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.

@flib

I was also at the DMV. Waited a long time but I didn't mind.Just sat and rested and watched humanity. I'm having a good morning…rare.

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@flib Ah, the fine art of 'people watching'.

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@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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The decision to take the meds is your decision. However, MAC usually does not go away on its own and gets progressively worse over time. In my opinion it is better to take the Big 3 when you are relatively healthy instead of waiting. I waited because of my fear, and that was not a good choice for me. Everyone reacts differently to them – everyone has his/her own journey. If you can’t tolerate seven days, you can do three, and if you can’t tolerate a particular med, it can be changed. This forum has been a Godsend for me and many others. We are all here for you, and Terri our mentor is wonderful. Good luck to you.

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@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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Thank you If can’t tolerate one meds it can be changed thanks to irene5

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@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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@papillion I am almost at my one year mark of taking the Meds. So far am managing. I have a schedule now and think I can get to the full 18months my Pulmonologist was hoping to reach.

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I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

Liked by tdrell

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@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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Hi @papillion you may have noticed I moved your post to this discussion on a new MAC diagnosis. I did this so that you can read past posts from other users and learn more about how they approached the disease when they were first diagnosed.

It's great to see that you've already heard from two great members of our community in @jkiemen and @irene5 and in this thread you can find other members who you can connect with.

I also wanted to share these threads with you so you can learn more about MAC and about other people with MAC on Connect.

– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
– Explanation of MAC: https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/
– Psychological Aspects of dealing with MAC: https://connect.mayoclinic.org/discussion/the-pyschological-aspect-of-dealing-with-bronchiectasis-and-mac/

As you can see in this threads and the discussions I linked above, Connect is a community where you can feel comfortable asking questions about an assortment of topics about MAC. I'm glad you already asked a question and I encourage you to keep doing so!

@papillion you mentioned you will be starting three antibiotic treatment. When do you start?

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It is such an incredible support system. When my husband was in Vietnam and I had two small babies, I heard people tell me "I know how you feel." I wanted to scream and yell back at them that they had no idea how I felt. What I quietly promised myself that I would never use those words. With MAC, I have been shocked by people that have no idea how I have felt or doctors in major hospitals that have never heard of MAC or haven't gone to the trouble to look it up before seeing me. I have been trying so hard to find others in Michigan who may have MAC. This system at MAYO is truly wonderful. Jane Brown

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@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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@papillion …you might want to check with NTMInfo.org for connections to other references etc, Also go to youtube and type in Gwen Huitt MD, others may be skilled with adding reference sites with their computers.The moderator Ethan has added sites helpfully. tdrell

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@macjane Jane, Hello. I too live in Michigan, at least in the summer (Arizona in the winter)—on a small lake in Hartland Township about 30 miles north of Ann Arbor. I was recently diagnosed with a mild case of MAC at the University of Michigan Medical Center. My infectious disease doctor told me that it is very unusual for someone in Michigan to have MAC and suspects I got it in Arizona (or Colorado, where I lived for 27 years). I’d love to know where/how you think you got MAC. Where in Michigan do you live? Do you have city or well water? (I have well water in an area of prairie fens.) Have you recently lived anywhere other than Michigan?
Thanks and good luck, Lori

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@lorifilipek

@macjane Jane, Hello. I too live in Michigan, at least in the summer (Arizona in the winter)—on a small lake in Hartland Township about 30 miles north of Ann Arbor. I was recently diagnosed with a mild case of MAC at the University of Michigan Medical Center. My infectious disease doctor told me that it is very unusual for someone in Michigan to have MAC and suspects I got it in Arizona (or Colorado, where I lived for 27 years). I’d love to know where/how you think you got MAC. Where in Michigan do you live? Do you have city or well water? (I have well water in an area of prairie fens.) Have you recently lived anywhere other than Michigan?
Thanks and good luck, Lori

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@lorifilipek, Hi Lori. Not sure if I had mentioned it to you before or not, but I caught my mac in Tucson, Az. pretty sure from our hot tub. Arizona is one of our country's 'Hot Spots' for mac. Some other states are: Florida, California, Wisconsin, Hawaii, and I think New Hampshire. Well water is supposed to be void of mac in most cases. I don't know why that is. So, that is one blessing you can count.

Liked by lorifilipek

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@windwalker, Hi Terri. Thanks for the info! We've lived in Oro Valley, a Tucson suburb, in the winter since 2009 and spent all year here for two years before that. I thought I caught valley fever in my second summer here, but wasn't tested then. Last year after I coughed up blood in MI, they tested and didn't find any antibodies for valley fever.
We just got back to Tucson a week ago, and I noticed I'm coughing more. I had been lap swimming 2-3 times a week in a heated (86 degree) outdoor pool here since we first moved here and once in a while I used the community hot tub. I'm NOT swimming here any more!!! I've been trying to convince my husband to go to coastal Georgia or South Carolina for the winter, instead of here, because the drive is much shorter and we could go back and forth from MI with a cat. (We used to have two cats, who have both passed away. We drove 3 long days with the cats back and forth to MI and they hated it! Now we fly because I hated the drive.) Maybe knowing the MAC issue, I'll have more luck persuading him. 🙂

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@lorifilipek

@windwalker, Hi Terri. Thanks for the info! We've lived in Oro Valley, a Tucson suburb, in the winter since 2009 and spent all year here for two years before that. I thought I caught valley fever in my second summer here, but wasn't tested then. Last year after I coughed up blood in MI, they tested and didn't find any antibodies for valley fever.
We just got back to Tucson a week ago, and I noticed I'm coughing more. I had been lap swimming 2-3 times a week in a heated (86 degree) outdoor pool here since we first moved here and once in a while I used the community hot tub. I'm NOT swimming here any more!!! I've been trying to convince my husband to go to coastal Georgia or South Carolina for the winter, instead of here, because the drive is much shorter and we could go back and forth from MI with a cat. (We used to have two cats, who have both passed away. We drove 3 long days with the cats back and forth to MI and they hated it! Now we fly because I hated the drive.) Maybe knowing the MAC issue, I'll have more luck persuading him. 🙂

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Interesting theory about where the MAC came from – according to my doc, and the reading I have done, the bacterium is endemic in MANY places – in fact, just about everywhere. I too was diagnosed after several winters in South Texas and Arizona – and several bouts of what appeared to be desert fever or valley fever. But with long-term asthma & now the bronch and MAC diagnosis/treatment, I'm pretty sure location isn't going to make any difference unless I choose to live in a sterile bubble. So I take precautions like staying away from sick people & staying inside with filtered air when the yukky soil around me is being disturbed by raking, mowing, wind etc. I have also switched my South Texas gardening from in-ground to pots with sterilized soil, and wear gloves & mask when doing it. Pretty sure I look ridiculous, but my friends know how sick I was for the last few years, the rest I don't care about…

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@sueinmn

Interesting theory about where the MAC came from – according to my doc, and the reading I have done, the bacterium is endemic in MANY places – in fact, just about everywhere. I too was diagnosed after several winters in South Texas and Arizona – and several bouts of what appeared to be desert fever or valley fever. But with long-term asthma & now the bronch and MAC diagnosis/treatment, I'm pretty sure location isn't going to make any difference unless I choose to live in a sterile bubble. So I take precautions like staying away from sick people & staying inside with filtered air when the yukky soil around me is being disturbed by raking, mowing, wind etc. I have also switched my South Texas gardening from in-ground to pots with sterilized soil, and wear gloves & mask when doing it. Pretty sure I look ridiculous, but my friends know how sick I was for the last few years, the rest I don't care about…

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@sueinmn My doctors say the same, you can pick up MAC any place, especially if you have bronc. I live in Cleveland. My garden now is all potted plants and I hire someone to tend them.

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Can anyone tell me which is better/easier to use and clean: Aerobika or Acapella? I need to start one soon. Thanks!

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@lorifilipek I've used them both and in my opinion the Aerobika is far superior. It comes apart and each piece can be boiled. I couldn't do that with the Acapella.

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