(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

@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

Jump to this post

Paula and Melissa, I would tell you that it depends on the doctor re:
exercise. My beloved Dr. Aksamit at Mayo Clinic, Rochester MN asks me
EVERY visit about my level of exercise .. and encourages me because of the
beneficial affects on my lungs and overall health. This even when
I was not/felt I could not exercise due to the back pain resulting from the
horrific coughing. He just kept quietly encouraging me to exercise.

So I began again in May .. doing really well on my Nordic Track and yoga ..
but hurt my back again with a DUMB move with a Kettle Ball exercise! Now
after steroids, physical therapy etc I am hoping to get back to my exercise
program .. encouraged by my Pulmonologist!

*Interesting about the Mayo MAC/MAI study .. I have not been invited to be
a part of?! Oh well.*

REPLY
@katemn

Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.

Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can’t write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.

Good luck! Please let us know how it goes .. our thoughts will be with you!

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Thank you Ladies. My appointment with the UNC Pulmonary Clinic went very well. The doctors and technicians were awesome, insightful and offered some insight into my condition that was being overlooked. I am immediately being tested on their end from my sputum (non induced) for AFB and my spirometry / pulmonary function tests show a significant decline compared to tests that were conducted in AUG of 2015. With the production of sputum (which is most likely still AFB positive), along with the CT and X-ray imaging they reviewed showing progression of scarring/nodules, etc. from 2011 – 2014 (the disc did not have any 2015 images on it) I was once again officially re-diagnosed with a MAC infection. The problem now lies in the potential that the MAC is now resistant to the antibiotics. So…. A test is going to be conducted on the sputum to measure its resistance to the antibiotics. I follow-up in May to most likely resume antibiotic treatment. In the meantime, I will continue with exercise and begin the use of a ‘flutter device’ to assist in getting the phlegm out of my lungs.

Next week I see the ID doctor at UNC and I will take more sputum to that appointment for analysis >_< More to follow. Hope everyone is breathing well and ready for Spring! Best wishes to all. Melissa

REPLY
@katemn

Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.

Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can’t write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.

Good luck! Please let us know how it goes .. our thoughts will be with you!

Jump to this post

Melissa, I am SOOO happy for you .. in terms of finally getting some
answers! At least for me .. just understanding my situation and getting a
proper diagnosis gave me so much more serenity. Really glad they are
checking for antibiotic resistance .. I forgot that piece. Mayo did that
for me to make sure the 5 antibiotics they prescribed for me were the
correct ones for my particular mycobacterium .. AND that I was not
resistant to them. I am so glad they are being pro active!

Just keep up the good work and you WILL come out on the other side! It
took me 30 months on the antibiotics but I am negative for now .. and
remain positive! Good luck and keep us posted!
* Katherine*

REPLY
@katemn

Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.

Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can’t write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.

Good luck! Please let us know how it goes .. our thoughts will be with you!

Jump to this post

@melissa23 This is great news. The first few sentences of your message are almost like music to my ears. It sounds like you were listened to and given time to talk, listen and get checked thoroughly. And you have an action plan! May the Spring bring easier breathing.

REPLY

Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you’ve seen have you trying to cough up sputum ‘on demand’! Very difficult to do, unless you are in the heavy throws of MAC.

Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I’d like to see these docs get in the practice of telling patients about several exercises they can do — not the aerobics type that aren’t so recommended when you get ‘older’, but exercises that are sustaining for a lifetime — Pilates, Yoga, etc. In past years, I’d cough and cough when I did Pilates and I’ve just told my instructor it’s good that I’m coughing, means I’m opening up my lungs. This winter I have hardly coughed . . . wonder if it’s because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren’t used to this type of exercise.

Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I’m in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!

REPLY
@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

Jump to this post

Thank you Paula for your response!
I had just purchased a Palates video and now I am even more determined to be disciplined about using it! Plus I do have the Aerobika and an Elyptical exerciser. Also I am convinced to go beyond my county knowing the importance of finding a better, more informed Doctor ( esp. after hearing what Melissa has been through). I guess I was just concerned about what to do in an emergency/ urgent situation But shy of relocating, I suppose you have to hope for the best and get to the specialist as soon as possible. I am actually thinking That it wouldn’t be a bad idea to have my MAC Dr.’s name & contact info (also NJH contact info) on a medical bracelet or anklet. ??
It is VERY good news to hear you are feeling better. I’ve been blindsided with this diagnosis and even more so with the prognosis of MAC Just trying to wrap my head around it and do any and everything to beat it. Sure appreciate your encouraging words
To All: Prayers for strength and courage and blessings to all who are in this struggle

REPLY
@Paula_MAC2007

Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you’ve seen have you trying to cough up sputum ‘on demand’! Very difficult to do, unless you are in the heavy throws of MAC.

Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I’d like to see these docs get in the practice of telling patients about several exercises they can do — not the aerobics type that aren’t so recommended when you get ‘older’, but exercises that are sustaining for a lifetime — Pilates, Yoga, etc. In past years, I’d cough and cough when I did Pilates and I’ve just told my instructor it’s good that I’m coughing, means I’m opening up my lungs. This winter I have hardly coughed . . . wonder if it’s because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren’t used to this type of exercise.

Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I’m in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!

Jump to this post

Hi Paula,
You are so right .. that darn Kettle Ball really irritated a nerve in my back. But the result is that I now better understand why I had such bad back pain with all my coughing. I really thought it was damage to my SI joint.

Last week I went to an Ortho Doctor .. he took an Xray .. put me on a “Medrol” steroid 6 day pack to calm down the inflammation .. it GREATLY relieved the pain. Then today the 1st day of physical therapy .. she was really great! Gave me 2 pages of lower back exercises to do daily. Turns out it is NOT SI .. it is the usual L4-L5 lower back issues. Basically part of the aging process I think!

BUT by strengthening the muscles around the spine it will better support the spine and I fully expect the pain to improve. By wearing my SI belt my pain level was VERY bearable prior to my experience with the Kettle Ball. She also encouraged me to get back to my exercise routine of Nordic Track and yoga in addition to these lower back exercises

Paula, I agree with you .. I am sure I have been coughing more because I have not been exercising due to the back pain .. I am back to joining you with the exercise!. Let’s forge forward toward healthy living!

REPLY

Lainey,
Good for you in the exercise area .. keep it up!

In terms of a medical emergency. I found the best info on MAI/MAC and
put it into a WORD Document. Then included it in the below memory stick to educate any health professional who was unaware of just what MAI/MAC was.

I was given the below idea years ago by a nurse. Because we travel a lot, I
did the below for me (and my husband).

PREPARATION:
1.Gather all medical information and type into a Word Document. Separate the medical information by HEADINGS:

a. BASIS ID INFO INCLUDING INSURANCE INFO/EMERGENCY CONTACT
INFO/PRIMARY DOCTOR
b. OUR INFO including phone numbers, home address
c. BLOOD TYPE
d. MEDICATIONS CURRENTLY TAKING: name/dosage/when taken/what taken for
e. OVER THE COUNTER TAKEN: (name and dosage)
f. OK: WORKS FOR ME: (listing various drugs that work for me (name and dosage) ie Antibiotic/Anti inflammatory/Pain Medication/Pulmonary
g. ALLERGIES/SIDE AFFECTS TO DRUGS (name and dosage)
h. HEALTH ISSUES: name of issue and date diagnosed
i. SURGERIES: name of surgery and date of surgery
j. VACCINATIONS/IMMUNIZATIONS : type and date done
k. LAST DERMATOLOGY FULL BODY SKIN EXAM:
l. LAST COLONOCOPY:
m. LAST EYE EXAM: 03/15
n. LAST DEXA:
o. DOCTORS: name/(fax # indicated) (various doctors I see)

2. THEN THE MOST IMPORTANT THING THE NURSE TOLD ME! You transfer the information from your Word Document to a memory stick and CARRY it in your purse!! I thought that was just brilliant!!

I have since that time updated that Word Document with each prescription change or medical change, printed it out and taken it to EVERY doctor appointment. Every hospital situation.

They are blown away! I tell them they can keep the print out and they just LOVE having all that up to date data! The truth is once you get it on your computer it is a piece of cake to just update it as you go.

I hope the above makes sense to you. If not, please feel free to question me! I know it has really helped me immensely both in traveling and in running my husband to the Emergency Room that is the first thing I grab — my Word Document and my Memory Stick that has even our Living Wills on it!

REPLY
@Paula_MAC2007

Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you’ve seen have you trying to cough up sputum ‘on demand’! Very difficult to do, unless you are in the heavy throws of MAC.

Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I’d like to see these docs get in the practice of telling patients about several exercises they can do — not the aerobics type that aren’t so recommended when you get ‘older’, but exercises that are sustaining for a lifetime — Pilates, Yoga, etc. In past years, I’d cough and cough when I did Pilates and I’ve just told my instructor it’s good that I’m coughing, means I’m opening up my lungs. This winter I have hardly coughed . . . wonder if it’s because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren’t used to this type of exercise.

Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I’m in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!

Jump to this post

Hi Paula,
Yes I agree. What makes it worse is that they would not accept my sputum that I cough up on my own first thing in the morning. When I went in yesterday to the Army hospital to produce their third requested sample, I brought a sputum sample with me coughed up just an hour before (in a sterile cup given to me from UNC) that they would not accept. So I endured another twenty minutes of deep breathing of the saline solution and coughing in the watchful eyes of the technician… I was terrified to see that I began coughing up bright red patches of bloody sputum….

My lungs were burning and my ribs have been hurting so bad from the forced coughing at WAMC (in addition to my regular coughing) plus the two breathing tests. I told the Army technician that I do not trust them for making me go through the forced/induced sputum tests three days in a row and not accepting my first morning sputum cultures for sampling (she just raised an eyebrow).

One more thing, in review of my UNC visit notes, the doctored changed by diagnosis from MAC to Mycobacterium avium-intracellulare infection… A different species of M. avium… I will gather more clarity on this as time passes.

May the Force be with YOU all.

Melissa

REPLY

Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I’ve only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it’s other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program — those are the technicians who analyze our specimens — did her senior research on MAC and its closely related ‘offshoots’ (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.

Hello Katemn,
Glad you’re learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important — for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!

Paula

REPLY
@Paula_MAC2007

Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I’ve only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it’s other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program — those are the technicians who analyze our specimens — did her senior research on MAC and its closely related ‘offshoots’ (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.

Hello Katemn,
Glad you’re learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important — for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!

Paula

Jump to this post

Am I the only person whose Pulmonologist has me using a nebulizer with saline solution twice a day? He says it’s important to keep the lungs clean. I have recently discovered that, when I exercise more than 5 minutes, my blood oxygen plummets. I have a diagnosis of MAC (from a surgical lung biopsy) and bronchiectasis.
Thanks!

REPLY
@Paula_MAC2007

Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I’ve only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it’s other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program — those are the technicians who analyze our specimens — did her senior research on MAC and its closely related ‘offshoots’ (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.

Hello Katemn,
Glad you’re learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important — for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!

Paula

Jump to this post

Paula, really interesting info on the difficulty of differentiating MAC .. I again feel blessed to be going to Mayo Clinic where this is not an issue. But to be fair .. my Minneapolis Pulmonologist sent my sputum culture just to I think a “regular” lab .. came back as MAI/MAC .. then sent me to an Infectious Disease Specialist .. that lead me to finding a MAI/MAC specialist which was Dr. Aksamit at Mayo Clinic. So perhaps being in a larger city helps in getting to a lab that will diagnose MAC first thing?

REPLY
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