1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

boomerexpert | @boomerexpert | Apr 13, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

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You're getting excellent care...and coordinated which is more rare than a lottery winning...!

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unicorn | @unicorn | Apr 13, 2018

I think the 3 pill regimen, and hiatal hernia has caused me to have AFIB, heart palpitations. Anyone else have those. Now I have to go see a cardiologist because not enough is wrong with me. I am going on cruise to Mexico tomorrow, though doc said maybe not to go...going anyway. xo

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 14, 2018
In reply to @unicorn "I think the 3 pill regimen, and hiatal hernia has caused me to have AFIB, heart..." + (show)
@unicorn

I think the 3 pill regimen, and hiatal hernia has caused me to have AFIB, heart palpitations. Anyone else have those. Now I have to go see a cardiologist because not enough is wrong with me. I am going on cruise to Mexico tomorrow, though doc said maybe not to go...going anyway. xo

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@unicorn Have fun on your trip. Sometimes our meds do cause heart palpitations, I know that Cipro can, and probably was the cause of mine. I have stopped antibiotics for a breather. No more palpitations.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 14, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

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@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?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 14, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

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@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!

REPLY
jengelage | @jengelage | Apr 14, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

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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.

REPLY
mary0310 | @mary0310 | Apr 14, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

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@windwalker Hi Terri. My pulmonologist is Dr. Jorge Lascano and my rheumatologist is Dr. Westley Reeves. They both practice at Uf Health Gainesville.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 14, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

Jump to this post

@mary0310 Thank you Mary!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 14, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

Jump to this post

@jengelage Are you asking me about my treatment?

REPLY
jengelage | @jengelage | Apr 14, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
@sandysupermom

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

Jump to this post

Yes I would like to compare how you are being treated with the treatment I'm receiving. Thanks.

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