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.

egayle187 | @egayle187 | May 10, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial..." + (show)
@suzie2017

I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial scope prior to putting him on any treatment for Pulmonary MAC infection. The bronchial scope will be Tues. He said he wants to rule out cancer before proceeding. He has a shadow on his lung and the Pulmonologist said today that it is too risky to do a biopsy during the procedure due to his blood thinners, but he will “brush” the shadow to try to get something to look at. The substance that will be pulled out of his bronchial tubes will be sent to a Jewish Colorado Hospital for processing which will take about 4 - 5 weeks. I started to wonder that if the treatment plan of 3 antibiotics is used, what will the cost be. My husband has Medicare and a good supplemental.

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It sounds like your doctor is following the correct procedures. I had these same problems in 2014 and the pulmonologist was sure it was cancer, but it turned out to be MAC. I took the Big 3 for 14 months. My cost for all parts of this was the individual co-pay. The only problem with the anti-biotics was that the mail order part of my plan refused to cover the number of pills, so the hospital's pharmacy provided them without any complaint. I could not get 3 months at a time, but the co-pay was $10. each. I hope this helps.

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Suzie2017 | @suzie2017 | May 10, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial..." + (show)
@suzie2017

I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial scope prior to putting him on any treatment for Pulmonary MAC infection. The bronchial scope will be Tues. He said he wants to rule out cancer before proceeding. He has a shadow on his lung and the Pulmonologist said today that it is too risky to do a biopsy during the procedure due to his blood thinners, but he will “brush” the shadow to try to get something to look at. The substance that will be pulled out of his bronchial tubes will be sent to a Jewish Colorado Hospital for processing which will take about 4 - 5 weeks. I started to wonder that if the treatment plan of 3 antibiotics is used, what will the cost be. My husband has Medicare and a good supplemental.

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It sure does help. Thank you. Did you experience any side effects? Have you been OK after the 14 months?

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egayle187 | @egayle187 | May 10, 2018

I hated the taste of Clarithromycin. It seemed to affect all my cells. I had eye exams every 2 months. One out of every 4 patients seem to have eye problems, but mine are OK. I have had no recurrence of MAC since 2015. It did destroy my lower right lobe, but the pulmonologist will monitor to make sure it doesn't spread.
One thing you can do for your husband while you anxiously await the results is to eliminate acid reflux.
I recommend you don't avoid talking about your worries, even if he is reluctant. You can get a "Peace of mind" planner so all the financial info is available. Men want to feel they are Taking care of us.
I started taking pictures of the furniture I inherited and want my kids to know the history of.. I worked on genealogy...It was fun and kept me too busy to fret.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 10, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news....they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group...i miss you wonderful friends here too!!!

Thank you,
Julie

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Toni, we're glad that you're finding answers to your questions here on Connect. Sharing with people who are in the same boat not only provides support, it's real information.

I notice that you type in ALL CAPS. You'll notice that we advise against using all caps in the community guidelines https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/ That's because all caps is considered shouting in online communications. However, a few members on Connect have to or prefer to use all caps because to typing difficulties (sore hands) or eye sight issues. Is that why you use all caps?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 11, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial..." + (show)
@suzie2017

I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial scope prior to putting him on any treatment for Pulmonary MAC infection. The bronchial scope will be Tues. He said he wants to rule out cancer before proceeding. He has a shadow on his lung and the Pulmonologist said today that it is too risky to do a biopsy during the procedure due to his blood thinners, but he will “brush” the shadow to try to get something to look at. The substance that will be pulled out of his bronchial tubes will be sent to a Jewish Colorado Hospital for processing which will take about 4 - 5 weeks. I started to wonder that if the treatment plan of 3 antibiotics is used, what will the cost be. My husband has Medicare and a good supplemental.

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@suzie2017 I know that the waiting period can be tough while waiting, wondering, and worrying. I had read many previous posts by others whose doctors suspected lung cancer, but it turned out to be mac infection. How is your hubby holding up?

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Suzie2017 | @suzie2017 | May 11, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial..." + (show)
@suzie2017

I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial scope prior to putting him on any treatment for Pulmonary MAC infection. The bronchial scope will be Tues. He said he wants to rule out cancer before proceeding. He has a shadow on his lung and the Pulmonologist said today that it is too risky to do a biopsy during the procedure due to his blood thinners, but he will “brush” the shadow to try to get something to look at. The substance that will be pulled out of his bronchial tubes will be sent to a Jewish Colorado Hospital for processing which will take about 4 - 5 weeks. I started to wonder that if the treatment plan of 3 antibiotics is used, what will the cost be. My husband has Medicare and a good supplemental.

Jump to this post

This morning he seemed to have a mini flair up. His temp was 99.2, he had chills, headache, mild nose bleed and was having trouble breathing. I got him hooked up to his oxygen and within a short period of time he looked and felt much better. I checked his oxygen prior to hooking him up and the oximeter read 80. If we didn’t have oxygen in the house I would have had him on the way to the hospital. I hope this doesn’t mean more to come later today. Thank you for asking about us.

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toni68 | @toni68 | May 14, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news....they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group...i miss you wonderful friends here too!!!

Thank you,
Julie

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Thank you. I did not know that. I just learned how to use a computer a few years ago. I am 68 yrs. so much I don't know.

REPLY
toni68 | @toni68 | May 14, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news....they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group...i miss you wonderful friends here too!!!

Thank you,
Julie

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@collenyoung Thanks for all the help. I might be saying goodbye for a while,since I'm not sure how the site works,it's great ,but new to me ,and I have many problems other than mac. 2 more lung diseases and brain injury from a drunk driver. i'll sit back and learn from you guys.your wonderful at what you do. my input is not so helpful to anyone,at this time toni ann

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egayle187 | @egayle187 | May 14, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news....they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group...i miss you wonderful friends here too!!!

Thank you,
Julie

Jump to this post

That's depression talking, Toni Ann. And no wonder. Please stay connected to the group. Are you on oxygen? And do your other two diseases cause excess mucous? If so you may want to read about the vest that helps get it out. It's normal to second guess yourself after a brain injury, but don't stop trying new things. We can learn a lot from you and how you are coping. Many of us have had doctors who didn't listen. The group is excellent at seeing what more needs to be done. Stay tuned.

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