(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

@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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@windwalker, Terri, I was just thinking .. IF their SORRY excuse was your lungs couldn’t handle going under a full anesthesia .. ok .. then if you have read my previous post with my experiences with it .. a GOOD anesthesiologist can take you “down” ENOUGH with what is called “twilight anesthesia” where a GOOD doctor can take you down just as far as you need to go. ASK FOR IT!! I do EVERY SINGLE time .. I was told I could have it except as I recall if an internal organ was involved. Just that doctors PREFER that you be KNOCKED OUT!! Hugs! Katherine

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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Good grief! Sounds like malpractice to me, Terri. Here is a question for you all – I was just getting ready to make some Crystal Light and went to reach for the faucet to fill the container with tap water and stopped myself midstream. Clearly, tap water is no longer something that I want in my system. Can’t use the water from the refrigerator dispenser either. So can I assume that powdered drinks are no longer anything that I can have? Was just diagnosed in December. Linda

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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I talked to the Mayo about it, they said I should have been put in
twighlight. I had a gut feeling that dr was out to be cruel on purpose. I will
never let that happen again.
 

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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Thank you Katherine. No one has ever appreciated what I had been put
through when that happened. During that same procedure, that dr shoved the
tube down into my lungs hard and it jammed into the very bottom of my lung. (all
the while being held down by two males) I thought I’d go through
the ceiling.  That, after feeling like you are being suffocated from
the tube in your throat and cannot get air. My drs at the Mayo said that would
NEVER happen their facility. Thank God, because if I were to ever get that lung
transplant, you have to have a bronch every three weeks at first.
 

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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It was horrid.
 

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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@windwalker, Terri, I love the saying “When we KNOW better .. we DO better!” Terri, that is so true for each and every one of us. You have learned though our community how to be your own best advocate .. have educated yourself on our shared MAC disease .. NOW it would NOT happen to you .. but it is the past .. leave it there .. create happy positive thoughts in the hear and now because today will never come again .. tomorrow is not here yet! I am sending you a HAPPY Hug! Katherine

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@megan123

I think u are right. However everyone is at a different stage of a type of grief, losing health to chronic illness. It is important to also keep that perspective in mind as well as a positive attitude in our life long journey. u are truly amazing people…..

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I have been grieving this chronic illness off and on over the years. I
have been on total disability since 2007 at the age of 49. My new way of looking
at is that I am having my ‘retirement’ years sooner than everybody else. I have
had many good days along the way that I enjoyed travels etc. or just feeling
decent. Many healthy people sometimes aren’t lucky enough to live to see
retirement. Anyway, that is my way of dealing with the cards I have been
dealt.
 

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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@lindam272, Linda I am going to quote one of our Members because I just LOVED it .. I felt SO strongly that it brought SANITY to this subject .. I am going to quote it CONSTANTLY because it makes SO much sense for all of those with MAC! Again, thank you @maryjo2sell .. Mary Jo !Hugs to you Linda and all! Katherine

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo
Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live.

p.s. After I read Mary Jo’s note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT’S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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Hug received! Big squeeze back. Yeah, I am over that past experience. Just
will never forget it!
 

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@megan123

I think u are right. However everyone is at a different stage of a type of grief, losing health to chronic illness. It is important to also keep that perspective in mind as well as a positive attitude in our life long journey. u are truly amazing people…..

Jump to this post

@windwalker, Terri, you are such a cutie! What a great attitude .. choosing to see it as having the “option of early retirement”! I totally agree .. how we “see” our lives is what “looking glass” we choose. I was once told my “problem” was that I “chose” to see a 1/3 full glass as a full glass. My response was that was perhaps my survival tool for a pretty tough life. It has gotten me to a pretty darn successful point in life that I don’t think anyone would have predicted frankly if they knew the whole “unpretty” picture that few know. I’m only telling you because most people only judge from the outside .. never knowing our “story”. Here on our Forum you have been so honest about your story that few people probably know in your life .. I applaud your strength, courage and honesty .. lack of self pity. I am proud to know you. Hugs to you! Katherine

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@megan123

I think u are right. However everyone is at a different stage of a type of grief, losing health to chronic illness. It is important to also keep that perspective in mind as well as a positive attitude in our life long journey. u are truly amazing people…..

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Wow Katherine, I am touched! I feel the same way about you!
 
 

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@katemn

Dear All, I don’t think he would mind so I am going to repeat a post from @steve1948, regarding a good way to cough when it begins to be a really HARD cough .. @steve1948 has COPD so has learned how to handle this well! Hope it helps someone! Hugs! Katherine

His post: I have fractured 5 ribs from my violent coughing. I used a pillow where it hurt and braced myself against something solid to try and keep the pressure from pushing on the ribs. Excruciating pain when I coughed. Now the is important to note, a therapist told me to keep my mouth as wide open as possible when I cough which takes a good portion of the pressure off the torso (rib cage). It can be unsightly and sometimes my sputum projects so I just keep tissues with me and hold it in front of my mouth, NOT against it. I haven’t fractured any more ribs since then. That was invaluable information for me as I cough consistently and sometimes quite violently. Doctor’s told me it can take many months for the ribs to heal and there isn’t any treatment for such an injury. They don’t wrap you anymore because of the chance of pneumonia.

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Steve, see if your dr will put you on tobramycin. it is the ONLY drug that
stopped my constant coughing. I have COPD along with bronchiectasis and MAC. I
know of the hard coughing you are experiencing. I have probably pulled every
muscle in my body and lost bladder control from the pressure of such
cough. These things have all cleared up and I feel like a new person.
I rarely cough any more. I have been touting the benefits of tobramycin on
this site; but I want you all to know I am specifically aiming it at people who
cough constantly. The damage that coughing can do is almost as bad as the
disease. This med is insanely expensive, but there is charitable help out there
to help pay for it. One member on this site said she paid $1,000 in co-pay(s).
She said it did the trick and was worth every penny.
 

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@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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Hi Mary Jo, so glad you had a good experience at the Mayo. I too do the
nebulized saline and albuterol. I feel like the saline has been helping. I would
think it would cause an inhospitable environment for most things that like to
infect us as well as help us clear the lungs.
 

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@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
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@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

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Gosh Jen, I feel for you! Pray you feel better soon. -Hugs to you! Terri
M.
 

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Dear All, just found a really neat website that I’d like to share .. check it out and maybe incorporate some of it into your life? I really liked it! Hugs to all! Katherine

New Year’s Resolution Challenge: Cultivate Mindfulness .. be sure to click one the 4 items in blue
We challenged you to cultivate mindfulness through:
Morning Gratitude
Yoga
Meditation
Self-Compassion
https://connect.mayoclinic.org/discussion/live-qa-new-years-resolution-challenge-cultivate-mindfulness/

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