(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

@anniepie

I wish all of you have a safe and well Easter

Jump to this post

Ditto that! Every Spring brings new beginnings!

Just wanted to update all. I have been in the big 3 for 16 months. I had my last CT 10 months ago and the initial findings were some improvement. My CT this week showed one area a little better and another got worse. So now what? I was given the option to have another scan in 2 more months to see if the area involved continued to worsen or have a CT guided Biopsy to get cytology and cultures that will need to go to National Jewish. I am very discouraged. I was hoping I would be able to stop the meds. They tell me they need to see what the sensitivity returns to see if I need a different regimen or inhaled Amikacin. The cultures of course will take weeks then the sensitivities will need to be done after that. Very sad. I guess it just couldn't be that easy.

Being medicated without culturing for specific medication sensitivities is the problem, and why you're stuck in an ineffective treatment loop. Once you have the sensitivity testing done, I believe you'll see a significant difference.

@boomerexpert I hope so. My heart just dropped to my feet when I went for my results. I always worry about them finding more and also worry about cancer. The Pulmonologist said he believes it is all MAC. I do not want to wait 2 months to have another CT then possibly end up with yet the same situation and another CT. That is too many trips under the scanner. I would like to have the cultures done and continue to hope for research to come up with some better options. I appreciate that you are there to read and give advice.

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Liked by america, anniepie, noahs

@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

Also want to add that Dr. Anderson is having a CAT scan of my lungs and a lung function test ran next wk so he will have a guide line to begin my journey without MAI.

@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

@becky33 You've been through so much! Congratulations on reaching this point of freedom from meds! Wishing you continued good health going forward! Olivia in California

@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

@becky33wishing you all the best! Congratulations on your perseverance!

@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

@becky33 Thanks so much for sharing!! Your journey and progress in this battle are an inspiration. Wishing you a clear scan and healthy days from here on!!!
Blessings, Yaggi01 (an MAI sufferer also on the Big 3 for 20 months now 😏)

@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

That’s wonderful news! Prayers for a great journey 🙂

@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

@becky33 That is really wonderful Becky. And I agree you are a real inspiration to us all! (Please now do everything you can to improve your immune system. After we finish the antibiotics, the research shows there is increased risk for up to 2 years. So I suggest taking a good broad spectrum probiotoc and inulin powder as a prebiotic every day — you can order these online. And take up to 4000 iu per day of vitamin D3. Both of these help the innate immune system of older people). Hugs and the best of luck, Annie

Can those of you who took Big 3 over a year, tell me if you had similar things as with my CT of this week. I had improvement last years CT then this week one spot better and one spot worse ( the original area). I don't know if it is forming scarring or just getting worse. Hence being scheduled for Biopsy for more cultures. It is too far down to reach with bronchoscopy.
I hope I get to the day when I can say, here is that last dose.

@jkiemen

@boomerexpert I hope so. My heart just dropped to my feet when I went for my results. I always worry about them finding more and also worry about cancer. The Pulmonologist said he believes it is all MAC. I do not want to wait 2 months to have another CT then possibly end up with yet the same situation and another CT. That is too many trips under the scanner. I would like to have the cultures done and continue to hope for research to come up with some better options. I appreciate that you are there to read and give advice.

Jump to this post

You've been poorly or mis-medicated…also recommend you find new doc who fully understands MAC and latest science of it.

@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

YAY!!!

@jkiemen

Can those of you who took Big 3 over a year, tell me if you had similar things as with my CT of this week. I had improvement last years CT then this week one spot better and one spot worse ( the original area). I don't know if it is forming scarring or just getting worse. Hence being scheduled for Biopsy for more cultures. It is too far down to reach with bronchoscopy.
I hope I get to the day when I can say, here is that last dose.

Jump to this post

Thats exactly what im being told they said it was gone now they saying i have a spot they cant reach and need to do a biospy we find this ver odd what are you doimg about it?

Please login or register to post a reply.