Connect
MAI bronchiactasis
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?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
I would probably live at the library!
-
Like -
Helpful -
Hug
1 ReactionThank you, Janeb
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.
-
Like -
Helpful -
Hug
1 ReactionMAI 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
@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.
@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.
@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.
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?
@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