New Diagnosis of MAC/MAI & I'm scared

@sueinoregon
Hello Sue and wellcome to this board my name is Shari.
I am so sorry for the health trials you have been going through. I know how really hard it is to deal with receiving news like that.
I believe it helps a lot to talk with others that are going through the same things or have been through some of the same trials. Also on this board you will learn so much about this disease, treatments and about how we can also be overcomers.
There are others on here on the board with RA I am one of them. I also had to go on SS disability for the RA a number of years ago. I was also on a biological immune suppressant drug 7 years ago but that wasn't when I was diagnosed with MAC but was diagnosed with Pseudomonas which had gone on for months before I got in to see a pulminologist.
The pulmonologist then took me off the immunological suppressing drug for RA immediately. I have been doing very well for 7 years with the RA while being on two different drugs to treat it that don't suppress my immune system. One is minocycline three times a week the other is plaquenil.
I also have been testing negative for Mycobacterium Abcessus for a year and a half now. I had tested positive for one year prior and did not do the antibiotics but a number of alternative treatments.
There is hope you can get through this. You need to get the best Doctors working for you. Some others here didn't take antibiotics some rotate one antibiotic for one week every month and some have or are taking the antibiotics.
Also there are some treatments coming on the scene that are easier like nebulized antibiotics or inhaled nitric oxide to name a couple.
Hang in there we are here for you!
Shari

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?

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.

@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.

@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 @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?

@ann0616 Hi Ann. Please don't freak out just yet. The report said 'the constellation of nodules CAN be seen in A patient with mai.' Meaning it is a possibility. It didn't say 'this patient' has it. Many of us, including myself have had nodules in the lungs, but not diagnosed with mai. Wait for the test results to come back. Wisconsin is one of the states that has the highest incidence of mac in our country. Have you read how to make changes at your home like raising the temperature on your hot water tank? The list of changes can help minimize the amount of mac you are exposed to at home. Your water pipes are the likely culprit. Plumbing pipes are a typical breeding ground where mac likes to colonize, especially in shower heads. The list is posted on the Discussion Board. Do you want me to go thete and retrieve it for you? Or have you already seen 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.

@ann0616 Hi Ann. Please don't freak out just yet. The report said 'the constellation of nodules CAN be seen in A patient with mai.' Meaning it is a possibility. It didn't say 'this patient' has it. Many of us, including myself have had nodules in the lungs, but not diagnosed with mai. Wait for the test results to come back. Wisconsin is one of the states that has the highest incidence of mac in our country. Have you read how to make changes at your home like raising the temperature on your hot water tank? The list of changes can help minimize the amount of mac you are exposed to at home. Your water pipes are the likely culprit. Plumbing pipes are a typical breeding ground where mac likes to colonize, especially in shower heads. The list is posted on the Discussion Board. Do you want me to go thete and retrieve it for you? Or have you already seen it?

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?