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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with MAC and Bronchiectasis. She lives in Ocala, FL and we are trying to decide where to take her for further care. Her current pulmonologist wants to refer her to the University of Florida - Shands Hospital because they have a micobacterial clinic there. I have been reading the reviews from previous patients and their biggest complaint is the lack of communication between doctors. That's a pretty big flag for me. I wonder if anyone could tell me their experiences with Mayo. If you need a Pulmonologist and and Infectious Disease doctor and a Rheumatologist do the doctors work together? I should also mention that we are considering going to the Mayo Clinic in Jacksonville, FL
Replies to "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..."
Hello @sandysupermom, I have MAC (for the second time) and Bronchiectasis. I live in Ocala too. My first pulmo was in Jax but when we moved to Ocala, I transferred to UF Health Gainesville. My new doctor now is pulmonologist with a subspecialty on non-CF Bronchiectasis. I have been seeing him since October 2017. Based on what I see, so far, he has a wide knowledge about the my conditions.
I also see a Rheumatologist at UF Health. He is the head of the rheumatology dept. He has a team of Pulmonologist and Infectious Doctor. (i got my pulmo ahead of the rheumy so was not able to get into his team’s care.) So far, I am happy with my pulmo. I
Has he recommended treatment with the 3 antibiotic regimen or does he have other treatment recommendations.
You're getting excellent care...and coordinated which is more rare than a lottery winning...!
@sandysupermom Hello and welcome to our group. I have been going to the Mayo in JAX since 2013 for mac and bronchiectasis. I was in such dire shape that they pre-tested me for a lung transplant! I really believed that I was going to die. I couldn't walk 20 feet without sitting to catch my breath. I coughed non-stop from the time I'd get out of bed every day. I went 15 years of suffering and misdiagnosis. It is critical to get proper care. Yes! The doctors at the Mayo work as a team. That place runs like a well oiled machine. A patient gets their test results & a treatment plan in the same day as their appt in most cases; (unlike going to private practice physicians.) Your mom needs both a pulmonologist and an infectious disease specialist. I feel like my doctors at Mayo saved my life. If you saw me today, you'd never guess that I have only 37% of lung function left. I feel like a healthy person most of the time. I still have shortness of breath and low energy days, but otherwise - doing great. You do not need a referral for your mom, just call and make an appt. My doctor is Dr. Leventhal. If you cannot get in to see him, I am sure any other one there would be good. They don't hire any slouches. Please tell your mom that we, on Connect, hopes that she gets to feeling better soon. We are here for you both. Will you please let me know if she gets an appt at Mayo?
@mary0310 Hi Mary! I am glad to hear that UF in Gainsville is treating you well. I had suggested that medical clinic to a woman that could not travel up to Jacksonville. Do you mind sharing your doctor's names? Thank you!
I have the same diagnosis and symptoms. Could you please share the kinds of treatment you are taking and if you are using any alternative meds? Thanks.
@windwalker Hi Terri. My pulmonologist is Dr. Jorge Lascano and my rheumatologist is Dr. Westley Reeves. They both practice at Uf Health Gainesville.
@mary0310 Thank you Mary!
@jengelage Are you asking me about my treatment?
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Go to Mayo... nothing good around here... I'm in Palm Harbor