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.

Thank you @windwalker for the informative and sensible reply to my post. I am gradually coming to terms with all of this and appreciate the opportunity to learn more about mac from mentors. I am tolerating the medications and I'm compliant with the medication and the monthly exams that are watching for kidney, liver, eye and hearing changes.
I had never heard of mac before this past year and have had a steep learning curve in trying to understand the bacteria and the treatment. I am more grateful to my respirologist after reading posts by people who were misdiagnosed for lengthy periods of time and I am also encouraged by people who have successfully taken the course of treatment.
This forum also makes it easier for my husband to tolerate my incessant questioning of everything I learn and experience as I feel like I have a place to share my questions and concerns. I can see that attitude really helps to deal with this.
Thank you so much!

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@windwalker Hi Terri (and everyone), I just found the website https://bronchiectasisnewstoday.com/ It has lots of useful articles. There’s one that indicates exercise is helpful, and may explain why I and some other the others here seem to be ok without antibiotics: https://bronchiectasisnewstoday.com/bronchiectasis-treatment/exercise-training-for-bronchiectasis/
Another article from the same website suggests that it’s important for those without treatment or symptoms to be carefully monitored over time: https://bronchiectasisnewstoday.com/2017/10/10/untreated-patients-with-nodular-bronchiectatic-mac-lung-disease-fare-poorly-over-time-study-says/

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@lorifilipek

@windwalker Hi Terri (and everyone), I just found the website https://bronchiectasisnewstoday.com/ It has lots of useful articles. There’s one that indicates exercise is helpful, and may explain why I and some other the others here seem to be ok without antibiotics: https://bronchiectasisnewstoday.com/bronchiectasis-treatment/exercise-training-for-bronchiectasis/
Another article from the same website suggests that it’s important for those without treatment or symptoms to be carefully monitored over time: https://bronchiectasisnewstoday.com/2017/10/10/untreated-patients-with-nodular-bronchiectatic-mac-lung-disease-fare-poorly-over-time-study-says/

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@lorifilipek Thank you for posting these links. It really is important to exercise. I recently returned to the gym after a 3 month break. I take a 70 minute aerobics class twice a week. I already feel much better. And, yes, absolutely; the untreated need to be monitored on a regular basis!

Liked by lorifilipek, lnduh66

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@windwalker

@lorifilipek Thank you for posting these links. It really is important to exercise. I recently returned to the gym after a 3 month break. I take a 70 minute aerobics class twice a week. I already feel much better. And, yes, absolutely; the untreated need to be monitored on a regular basis!

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Exercise does help me to feel better, but I get out of breath a lot. Not on any meds, just vitamins and bone broth. Looking for another doctor and hoping I get a good one. So far all they do is CT scans every 6 months and blood work. I just keep working and moving every day. Does anyone question the intercellulare part of the disease? My bones hurt more and digestive system gets bad at times. I believe that other cells in body are being attached. So tired most days. So appreciate everyone's posts on here.

Liked by Brenda R.

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@cindyrue

Exercise does help me to feel better, but I get out of breath a lot. Not on any meds, just vitamins and bone broth. Looking for another doctor and hoping I get a good one. So far all they do is CT scans every 6 months and blood work. I just keep working and moving every day. Does anyone question the intercellulare part of the disease? My bones hurt more and digestive system gets bad at times. I believe that other cells in body are being attached. So tired most days. So appreciate everyone's posts on here.

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@cindyrue, Hi Cindy. I don't have any personal experience with mai that has disseminated to other parts of the body. I don't think it is very common, but I know it does happen sometimes. Definitely stay on top of that. Discuss this with your doctor. Exercise is one of the best things we can do for ourselves. I go to a cardio class twice a week for 70 mins each. I have to take a Inogen Personal Oxygen Concentrator with me as my oxygen plummets to the low 80's when I exercise. I find that I still have to rest out for a few mins about three times during that 70 minutes. I feel so much better for going though. I also walk 30 mins twice a day. Will you please keep me posted on what your dr says? Are you on the Big 3 antibiotics? If so, could they be making your bones and stomach hurt?

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@ann0616

Hi everyone –
I have been reading your board since my diagnosis last Thursday. I went for a CT scan for a nodule that was possibly lung cancer. He told me good news was I didn’t have lung cancer, but I have bronchiectasis. I live in Madison, WI area and I am 63 years old. I have supposedly had adult onset asthma for last 15-20 years. I had a bad case of measles as a child. Also had whooping cough 15 years ago. I had a severe case of pneumonia two years ago. Since then I have just had shortness of breath and nagging cough mainly in the winter months. That is why I went to the doctor last week. I have an appointment with Pulmonary at UW Madison on January 30th. But after reading my CT results (which I had to Google to find out what things meant) I fell apart yesterday that MAI was mentioned. Notes from CT scan are:
IMPRESSION: Multiple small pulmonary nodules. Nodules abutting the pleura may
represent intrapulmonary lymph nodes. In addition, there are areas of mucous
plugging and bronchiectasis. The constellation of nodules and bronchiectasis can
be seen in patients with MAI infection. Focal area of groundglass nodules in a
bronchovascular distribution may also represent infectious etiology. Mediastinal
lymph nodes may be reactive. Pulmonary consultation could be considered.

Thanks for all the info.

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@ann0616

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Hi Ann
I just saw your post and it is only one of two that mention
Ground glass nodules . I just had a Ct and they found
6 mm ground glass nodule and bronchiectasis. They recommend waiting a year to see if Ground glass nodule
Grows . Do you know anything obout GGNs. Just got over a bad case of walking pneumonia .
Thank you for Amy info

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@cindyrue

Exercise does help me to feel better, but I get out of breath a lot. Not on any meds, just vitamins and bone broth. Looking for another doctor and hoping I get a good one. So far all they do is CT scans every 6 months and blood work. I just keep working and moving every day. Does anyone question the intercellulare part of the disease? My bones hurt more and digestive system gets bad at times. I believe that other cells in body are being attached. So tired most days. So appreciate everyone's posts on here.

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@cindyrue
Hi there, like you I keep pushing myself to work, work out, and I am not being treated with The Big 3 right now. YES I agree at times my other body systems are being attacked, especially GI tract, though the research says the disease only spreads outside the lungs in those with immunodeficiency (HIV). Just got another sputum sample back with more fungus, so my ID doctor just ordered another sinus & chest CT scan in hopes of determining if it is just a colonizer, or if it is causing disease. Just had both scans in January, I will glow in the dark before long, LOL! Prayers for all.

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@lindaphilly

Hi Ann
I just saw your post and it is only one of two that mention
Ground glass nodules . I just had a Ct and they found
6 mm ground glass nodule and bronchiectasis. They recommend waiting a year to see if Ground glass nodule
Grows . Do you know anything obout GGNs. Just got over a bad case of walking pneumonia .
Thank you for Amy info

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@lindaphilly Hi Linda
My doctor also wants to watch and wait on my ground glass nodules and bronchiectasis. They did not seem concerned at all about the nodules. They told me that it could be from having pneumonia and whooping cough in the past. I had a horrible case of pneumonia two years ago. I was in the hospital for a week. I’m sorry that I can’t tell you any more about GGN. Let me know what you find out.

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Thank you Ann. I am going to see a pulmonary doctor
End of April. I will let you know what I find .
I didn't like what I read about the GGN. I know most pulmonary nodules are benign . But from what I read
GGN could be an indication of early stage of adenocarcinona if the GGN grows .

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Yes, that is absolutely correct. I speak from experience with that. And that is why if you have nodules 5cm and larger your doctor might suggest having them biopsied especially if there is a pattern of lung cancer and MAC in the family.

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@ann0616

@lindaphilly Hi Linda
My doctor also wants to watch and wait on my ground glass nodules and bronchiectasis. They did not seem concerned at all about the nodules. They told me that it could be from having pneumonia and whooping cough in the past. I had a horrible case of pneumonia two years ago. I was in the hospital for a week. I’m sorry that I can’t tell you any more about GGN. Let me know what you find out.

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@ann0616 Sound like what happened to me. Big pneumonia out of the blue. Hospital then discovered MAC. Watched with CT for about 2.5 years and there was slight worsening over time until finally I was put on the Big 3. I am finishing Month 15. The past 3 months have been a bit harder to take. I have a CT next month and it will be decided if I can come off them.

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@lindaphilly etc….there are guidelines etc for nodules and follow up….google “ Fleischner Guidelines” tdrell

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