(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

@marier

hi has anyone had a problem with candida because of the antibiotic and how are you getting rid of it

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Can you put both the aerobika and the nebulizer in the bottle sterilizer? How long do you soak the equipment in warm soapy water before using sterilizer? When you clean before sterilizing, do you rinse in distilled water or do you use regular water? How often do you use the baby bottle sterilizer: every day after each use or once a week? Looking forward to your answers (sorry for so many questions) and thank you. Terry

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@marier

hi has anyone had a problem with candida because of the antibiotic and how are you getting rid of it

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That sounds like a good idea!
 

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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@irene5 My transplant center told me to wear a mask when flying but I have discovered on this site that many transplant centers do not insist on it. I don’t believe that Mayo does. A close friend of ours who is a doctor said that masks do little to help because the germs flying around in airplanes are generally viruses and they are tiny and can get through the masks. I purchased some though that have an anti-viral coating so hopefully that will help. I would definitely recommend if a person is getting a mask for flying that they get an anti-viral one. I have no idea if they have them at all of the big drugstores but I bought mine at CVS.
JK

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@marier

hi has anyone had a problem with candida because of the antibiotic and how are you getting rid of it

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Terry – ask all the questions you want. That’s how we benefit from each other. I sterilize the three main pieces of the aerobika once a week, the mouthpiece every day, but, yes, I do put it all in the sterilizer with the nebulizer parts. I soak everything (only do aerobika once a week as well, except for the mouthpiece which I wash and sterilize daily). Sometimes it’s in there for an hour, sometimes for several hours. Just depends on when I get back to it. You are supposed to agitate when cleaning. I don’t. I use hot soapy water and then rinse really well. I don’t use distilled water. Just tap water. I use the baby bottle sterilizer daily. Here’s my routine: nebulizer treatment, aerobika, take nebulizer parts and aerobika mouthpiece and soak all in hot soapy water. Later, rinse all parts well and put in the bottle sterilizer, microwave according to directions the sterilizer comes with, remove. I usually let it cool for a bit. Remove parts. Lay out to dry. Rinse/wash out sterilizer and let that dry. As stated, every Sunday, I wash and sterilize the rest of the aerobika. Not saying this is the “right” way but it works for me. I almost burned the house down a few times when I was sterilizing using boiling water and would forget I was boiling water on the stove. Geez! Like we don’t have enough going on, right? Linda

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@marier

hi has anyone had a problem with candida because of the antibiotic and how are you getting rid of it

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What a comprehensive, fabulous answer! Makes a lot much simpler. Thank you, Terry

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Good advice. I guess it would depend then on what an individual is comfortable with for their own anxiety level or what their physician recommends.

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@colleenyoung

Hi all,
I believe we have solved the issue with the error page when trying to access the website by clicking VIEW & REPLY.
Please do the following:

1. Go to Connect’s homepage here: https://connect.mayoclinic.org/
2. Login (if you’re not already logged in).
3. Go back to the email notification and click VIEW & REPLY.

You should now be able to get to the messages as you usually do.

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That worked, but will this extra step be necessary herein?

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@colleenyoung

Hi all,
I believe we have solved the issue with the error page when trying to access the website by clicking VIEW & REPLY.
Please do the following:

1. Go to Connect’s homepage here: https://connect.mayoclinic.org/
2. Login (if you’re not already logged in).
3. Go back to the email notification and click VIEW & REPLY.

You should now be able to get to the messages as you usually do.

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Good question, @boomerexpert
No, the extra step is only necessary once. Part of the issue was that people were no longer signed in. If you select the tick box “Keep me signed in” when signing in, you will no longer need to do this extra step. If you use a different computer or device, you will need to sign in again.

PS: If you are using a public or shared computer, like at a public library, then we advise that you do not tick the “keep me signed in” box.

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@colleenyoung

Hi all,
I believe we have solved the issue with the error page when trying to access the website by clicking VIEW & REPLY.
Please do the following:

1. Go to Connect’s homepage here: https://connect.mayoclinic.org/
2. Login (if you’re not already logged in).
3. Go back to the email notification and click VIEW & REPLY.

You should now be able to get to the messages as you usually do.

Jump to this post

I’ve always done that…when we close down our se (or at least for me) I must sign in when I reopen even when “keep me signed in” was chosen when I closed it down. FYI

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Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Hi, Jen,
As you read through the posts, you will find that taking the Big 3 meds affects each person differently. I began my meds in December last year and am fortunate not to have had a horrible experience. The first few days on the Azythromiacin and then when I began the Rifampin were a little difficult. The Ethambutol didn’t bother me at all. It’s good that you’re spacing them to start so that if you do have any bad side effects, you will know which medicine is causing it. I made sure that I was going to be home with a clear calendar on the days that I began the next meds just in case so you might want to wait for the weekend to begin the next med. There are suggestions for how to take the meds (spacing throughout the day) that came up recently so you probably saw Katherine’s post from her “file cabinet.” Know we are here for you! It is scary for sure, but we can’t live in fear so try to keep a positive outlook. There is no question in my mind that there is a mind/body/spirit connection, so if you are in a positive mindset, the rest is more likely to follow! We are here for you! Linda

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Hi Jen,
I was diagnosed with MAC and Bronchiectasis a little over a year ago (at 58) and did the year of the “big three” antibiotics. I made it through them with no real problem but learned a lot from reading these pages and especially from our guiding angel, Katherine, who is out sick at the moment. It’s so different for everyone. I felt very fortunate that I made it through. Mine was found by accident through a breast MRI if you can believe it. A very good radiologist said he spotted something in my lungs and even said he thought it looked like
bronchiectasis. Long story short, after a CAT scan and a pulmonologist looking at me and saying I bet you have MAC and HE was right also! I was like a deer in headlights. It was very frightening and depressing at the same time but I didn’t let it get me down for long because I have my own business and had to get through it. I have never had any mucus so I had to have a bronchoscopy to find the MAC and now in July I will have another CAT scan to see if my lungs look any better after the year of drugs. I split my drugs up at three different times during the day. I took the Rifampin on an empty stomach but the other two I didn’t worry about as much on an empty stomach. Some people take the drugs all at once but I was too scared to do that so I put a few hours in between each one of mine. I also drank a lot of water and I took two probiotics a day and ate yogurt everyday along with other food that had probiotics…kefir, sauerkraut, etc. Hope this helps. Let me know if you have any other questions. Good luck to you. This forum is the best. Nan

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Jen,
I forgot to say in the post above this one that I just wrote that I was also just diagnosed with a sliding hernia and have terrible GERD. There’s so many similarities in all of us. I’m thin,59, live in SC, have slight scoliosis….textbook for Lady Windermere’s syndrome as they call it. Nan

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Thank you so much for your reply. It is comforting to know others have gone through the same process. I hope your lungs are clear on your CAT scan in July!

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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@jennifernicole….Hi Jennifer! My name is Amy. I am 46 with an 8 year old and ten year old. I was diagnosed with Bronchiectasis and MAI in December 2015. At the time my MAI was not active so they did not start the drugs on me. This past December of 2016, the MAI was active and the B. was getting worse. I also have no symptoms. (I knew I had something wrong 4 years ago when I threw up blood.) I have been on all 3 drugs for almost 2 months. I have had no side effects, except for a little insomnia and occasional tiredness. (The tiredness is one where you could push through if you have too, but if you have nothing else going on a short nap feels great. Just for reference I probably have taken a short nap about 5-7 times since being on the drugs.) I am so thankful that so far I am showing no reactions to the drugs…I, of course, still need to get my kidney, liver, and eyes checked monthly for the next 5 months.

If anyone sees anything crazy about my schedule below please let me know: 🙂

5:30am= 2 probiotics (You have to take antibiotics 2 hours apart from probiotics. I didn’t realize this fact for the first month and a half, so I recently just revised my schedule as written below.)
6:00-6:30am= eat breakfast
8:30am= Rifampin (you have to take antibiotics 2 hours after eating)
9:30am= Clarithromycin and Ethambutol (I may end up taking all 3 antibiotics at 8:30. Others have taken all at same time.)
10:30am= can eat again (you can eat one hour after the antibiotics)
3:00pm= daily vitamin and D3 supplement (many of us have low Vit. D…vitamins have to be taken I believe 4 hours apart from the antibiotics).
8:15pm or so= 2 more probiotics (the number of probiotics you take seems like a “guess”, but whatever works for you.)

I have never had an upset stomach from drugs, or a period of diarrhea, or thrush etc. I have just recently starting going gluten and dairy free to help my gut heal, and any inflammation that I have going on. I was just diagnosed with a slight bit of Barrett’s esophagus…I had no idea that I was silent refluxing, but almost all of us have acid reflux to some extent.

If I was you, I would buy the book Beating Bronchiectasis on Amazon. The man that wrote the book just released last November. He had severe asthma his whole life and developed Bronchiectasis and he was so bad that he thought he was on his death bed. His story is amazing and uplifting bringing hope to those of us who are able to be regimented enough as he was. He gives his daily regimen and said his CT was perfectly clear after doing his regimen for 8 months. I believe we have hope!! I am going to try to beat this too!

Please feel free to contact me for any additional questions. I know it can be scary, but reading books about how we can keep our bodies healthy has given me a lot of hope for the future!

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