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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hello, Kate
What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....
Thank you, Kathy
Replies to "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..."
@windwalker Hi Terri, I also see that pink looking film in the corners of the tub/shower if I don't clean for a few days. I saw it at my home in Brooklyn, NY where I lived for 23 years and I see it here, at my new home in Staten Island, NY, where I'm living since Feb 2017. I was diagnosed in Dec 2016 so I guess I got it while living in Brooklyn. I remember reading something about if you have the pink bacteria you don't have the MAI/MAC bacteria in the water. Do I remember this correctly? Or have I misunderstood that?
P.S. thanks for becoming our volunteer mentor, it's really appreciated. Also, I hope all goes well for Katherine and her husband and she'll be able to "pop in" now and then to say hello.
Gina K
Ginak.....i think I heard Dr JOseph Falkingham say itbin the 2016 National Jewish video presentation he gave. I recall the name he gave these NTM fighters as called METHO....something.tdrell
Hi Gina, I will add your region when I send the info to Faulkinham about the pink bacteria. Thank you for responding. Oh my Gosh, I pray for Katherine everyday. I will do my best until she is able to return some day. Hopefully, that day is not too far off. As we know, this disease does take some time to beat.
Windwalker Terri.....I also have pink slime that I periodically remove from shower walls. I live in West Bend Wi...45 minutes North and West of Milwaukee Wi. Tdrell
Hi Gina, if I know Katherine, she will look in on us from time to time. She may not respond , but she is will look.
Yes, Heather, you are right about that. MAC is found in water, soil, and air. It is ubiquitus, making it all the harder to figure out.
Ok, that is good to know. Since my diagnosis of MAC, I have been extra careful about evrything. I used to garden a lot. I still do, but use extra caution in breathing in any soil dust. I do not do much digging anymore.
@tdrell Thats probably where I heard it also. But what are the implications regarding that!? I wonder, does that mean we don't have to worry so much about our own showers, or brushing teeth and washing face? I still use my water normally, but I have stopped drinking it (unless I boil it first), and rarely ever use ice cubes. It would be nice to know I'm "safe" in my own home.
Gina K
I also used to garden a lot. Flower and vegtable gardens outside and I had a lot of potted plants all around inside my house. I gave away all my inside plants and hardly ever garden outside any more. When I do I usually wear a mask. My diagnosis is MAI. My Dr. at NYU said I could still "plant your impatiens on Sundays, as long as your not an agriculturalist working in soil every day!" But I still take precautions. Better safe than sorry.
Gina K
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yes but water comes in contact with soil at some stage i guess.