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.

@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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@lorifilipek Hi Lori. My husband did a lot of work in Oro Valley. He had a contracting company and did the paver driveways. I hate for you to give up your swimming. You can have the water tested for mac by a lab. I have the name of one if you are interested. It is mainly the the indoor pools and indoor/outdoor hot tubs that pose the most danger for mac. I live in coastal S.C.; 21 miles north of Savannah. Our winters are mild, maybe 2-3 nights that get to the freezing mark. No snow or ice storms. Not many gray or rainy days either. We don't have the plethora of good restaurants that Tucson has though. It is scenic here and lots of bicycle paths. Should visit and see if the southeast is your cup of tea. Let me know if you come down this way, we can do lunch.

Liked by lorifilipek

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@ windwalker Do you have the name of a lab that tests for MAC?

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@jkiemen

@ windwalker Do you have the name of a lab that tests for MAC?

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@windwalker yes, I would be interested in the name of a lab too!

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@lorifilipek Hot Spots of Wisconsin.. Allot of people in Wisconsin travel to Florida and Arizona for half the year. So are they getting Mac there or getting in in Wisconsin and being diagnosed in those other locations. I personally have been to other states briefly for conferences etc. So I am assuming I got it here in Wisconsin. I was diagnosed after traveling to Minnesota about a month prior. Maybe I got it there, but I am assuming I got Pneumonia from that trip and the MAC had probably been brewing making me more susceptible. The CDC really needs to be looking at this more. We surely can see how this group has grown. It has go to be out there more than anyone really knows

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@jkiemen

@lorifilipek Hot Spots of Wisconsin.. Allot of people in Wisconsin travel to Florida and Arizona for half the year. So are they getting Mac there or getting in in Wisconsin and being diagnosed in those other locations. I personally have been to other states briefly for conferences etc. So I am assuming I got it here in Wisconsin. I was diagnosed after traveling to Minnesota about a month prior. Maybe I got it there, but I am assuming I got Pneumonia from that trip and the MAC had probably been brewing making me more susceptible. The CDC really needs to be looking at this more. We surely can see how this group has grown. It has go to be out there more than anyone really knows

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I agree. My doctor said thousands of people are walking around with MAC. Where exactly is it in

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@papillion It is in water and dirt , but is also just floating around in the air in small doses, my specialist said if she put a plate down on the bench MAC would be on it pretty fast.

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@heathert

@papillion It is in water and dirt , but is also just floating around in the air in small doses, my specialist said if she put a plate down on the bench MAC would be on it pretty fast.

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Thank you

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@papillion

I agree. My doctor said thousands of people are walking around with MAC. Where exactly is it in

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Mycobacterium avium is everywhere – in both soil and water, and it can become airborne. I don't know for a fact, but I suspect that the reason it seems more prevalent in some places than others is either population demographics (age, susceptibility to infection due to underlying conditions, genetically predisposed people…) or climate (in warm climates, people are exposed to soil and water all year, versus it being covered by snow and/or people hibernating in cold places…) or both. Many water supplies contain the bacteria, below acceptable thresholds and not harmful to most people – except those of us with compromised lungs or immune systems. My pulmonologist will not even diagnose MAC unless two or 3 sputum cultures grow it because there is risk of environmental contamination with the bacteria through air or water (this happened when my husband & I were tested – only one of his 3 cultures showed MAC, all 3 of mine had it.

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@sueinmn

Mycobacterium avium is everywhere – in both soil and water, and it can become airborne. I don't know for a fact, but I suspect that the reason it seems more prevalent in some places than others is either population demographics (age, susceptibility to infection due to underlying conditions, genetically predisposed people…) or climate (in warm climates, people are exposed to soil and water all year, versus it being covered by snow and/or people hibernating in cold places…) or both. Many water supplies contain the bacteria, below acceptable thresholds and not harmful to most people – except those of us with compromised lungs or immune systems. My pulmonologist will not even diagnose MAC unless two or 3 sputum cultures grow it because there is risk of environmental contamination with the bacteria through air or water (this happened when my husband & I were tested – only one of his 3 cultures showed MAC, all 3 of mine had it.

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@sueinoregon Hello Sue. I speculate too on why some places are hot-spots for mac. It is not the warmer climates because Wisconsin and New Hampshire are on the list. Ir must be at the water source. It seems to be a big mystery. Is it possible that you had three positive cultures because you have bronchiectasis? And perhaps your husband does not?

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@heathert

@papillion It is in water and dirt , but is also just floating around in the air in small doses, my specialist said if she put a plate down on the bench MAC would be on it pretty fast.

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@heathert Hi Heather. That is presisely why I am on maintenance antibiotics for life. : (

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@jkiemen

@lorifilipek Hot Spots of Wisconsin.. Allot of people in Wisconsin travel to Florida and Arizona for half the year. So are they getting Mac there or getting in in Wisconsin and being diagnosed in those other locations. I personally have been to other states briefly for conferences etc. So I am assuming I got it here in Wisconsin. I was diagnosed after traveling to Minnesota about a month prior. Maybe I got it there, but I am assuming I got Pneumonia from that trip and the MAC had probably been brewing making me more susceptible. The CDC really needs to be looking at this more. We surely can see how this group has grown. It has go to be out there more than anyone really knows

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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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@jkiemen

@ windwalker Do you have the name of a lab that tests for MAC?

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@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.

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@jkiemen

@ windwalker Do you have the name of a lab that tests for MAC?

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@jkiemen Hi Jo Ann. Here is the link: http://www.specialpathegenslab.com/ Let us know what you find out. Thnx!

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