(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

@heathert

Hi mimi68 was there any new information for us?

Jump to this post

Hello Mimi,
If anyone hears where we can get a written transcript I’d really be interested in this! I am one of those “Visual Learners” so that would be most helpful for me! Best to all! Katherine

Liked by heathert

REPLY

Hello All, just a heads up .. I will be on a trip from July 11 and return July 25. I would ask you to keep an eye out for any new person posting and give them any help and support you possibly can .. AND of course continue to give each other the wonderful help and support you already do! Sending you all a Big Hug .. and don’t forget .. I’ll be here until July 11!

REPLY
@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

Jump to this post

Sorry to hear that Paula but great that your old MAC has deminished. Have you been on the same 3 antibiotics for the last 8 years or have they been changed? Hope your doc can gets this sorted asap for you.

REPLY
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

I was diagnosed with MAC on july 5 2016. I dont feel bad at all but kinda freaked out regarding the side effects of the meds. Cried and cried until spmeone prayed for me and i know i have to think positive to be healed…

REPLY
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

Welcome Sophie, I am glad you have found our Forum .. I feel confident you will find a LOT of good information if you can find the time to read through the posts going back to the beginning. Plus you will find many kind supportive people who are here walking the same journey you are on .. we are all in this together. Personally I have been off the antibiotics since May 2014 . . so as you said .. THINK POSITIVE! You have a great attitude .. you just keep it up and you will be just fine! Sending you a hug! Katherine

REPLY
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

Hi Sophie, You are right to think positive! I was diagnosed with MAC and Bronchiectasis in beginning of March and didn’t see a pulmonologist until mid-April. I also feel fine at this point so I probably won’t be starting treatment at this time but I will discuss it with Doctors that specialize in this in August when I go to a clinic here that treats just Bronchiectasis and also MAC or NTM. I think the most important thing you can do is research. Its scary at first but focus on the success stories – there are many of those too. And by success, I mean learning to live with this disease, to accommodate it, to work around it. And find doctors in your area that know a lot about this. You need an infectious disease specialist along with your pulmonary doctor. What state are you in? Katherine is absolutely right – read all the past posts on this board. You will learn so much. You are not alone in this! Hang in there. Janet

REPLY
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

Did you have any side effects with your meds? Any eye problems????

REPLY
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

I haven’t started the meds yet. My Dr told me it could affect my hearing but, it shouldn’t bother my eyes. What mycobacterium do you have? Do you have abscessus?

REPLY
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

No I don’t have that. Just the non tb mac. So far I’m doing okay on the meds. Had a little diarrhea, which the doc told me about but that went away. My doc told me that any side effects should occur within the 1st 30 days, if any, then everything should go smooth.

REPLY
@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I’ll call the office and talk to his nurse about this. Maybe there’s an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

Jump to this post

I asked my pulmonologist about doing a bronchoscopy and he said he didn’t want to as it was too invasive. I have finally been able to get 3 sputum tests into the lab, the last one being today. I should have the results around the beginning of October. I still have no symptoms, and hope that continues. I can see from reading many of the posts that there are lots of people really suffering from the disease and the treatment, and I certainly feel for them all. I hope a better and more user-friendly treatment will be found soon. If my tests come back positive, I will see an infectious disease doctor who is familiar with MAC for a 2nd opinion before going on the treatment.

REPLY
@digmeme

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

Jump to this post

I am glad that you are feeli g better. I was diagmosed with MAC this month and on three antibiotics. I had diarrhea at the beginning, it has subsided. Do you know of anyone who had eye or hearing problems. I take the colorblindness test every other day. That part of my eyes are still good. Look like things are blurry, but it could be my mind playing tricks on me. I am trying to stay positive….

REPLY
@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I’ll call the office and talk to his nurse about this. Maybe there’s an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

Jump to this post

Then I believe you haven’t found a particularly good pulmo… In contrast, two pulmonologists wanted to do a bronch on me immediately as that’s the most accurate way to determine the presence of MAC/MAI…sputum tests can be misleading… Recommend you find a new doc…

REPLY
@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I’ll call the office and talk to his nurse about this. Maybe there’s an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

Jump to this post

My pulmonary dr. wanted to do a bronchoscopy on me first thing after ct
scan to be sure of what was going on in there.

REPLY
@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I’ll call the office and talk to his nurse about this. Maybe there’s an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

Jump to this post

I did the bronchi test. I have the top pulmonary specialist in Wisconsin. He has run every test, completed every lab test imaginable. I also got a second opinion from another top pulmonary doctor who was in agreement with my doc. I feel really good, do not have any side effects right now. I was told by the 2ND doc that if side effects are going to show, they will mostly show in the 1st 30 days…

REPLY
@digmeme

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

Jump to this post

Hello Sophie, I have been taking the three meds for MAC for a month now and I haven’t seen any eye Dr.  I have Dr. appointment next month to check my eyes.  I noticed my eyes are itchy all the time. I don’t know its b/c I don’t get enough sleep or from the side effect of the meds.  Also, my ears I can hear some noise.  I get a lot of stomach cramps on and off.  Try to drink plenty of water after you took the meds.  Take care off yourself and let us know if we can help.

REPLY
Please login or register to post a reply.