(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

Jump to this post

Thank you nick, I really appreciate your advised. I check the video and get the x-ray done. I noticed when eat bread get a lot of mucus. the mucus is on my throat I though mucus is coming from lungs. Anyway, I'm trying to clear the mucus and also I get so tired easy. Thanks again and Blessing to you. Cila

REPLY

I do know that the doctors in Rheumatology, and Pulmonolgy do work together at Mayo in Jax.

REPLY
@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

Jump to this post

@cila Cila if you feel tired it could be your lungs.  Have you tried Clear Lungs from Ridgecrest to see if it help you breath better and if it reduces your mucus.  I used the blue bottle to Relieve congestion, Support free breathing, keep Airways open and Balane

mucus levels.  When I had a lot of mucus in my throat  I was using And didn’t breath as usual I was taking Clear Lungs until I felt better.  Do you feel you have stomach Acid.  My Dr infectiologist told me that when you have a lot of acid reflux it can cause

mucus and that mucus gets to the lungs to cause bronchectasis.  Do you have to take acid reflux med. if so you need to change your diet for non acid food so no fried food, no sugar, no milk product etc. You must detox your liver also. My Dr recommended Milk

Thistle from Hübner ( the brown bottle that can be ordered on line) Take it as prescribed and do that until your mucus is almost gone.  If after a month you don’t see a difference then you may consider another option.  In my case I saw a big difference. Now

if I have fried fish (as a treat) I take some right after my meal.  It is a very complicated problem but when it is under control and you keep it that way, you have no more problem.  You feel normal again.  Do what needs to be done!  Get rid of bad habits.

 Kiss! Kiss!  Nick

REPLY
@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

Go to Mayo… nothing good around here… I'm in Palm Harbor

REPLY
@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

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

REPLY
@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

Has he recommended treatment with the 3 antibiotic regimen or does he have other treatment recommendations.

REPLY
@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

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

REPLY

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

REPLY
@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

Jump to this post

@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.

REPLY
@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

@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?

REPLY
@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 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
@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

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
@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

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

REPLY
@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
@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
Please login or register to post a reply.