(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

I was diagnosed at Mayo’s almost 3 years ago with bronchiectasis. Would like to join the group. Please tell me where to go to do this. My doctor is Dr. Teng Moua in Rochester Thank you — Jan Todd, Havana, Ks

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@contentandwell

@irene5 My son and daughter were never diagnosed because my husband was opposed so they both did the best they could. My son had a teacher in first grade who was not like you at all. She had two very bright sons, then had two more about 7 or 8 years later. She had just come back from leave when she had my son in 1st grade. She could not deal with him at all and his confidence really took a hit. She would send “sad grams” to me almost every day with inane things like saying he spoke in the hallway! He always had more trouble on days when they had no outdoor recess.
JK

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I am truly sorry!

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I’m Jan Todd, Havana, Ks — and I was diagnosed at Mayo’s almost three years ago with bronchiectasis. I’m 76 years old — never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors — many specialists — no diagnosis — lost a lot of weight — thought I was going to die. My doctor is Teng Moua in Rochester and he’s helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don’t know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you — Jan

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@auntnanny .. Jan, Welcome! I am not quite sure what you are asking when you say “Would like to join the group. Please tell me where to go to do this.” Please clarify your request. Hugs! Katherine

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@auntnanny

I’m Jan Todd, Havana, Ks — and I was diagnosed at Mayo’s almost three years ago with bronchiectasis. I’m 76 years old — never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors — many specialists — no diagnosis — lost a lot of weight — thought I was going to die. My doctor is Teng Moua in Rochester and he’s helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don’t know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you — Jan

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@auntnanny .. Jan, NOW with this post I am understanding you! Welcome AGAIN! Now that you have posted .. you are IN .. you are now part of Mayo Clinic Connect! I am REALLY glad you found us! MANY of us had never smoked .. myself included! You may be newer to MAC/Bronchiectasis .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all are on this shared journey .. we are here to help you .. support you in any way we can. We have “been there .. done that”. Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum! Many pages? Phooey .. you will read a book for pleasure .. you won’t read the past pages of this Connect Forum to educate yourself to our shared Bronchiectasis/MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,… concerns .. cares. We will be here. Sending you a hug in this tough time! Katherine

Jan, while I am thinking of it .. you said: ” Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers.”

From my File Cabinet:
MAC-TREAT OR NOT TO TREAT I felt like my Mayo Clinic doctor put the ‘puzzle’ of to treat or NOT to treat with antibiotics JUST like a great big puzzle. The puzzle pieces were put together based on the results of the sputum culture results/Bronchoscopy if needed/CT scans/Xray/Pulmonary Testing. THEN deciding whether to treat with antibiotics NOW .. go to quarterly checkups, semi annual .. then to annual .. sometimes then back to semi annual checkups. It is ALL up to your GOOD Infectious Disease doctor who is (IF) KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up checkups to CONFIRM that the MAC in your lungs is STILL “stable”/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still “stable”! Those nasty critters DON’T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene!

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@auntnanny

I’m Jan Todd, Havana, Ks — and I was diagnosed at Mayo’s almost three years ago with bronchiectasis. I’m 76 years old — never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors — many specialists — no diagnosis — lost a lot of weight — thought I was going to die. My doctor is Teng Moua in Rochester and he’s helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don’t know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you — Jan

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Hugs,

   Katherine

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@katemn

@auntnanny .. Jan, Welcome! I am not quite sure what you are asking when you say “Would like to join the group. Please tell me where to go to do this.” Please clarify your request. Hugs! Katherine

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I thought perhaps there were forms to fill out or something in order to join……. am I free to just post replies or notes as I have questions?

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@katemn

@auntnanny .. Jan, Welcome! I am not quite sure what you are asking when you say “Would like to join the group. Please tell me where to go to do this.” Please clarify your request. Hugs! Katherine

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@auntnanny .. Jan, Nope .. not a form or a thing .. we are a welcoming group .. just read the back pages and post questions after you feel you are stumped! Hugs! Katherine

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@auntnanny

I’m Jan Todd, Havana, Ks — and I was diagnosed at Mayo’s almost three years ago with bronchiectasis. I’m 76 years old — never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors — many specialists — no diagnosis — lost a lot of weight — thought I was going to die. My doctor is Teng Moua in Rochester and he’s helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don’t know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you — Jan

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I have been doing many sputum tests and sending results to Dr. Moua. He has not asked for another CT scan — would the MAC possibly not show up on the sputum tests? Each time I start coughing again I do a sputum test to determine which bacteria is causing the problem……. for a while it would be MRSA ….. then maybe MSSA, …… or pseudomonas…… and each would require a different antibiotic. I am usually free of coughing for 3-5 weeks after 10 days/2 wks of a selected antibiotic. Then, it’s all to do over again. Clindamycin has been a good one for me. But I don’t understand why the tremendous coughing and phlegm and no bacterias to treat. He selects one (usually clinda…….. and I do it and calm the cough for a few weeks. But there has been no MAC in the tests for the last year…….. and nothing except normal flora in the last four sputum tests. Does this mean the testing could be erroneous — has anyone else experienced quite the same????? Thank you — Jan

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@auntnanny

I’m Jan Todd, Havana, Ks — and I was diagnosed at Mayo’s almost three years ago with bronchiectasis. I’m 76 years old — never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors — many specialists — no diagnosis — lost a lot of weight — thought I was going to die. My doctor is Teng Moua in Rochester and he’s helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don’t know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you — Jan

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@auntnanny .. Jan, is he doing the below .. Hugs! Katherine

From my File Cabinet:
SUSCEPTIBILITY PANEL TESTING Susceptibility testing is used to determine which antimicrobials will inhibit the growth of the bacteria or fungi causing a specific infection. The results from this test will help a health practitioner determine which drugs are likely to be most effective in treating a person’s infection

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@auntnanny

I’m Jan Todd, Havana, Ks — and I was diagnosed at Mayo’s almost three years ago with bronchiectasis. I’m 76 years old — never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors — many specialists — no diagnosis — lost a lot of weight — thought I was going to die. My doctor is Teng Moua in Rochester and he’s helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don’t know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you — Jan

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Not sure I understand the question, but if there is a bacteria, the lab gives a list of suggested antibiotics to use but when the test is negative, there is no list. Does this answer what you’re asking? So, there hasn’t been a list for the last four times. However, Dr. Moua will go ahead and prescribe an antibiotics to take for 10 days anyway. Believe me, that part I do not understand. His card says he is Senior Associate Consultant, pulmonary and Critical Care Medicine and Assistant Professor of Medicine — Rochester. I don’t know if that is a great title to hold or if everyone there fits that bill. Jan

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@auntnanny

I’m Jan Todd, Havana, Ks — and I was diagnosed at Mayo’s almost three years ago with bronchiectasis. I’m 76 years old — never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors — many specialists — no diagnosis — lost a lot of weight — thought I was going to die. My doctor is Teng Moua in Rochester and he’s helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don’t know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you — Jan

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@auntnanny, Jan, as I understand it, coughing and excess phlegm do not mean you have MAC. These are the symptoms of bronchietasis. So even though your sputum tests come back negative for MAC, it does not prevent you from coughing with a lot of phlegm. You can catch MAC when your bronchiectasis prevents your bronchial tubes to freely move/expel excessive phlegm like the bronchial tubes of someone with healthy lungs, bacteria such as NTM mycobacterium can be trapped in there, causing infections like MAC.

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