1. < MAC & Bronchiectasis

MAI bronchiactasis

Posted by janeb @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?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Jen_b | @jenblalock | Sep 25, 2017
In reply to @tdrell "janeb....l had a cough and mucus every evening for two years from 5-9pm.after much investigation a..." + (show)
@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

Jump to this post

I would probably live at the library!

REPLY
janeb | @janeb | Sep 27, 2017
In reply to @ling123 "Welcome to the group, @janeb. I have been diagnosed with bronchiectasis and MAC in the fall..." + (show)
@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.

Jump to this post

Thank you, Janeb

REPLY
janeb | @janeb | Sep 27, 2017
In reply to @tdrell "Janeb....welcome to the group.....Ling123 gave an excellent response....she and l have if l recall the same..." + (show)
@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

Jump to this post

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

REPLY
janeb | @janeb | Sep 27, 2017

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

REPLY
2 replies
Jo Ann K | @jkiemen | Sep 27, 2017
In reply to @tdrell "Janeb....welcome to the group.....Ling123 gave an excellent response....she and l have if l recall the same..." + (show)
@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

Jump to this post

 

 

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

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 27, 2017
In reply to @janeb "Dear Windwalker, Thank you so much for your thoughtful suggestions. My name is Jane." + (show)
@janeb

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

Jump to this post

@janeb Hi Jane, have you had a chance to read over @katemn's posts? There are many helpful things in her posts. It would take me all day to type out what I know about NTM/MAC. I am afraid you will need to do a lot of research on this disease. I will look and see if I can find the links again to some helpful sites. Try typing in NTM conference and see what you find.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 27, 2017
In reply to @janeb "Dear Windwalker, Thank you so much for your thoughtful suggestions. My name is Jane." + (show)
@janeb

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

Jump to this post

@janeb, Jane, I am sorry, I should have asked how savvy you are on the computer to do research, and also, if you have the energy to do it. I keep forgetting that some people may be pretty sick and are just not up to the challenge. Your first concern needs to be, are you going to the right doctor to handle this disease? I went for 15 years with not so great private practice doctors; and did not get proper care and treatment. As a result, I have lost 60% of my lung tissue.

REPLY
ling123 | @ling123 | Sep 27, 2017
In reply to @tdrell "Janeb....welcome to the group.....Ling123 gave an excellent response....she and l have if l recall the same..." + (show)
@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

Jump to this post

@jkiemen Hi Jo Ann, I think patients not being able to tolerate the triple antibiotics is only one of the reasons that these drugs are not automatically prescribed. For one thing, there is no guarantee these drugs will work 100% of the time for everybody. In the meantime, they could have negative effects on other organs such as liver and kidney, and possible eyes, when used long-term. For many people with MAC/MAI, the cons outweigh the pros. I was give the option to go on the drug treatment or not. I chose not to and my doctor did agree with me because I'm generally healthy and can live a normal life without decreased lung function. At this point, there is no reason for me to go on the drug treatment and risk damage to my other organs. But things could change and the decision could be reversed if my condition worsens to the point where without the drug treatment my quality of life would be negatively affected, or if my life is on the line.

REPLY
janeb | @janeb | Sep 27, 2017

Dear Windwalker, thank you for your caring thoughts. Yes, I am working with a respected pulmanologist, but he is not doing anything about my MAI. His plan is to watch and wait. But what am I waiting for-the MAI to do more damage? I never had symptoms that would indicate the presence of the MAI in the first place, just lung damage revealed by a cat scan. So am I waiting for more damage that is only revealed by a cat scan. Can MAI be eradicated? If that is possible, why not just bite the bullet and get rid of it once and for all and resume my life with somewhat impaired lungs. I need to know a lot more about this thing that has entered my body and I'm not getting answers. Can I ever be cured? Another question. Does what is left of your lung capacity respond to conditioning excercise. Can you "get Into shape" so to,speak?

REPLY
3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 27, 2017
In reply to @janeb "Dear Windwalker, thank you for your caring thoughts. Yes, I am working with a respected pulmanologist,..." + (show)
@janeb

Dear Windwalker, thank you for your caring thoughts. Yes, I am working with a respected pulmanologist, but he is not doing anything about my MAI. His plan is to watch and wait. But what am I waiting for-the MAI to do more damage? I never had symptoms that would indicate the presence of the MAI in the first place, just lung damage revealed by a cat scan. So am I waiting for more damage that is only revealed by a cat scan. Can MAI be eradicated? If that is possible, why not just bite the bullet and get rid of it once and for all and resume my life with somewhat impaired lungs. I need to know a lot more about this thing that has entered my body and I'm not getting answers. Can I ever be cured? Another question. Does what is left of your lung capacity respond to conditioning excercise. Can you "get Into shape" so to,speak?

Jump to this post

@janeb Dear Jane, I wish I had a definitive answer for you, but I don't. In fact, no doctors will either. This type of infection is the most bewildering of all of the diseases I know of. There are doctors at National Jewish Health that claim that they can cure a small percentage of patients. The cure is known as a 'conversion'. I have watched my lung function decline a little bit each year for the last 15 years. That has been disheartening. I doubt it was from mac eating away my lung tissue. I have a condition called 'Bronchiecstasis' which is a progressive lung disease where one slowly loses lung tissue. People with MAC tend to also have bronchiectstais, and vise-a versa. I saw where you stated that you are 85 yrs old. MAC is a slow growing organism so there is a chance it will not colonize in your lifetime. If I were you, I'd ask about getting a prescription for the nebulized saline and use it twice daily. Rest, good nutrician, and exercise are key. You can call NTM Info & Research at 305-667-6461 and request that they mail you info about MAC (NTM). You can also visit their website and read info at http://www.ntminfo.org

REPLY
View MoreView Less
Please sign in or register to post a reply.