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New Diagnosis of MAC/MAI & I'm scared
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.
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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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1 Reaction@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.
@jkiemen Hi Jo Ann. Here is the link: http://www.specialpathegenslab.com/ Let us know what you find out. Thnx!
@jkiemen @windwalker Thanks Terri! The exact link for MAC is: https://www.specialpathogenslab.com/environmental-mycobacterium-culture.php
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2 Reactions@lorifilipek Thanks Lori!
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1 Reaction@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?
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.
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?
@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.
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.