(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

@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

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Katemn….great question….where does my mucus come from if not an active pulmonary NTM infection. I assume a combination from
-chronic allergicq rhinorrhea….when pulmonologist at NJH was doing a laryngoscopy on my nose he noted and put it in the written summary “there was a copious amount of mucopurulent material present thru out” i already use steroid nose sprays as well as antihistamine nasal sprays as well as oral ones.
-esophagram I had over a year ago showed when i eat the food does not enter into the stomach at the normal speed…..it sits a long time….i notice more mucus coughed up after eating.
– i have allergies.
The above is my interpretation?…tdrell

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@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

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@tdrell, hmmm Terri, aren’t our bodies SOOO DARN complicated! Thank you for the explanation! Yes it explains it .. BUT I sure don’t envy you . . but then again .. most of us don’t have a “great and wonderful” journey of it .. right?! BUT “attitude of gratitude” it could all be SO much worse for ALL of us! Hugs! Katherine

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@irene5, Irene,@virtuous69, @cindyrnc, Cindy @windwalker and @ling123, Ling I just found an interesting article that I just placed under “Discussions” .. it is a bit technical .. BUT I think it answers a LOT of questions about MAC/MAI .. would you take a few minutes and glance over it .. see if you think it might help our Group at all .. give me your opinions? I value your input on this!! Hugs! Katherine
https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

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I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I’m looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

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Hi just wanted to let you know that I am now Ok no blood stain in mucus, I still have phlegm though but it is clear not yellowish. So I just continued my deep breathing excercise. Have a great weeek ahead everyone!

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@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

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@contentandwell

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

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That is called postural drainage. It is used for any child or adult with lung issues that have copious mucous production or even post surgery. I used to have to do that on a child with cystic fibrosis years ago.

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@imeehaigt

Hi just wanted to let you know that I am now Ok no blood stain in mucus, I still have phlegm though but it is clear not yellowish. So I just continued my deep breathing excercise. Have a great weeek ahead everyone!

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@imeehaigt Imee, not a bit surprised .. the blood in mucus typically DOES come and go in Bronchiectasis .. not to worry! Hugs! Katherine

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@contentandwell, and @irene5, I am not knowledgeable about this but I am pretty sure Irene is accurate in this .. cystic fibrosis .. hope this helps! Hugs! Katherine

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@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I’m looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

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Hi Julia, I am 74 -year female named Andrée,I also have been diagnosed with bronchiectasis and pseudomonas around May 2016 . I only found out about 3 months ago while looking through my files since my Dr retired and the new Dr was not interested in paper work but works only on the internet.
I was given all my paperwork and discovered this report from the lung specialist. I must explain that I live in Vancouver BC and that I was seeing a clinic Dr for approximately 8 years , the lady was very busy and obviously forgot to read it or mention it to me.
I kept getting bronchitis infections from fall 2016 and was treated with ciprofloxacin 750 mg.

Since I was leaving for Florida for a length of time in January, the specialist had given me about three repeats of this prescription.
When I arrived in Florida, I had already started to have a very raspy voice and it continues to this day.
I now assume that it must be also due to the three inhalers that I now use twice a day. I also get a very dry mouth and I have to drink lots of water and juice in order to alleviate these symptoms.

I finally had to come back home to Canada earlier than I planned because the antibiotics where not doing the job.When I saw the GP on my return and explained my situation she said that I had taken way too many antibiotics and sent me on my way with nothing.
I became so sick in bed by this time with a horrible sinus infection along with more bronchitis. I was spitting and blowing my nose with secretions…so much so that I slept with my box of Kleenex in the bed.
I started to become short of breath and went to the Emergency Hospital, they gave me another inhaler along with some IV.
I went home and my GP called the next day and prescribed Amoxiclan on Feb 17th.

This GP retired finally in April and that’s when I found the report in my files. I am was extremely upset to read this report in my files.
I had never heard of these terms “Bronchiectasis ” and “Pseudomonas ” as I read this report, I see also he is mentioning previous hemoptysis which I have no idea what that is. I will have to check Dr Google!

Since this incident,I am somewhat better but I have a lot less energy, I have a new Respiratory specialist who gave me a prescription to analyze my sputum,unfortunately I can no longer bring even a tiny amount for a test.
My voice is very raspy and I have no idea when this my normal voice will come back.
I found this Mayo clinic forum and I am very thankful that I can read about other people’s experiences as I try to educate myself to my new situation. Thank you for listening to me, I wish everyone the very best. Andree

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@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I’m looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

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Andree: What a horrible time you have had! Seems like no one really cared about you. Hemoptysis is caughing up blood, or bloody sputum. Some of us get that. I hope they test you for mycobacterial disease, actually, you should insist on it. We all have bronchiectasis and most have MAC or MAI along with it. Others on the site will talk to you about pseudomonas and what they were prescribed. Sounds like you have to start over and figure out exactly what is going on. Read all on this site. We all have the same stuff and can suggest what to ask the doctors. xoxo Christa

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@contentandwell

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

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@irene5 Thanks Irene, now that you say cystic fibrosis I am sure that is what this child had. It’s all vague to me but I remember what they had to do and it just really hit me. I am so fortunate that my two never had health problems unless you consider ADD and ADHD to be health problems. They both had to deal with that.
JK

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@contentandwell

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

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Yes, cystic fibrosis is sad for a child to deal with since it doesn’t go away. On another note ADD and ADHD isn’t easy either. I wrote a thirty page paper on that when I was doing my Masters in education. One of our ten has it. He was like six all rolled up into one – I used to tell my husband ” one of us is leaving, and it’s not me!” As an adult he is a wonderful husband and father (of seven) and head of special ed in a Connecticut school system. And I thank the good God every day for his sweet wife!

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@contentandwell

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

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@irene5 It was difficult at times. My son had the typical impulsiveness and that was tough. He struggled in school despite being above average in intelligence. My husband was very opposed to medication so he never was on anything until his junior year in HS! At that point he himself was amazed. He told me he could never learn in class and had to try to at home in the evening but now he could pay attention and was able to learn. He went off the meds in college and once again struggled. I suspect he ceased them because he was drinking a bit and he is very cautious about that type of thing. We knew if we could push, pull, shove him through college he would do well and he is how a VP of a staffing firm.
My daughter is very bright and in school learned to compensate somewhat but still did not get the grades she should have gotten. She constantly walked out of places leaving clothes, her purse, and whatever behind. Her head was in the clouds which I understand is pretty typical for girls with ADD. She too is doing well now though, thankfully.
So many people think ADD is just something fake to make excuses but I knew it was not. I myself did not get the grades in HS and college that I should have, I used to fall asleep in lecture halls, but back then they said I was lazy or an underachiever which of course made me feel very inadequate.
JK

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@contentandwell

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

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So glad things turned out well. School is a difficult environment for ADD/ADHD children. The good God blessed me with my son so I would be a better teacher for those “special” friends.

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