(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

@lynn55

Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc…but I still continue to cough. Should note that pulmonary function tests are normal

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My wife is in the same category, a dry cough. Coughs so hard at times until she get a headache…

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@lynn55

Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc…but I still continue to cough. Should note that pulmonary function tests are normal

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@lynn55 Hi Lynn. Yes, constant coughing is VERY exhausting. I used to have that issue myself. My 'go to' relief was 'Breathe Easy' tea by Traditional Medicines. It has many of the same ingredients as another good product called 'Clear Lung'. I buy the tea in the Natural food aisle at Kroger's. Clear Lung can be purchased online through Amazon. The tea could probably be found there also. The ingredients of both have been traditionally used in Chinese medicine. There are members in this group that have used the Clear Lung and said it worked. (@nicky52 is one) Like I said, the tea helped me. It especially got rid of that tight chest feeling. I hope you find some relief.

Liked by poodledoc

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@unicorn

Garry: You are right. It's more like a CT scan will show if the MAC is evolving, tree in bud, etc. but it will not diagnose MAC. In fact, when I first had a CT scan they diagnosed me with severe asthma, Luckily a savvy doc did a bronch, and sputum tests and I learned what I had but by then I was coughing up blood. 2 years of the big 3 drugs left me with tinnitus, glaucoma, really messed up bowels, stomach cramps, wierd skin rashes, heart palps, loooow blood pressure, and way under weight. Mom died at 94, dad died at 104, neither took any pills for anything!!!, the pills demolished me. Just had a CT scan yesterday so will see the progression after 2 years no drugs. i actually feel pretty good now, tired but I move well and enjoy life. Learn as MUCH as you can, you'll find you know more than some docs. Keep on top of new research. xo

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@unicorn, Hi Christa. Did you get the results back yet on your latest ct scan?

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@garry

I use to have my tub in the basement. I have heard that about hot tubs. Mine now is outside in the fresh air.I have also heard that the mac virus is every were in the soil etc. I do not use chlorine in my tub . I use copper I am always cold so I find that the steam room and ht warm me up. If I was sure this was causing my mac I would get rid of it. I got mac years ago before I had a ht.

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@garry, I was in my outdoor hot tub nearly every night. I am fairly certain that I caught my mac from it. I say that because I read somewhere that one indication that it may be in there is that the ntm (mac) can cause a red itchy rash; which I did get. I also noticed that at one time our hot tub water had a 'pond' smell. I asked my hubby if he had been treating the water regularly; he said yes, but the water had not been changed in a long time. Long story short; I will not get into a hot tub, steam room, or indoor heated pool. Ever!

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@windwalker

@unicorn, Hi Christa. Did you get the results back yet on your latest ct scan?

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Hi
Terry , ct scan is done but I dont see doc for awhile, a month I think. xo

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@lynn55

Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc…but I still continue to cough. Should note that pulmonary function tests are normal

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Absolutely Lynn — first had sputum cough then later I had a completely dry cough and couldn't get any sputum up for testing. It's quite common for M. Avium and M Intracellulare. Finally having a bronchoscopy with lavage wash to see what is happening now with bacteria etc. Good idea for you to have a bronchoscopy with lavage and see what's going on.

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@alleycatkate

@anniepie….good luck to you tomorrow with your testing…and let us know. So Sorry. Kate

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Thanks Kate. Sorry no reply for a while, but t took a long time to work it all out with my meds and fix the neutropenia. The Big 3 can cause neutropenia — especially Ethambutol — but there are treatments to help.
In my case it turned out to be one of the blood pressure meds I am on and we've stopped that. So far, the neutropenia has gone.
(PS. As we get older more people develop reactions to drugs, even the ones they've been on for a while. I've also had to stop all Statins for cholesterol because I now get hypersensitivity vasculitis rash from them).

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@anniepie

Thanks Kate. Sorry no reply for a while, but t took a long time to work it all out with my meds and fix the neutropenia. The Big 3 can cause neutropenia — especially Ethambutol — but there are treatments to help.
In my case it turned out to be one of the blood pressure meds I am on and we've stopped that. So far, the neutropenia has gone.
(PS. As we get older more people develop reactions to drugs, even the ones they've been on for a while. I've also had to stop all Statins for cholesterol because I now get hypersensitivity vasculitis rash from them).

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@anniepie …So good that you got to the bottom of your neutropenia!! It is odd how all of a sudden something that is well tolerated, backfires! I had used the herb Turmeric for years with positive results on cholesterol levels and inflammation but then it resulted in hives!! Sometimes it is difficult to figure the culprit causing problems…..but glad you did and are doing better. Wishing you the best. Kate

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@alleycatkate

@anniepie …So good that you got to the bottom of your neutropenia!! It is odd how all of a sudden something that is well tolerated, backfires! I had used the herb Turmeric for years with positive results on cholesterol levels and inflammation but then it resulted in hives!! Sometimes it is difficult to figure the culprit causing problems…..but glad you did and are doing better. Wishing you the best. Kate

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That's right — hugs to you Kate @alleycatkate . Please look after yourself, Annie x

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@windwalker

@garry, I was in my outdoor hot tub nearly every night. I am fairly certain that I caught my mac from it. I say that because I read somewhere that one indication that it may be in there is that the ntm (mac) can cause a red itchy rash; which I did get. I also noticed that at one time our hot tub water had a 'pond' smell. I asked my hubby if he had been treating the water regularly; he said yes, but the water had not been changed in a long time. Long story short; I will not get into a hot tub, steam room, or indoor heated pool. Ever!

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Not me either! Please look after yourself Terri @windwalker and everyone else in this forum site — it's a crazy year coming up. Best of luck to all of us, Annie

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@unicorn

Hi
Terry , ct scan is done but I dont see doc for awhile, a month I think. xo

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@unicorn Crista, thank you for checking in. Again, please keep me posted. Also, stay cautious about picking up germs. I don't know about you, but I feel like going into hybernation until this covid-19 passes. The only Corona I want to hear about is the one that you can drink!

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@anniepie

Not me either! Please look after yourself Terri @windwalker and everyone else in this forum site — it's a crazy year coming up. Best of luck to all of us, Annie

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@anniepie Thanks Annie! You stay safe too. I can be careful, but my hardheaded hubby is another story. He is not taking it seriously. I had a talk with him already about being careful and washing his hands a lot. And also, do not volunteer us baby sitting for friend's school age kids! We get asked to do that on occassion. He thinks this corona flu is a bunch of huey. But I tell him repeatedly; that they don't close schools and the Louve museum and wear hazmat suits for regular flu! I may need to quarantine myself from him!

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@windwwalker…isn't this the same conversation you had with hubby last year or 2 years ago….???@tdrell aka terri

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@windwalker

@anniepie Thanks Annie! You stay safe too. I can be careful, but my hardheaded hubby is another story. He is not taking it seriously. I had a talk with him already about being careful and washing his hands a lot. And also, do not volunteer us baby sitting for friend's school age kids! We get asked to do that on occassion. He thinks this corona flu is a bunch of huey. But I tell him repeatedly; that they don't close schools and the Louve museum and wear hazmat suits for regular flu! I may need to quarantine myself from him!

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Like your reply.

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@windwalker

@unicorn Crista, thank you for checking in. Again, please keep me posted. Also, stay cautious about picking up germs. I don't know about you, but I feel like going into hybernation until this covid-19 passes. The only Corona I want to hear about is the one that you can drink!

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Great reply!

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