1. < MAC & Bronchiectasis

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.

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 16, 2018
In reply to @jkiemen "@lorifilipek Hot Spots of Wisconsin.. Allot of people in Wisconsin travel to Florida and Arizona for..." + (show)
@jkiemen

@lorifilipek Hot Spots of Wisconsin.. Allot of people in Wisconsin travel to Florida and Arizona for half the year. So are they getting Mac there or getting in in Wisconsin and being diagnosed in those other locations. I personally have been to other states briefly for conferences etc. So I am assuming I got it here in Wisconsin. I was diagnosed after traveling to Minnesota about a month prior. Maybe I got it there, but I am assuming I got Pneumonia from that trip and the MAC had probably been brewing making me more susceptible. The CDC really needs to be looking at this more. We surely can see how this group has grown. It has go to be out there more than anyone really knows

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@jkiemen Girl, you hit the nail on the head! Our numbers are growing exponentially. The CDC really does need to axknowlege this. Wr should all barrage them with letters.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 16, 2018
In reply to @jkiemen "@ windwalker Do you have the name of a lab that tests for MAC?" + (show)
@jkiemen

@ windwalker Do you have the name of a lab that tests for MAC?

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@jkiemen I will have to search for that again. It may be on the dicussian board. But, I will search through my notebook too. Will get back to you.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 16, 2018
In reply to @jkiemen "@ windwalker Do you have the name of a lab that tests for MAC?" + (show)
@jkiemen

@ windwalker Do you have the name of a lab that tests for MAC?

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@jkiemen Hi Jo Ann. Here is the link: http://www.specialpathegenslab.com/ Let us know what you find out. Thnx!

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1 reply
egayle187 | @egayle187 | Jan 16, 2019
In reply to @cindyrue "Was diagnosed in 2015 and now just being watched - ct scan every 6 months. Did..." + (show)
@cindyrue

Was diagnosed in 2015 and now just being watched - ct scan every 6 months. Did 3 drugs for 9 months and they did not help. Very sad about doctor just calling it bronchoetiitis - I know I spelled words wrong. I believe this disease is attacking my bones and digestive system.

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@cindyrue...I'd go with your gut on this one. Your intuition that there is more damage than just the bronchiectasis can give you the energy to make changes.
You need a thorough testing and diagnostic experience that National Jewish Hospital or Mayo Clinic can provide. If you are being followed by a pulmonologist, s/he is only concerned with the lungs. Get copies of all your records and CT scans so that whomever you consult will have all the information.
More info on your symptoms would help us help you. Could you describe your journey and symptoms?

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1 reply
cindyrue | @cindyrue | Jan 16, 2019

Was diagnosed in 2015 and now just being watched - ct scan every 6 months. Did 3 drugs for 9 months and they did not help. Very sad about doctor just calling it bronchoetiitis - I know I spelled words wrong. I believe this disease is attacking my bones and digestive system.

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3 replies
Ethan McConkey, Moderator | @ethanmcconkey | Jan 16, 2019
In reply to @cindyrue "Was diagnosed in 2015 and now just being watched - ct scan every 6 months. Did..." + (show)
@cindyrue

Was diagnosed in 2015 and now just being watched - ct scan every 6 months. Did 3 drugs for 9 months and they did not help. Very sad about doctor just calling it bronchoetiitis - I know I spelled words wrong. I believe this disease is attacking my bones and digestive system.

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Hi @cindyrue you may have noticed I moved your post to this existing discussion on new diagnosis of MAC/MAI so that you can read what others have said and how other have approached this disease.

I wanted to thank @egayle187 for responding to your post, and also introduce you to fellow members @windwalker @jkiemen and @margiebanks as they can offer support for handing these lung disease diagnoses.

Back to you @cindyrue what has your doctor said about the disease attacking your bones and digestive system? And as @egayle187 asked, what has your journey been with this disease?

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1 reply
ling123 | @ling123 | Jan 16, 2019
In reply to @ann0616 "Hi everyone – I have been reading your board since my diagnosis last Thursday. I went..." + (show)
@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 Hi Ann, I also live in Madison. I have been diagnosed with bronchiectasis and MAC/MAI in the fall of 2014 after coughing up large amount of blood and an overnight ER stay due to MAC/MAI infection. The possibility of TB or lung cancer did cross my mind. But it turned out to be neither after the CT scan and sputum tests. It was suspected that I might have been exposed to TB as a child due to positive skin test although the disease never developed. Such an exposure was attributed to the development of my bronchiectasis, which in turn makes me susceptible to MAC/MAI infection. Although I do cough and have excessive mucus sometimes, especially in cold weather, I don't have other issues such as shortness of breath, fatigue, etc. I don't know which pulmonologist at UW hospital you will be seeing. I have been seeing Dr. Scott Ferguson for the past 4 years. I'm not on any meds for the time being. Dr. Ferguson and I agreed that we would take a wait-and-see approach and will only consider getting on the drug treatment when it becomes necessary. So far my CT scan and chest X-ray results show no worsening of my bronchial tubes. I am able to lead a normal and active life. For that reason, I'm probably not able to offer you much help in the direction of possible treatment for your case. But I do want to lend you emotional support and to let you know that there is no reason to panic at the mention of MAI. Until I came to this group, I had no idea bronchiectasis and MAC/MAI are such prevalent diseases. Although there is no cure for bronchiectasis, MAC/MAI is treatable. I don't even know if I'm still positive with MAC. Since there is no new development in the CT scans and chest X-rays for the past 4 years, I think it has either gone away on its own or has gone into remission. Either way, I'm happily living my life without worries. Please keep us posted of what is going on with you and let us know what you find out from your visit to the UW Pulmonary Clinic. There are plenty of people in this group who can offer experiences, suggestions, and support. One thing is for sure, you are not alone in this.

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1 reply
egayle187 | @egayle187 | Jan 16, 2019
In reply to @ann0616 "Hi everyone – I have been reading your board since my diagnosis last Thursday. I went..." + (show)
@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...Welcome to the group.We're glad to hear you will be seeing a pulmonologist and hope that s/he is familiar with bronchiectasis and MAC. Prepare for your visit with copies of your records. If your medical journey is like mine, you have an asthma dr. a PCP and have visited emergency clinics often.Try to make a comprehensive narrative out of it. Also, I've found that the records don't always agree, so check the diagnoses. My clinic doesn't have any info from my specialists.Good luck and please keep us up-to-date.

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