New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics….or not….since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

@flib

@irene, thanks I've made an effort to explain mac and bronc,, printed out articles etc. most cannot relate to it. If I said I had TB they would have some reference for.it ..and would also run like hell. I've given up explaining myself. Mostly I say OK when asked how I am or sorry, not up to talking right now and I always let people know that I'm not contagious. Flib

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@flib and I agree with you – people have no reference for MAC like they do for TB. Family kind of listens friends kind of listen — just a lot easier to say, having a good day or having a soso day, reminding them I am not contagious. Barb

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@ameliar

Thank you for your input. I have been coughing for years. About 2.5 years ago I was told that I had pneumonia… I did not believe it. I always felt like the cough was from a post nasal drip. The DR. put me on levoquin for the supposed pneumonia… the cough went away. It is only the last few months that the cough is back. We have a really bad outbreak of red tide here in FL… I think the pathogens in the air caused stress on my lungs which brought the cough back. I am in the process of doing sputum samples and immunoglobulin tests. After that pulmonary function tests. I have been a runner for 35 years… I still run 5 miles a day. The Dr. says it is the best thing for me to do to keep my lungs strong. I appreciate your encouraging words!!

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@ameliar I've had a cough when I wake up in the morning for at least a year, maybe much longer, with minor coughing once in a while during the day. Like you, I thought that the cough was from post nasal drip. However, in late August a year ago, I coughed up some blood while lap swimming. I went to the ER and was “diagnosed” with walking pneumonia. A CT scan revealed some tree-in-bud in the middle lobe and a few nodules. I was put on levaquin, but within 3 days, my left extremities became numb and tingly so I was switched to Zithromax for a week. It didn’t seem to do anything, because the minor cough persisted. I saw a pulmonologist because the CT scan called the nodules “spiculated,” which typically means cancerous. The pulmonologist practically laughed me out of the office, saying it wasn’t cancer and I was perfectly healthy. Six months later, I had another CT scan because of the nodules. It showed similar results ("redemonstrated focal bronchiectatic changes" but little change in nodule size). The pulmonologist then suggested I do a sputum test. I cough very little, if any, sputum, but was able to get a very small sample last month that tested positive for MAC.
I am otherwise a healthy 70-yr-old, who walks a few miles almost daily and loves working outside on our 2 acres. Until my diagnosis, I was swimming laps 2x/week, which, ironically, I was doing to help my lungs. (About 35 years ago, I worked in a government chemistry lab and had routine health checks, including a lung test that suggested I had low lung capacity. However, at the pulmonogist’s last year, I had a pulmonary function test that came out 100% lung capacity for my age.) After reading about MAC, I've stopped lap swimming and gone back to jogging on my prior swim days. (I used to jog routinely.) I have an appointment with an infectious disease doctor at the U of Michigan Hospital for next month. I’m very sensitive to antibiotics from my sinus infections and have no interest in taking them unless I get very sick without them, so I plan on just continuing to exercise for the present and have a CT scan annually, or as recommended by the doctor.

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@lorifilipek

@ameliar I've had a cough when I wake up in the morning for at least a year, maybe much longer, with minor coughing once in a while during the day. Like you, I thought that the cough was from post nasal drip. However, in late August a year ago, I coughed up some blood while lap swimming. I went to the ER and was “diagnosed” with walking pneumonia. A CT scan revealed some tree-in-bud in the middle lobe and a few nodules. I was put on levaquin, but within 3 days, my left extremities became numb and tingly so I was switched to Zithromax for a week. It didn’t seem to do anything, because the minor cough persisted. I saw a pulmonologist because the CT scan called the nodules “spiculated,” which typically means cancerous. The pulmonologist practically laughed me out of the office, saying it wasn’t cancer and I was perfectly healthy. Six months later, I had another CT scan because of the nodules. It showed similar results ("redemonstrated focal bronchiectatic changes" but little change in nodule size). The pulmonologist then suggested I do a sputum test. I cough very little, if any, sputum, but was able to get a very small sample last month that tested positive for MAC.
I am otherwise a healthy 70-yr-old, who walks a few miles almost daily and loves working outside on our 2 acres. Until my diagnosis, I was swimming laps 2x/week, which, ironically, I was doing to help my lungs. (About 35 years ago, I worked in a government chemistry lab and had routine health checks, including a lung test that suggested I had low lung capacity. However, at the pulmonogist’s last year, I had a pulmonary function test that came out 100% lung capacity for my age.) After reading about MAC, I've stopped lap swimming and gone back to jogging on my prior swim days. (I used to jog routinely.) I have an appointment with an infectious disease doctor at the U of Michigan Hospital for next month. I’m very sensitive to antibiotics from my sinus infections and have no interest in taking them unless I get very sick without them, so I plan on just continuing to exercise for the present and have a CT scan annually, or as recommended by the doctor.

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@lorifilipek Sounds like you have been taking good care of yourself. I share some of your experience in that I have been diagnosed with MAC but am otherwise very healthy and active. I play tennis a few times a week all year round for the past 15 years. I have always coughed for the past 20+ years. Because I had been allergic to all kinds of things, my doctor and I just chalked it up to be the effect of allergies until one day a few years back, I coughed up a large amount of blood out of the blue. That was when MAC was diagnosed. I have chosen to not take the antibiotics that are prescribed for MAC treatment and opted for "wait and see" strategy out of the consideration that the antibiotics may or may not be effective for MAC but these drugs could potentially do a lot of harm to the internal organs as well as eye sight and hearing. My pulmonologist supports my decision. So far I have not coughed up blood anymore and have no trouble with lung capacity or fatigue. Other than the diagnosis that is printed in black and white in my medical records, I feel like a healthy person. I'm still coughing with excessive mucus sometimes. But that is to be expected because of my bronchiectasis, which is most likely the cause for my getting MAC. Based on your description of your current physical condition, I think you have made a very good choice. Thanks for sharing your story with us.

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@ling123

@lorifilipek Sounds like you have been taking good care of yourself. I share some of your experience in that I have been diagnosed with MAC but am otherwise very healthy and active. I play tennis a few times a week all year round for the past 15 years. I have always coughed for the past 20+ years. Because I had been allergic to all kinds of things, my doctor and I just chalked it up to be the effect of allergies until one day a few years back, I coughed up a large amount of blood out of the blue. That was when MAC was diagnosed. I have chosen to not take the antibiotics that are prescribed for MAC treatment and opted for "wait and see" strategy out of the consideration that the antibiotics may or may not be effective for MAC but these drugs could potentially do a lot of harm to the internal organs as well as eye sight and hearing. My pulmonologist supports my decision. So far I have not coughed up blood anymore and have no trouble with lung capacity or fatigue. Other than the diagnosis that is printed in black and white in my medical records, I feel like a healthy person. I'm still coughing with excessive mucus sometimes. But that is to be expected because of my bronchiectasis, which is most likely the cause for my getting MAC. Based on your description of your current physical condition, I think you have made a very good choice. Thanks for sharing your story with us.

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Thanks for writing all of this. I have coughed for years… thought it was allergies and sinus related. I have been a runner for 35 years… I used to run very fast but have really slowed down… I chalked this up to the fact that I am now 65 years old. The doctor finally paid attention when she heard my cough and ordered a chest xray and then a CT scan., I , too, have bronchiectasis and except for the cough I feel fine. How many years have you had the cough.. glad to hear you, too, feel well. The doctor advised me not to try the antibiotic treatments. Have you read any concrete reports on mortality with MAC?

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@ameliar

Thanks for writing all of this. I have coughed for years… thought it was allergies and sinus related. I have been a runner for 35 years… I used to run very fast but have really slowed down… I chalked this up to the fact that I am now 65 years old. The doctor finally paid attention when she heard my cough and ordered a chest xray and then a CT scan., I , too, have bronchiectasis and except for the cough I feel fine. How many years have you had the cough.. glad to hear you, too, feel well. The doctor advised me not to try the antibiotic treatments. Have you read any concrete reports on mortality with MAC?

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@amelia We are the same age. I have been coughing for over 20 years. Many years ago when I was in graduate school, a chest X-ray showed scarring in my lungs and a skin test for TB was positive. Then sputum samples were ordered because of positive skin test. But the test came back negative. The conclusion was that I was exposed to TB bacteria when I was a child. Although I never developed TB, my lungs were scarred because of the exposure. Many years later, my pulmonologist suspects that I got bronchiectasis from scarred lungs and MAC from bronchiectasis. I have not read any report on mortality of MAC and I don't intend to. My pulmonologist and I have decided that I will go to see him every 12 months or as needed if I start to feel worse, to monitor any development in my lungs. But after the big scare of coughing up large amount of blood and spending the night in the ER a few years ago, there has no any such incident since. Each chest X-ray or CT scan continues to show the scarring in my lungs but also show gradual improvement in the cloudiness that showed up when I was first diagnosed with MAC. And as I said before, I feel great and live a very active life. Besides playing tennis regularly, I just came back from a trip out west where my husband and I hiked a 14-mile (round trip) mountain trail with 4,000 feet elevation gain that took us to a height of 11,000 feet above sea level. For this reason, I believe I'm in the clear for as long as my chest X-ray and CT scan do not show worsening condition. As far as I know, if you don't have other underlying lung disease or compromised immune system, it is possible that MAC can clear without treatment. If it's not, you will know because things will worsen. So you'll only worry about it if/when that happens. I'm borrowing @windwalker Terri's motto to wrap up my answer, "Don’t let the worries of tomorrow steal from the joys of today". That is exactly what I live by but can't verbalize it as well as Terri does. So if you are feeling fine, don't let this thing called MAC steal your thunder. At our age, slowing down is a given.

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@ling123 @ameliar Both of you, thanks for your comments. I was very afraid after my pulmonologist's nurse called me and told me about the standard treatment of 3 antibiotics for a year. I'm glad to hear that it is possible to stay healthy without them if you can stay physically fit.

Liked by ling123

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@lorifilipek Absolutely. Do not fret and continue enjoy life as long as you feel fine. Make sure you are otherwise healthy by staying active and eating well. Just be vigillant and keep up your routine visits to your pulmonologist to make sure everything is in check. Worry about things that may or may not happen in the future is a waste of time and energy that we should direct to other worthy things in life.

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I am truly sorry about all of your conditions. This site definitely helps me. It is nice not to feel alone with the diagnosis. I have also learned from so many people who share the same issues.

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@lorifilipek, I'd like to give you some hope. Please read these stories from members of the MAC group. There is a light at the end of the tunnel:
– You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
– A Breath of Fresh Air: Meet @windwalker https://connect.mayoclinic.org/page/about-connect/newsfeed/a-breath-of-fresh-air-meet-windwalker/

Keep posting. Keep asking questions. There's a whole community here to support you.

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@ling123

@lorifilipek Absolutely. Do not fret and continue enjoy life as long as you feel fine. Make sure you are otherwise healthy by staying active and eating well. Just be vigillant and keep up your routine visits to your pulmonologist to make sure everything is in check. Worry about things that may or may not happen in the future is a waste of time and energy that we should direct to other worthy things in life.

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@ling123 @ameliar I noticed that both of you have had sinus issues. Have either of you done nasal flushes? I used to do them every morning when I lived in the Denver area because of dryness and bad air pollution, especially in the winter. I stopped doing them when I moved back to Michigan (and Arizona in the winter) about 10 years ago. After reading your comments and ones in “Lung nodules & scared!” in the Lung Health group, it dawned on me that I should re-start my nasal flushes. Every morning I wake up with a somewhat stuffy nose, the feeling of stuff accumulating in my throat, and coughing. I did a flush this morning and got minor greenish phlegm. I’m wondering if the sinus drainage is going into my lungs during the night and is contributing to the greenish sputum I get once in a while from the coughing. Any thoughts?

Liked by heathert

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@lorifilipek

@ling123 @ameliar I noticed that both of you have had sinus issues. Have either of you done nasal flushes? I used to do them every morning when I lived in the Denver area because of dryness and bad air pollution, especially in the winter. I stopped doing them when I moved back to Michigan (and Arizona in the winter) about 10 years ago. After reading your comments and ones in “Lung nodules & scared!” in the Lung Health group, it dawned on me that I should re-start my nasal flushes. Every morning I wake up with a somewhat stuffy nose, the feeling of stuff accumulating in my throat, and coughing. I did a flush this morning and got minor greenish phlegm. I’m wondering if the sinus drainage is going into my lungs during the night and is contributing to the greenish sputum I get once in a while from the coughing. Any thoughts?

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@lorifilipek Normally the stuff from your nose should not go into your lungs even when you swallow it while lying down. But it is a different story if you have GERD. Many people in this group have GERD that causes your stomach content to go into their lungs during the night. I know I don't have sinus problems but was not sure if I had GERD because people who have silent acid reflux would not have the typical symptoms that others have. My pulmonologist ordered a test that showed I did not have GERD. If you have not tested to see whether you have GERD or not, maybe you should ask for a test. Search on the word GERD in this forum (within MAC & Bronchiectasis) by clicking the magnifying glass symbol on top of the page. You'll find a lot of discussions about that topic. I have done nasal flush many years ago but have not continued. Maybe I should give it another try, too. It'll probably help with my allergy symptoms during the fall season as well as flushing out anything I breathe in indoors (I'm allergic to dust mite).

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@lorifilipek

@ling123 @ameliar I noticed that both of you have had sinus issues. Have either of you done nasal flushes? I used to do them every morning when I lived in the Denver area because of dryness and bad air pollution, especially in the winter. I stopped doing them when I moved back to Michigan (and Arizona in the winter) about 10 years ago. After reading your comments and ones in “Lung nodules & scared!” in the Lung Health group, it dawned on me that I should re-start my nasal flushes. Every morning I wake up with a somewhat stuffy nose, the feeling of stuff accumulating in my throat, and coughing. I did a flush this morning and got minor greenish phlegm. I’m wondering if the sinus drainage is going into my lungs during the night and is contributing to the greenish sputum I get once in a while from the coughing. Any thoughts?

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@lorifilipek Hello, I see that you joined our group a few weeks ago. Welcome to Connect. I am happy to learn that you survived your cancer. That makes you a seasoned warrior in personal health. As for your current diagnosis, it seems like you are catching your lung disease early and doing the right things to cut it off at the pass. Exercise definitely helps to strengthen your lungs, so I am glad that you are jogging. I am curious, did you stop swimming because of what you read here about mac being found in pools?

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@ling123

@lorifilipek Normally the stuff from your nose should not go into your lungs even when you swallow it while lying down. But it is a different story if you have GERD. Many people in this group have GERD that causes your stomach content to go into their lungs during the night. I know I don't have sinus problems but was not sure if I had GERD because people who have silent acid reflux would not have the typical symptoms that others have. My pulmonologist ordered a test that showed I did not have GERD. If you have not tested to see whether you have GERD or not, maybe you should ask for a test. Search on the word GERD in this forum (within MAC & Bronchiectasis) by clicking the magnifying glass symbol on top of the page. You'll find a lot of discussions about that topic. I have done nasal flush many years ago but have not continued. Maybe I should give it another try, too. It'll probably help with my allergy symptoms during the fall season as well as flushing out anything I breathe in indoors (I'm allergic to dust mite).

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@lorifilipek In answer to your question about possibly inhaling particles from post nasal drip, I am pretty sure that it was mentioned at a mac/bronchiectasis convention that I attended in D.C. a few years back. I remember it being said that there is a correlation between post nasal drip and bronchiectasis. In Ayurvedic medicine practices (from India) they recommend daily sinus clearance along with eye rinse and eye clearing. If you do flush your sinuses, you should use sterilized saline designed for that. Boiled tap water doen't guarantee a safe rinse. You may have read on this site that many of us are using the nebulized saline to keep our lungs cleaned. Ironically, it also clears the sinuses and cuts down the post nasal drip. You may want to ask your pulmonolgist about it. It is called hypertonic saline or sodium chloride 7%. I feel like you are a good candidate to benefit from it to thwart off bronchiectasis progression. I will look for the article that contains the chart that shows where the use of inhaled saline can kill various mycobacteriums.

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@lorifilipek

@ling123 @ameliar I noticed that both of you have had sinus issues. Have either of you done nasal flushes? I used to do them every morning when I lived in the Denver area because of dryness and bad air pollution, especially in the winter. I stopped doing them when I moved back to Michigan (and Arizona in the winter) about 10 years ago. After reading your comments and ones in “Lung nodules & scared!” in the Lung Health group, it dawned on me that I should re-start my nasal flushes. Every morning I wake up with a somewhat stuffy nose, the feeling of stuff accumulating in my throat, and coughing. I did a flush this morning and got minor greenish phlegm. I’m wondering if the sinus drainage is going into my lungs during the night and is contributing to the greenish sputum I get once in a while from the coughing. Any thoughts?

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@lorifilipek , yes I have wondered about the sinus drainage going into the lungs also but have never read anything about it.

Liked by lorifilipek

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@windwalker When I nebulise the saline I blow it out my nose which loosens any mucus and you can blow it out.

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