New Diagnosis of MAC/MAI & I'm scared

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.

Hi @ann0616 you may have noticed I moved your post to this existing thread so that you can learn more from others who have been diagnosed with MAC or MAI. Simply click VIEW & REPLY in your email notification and you can read more in this thread.

I wanted to thank @ling123 and @egayle187 for responding to your post.

Back to you @ann0616 how have you been feeling since your last doctor's appointment?

I am taking Mirtazapine over past five weeks and am delirious and having awful nightmares that do not go away. Also on other meds. Has anyone been prescribed this med and had severe side effects?

@macjane Yes I have, I should still be on it but had to stop taking it. It was making me a bit off balance walking and I was driving to the left at times, not good. One night we had an earthquake and I could barely crawl to the door to get out, it really knocked me out but was great for anxiety and memory.

@macjane I have not taken it. Can they change you to something else? Why do you take it?

@ann0616 Kind of sounds like what I had happen. Generally healthy until a sudden case of pneumonia. Just completely out of the blue. It scars the heck out of you. I am the same age and also live in Wisconsin about 20 miles from Lake Geneva. I am seeing Pulmonary in Milwaukee at St Luke's and had another opinion at Froedert. I was diagnosed in 2015 and started treatment in 2017. My first dose was Nov 30, 2017. I have had several CT's along the way. Each time I have one I go into panic mode because I am scared. I have a CT scheduled for March to see if I can stop the meds. Now I developed a UTI so dealing with that. Nothing like being on and additional antibiotic and trying to find one that is not contraindicated with the BIG 3. (Azitromycin, Ethambutol and Rifampin) By the way I was thinking I may have been exposed when I went to a conference at the Monona Terrace as I was in the small closed room where they had the hot tub for a while.

Supposedly for depression and sleep. The most god awful nightmares.

Hi Ann -
Fear is a normal reaction to a diagnosis like this, especially if you rely on Google. Just be sure what you are reading comes from a reliable source like this monitored chat, or a medical source like NIH, Lung Association, etc.
If your CT shows evidence of infection, Pulmonology will most likely take sputum specimens to culture and find out which infection(s) you have. Be prepared to wait - these are slow-growing bugs, and it can take up to 6 weeks for them to grow out. Then they are subjected to antibiotic sensitivity testing so you get the most effective drugs for your strain. Also, the severity of symptoms and signs of damage or active infection are evaluated to decide whether to treat now, or wait and watch.
Most of us have limitations from the condition, and usually some side effects from the medication, but learn to live with it. In my case, tolerating the side effects sure beats the cough, fatigue and weakness that were gradually consuming my life. Bring your questions and concerns to the group - we have a wide range of experiences, many have other issues, and we try to support one another. As you progress from diagnosis to treatment, there are a number of topical discussions where you can post.

@cindyrue Hi Cindy. It is rare, but mac can spread to your digestive tract and other areas. Are you addressing this with your physician? Are you seeing a good and knowledgible pulmonologist and/or infectious disease specialist?

Hi, Terri M and thank you for your participation as a mentor. I've just joined this forum, and am considering the antibiotic "big 3" treatment for MAC which was diagnosed approx. 6 months ago. Have read so many posts which describe concerns which I identify with, and am somewhat comforted to know that others are coping in many positive ways. Just the other day my infectious disease Doc asked about hot tub use! I find that the jets/hot water to be so therapeutic for arthritic spine etc (I'm 73 and fairly active) I hate to give that up! I live in CA, Monterey Bay, where it's often foggy/rainy and really enjoy a morning or late evening soak. Have you discontinued using a hot tub?