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I live in Seminole, Florida just across the bridge from the Gulf. It took two years before I was diagnosed with MAC by my primary care doctor. MAC is rare but more common in women over 60 living in coastal areas. I fit into all three categories. My pulmonologist has never explained one thing to me about MAC or the importance of using a nebulizer. I was told to get one and a script for saline solution. I even had to go online to find out how to use one. Only when I began to read comments on this site did I find what I suspected - the best I can hope for is remission. I had a chest CT scan in Dec and soon after my pulmonologist referred me to another who he said was the Guru for MAC. Only when I saw that doctor who was very straight forward while offering hope did I hear the results of my 2022 tests/scan. They showed the infection twice as bad as the year before. MAC is rare so most pulmonologists have never treated anyone with it. Personally I would keep the appt to see the infectious disease doctor. More knowledge is better than less.
Replies to "I live in Seminole, Florida just across the bridge from the Gulf. It took two years..."
My ID doctor has not ever told me yet to use a nebulizer? I am just really confused. I'll tell you that I have no symptoms of the Mac. None. And I don't know if that's why, I can't cough something up if I tried right now! Even though I have a 3.7 CM hole in my lung right now, I haven't been on the antibiotics long enough for anything to start working yet my last CT scan while I was in the hospital for my surgery a week and a half ago showed that everything in my lung just started trying to heal on its own. The thick wall around the cavity became really thin now and all the little nodules that were all over my lung had largely dissipated. But, my ID doctor didn't say anything about a nebulizer. I'm not sure if I should just get one and do it on my own or what? Thanks for your help
Angela
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Thank you! Like you, i don’t much faith in my pulmonologist and after reading comments here, am very glad i have an appt with ID doctor soon after I see the pul. doctor next week. I live in north FL. by Lake City- I’m
at least an hour from the coast, but living somewhat rurally, I actually have well water into my house and I garden and sweep, shovel manure and clean up after horses and cows on a daily basis. I’m sure I got this either by way of water or soil even tho I was not knowingly immune compromised. I have been reading on other sites about using a nebulizer for MAC and even a very promising study using Manuka honey in a nebulizer-I assume it is “medical grade”, not what you can buy in retail.
Yes, I also find in my research that remission is the probable outcome versus cure. One article I read out of Miami stated (and I am paraphrasing here)”Mac may not kill you but you will die with it”. It sounds very daunting, all the side effects and length of treatment for a possible maybe helping the symptoms long term.
Do you believe your “MAC Guru” is credible and has better ideas? Is he in north Florida?
Good luck to you (and all of us!) and thank you so
much for your thoughts!
Susan