(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

@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

Jump to this post

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.

REPLY
@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!

Jump to this post

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

REPLY

@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

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
@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

Jump to this post

@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

REPLY
@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

Jump to this post

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!

REPLY
@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

Jump to this post

@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

REPLY
@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

Jump to this post

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.

REPLY
@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.

Jump to this post

@mariposa .. Andree, Welcome! So glad you found us .. you are in the right place! BUT I am absolutely shocked beyond disbelief .. what has happened to you has to be considered malpractice! If you spend some time reading the past pages of our Main Forum you will find that UNFORTUNATELY MANY of our members have had poor medical care .. some have had wonderful care .. BUT you will learn that YOU must be your OWN best advocate! That “Knowledge is Power” .. and that YOU must take charge of your health care. That NO ONE else is going to care as much about your body as you do .. so read and LEARN!! Since you are in such a tough situation .. right now .. I have attempted to answer as many of your concerns as I can .. please feel free to come back with any further questions you have after reading past pages .. we will be here for you in this tough time. Sending you a hug! Katherine
++++++++++++

Some thoughts: you said ” Respiratory specialist who gave me a prescription to analyze my sputum, unfortunately I can no longer bring even a tiny amount for a test.” Andree, when this happens you can request what is called a Bronchoscopy. After what you have been through .. I would ABSOLUTELY request this WITH “MYCOBACTERIUM SUSCEPTIBILITY PANEL TESTING” to make DARN sure your doctor prescribes the proper antibiotics that WILL work against the mycobacterium you are diagnosed with!

From My File Cabinet:
BRONCHOSCOPY .. BRONCH WASHINGS EXPLAINATION: The significance of bronchoscopy for the diagnosis of Mycobacterium avium complex (MAC) pulmonary disease. https://www.ncbi.nlm.nih.gov/pubmed/11402614

From Member windwalker, Terri Bronch Washings are done by a procedure called a ‘bronchioscope’. You will be sedated, hopefully with a twilight anesthesia, a tube inserted down your throat and into your lungs. The Dr will squirt a small amount of saline into the lungs. They remove the liquid and send it to a lab. The liquid they bring up from your lungs contains all kinds of info. They will lab test it for various organisms, inflammation cells, and other abnormal things. They may snip a tiny piece of your lung while down there to biopsy it. They did mine that way.

ANTIBIOTIC .. MYCOBACTERIUM SUSCEPTIBILITY PANEL TESTING *testing and therefore should provide—or should ensure—access to susceptibility testing of MTBC against the full panel of primary antituberculous drugs, as well as against secondary drugs, when indicated. * Currently, universally accepted guidelines concerning the indications for susceptibility testing of MAC do not exist. However, investigators who have extensive experience with MAC have recommended that the following isolates be tested

Susceptibility Testing for Mycobacteria http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805 http://cid.oxfordjournals.org/content/31/5/1209.full http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

SOME GOOD RESOURCES ON BRONCHIECTASIS:
BRONCHIETASIS-SYMPTOMS OF Symptoms of bronchiectasis http://www.nhs.uk/Conditions/Bronchiectasis/Pages/Symptoms.aspx
BRONCHIETASIS-BREATHING VIDEO WONDERFUL INFO FROM M.D. Dr. William Girard of University of Texas Health

AND GOOD RESOURCES
https://www.chss.org.uk/documents/2013/08/c4_bronchiectasis-pdf.pdf http://bronchiectasis.com.au/bronchiectasis

You said ” he is mentioning previous hemoptysis which I have no idea what that is. I will have to check Dr Google!”
From my File Cabinet:
BLOOD/BLEEDING- BRONCHIECTASIS Coughing up of blood (hemoptysis) is common because the damaged airway walls are fragile and have increased numbers of blood vessels. Hemoptysis may be the first or only symptom of Bronchiectasis. you said “I noticed a blood in my sputum I got alarmed again” .. I can only tell you .. the first time I spoke with my Mayo doctor about coughing up blood .. he REALLY did not react much at all .. his response “What was the quantity .. a quarter cup .. a tablespoon .. a teaspoon?” Hmmm! Mine was merely at different times a blood clot perhaps the size of less than a dime .. and/or the sputum MIXED with blood .. NEVER the quantity he was speaking of! So my question to you is judge by the quantity of blood and the frequency. Then evaluate from some of the information I am going to give you below from my File Cabinet. Keep us posted .. let us know what your thoughts are after you have evaluated. Hope you find this helpful! Hugs to you! Katherine From Member @colapyrus, Jan I have also had hemoptysis (Hemoptysis is the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs) – several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe)

You said ” very dry mouth” .. these item may or may not help you .. but
From my File Cabinet:
DRY MOUTH Due to dry mouth I use Biotene toothpaste, Dry Mouth Oral Rinse and Oral Health Xylimelts at night https://smile.amazon.com/Orahealth-Xylimelts-Mints-80-Count-Boxes/dp/B001A40M1M/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1484006212&sr=1-2&keywords=Oral+Health+Xylimelts

If you chose to come to Mayo Clinic: Canadian Citizen As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq http://www.catie.ca/fact-sheets/infections/mycobacterium-avium-complex-mac

REPLY
@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

Jump to this post

@contentandwell, hope all is well, what you saw is postural drainage with percussion. In nursing school we were taught to do that to patents after surgery to prevent pneumonia. There is a young couple on utube called “the frey life”, she has cystic fibrosis and they document their life. She has cf bronchiectasis, we have non-cf bronciectasis. Her cf affects her other organs too so she has a lot of problems but she is so upbeat and full of life and hope and faith. They’re a joy to watch and you will be hooked. Shes in the hospital alot and he is right there by her side helping. They were waiting on her lab results to find out what kind of NTM she had on top of her psuedomonis and fungal infection. She was loosing so much wait they put a feeding tub in her nose but her constant coughing wouldnt alow it to stay in. She was also meeing with a transplant team for her lungs. She is so upbeat and happy inspite of her situation. Everyone should go to utube and search for “the frey life”. I have learned alot from them. Warning, you might get hooked.
Stay stong!
Becky

REPLY

@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

REPLY
Please sign in or register to post a reply.