smart enough to have ordered what is recommended per the below .. so you should ACTUALLY be reassured!

' Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on the antibiotic to tell EXACTLY what your MAC will respond to and WHICH of one of the few drugs that will work that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.
Susceptibility Testing for Mycobacteria
http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805
http://cid.oxfordjournals.org/content/31/5/1209.full
http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf '

Diane, it sounds like you are in good hands with this doctor .. educate yourself to our shared disease through reading the pages of our Forum .. THAT will help greatly in lessening your fears .. you will find SUCH GREAT help .. support .. knowledge .. tips. Just know that we are here for you. After reading .. feel free to ask any questions or whatever. We are here! Sending you a hug in this tough time! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 15, 2017
In reply to @katemn "Dear All! As I watched this I realized I was NOT diaphragmatic breathing .. I was..." + (show)
@katemn

Dear All! As I watched this I realized I was NOT diaphragmatic breathing .. I was shallow upper breathing!  I plan to make a note and place it where I will see it .. THEN do it several x a day! Hope you find it helpful!

Belly Breathing Helps to Strengthen Lungs
https://bronchiectasisnewstoday.com/social-clips/2016/11/16/ten-key-facts-about-bronchiectasis/


3 IN .. 3 HOLD .. 4 BREATHE OUT

2 MIN. SEVERAL X PER DAY

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<br><br><br><br><br><br><br><br><br><br><br><br><br>Hugs,<br>   Katherine<br><br><br><br><br><br>

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