(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

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@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!

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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?!!

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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

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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 for getting us that information. And so quickly, too!!

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You will find more information and support programs at the bronchiectasis and NTM social community (find with google search)

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I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

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