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Hello,
I am brand new to the site and thankful to have stumbled on it. I have had so many symptoms but wasn’t diagnosed for over 2 years after several misdiagnoses and several lymphnode biopsies. I have had diffuse lymphadenopathy since this all began. I’m scheduled to see my pulmonologist on the 24th of March to go over treatment and start. (does anyone else live in MAC breeding ground, Florida?)
My immediate question pertains to your comment of needing both a pulmonologist and infectious doctor. When my pulmonologist told me about MAC, i made a followup with the infectious disease doctor, thinking that was another layer in treatment that could be helpful. I mentioned it to the pulmonary and she told me, rather abruptly, I need to cancel that, that i don’t need to follow up with them. I found that very strange and Inintend to keep the appointment. Can you please tell me how your doctors work in tandem on your MAC? I’m thinking mine P. doctor is not going to want this joint care route-even tho both doctors are practicing at a university hospital. I have to say I don’t feel complete trust in my pulmonologist, having missed my diagnosis for so long and my MAC was actually found by my rheumatologist. I’ve been to 5 different departments with my “mystery” illness.
Thank you! I’m thankful to be a part of this community and look forward to exchanging thoughts.
Replies to "Hello, I am brand new to the site and thankful to have stumbled on it. I..."
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.
Wow, Susan, your pulmonologist sounds like my first one - he fired me AFTER I saw the ID doc - but the experience led me to a better one. If he doesn't want to provide cooperative care, I would suggest asking the ID doc who they prefer to work with.
It's interesting to hear that your MAC was diagnosed by the rheumatologist- RA can actually cause Bronchiectasis, the underlying condition that makes many of us susceptible to MAC.
As for Florida being a "breeding ground", there are pockets of MAC/NTM in many locations. My own suspicion about Florida is that the concentration of older population, with access to medical care in good clinics and with insurance, may skew the statistics.
That would be an interesting thing to study.
As for time to diagnosis, mine was over 3 years...they just kept xraying and treating me for "intractable" asthma and recurrent bronchitis - until a sharp-eyed nurse practitioner saw "something" she didn't like on an xray and sent me for a CT. You can probably read this same thing 100 times in this Support Group!
I look forward to hearing what you learn at your appointment next week.
Sue
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To answer your question if anyone else is in Florida, I am and have been here 13 years a transplant from NH. I was diagnosed in Feb 2022 and started the big 3 for mac in Aug 2022. Florida is one of the worst states for mac.