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janeb
@janeb

Posts: 6
Joined: Sep 23, 2017

MAI bronchiactasis

Posted by @janeb, Sep 23, 2017

Just diagnosed, with no treatment recommended at this time. I am an 85 year old woman in otherwise good health. Any suggestion on how I should move forward with my life? What things to avoid? How to maintain my good health? What are my reasonable expectation of recovery?

REPLY

Hello @janeb,

We’re glad you’ve joined us here on Connect. I’d sincerely encourage you to go through some of the messages in the following discussion; you will find that it is an incredibly informative group:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

In the meantime, I’d like to introduce you to our Mentor, @windwalker and fellow members @boomerexpert @unicorn @jkiemen @heathert @irene5 @becky33 @ling123 @tdrell; would you join me in welcoming @janeb, and share your experiences and insights?

Welcome to the group, @janeb. I have been diagnosed with bronchiectasis and MAC in the fall of 2014, Like you I have not been on any treatment despite some scare earlier on of coughing up blood (have not done that for over a year). And like you I am in good health except having excess mucus due to bronchiectasis. I am moving forward with my life by eating healthy and staying active. Bronchiectasis is incurable, but manageable. MAC/MAI may be treated with antibiotics. But whether going on the treatment and for how long is a combination of doctor’s opinions and patient choices. After obtaining information from my pulmonary doctor about the pros and cons of the long-term effects of the antibiotics, I decided that the negative effect of these drugs on my body would outrun the positive ones and chose not to take them. My doctor agree with my decision. So far my lung health has not progressed any further in a negative way. However, you will find out by going through postings on this forum that there are many here who have been on the “big three” antibiotics. There are also measures people are taking to expel excess mucus, which is the culprit for trapping bacteria in the bronchial tubes resulting in MAC, MAI or other types of lung infections. Although we share the same disease(s), our physical conditions are very different. If you have other lung illnesses or suppressed immune system, bronchiectasis and MAC/MAI may cause further damage to your lungs without treatment. In that case, taking antibiotics may be a necessity. Hopefully by going through postings on this forum you will find it helpful to make decisions as to what to do going forward. Feel free to ask questions. People are very quick to provide answers or suggestions here. Best of luck and welcome to the group.

Janeb….welcome to the group…..Ling123 gave an excellent response….she and l have if l recall the same risk factor….living in Wisconsin where …along with other parts of USA…higher exposure to NTM ,,,which is the major category MAC falls under. Where do you live?? tell us about the Doctor you go to?
the tests done to conclude your diagnosis….your symptoms that led up to the testing?
In the meantime, if you go online…go to NTMinfo.org and start the education about this condition..by looking at the videos…
at Youtube.com and type in ntm.conference at national Jewish 2015 and the ones from 2016…..these are 45 minute sessions geared for lay folks on varying topics taped at the workshops given at the specialty respiratory clinic National Jewish health in 2015 and 2016 .
some of this group went to a workshop in May in Washington DC….and somewhere in these emails there are the links to that!!
and to further overwhelm you with resourses….In Denver on saturday OCtober 21st there will be another all day workshop at NJH for people with NTM….no doubt for the majority not able to attend…the videos of the conference will be presented on line a few months later.
tdrell

janeb….l had a cough and mucus every evening for two years from 5-9pm.after much investigation a bronchoscopy done…sample taken and grown revealed l had MAC….refused local dr prescriptions of the big three…had already thanks to this site known l had to go to specialists…..went to National Jewish Health in Denver this past January 2017 where l was told that …based on results of 3 sputum cultures grown in the gold standard for NTM way…and a low dose chest CAT scan read by a radiologist certified in reading chest CAT scans and an infectious disease DR and a pulmonlogist that l did not have active pulmonary infection..that the MAC found in lungs had been a result of aspiration into my lungs from my stomach….where the water l drank from Wisconsin pipes is full of NTM…..Hence my RX is geared to managing my gastric aspiration ( Gerd).
while there, they tested me for Asthma which l had been treated for past 30 years…and many thousands of dollars in inhalors etc…and found out l did not have it…also found out l am a carrier for an enzyme which might cause pulmonary issues to my children/children if they mate up with carriers. tdrell

Liked by janeb

@tdrell

janeb….l had a cough and mucus every evening for two years from 5-9pm.after much investigation a bronchoscopy done…sample taken and grown revealed l had MAC….refused local dr prescriptions of the big three…had already thanks to this site known l had to go to specialists…..went to National Jewish Health in Denver this past January 2017 where l was told that …based on results of 3 sputum cultures grown in the gold standard for NTM way…and a low dose chest CAT scan read by a radiologist certified in reading chest CAT scans and an infectious disease DR and a pulmonlogist that l did not have active pulmonary infection..that the MAC found in lungs had been a result of aspiration into my lungs from my stomach….where the water l drank from Wisconsin pipes is full of NTM…..Hence my RX is geared to managing my gastric aspiration ( Gerd).
while there, they tested me for Asthma which l had been treated for past 30 years…and many thousands of dollars in inhalors etc…and found out l did not have it…also found out l am a carrier for an enzyme which might cause pulmonary issues to my children/children if they mate up with carriers. tdrell

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@tdrell
Just wanted to chime in
I was wondering how do they check if you don’t really have asthma. I have been diagnosed with asthma since I was a teenager.
If you don’t have asthma what were you diagnosis with and do they treat it the same as asthma or is that part of the gerd. I haven’t been checked for acid reflux yet and wonder if I may have it.
Thanks!
Shari
@ pfists

@janeb Hello, and welcome to our group. Is your name Jan? Funny, so many of us were misdiagnosed for many years as having asthma when we did not. I think it was the favorite basket of which doctors threw us when they did not take the time to test for it properly. @tdrell and @ling123 have given you some very good advice on resources to learn more about this disease. Knowledge is power. Where exactly in Wis did you drink the water (what municipal water company) we have SO many people from Wis. sick with MAC. Something needs to be done about it about the treatment center level. You did absolutely the right thing by going to National Jewish Health for this. You are in good hands there. For now to answer your question about what you can do to protect yourself; turn up the temperature on your hot water heater to 130 at least, run the water through your pipes only using the hot water for five full minutes before using the water. That is supposed to kill the NTM sticking to the inside of your pipes. Take baths only, avoid showering as the MAC favors spreading by vapor. Keep current on flu & pneumonia vaccines every fall. Avoid sick people and avoid visiting those in the hospital or nursing homes as there are terrible drug-resistant bugs there. Stay active and positive and follow your doctor’s *recommendations. I put in an aterisk because we must also listen to our bodies and gut feelings. Some people who were on the BIG 3 antibiotics, chose to stop because their bodies were not tolerating it, some people switched doctors because their gut feeling was telling them they were not getting proper care. The bottom line is “we must be our own best advocate for ourselves” as our previous mentor, Katherine, used to always say. Katherine had so much sage advice for us in the past. You can visit her messages at @katemn. Hang with us Jan, and we can help you navigate you through living with MAC. We are also a genuinely caring bunch!

@tdrell

janeb….l had a cough and mucus every evening for two years from 5-9pm.after much investigation a bronchoscopy done…sample taken and grown revealed l had MAC….refused local dr prescriptions of the big three…had already thanks to this site known l had to go to specialists…..went to National Jewish Health in Denver this past January 2017 where l was told that …based on results of 3 sputum cultures grown in the gold standard for NTM way…and a low dose chest CAT scan read by a radiologist certified in reading chest CAT scans and an infectious disease DR and a pulmonlogist that l did not have active pulmonary infection..that the MAC found in lungs had been a result of aspiration into my lungs from my stomach….where the water l drank from Wisconsin pipes is full of NTM…..Hence my RX is geared to managing my gastric aspiration ( Gerd).
while there, they tested me for Asthma which l had been treated for past 30 years…and many thousands of dollars in inhalors etc…and found out l did not have it…also found out l am a carrier for an enzyme which might cause pulmonary issues to my children/children if they mate up with carriers. tdrell

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Pfists, I was diagnosed at age 43 as having non allergic asthma.it followed a severe viral respiratory infection. Diagnosis was based on symptoms…and positive responses to typical asthma meds…oral bronchial dilators…..inhalers…..it took a year of being on 3 different inhalers taken twice a day to get lungs “healed”
I needed no meds unless I got a cold….then you know what hit the fan and I had to be back on all the meds for 4-6 weeks.
Until I went to NJH, there was
Never a question that I had asthma…. but the “gold standard” for confirmation was done called the” Methocholine Challenge test”
8 syringes of increasing stronger doses of the chemical methocholine were given to me thru a nebulizer while I was hooked up to spirometer /computer…..the RT and Pulmonologist were surprised that I had NO changes to my breathing even with the 8th syringe of Methocholine.tdrell

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@tdrell

janeb….l had a cough and mucus every evening for two years from 5-9pm.after much investigation a bronchoscopy done…sample taken and grown revealed l had MAC….refused local dr prescriptions of the big three…had already thanks to this site known l had to go to specialists…..went to National Jewish Health in Denver this past January 2017 where l was told that …based on results of 3 sputum cultures grown in the gold standard for NTM way…and a low dose chest CAT scan read by a radiologist certified in reading chest CAT scans and an infectious disease DR and a pulmonlogist that l did not have active pulmonary infection..that the MAC found in lungs had been a result of aspiration into my lungs from my stomach….where the water l drank from Wisconsin pipes is full of NTM…..Hence my RX is geared to managing my gastric aspiration ( Gerd).
while there, they tested me for Asthma which l had been treated for past 30 years…and many thousands of dollars in inhalors etc…and found out l did not have it…also found out l am a carrier for an enzyme which might cause pulmonary issues to my children/children if they mate up with carriers. tdrell

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@tdrell I had the exact same test at NJH with the same results. I was always told I had exercise induced asthma because as a runner, I would wheeze during while running during certain times of the year. I do wonder if the methocholine challenge tests for that? Questions. Always questions.

@tdrell

janeb….l had a cough and mucus every evening for two years from 5-9pm.after much investigation a bronchoscopy done…sample taken and grown revealed l had MAC….refused local dr prescriptions of the big three…had already thanks to this site known l had to go to specialists…..went to National Jewish Health in Denver this past January 2017 where l was told that …based on results of 3 sputum cultures grown in the gold standard for NTM way…and a low dose chest CAT scan read by a radiologist certified in reading chest CAT scans and an infectious disease DR and a pulmonlogist that l did not have active pulmonary infection..that the MAC found in lungs had been a result of aspiration into my lungs from my stomach….where the water l drank from Wisconsin pipes is full of NTM…..Hence my RX is geared to managing my gastric aspiration ( Gerd).
while there, they tested me for Asthma which l had been treated for past 30 years…and many thousands of dollars in inhalors etc…and found out l did not have it…also found out l am a carrier for an enzyme which might cause pulmonary issues to my children/children if they mate up with carriers. tdrell

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Here we go: The test is useful in the clinic to diagnose chronic asthma, but has a low sensitivity for the screening of EIA. The benefits of the test are that it is easily accessible, reproducible, not time-consuming, inexpensive and independent of special equipment such as treadmill and cycle ergometer. The disadvantages are that the test is laboratory-dependent and does not measure the outdoor environments stress which the athletes are exposed to during the exercise[6].

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3289196/

Liked by tdrell

@tdrell

janeb….l had a cough and mucus every evening for two years from 5-9pm.after much investigation a bronchoscopy done…sample taken and grown revealed l had MAC….refused local dr prescriptions of the big three…had already thanks to this site known l had to go to specialists…..went to National Jewish Health in Denver this past January 2017 where l was told that …based on results of 3 sputum cultures grown in the gold standard for NTM way…and a low dose chest CAT scan read by a radiologist certified in reading chest CAT scans and an infectious disease DR and a pulmonlogist that l did not have active pulmonary infection..that the MAC found in lungs had been a result of aspiration into my lungs from my stomach….where the water l drank from Wisconsin pipes is full of NTM…..Hence my RX is geared to managing my gastric aspiration ( Gerd).
while there, they tested me for Asthma which l had been treated for past 30 years…and many thousands of dollars in inhalors etc…and found out l did not have it…also found out l am a carrier for an enzyme which might cause pulmonary issues to my children/children if they mate up with carriers. tdrell

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Jenblalock….what would we do without Dr Google for our research into the “why’s??? tdrell

@tdrell

janeb….l had a cough and mucus every evening for two years from 5-9pm.after much investigation a bronchoscopy done…sample taken and grown revealed l had MAC….refused local dr prescriptions of the big three…had already thanks to this site known l had to go to specialists…..went to National Jewish Health in Denver this past January 2017 where l was told that …based on results of 3 sputum cultures grown in the gold standard for NTM way…and a low dose chest CAT scan read by a radiologist certified in reading chest CAT scans and an infectious disease DR and a pulmonlogist that l did not have active pulmonary infection..that the MAC found in lungs had been a result of aspiration into my lungs from my stomach….where the water l drank from Wisconsin pipes is full of NTM…..Hence my RX is geared to managing my gastric aspiration ( Gerd).
while there, they tested me for Asthma which l had been treated for past 30 years…and many thousands of dollars in inhalors etc…and found out l did not have it…also found out l am a carrier for an enzyme which might cause pulmonary issues to my children/children if they mate up with carriers. tdrell

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I would probably live at the library!

Liked by tdrell

@ling123

Welcome to the group, @janeb. I have been diagnosed with bronchiectasis and MAC in the fall of 2014, Like you I have not been on any treatment despite some scare earlier on of coughing up blood (have not done that for over a year). And like you I am in good health except having excess mucus due to bronchiectasis. I am moving forward with my life by eating healthy and staying active. Bronchiectasis is incurable, but manageable. MAC/MAI may be treated with antibiotics. But whether going on the treatment and for how long is a combination of doctor’s opinions and patient choices. After obtaining information from my pulmonary doctor about the pros and cons of the long-term effects of the antibiotics, I decided that the negative effect of these drugs on my body would outrun the positive ones and chose not to take them. My doctor agree with my decision. So far my lung health has not progressed any further in a negative way. However, you will find out by going through postings on this forum that there are many here who have been on the “big three” antibiotics. There are also measures people are taking to expel excess mucus, which is the culprit for trapping bacteria in the bronchial tubes resulting in MAC, MAI or other types of lung infections. Although we share the same disease(s), our physical conditions are very different. If you have other lung illnesses or suppressed immune system, bronchiectasis and MAC/MAI may cause further damage to your lungs without treatment. In that case, taking antibiotics may be a necessity. Hopefully by going through postings on this forum you will find it helpful to make decisions as to what to do going forward. Feel free to ask questions. People are very quick to provide answers or suggestions here. Best of luck and welcome to the group.

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Thank you, Janeb

@tdrell

Janeb….welcome to the group…..Ling123 gave an excellent response….she and l have if l recall the same risk factor….living in Wisconsin where …along with other parts of USA…higher exposure to NTM ,,,which is the major category MAC falls under. Where do you live?? tell us about the Doctor you go to?
the tests done to conclude your diagnosis….your symptoms that led up to the testing?
In the meantime, if you go online…go to NTMinfo.org and start the education about this condition..by looking at the videos…
at Youtube.com and type in ntm.conference at national Jewish 2015 and the ones from 2016…..these are 45 minute sessions geared for lay folks on varying topics taped at the workshops given at the specialty respiratory clinic National Jewish health in 2015 and 2016 .
some of this group went to a workshop in May in Washington DC….and somewhere in these emails there are the links to that!!
and to further overwhelm you with resourses….In Denver on saturday OCtober 21st there will be another all day workshop at NJH for people with NTM….no doubt for the majority not able to attend…the videos of the conference will be presented on line a few months later.
tdrell

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hi tdrell, I am not familiar with the NTM acronym, please explain. I live in Seattle WA. My doctor is a phd/md who specializes in lung deseases. I have had X-rays, Ct, na breathing test and sputum analysis. Current plan is to watch and wait. This is what is not clear to me. My doctor told me that the deterioration of my bronchial tubes was due to MAI, but the flare ups are caused by a secondary bacterium that enters my lungs as a fortuitous event caused by a build up of mucus. That can be successfully dealt with by a number of antibiotics. Now my question is: what is the purpose of the triple antibiotic procedure. I assume it is to attack the MAI. That leads to another question: what about the MAI? Is it continuing to destroy my bronchial tube as we speak. How do I know? What are the symptoms? How does one know? Do I have to have another Cat scan to know? This is all very confusing to me. I hope someone can explain this whole process to me in very simple terms. What about the MAI? What is it doing. Does it go into remission, and how would I know. Does the MAI have symptoms other than lung damage. All very confusing and I’m not well enough informed to even ask intelligent questions.
Thank you all for you kind thoughts and offers of support. It means a lot to me,
Best regards,
Janeb

Dear Windwalker,
Thank you so much for your thoughtful suggestions. My name is Jane.

@tdrell

Janeb….welcome to the group…..Ling123 gave an excellent response….she and l have if l recall the same risk factor….living in Wisconsin where …along with other parts of USA…higher exposure to NTM ,,,which is the major category MAC falls under. Where do you live?? tell us about the Doctor you go to?
the tests done to conclude your diagnosis….your symptoms that led up to the testing?
In the meantime, if you go online…go to NTMinfo.org and start the education about this condition..by looking at the videos…
at Youtube.com and type in ntm.conference at national Jewish 2015 and the ones from 2016…..these are 45 minute sessions geared for lay folks on varying topics taped at the workshops given at the specialty respiratory clinic National Jewish health in 2015 and 2016 .
some of this group went to a workshop in May in Washington DC….and somewhere in these emails there are the links to that!!
and to further overwhelm you with resourses….In Denver on saturday OCtober 21st there will be another all day workshop at NJH for people with NTM….no doubt for the majority not able to attend…the videos of the conference will be presented on line a few months later.
tdrell

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MAI falls under the term Nontubercule Mycobacterium.  It is too bad your MD did not explain it. MAI is contracted from the environment. There are several types

and a culture should be sent to identify the species and if there is any resistance to Azithromycin.  The treatment is triple antibiotics that are taken for usually over a year (given 3 times a week). The reason they don’t just prescribe is that many people

do not tolerate the therapy so they wait until the person is symptomatic.  (that does seem odd doesn’t it).  I also worry about what the MAI is doing down there from day to day.   There are allot of resources. The best thing to do is start reading about it

and make a list of questions for your MD.. I hope you are seeing a Pulmonolgist and or Infectious Disease MD.

I keep hoping new research will find new and better treatment because this is getting to be found more often.  It is sad to say, but if more people were found

to have this and it was reportable to the CDC, maybe there would be more of a push to develop and trial more treatments.  For something to get into research, it likely has to be profitable to the drug companies if they needed to develop an new antibiotic.

So lets hope some of our other researchers are picking up the ball and running with it.

 

JO Ann K

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