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!

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

nick52 | @nick52 | Apr 17, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jump to this post

@suzie2017 no I do not have any other disease  then Bronchiectasis with my lungs.  I do not take any med and have palpitation since I was 28. I control my heart with Q10. Or L Carnitine. I thank God every day for having a good health. I had my galbladder remove

so I take Milk Thistle to help digest the fat. Nick

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 17, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

You're so right, Linda. This discussion remains the longest thread on Connect with now almost 6000 messages. Boy, did Katherine hate it when I called it a thread. She said that made it sound too little and she is right. This is a community!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 17, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

Hi all,
You may be interested in these discussions on Connect:
- Alternative (herb) medications https://connect.mayoclinic.org/discussion/alternative-herb-medications/
- Alternative Treatments for MAC: immunotherapy, etc. https://connect.mayoclinic.org/discussion/alternative-treatments-for-mac/

Complementary therapies are usually therapies used in addition to conventional care. Alternative therapies are defined as those use to replace conventional care. Sometimes people use these terms interchangeably. https://nccih.nih.gov/health/integrative-health#cvsa It is always a good idea to talk to your doctor about complementary or alternative therapies you’re considering, and to do your research about their effectiveness.

Many members have talked about complementary therapies that help manage symptoms, such as the nebulizer.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 18, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

@suzie2017 Hi Suzie. (In case you missed) here are more questions you may consider asking your doctor if they apply.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 18, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jump to this post

@suzie2017 I have COPD.

REPLY
Suzie2017 | @suzie2017 | Apr 18, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jump to this post

My husband has periodically pain in his groin area. He has been x-rayed and everything was OK. He also has a small amount of fluid in his lungs and I have wondered if the fluid could cause the pain or possibly it is the Mac infection and it has spread to other parts of his body. Can MAC do this?

REPLY
tdrell | @tdrell | Apr 19, 2018

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

REPLY
10 replies
Suzie2017 | @suzie2017 | Apr 19, 2018
In reply to @tdrell "Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but..." + (show)
@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

Jump to this post

Osteoarthritis is a very good possibility. My husband has arthritis in several places. His pain is in the left groin also.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 19, 2018
In reply to @tdrell "Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but..." + (show)
@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

Jump to this post

@tdrell, Hi Terri. Yet one more thing that you and I have in common. Me too, left hip.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 19, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jump to this post

@suzie2017 Suzie, MAC can spread (diseminate) to the rest of the body, but it is very rare.

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