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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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What are the laternative treatments you use? I was just diagnosed with MAC and don't want to do antibiotic treatment.
@andyj Hello, and welcome to our group. I know the heartbreak of thinking of giving up something that you love to do. I feel certain that I caught my mac infection from our hot tub. We were in it every night. Hot tubs are a notorious hot bed for mac. This bacteria has become resistant to heat and chlorine. If you cannot give it up; at least use it without turning the jets on. The bubble's effervescence (mist) are what makes the mac airborne and easily inhaled. Also, empty and clean it more than usual. Try Googling 'Hot Tub Lung'. There are many articles about it. You can have the water tested also if it would ease your mind. I have a site of a specialty laboratory that can test it. We got rid of the hot tub after learning more about mac. I also avoid them at any resorts.
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1 Reaction@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?
@ling123 Thanks so much for your reply. I was so stressed two weeks ago because of the unknown but in a better place now. I have heard of Dr. Ferguson. Are you happy with him? I am seeing Dr. Anguiano. I know nothing about him. They wanted to get me in as quick as possible. I am not sure if he even has any knowledge of bronchiectasis. Like you, I don't have many symptoms right now. Again, thanks for the response. Means so much to me to hear from someone else with this diagnosis.
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1 Reaction@egayle187 Thanks so much for your reply. I am following your advice and getting copies of records together. I am so anxious to see a doctor so I know what is going on and to have a plan. Your response is greatly appreciated.
@ethanmcconkey Thanks so much for your response. I have not had a doctor appointment yet. It is next week. Will keep you posted.
@windwalker888 Hi Terri. I was very stressed at first, but have calmed down and waiting to see a doctor next week to see where to go from here. I noticed that several people that responded to me are also from Wisconsin. I did not know about water pipes. Where in the discussion can I find the list? I just assumed it was from having measles, whooping cough and being raised on a farm. I live in a home that is nearly 100 years old. Do age of pipes make a difference? Thanks so much for the info.
@jkiemen I am amazed how many people here are from Wisconsin. I have calmed down so much since writing my first post. I am very anxious to see the doctor though and have a plan. I know so little about all of this. Interesting about Monona Terrace. How long were you in the room with the hot tub? It just makes me wonder about so many possible ways that I could have gotten this.
HI Teri. I'm not Ann but would be interested in seeing the list. Thanks, Tina
@andyj Hi, I see an NTM specialist in NYC at NYU. When I was first diagnosed in 2016, I asked him about going in the hot tub wearing a mask. He laughed, and said he “was never asked that question” and then said he wouldn’t recommend it, but, it’s up to me if I wanted to take the chance. I decided not to take the chance. Thankfully, I never had, and still don’t have, any symptoms of an active infection. I’ve never been on the antibiotics. I DO have lung nodules, which they watch with CT scans yearly, (or sooner if necessary depending on what shows up). I also have bronchiectasis so I use the Aerobika twice a day for lung clearance and I alternately nebulize .9% and 3% saline daily. I guess, ultimately, it’s up to you if you want to take that chance. I was also going to look into salt water hot tubs but never bothered. That might be something you could consider if you REALLY can’t give up the the hot tub. Good luck.
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