1. < MAC & Bronchiectasis
Profile picture for Katherine, Alumni Mentor

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 15, 2018

@killalea Hi there. Did I fail to welcome you to the group when you first joined us? If so, I apologize, and wish to welcome you now. I am glad that you have been reading our posts and gathering info about living with mac. Knowledge is power! Have you learned any more about your infection from your doctor? We are here for you!

REPLY
Profile picture for irene5 Irene Estes
irene5 Irene Estes | @irene5 | Apr 15, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
Profile picture for Sandy @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

So are you saying windwalker that cipro and doxycycline cured you of MAC, and that is why you are on them prophylactically? If that is what you are saying, I am extremely interested because the Big 3 is/are so very toxic for me. Thank you. Irene

REPLY
Profile picture for jengelage
jengelage | @jengelage | Apr 15, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
Profile picture for Sandy @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

Thank you for your response. I have a similar diagnosis, but so far am being treated with nebulizer with a salt solution. Interesting to the different approaches to the same diagnosis. The Big 3 treatment effects seem to be worse than the disease as long as the person is not experiencing severe symptons.

REPLY
Profile picture for nick52
nick52 | @nick52 | Apr 15, 2018
In reply to @unicorn "I think the 3 pill regimen, and hiatal hernia has caused me to have AFIB, heart..." + (show)
Profile picture for unicorn @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 a quick respond for palpitation. I have those since age 28. I read that it could be a lack of calcium magnesium.  Since i take calcium magnesium and my Q10 or L-Carnitine I have no more palpitation.  You may want to read about it on the internet or

Dr Balch Nutritional healing book!  This is an Alternative for palpitation. Hawthorn berry is also good for heart disfunction. Nick 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 15, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
Profile picture for Sandy @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

@irene5 Yes, Irene, that is what I am saying; although we are never really 'cured'. We are suseptible to getting it and will likely get it again some day. I have been on this regimen simce 2013. It does work for me, but just know, what works for one person may not work for others. Everyone with mac needs to get a suseptibilty test done on their sputem samples.

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 15, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
Profile picture for Sandy @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 Hi. I am glad to know that you are doing the nebulized saline, I do that too. It does make a big difference in keeping our lungs clean. Are you doing it twice a day?

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 15, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
Profile picture for Sandy @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

@irene5 A doctor tried to put me on the Big 3 in 2005, but I refused them because of the toxicity. I was treated with zithromax for several weeks and I got better for a time. Better, mind you, not cured. I stayed sick from that point until 2013. During those years, I was like someone with emphysema. I had good days and bad days and very bad weeks. It wasn't until the doxy/cipro treatment that it cleared out. While on it, I did catch pseudomas. That was treated with tobramycin for 6 alternating months. It was alternated with cipro. For some reason, that seemed to be MY magic bullet. All coughing ceased after that. I emphasized 'MY' because Katherine tried it and she said she had a bad reaction to the toby. But, at that point she was already fully consumed with klebsiella, and serratia marcescens (hospital borne pneumonia type bacterias). You can ask your doctor about the regimen I am on and have your next sputem test tested for suseptability to doxy and cipro. Some members have stated that their drs do not approve of my doctor's method. I think it could be for several reasons. One, they don't know about it, or Two, doctors just have differing opinions how to treat this allusive disease. It is worth a discussion with your dr at least. This method comes from my Mayo pulmonplogist. Mayo doctors are cutting edge and worldwide respected. Plus, I am proof that other methods work. I would be intetested in knowing what your dr thinks.

REPLY
Profile picture for jengelage
jengelage | @jengelage | Apr 16, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
Profile picture for Sandy @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, 2X a day. No meds right now.

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 16, 2018
In reply to @sandysupermom "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..." + (show)
Profile picture for Sandy @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 I feel like that is the one of the best things we can be doing for ourselves.

REPLY
Profile picture for Suzie2017
Suzie2017 | @suzie2017 | Apr 16, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
Profile picture for KathyG @kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Hello, I am new to Mayo but I would like to share what my 71 year old husband is going through. He has severe COPD including Bronchiectasis. He also is in early stages of Alzheimers. He is currently waiting for the results to come back from his second sputum culture. The first one from mid-March resulted in a pulmonary Mac infection. The second culture will confirm the diagnosis. My husband has lost about 18 pounds in the past 1.5 years without trying. He is 5.6 and weighs 119. He also has been an anemic for the past 2 years. Due to his illnesses, he is currently on 15 prescription drugs. I am wondering, if he is confirmed to have Mac, if he should go on the strong antibiotic treatment.

REPLY
View MoreView Less
Please sign in or register to post a reply.