(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

@katemn

p.s. For those on this Forum who have known me for a while .. just saw Dr. Aksamit last week .. AND I am STILL in remission .. AND instead of quarterly or bi annual visits .. I can NOW go to one a year!! YEAH!!!!

Of course with the admonishment that if I have increased symptoms etc I am to contact him .. BUT I intend to continue my NordicTrack and yoga .. be happy and live my life!! Again .. YEAH!!!

Jump to this post

There is a site called Inspire it is thru . They have many topics but many
Mycobacterium topics and followers
[image: American Lung Association]
Living with Lung Disease
Lung
infections and diseases support group and discussion community

– AMERICAN LUNG ASSOCIATION
– HELPLIN

REPLY
@katemn

p.s. For those on this Forum who have known me for a while .. just saw Dr. Aksamit last week .. AND I am STILL in remission .. AND instead of quarterly or bi annual visits .. I can NOW go to one a year!! YEAH!!!!

Of course with the admonishment that if I have increased symptoms etc I am to contact him .. BUT I intend to continue my NordicTrack and yoga .. be happy and live my life!! Again .. YEAH!!!

Jump to this post

Hello Dixer, you are SO right! It is helpful to explore any/all credible
resources to help us understand our disease .. and find support on our
journey. I also follow the American Lung Forum. Below is the link in case
you might find it helpful. It is important to only seek out credible
resources .. too much misinformation or outdated information out there ..
be careful what you read!

Take care on this journey .. but know we are all on it together!

https://www.inspire.com/groups/american-lung-association-lung-disease/discussion/alternate-therapies-for-mycobacterium-avium/?page=last#replies

Liked by ginak

REPLY
@ehliny

Thank you!

Jump to this post

Hi Ehliny, I saw your post earlier about the twice-daily saline solution treatments to induce coughing. Other than going to the Army clinic to inhale the saline solution to produce sputum cultures for them (because they thought I was perhaps cheating on my sputum tests or something). I am happy to say that I do not have to do the nebulizer on any type of regular basis. But it was a bittersweet victory of demonstrating my proof to the Army docs that it was my own true sputum producing the MAC, I was also coughing up blood because the saline was irritating my airways. This episode was 08-11FEB16, and on 25FEB – the first culture had already come back POS for MAC.

My pulmonary doctor at UNC had suggested a flutter device to help break up the congestion in my lungs. I still find that exercise (even walking) works BEST.

To your next comment about treatment – MAC is essentially an emerging disease in that the symptoms and total body effect are far-reaching and may at first be subtle or severe. Mycobacteria has no place in the human body – this species is among that which causes tuberculosis and leprosy. Although M. avium is different, a relative to these more aggressive species of mycobacterium, it is just as dangerous it its own right. If you have tested positive for MAC, and your providers are hesitant (or ignorant about mycobacteria avium colonizing within your body) on developing a treatment plan to eradicate the fungus-like infection in your lungs – other than just trying to have you cough it up – you need antibiotics.

I have been in contact with my Congressman for nearly eight months now to get back on the antibiotics that my Army doctors stopped after only five months of treatment (with only 2 antibiotics). All sources say three to five antibiotics for 12-18 months of treatment with life-long follow-ups. There is a bounty of information out there about MAC. The National Institutes of Health is a good source. My doctor at UNC said some of the patients that come into his office for MAC treatment do not partake in the antibiotic treatment, that some sub-species of MAC have become too resilient to antibiotic treatment and the infection cannot be stopped – but managed with exercise, diet, productive coughing, etc. When the symptoms such as fevers, night sweats, or blood-work anomalies are introduced or in occurrence with the infection your treatment must be re-evaluated.

I hope this helps.
Best wishes,
Yours truly,
Melissa

REPLY
@ehliny

Thank you!

Jump to this post

All good information. I have had MAC for about two years now, but so far
not a great lot of distress with it. As I have rather severe reflux
problems it is hard to tell what is cousing the most distress. But so far
nothing that i can’t live with and have quite a good life for an 86 year
old. I just got back from a 3 block walk at 5 PM. Am wintering in Arizona.

REPLY

Great help – thanks!

REPLY

I also have severe reflux disease and often cannot tell if my coughing (fairly violent) is the MAI or the reflux.

REPLY

johnik and ehliny, I also have GERDS, reflux disease, I take the medication Aciphex which for me seems to control my symptoms. I have tried others but this is the only one that has helps.

Also what has helped a LOT has been elevating the head of my bed 5 inches. It can be done just by getting
dorm bed risers (http://www.amazon.com/Black-Risers-4-Pack-Stronger-Support/dp/B0010KXDUI )

Basis information:
If you’ve been waking up at night with heartburn, here are tips to help you sleep better:

1.Raise the head of the bed by 4 to 6 inches, so you can sleep with your head and chest elevated. …
2.Eat meals two to three hours before bed, since this will reduce the risk of nighttime heartburn.

More information at:
http://www.webmd.com/heartburn-gerd/features/tips-for-sleep-without-heartburn

Good luck on our shared journey!

REPLY
@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

Jump to this post

Hi I was just wondering if you are still Mac free, and what antibiotics & amounts worked for you? Do you now take any precautions to avoid getting reinfected like boiling drinking water?

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

Hi thanks for all your posts, does the medication stop the mac from getting worse at all and stop bronchiectasis from worsening or forming? or is it gradually getting worse? Im in New Zealand and my doc is going to a conference on MAC in Seattle in May so hope they have some new info.

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

Hello heathert,
From my experience the antibiotics DID stop the MAC from getting worse! It
took time .. but I finally had 12 months of negative cultures after 30
months of 4 antibiotics. Keep in mind I also had TWO mycobacterium’s ..
not just one. Also remember MAC can only be “stabilized” .. NOT cured. In
terms of the Bronchiectasis .. I do not have that answer .. have never
asked the Doctor. If you google it you will find a great deal of
education. Just one source is:
http://www.familydoctor.co.nz/categories/chest-problems/bronchiectasis-a-patients-guide/
Personally I have found a lot of my coughing stems from various causes:
GERDS .. sinus issues causing post nasal dripping .. as well as the
Bronchiectasis. All these things I think resulted in a diagnosis of:
Reactive Airway Disease. I absolutely did not understand this .. positive
my coughing was caused by an allergy to dust mites .. UNTIL an allergist
tested me .. nope .. not allergic .. BUT told me this:

If you get hit on the head .. you are NOT allergic to being hit on the head
.. but you DO REACT to being hit on the head! SO .. Reactive Airway
Disease .. I REACT to MANY things .. and cough cough COUGH!!

I think you will find that many internists/doctors are not well versed in
MAC. GOOGLE/READ all you can until you can educate YOURSELF .. you are
your OWN best advocate!! Good luck on our shared journey!
* Katherine*

Liked by heathert

REPLY

Hi everyone ,thank you all so much for your posts, very helpfull, and great to hear some people are in remission.

REPLY

Heather,
In terms of boiling water to kill mycobacterium .. I googled “CAN MICOBACTERIUM BE KILLED BY BOILING WATER FOR 10 MINUTES ” and really could not find an answer. I will contact someone wiser than I to see if I can find an answer for you. I just know that I drink the city water of Minneapolis, Minnesota, USA.

Sorry for the info on MAC not being curable .. no .. with 12 negative cultures you are considered “Stable” but unfortunately it can come back. That is why it is SO important to do everything you can do to exercise and keep your lungs as healthy as you can!

Best of luck to you .. just keep plugging along .. we are all on the same journey!
Katherine

REPLY
@heathert

Hi everyone ,thank you all so much for your posts, very helpfull, and great to hear some people are in remission.

Jump to this post

.. I apologize for answering a message meant for Paula! You’re correct ..
messages are forwarded to me. If it said to Paula .. I just didn’t notice
it .. SORRY!
* Katherine*

REPLY

Just wanted to let those of you wondering about the privacy of this Forum .. I received this answer:
The Lung Health group on Connect is not private. Like the American Lung Inspire Forum, messages can be read publicly. However, you have to be a registered member to post messages.

Messages are definitely NOT automatically or publicly shared on your Facebook. You can choose to share them on your Facebook page if you wish, but you have to make an extra click on the share buttons to do that. The Share buttons are found on the first page of the thread. Note the Facebook symbol on that page.

REPLY

Thank you so much for your help Katherine, I have suffered hayfever allergies all my life,but as soon as I read “reactive airway disease” it rung many bells with me, I cough, get tight chested and cant expell all my breath out, when the temperature droops by 10 deg, (esp around 2am) and in cold air when walking or exercising, and when when emotionally stressed, and if I suddenly run, I am going to my doc to discuss this, I have had this all my life, thank you so much! for the coughing early morn in bed I breathe under the sheet. I also suffered alot from nasal drip and found cutting back on dairy has helped alot. It would be interesting to see how many others on this forum suffer from these.

I thought about the boiling water situation, and realised that it is creating steam which is not good for me so may get a pressure cooker and take it out side to let steam out but bacteria should be dead by then anyway, I read about it under taking precautions to prevent reinfection with MAC/MI, it was in the National Lung Institue pages http://rarediseases.org/rare-diseases/nontuberculous-mycobacterial-lung-disease/ then investigated further they say at 55 deg c it takes 20 mins to kill them I think. As we are prone to getting this infection I will try to avoid it where I can(if I can clear it in the first place), they also say to bathe instead of showering, so I do with the window open, and wear a mask when gardening and bathing in warm water.

REPLY
Please login or register to post a reply.