(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

Hello,
I want to give the folks who are newly diagnosed with MAC some hope. I was diagnosed in 1999 when I was only 40 years old. I’m a white, slender female with NO underlying lung conditions. Why I contracted MAC is a mystery. Went on the typical drug regimen and tolerated it fairly well. Had my lower left lobe removed at National Jewish in 2000 and continued on the drug regimen for quite a while, but it never got rid of the MAC completely (sadly one of the drugs did affect my hearing). Since then, I’ve raised two boys, continued to work full time and even got my master’s degree. For the last four years or so, I take 1000mg of Augmentin daily. Every other day I do a breathing treatment of albuterol and budesonide. I think this has been key. It gets the junk out of the lungs, allows me to breathe better and keeps the infection at bay. I know so many of you suffer horribly with this disease. I’m one of the lucky ones, and I only hope that there are some breakthroughs in research. See this article about a new antibiotic scientists are working on: http://www.telegraph.co.uk/science/2016/03/14/first-new-antibiotic-in-30-years-discovered-in-major-breakthroug/

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Thank you so much Katherine, I’m also 5’2 same weight as you are and try to think positive about this disease. Thanks to all of you who take time to share your experience. God Bless you all.

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@stargirl

Hello,
I want to give the folks who are newly diagnosed with MAC some hope. I was diagnosed in 1999 when I was only 40 years old. I’m a white, slender female with NO underlying lung conditions. Why I contracted MAC is a mystery. Went on the typical drug regimen and tolerated it fairly well. Had my lower left lobe removed at National Jewish in 2000 and continued on the drug regimen for quite a while, but it never got rid of the MAC completely (sadly one of the drugs did affect my hearing). Since then, I’ve raised two boys, continued to work full time and even got my master’s degree. For the last four years or so, I take 1000mg of Augmentin daily. Every other day I do a breathing treatment of albuterol and budesonide. I think this has been key. It gets the junk out of the lungs, allows me to breathe better and keeps the infection at bay. I know so many of you suffer horribly with this disease. I’m one of the lucky ones, and I only hope that there are some breakthroughs in research. See this article about a new antibiotic scientists are working on: http://www.telegraph.co.uk/science/2016/03/14/first-new-antibiotic-in-30-years-discovered-in-major-breakthroug/

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Hello Stargirl, thank you SO much for your inspiring post! You give so much hope to many new people struggling with the news of this new disease! I can’t thank you enough for sharing! It gives hope for those now struggling! I also came out on the “other side” and have a lovely life of travel (retired) and fun! I also was a slender white female who had never smoked when diagnosed .. gave up trying to figure out WHY .. really doesn’t matter. Put my energy into what I could control .. my treatment .. and let go of what I COULDN’T control .. the why’s!

I have emailed Dr. Aksamit on whether he thinks the new antibiotic might be an option for our MAC treatment .. I’m crossing my fingers! Those darn mycobacterium have that odd hard shell that is difficult to penetrate .. be great if this new one might be a potential for the future! Thank you for sharing .. that is why we are all here to help each other on our shared journey! Very best to you! Katherine

Liked by stargirl

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Hello Janet, I so agree with you. That is why I emailed Dr. Aksamit. I feel such a responsibility for accuracy on our Forum .. I know we all are depending on each other not only for support .. but also for good information.

I was just delighted at the speed with which beloved Dr. Aksamit responded to me! I want to quote him accurately so I am going to copy and paste his reply so you all can come to your own conclusions. We each must do our own “Due Diligence” and make our own decisions on just what we must do but I wanted to clarify my understooding that with my Bronchiectasis and MAI/MAC I could be “stabilized” .. but not cured of the MAI/MAC.
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Per Dr. Timothy Aksamit, Mayo Clinic, Rochester MN:
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I have made a few more minor edits.
Dr. A

As far as MAC treatment / stabilization / cure goes; my position is unchanged. I would caution that there is a bit of semantics here. Specifically, for those patients able to take three mycobacterial drugs for MAC (non-cavitary, macrolide susceptible), sputum clearance rates are approximately 90% (92% in our experience).

If these same patients take three drugs for 12 or more months after the MAC is gone away in the sputum, it stays out of the sputum in about 2/3 of patients. All patients have persistent abnormalities on their CXRs and Chest CT scans even after 12 months of sputum conversion (that is, the MAC has gone away in sputum).

Point is that if we were to do a lung biopsy under anesthesia at the end of therapy I judge that we would potentially see changes of MAC. So, if it goes away in sputum (‘sputum conversion’) but changes on CXR / CT scan persist does that mean that it is cured? I do not know that answer but I can say that we continue, even during and after treatment, to be exposed to MAC from the environment all the time. For those patient that have NTM come back with either MAC or another NTM, we understand that these NTM are different germs than the original. In this regard I generally tell patients as we discussed that I believe this is treatable but not necessarily curable (even though it goes away in sputum and does NOT return in sputum in most).

Odds are in your favor that if we can complete a full course of therapy that the MAC will go away and stay away (in sputum) for at least half (2/3) patients.

I understand that this is a confusing topic and could gladly expand further either on clinic follow up or through correspondence. I judge that you have received good information but the information needs to be taken in context.
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UPDATE: Unfortunately I posted a personal reply opinion from Dr. Aksamit. He preferred that I post an opinion with a few edits .. see the above corrected version. I carefully compared the two versions and they are essentially the same opinion .. merely punctuation etc changes. His basis opinion is unchanged.

Hope this above information from Dr. Timothy Aksamit helps all of us on our shared journey! Katherine

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@boomerexpert

Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old…we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis…they deserve better…so do we.

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@boomerexpert,

What an interesting thought — that our meds are an outdated treatment for MAC/MIC. That’s probably because — as my pulmonologist said when I was diagnosed and I asked to get in a ‘study’ — it’s not a ‘sexy’ disease with lots of people getting it, so there’s not much impetus for drug companies to invest in new drugs. Fortunately, I’m extremely thankful for the 3 drugs I’ve been on, and that I do not find the drugs intolerable. There are so many worse diseases. I’ve never missed a day of work (60 hr work weeks) over the years due to MAC/MAI, but that’s probably because I changed my lifestyle — put all effort into proper rest & sleep, exercise, taking meds, & talking with my docs. In the 21st century, MAC/MAI is not a killer like it was during the HIV epidemic decades ago. Mostly, when visiting my pulmonologist’s office, and seeing people in special wheel chairs with cystic fibrosis and other terrible lung diseases, I am grateful for my response to MAC/MIA and so humbled because they have it much worse than I.

That said, boomerexpert, I’d love to see a petition started to doctors and drug companies, with push for studies and getting new, better drugs for us all. We’ll probably need a famous person getting MAC/MAI and having a terrible reaction to the drugs, to get some action.

Best wishes,
Paula

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Love your message here, katemn! “FILL YOUR CUP”! For sure “Happiness is an Inside Job”! Each of us needs to find the joy in our lives. Joy is sometimes hidden really deep, but it is there!

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@boomerexpert

Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old…we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis…they deserve better…so do we.

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Hello Paula, I soooo agree about “attitude of gratitude”! Each and every time I go for my check ups at Mayo Clinic .. I see so many people SO much worse off than I am. As you say .. I am HUMBLED by how well off I really am in comparison!

My last appointment as I went for a breathing test I saw a man about my age in a wheel chair breathing with an oxygen tank .. just wasting away. His wife pushing the wheel chair .. his daughter lovingly attending to both of them. Just broke my heart. The love between the three of them .. the luck of the draw between myself and him. There but for the grace of God .. so much of life is our of our hands. We all do the best we can with the knowledge we have at the time. I just feel so blessed that I found a specialist who understood my disease MAC at Mayo Clinic .. across the USA many people cannot find a good specialist. In SO many ways I have been blessed.

LOVE your attitude .. just keep on with your positive life style and keep on with that great attitude! Sending you a hug! Katherine!

Liked by Paula_MAC-2007

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Wow @katemn. Thanks for taking the time to contact Dr. Aksamit and please pass our thanks on to him for providing an answer so quickly and giving you permission to share it.

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Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219

Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn

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@colleenyoung

Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219

Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn

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WOW! This is just WONDERFUL! MAYBE we are coming out from the shadows as a little known disease. Our Dr. Timothy Aksamit is one of our CHAMPIONS rooting for us! Getting us into a trial!! YEAH!! Who knows what the outcome might be .. but at least this is a trial .. and Dr. Aksamit is a part of it. I am delighted!! How “bout that?!!

Liked by barbjh

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Thanks Katherine and Dr Aksamit,great explanation that clears it up for us and gives us great hope for our futures! 🙂

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@boomerexpert

Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old…we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis…they deserve better…so do we.

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As I mentioned in my rant (yep…I know I ranted…:)), millions of people get this dx worldwide, almost as many as the number dx’d with RA (Rheumatoid Arthritis – I have it as well…) yet lots of clinical trials for new treatments for RA… The difference, to me, is that Rheumatologists work with just the one condition so constantly seek better treatments…few docs treating MAC/MAI do same, so they simply don’t push for better treatments. But if each of us urged our respective docs to push for something better, we might just start a movement… Good thing the Founding Fathers didn’t wait for a celebrity to take up their cause…ya?
I am a firm believer in the power of the people…in our case, it’s we the MAC/MAI dx’d people…to insist on change.
Final thought: all the clinical trials you’ll find are for people who tried traditional treatments and failed…none for new treatments to replace the old (and I mean OLD) ones.

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My mother has been on the triple antiobiotic treatment since MArch with significant side effects. Any suggestions on things that work especially with the GI symptoms? Thought appreciated very much.

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@jhharoni

My mother has been on the triple antiobiotic treatment since MArch with significant side effects. Any suggestions on things that work especially with the GI symptoms? Thought appreciated very much.

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I take florastor in the morning and before dinner.  I take the rifampin in the morning with breakfast. Then the azithromycin at lunch.  I’ve noticed if I don’t eat enough it can upset my stomach a little.  I also think if I take any other medications with this one it upsets my stomach…but haven’t proven it yet(and probably won’t).  Then I take the ethambutol with dinner.  I think sometimes if I eat too many greasy foods it gives me pains and lose stools for awhile.  I’ve been on it for just over 2 weeks so my body was also still adjusting I think too.  I’d ask the pharmacist and if they don’t have suggestions I’d ask the dr or another pharmacist at a different place.If she’s not on a probiotic I’d definately get on one.  Could take awhile to help.  Also eat yougert. Good luck.

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@jhharoni

My mother has been on the triple antiobiotic treatment since MArch with significant side effects. Any suggestions on things that work especially with the GI symptoms? Thought appreciated very much.

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Hello Jhharoni, a VERY nice response from jilnc. We have some wonderfully supportive people on our Forum!

The only thing I would add is when you have time .. try to read through the past posts on our Forum. You will find various methods that various people have tried. Every person’s body reacts differently .. so different methods work for different people. Your mother is very blessed to have an advocate like you on her side. Lucky her! Remember that we are here for you and for her on the next part of the journey .. keep coming back! Katherine

Liked by Paula_MAC-2007

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