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(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.

anniepie | @anniepie | Nov 15, 2019
In reply to @windwalker "@anniepie, Hi Annie. I am trying my best to stay well! I do not understand why..." + (show)
@windwalker

@anniepie, Hi Annie. I am trying my best to stay well! I do not understand why your health care system wouldn't do a susceptibility test on all three of the drugs. I do not know so much that Dr. Leventhal was courageous for prescribing me the way he did; as the ATS lobby doesn't affect him. He worked for Mayo Clinic with is a non-profit research institution. Which means they try different things to treat diseases in order to discover better ways to combat them. He told me when I first saw him that we could try this method and if it did not work, then we could go to the standard way of using the Big 3. I think that some strains of mac are more serious and my regimen probably wouldn't get rid of it. Dr. Leventhal retired this past August, so I am curious about meeting his replacement this summer. He told me that he had been grooming her with his thought processes on how to treat NTM (mac). I read some of her publications and she seems to be very passionate about this particular disease. Are you free of the smoke from the wildfires in your country? I hope so!

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Thanks Terri @windwalker. The smoky air has been less choking for the past few days but down here it's late spring -- it's going to be a long hot summer. (Australia is around the same size as the USA minus Alaska. Three quarters of the country have been in the worst drought ever and wildfires have been wiping out millions of acres around the country).
Anyway, when I finally finish these TB meds, I hope I can find a doctor to put me on a good prophylactic treatment something like yours. Thanks so much for telling us about it. All the best, Annie

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1 reply
anniepie | @anniepie | Nov 15, 2019
In reply to @kathyhg "Thanks to everyone for their responses to my question re: nausea. I’m hopeful that my nausea..." + (show)
@kathyhg

Thanks to everyone for their responses to my question re: nausea. I’m hopeful that my nausea is from the Mac and not anything else so your responses were reassuring to me.
I hadn’t realized how much weight I lost before being diagnosed with Mac but I’m learning about how important it is to maintain a healthy weight. I’ve gained close to 20 pounds since starting treatment and I eat through the nausea so I can keep the weight on. I hope that the extra weight helps to keep me healthier.
This disease is certainly complex!

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@kathyhg and @janovr - yes the illness can make us feel more nausea, even before we start treatment, Then the big 3 and many other drugs can make us feel very nauseated too - often.
I take my meds at night so the worst effects happen while I sleep. This seems to help better than taking them in the morning. I agree with everyone about the candied ginger, and also ginger tea. I also use a ginger marmalade on toast. It all helps. I hope you find things to help you soon

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1 reply
irene5 Irene Estes | @irene5 | Nov 15, 2019

@kathyhg One of the first symptoms with MAC for many is not having an appetite. I was “never hungry.” It has been several years now with this disease for me, and nausea has been a frequent “companion.”. All these helps about ginger in various forms are helpful. Feel better!

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janovr | @janovr | Nov 15, 2019
In reply to @windwalker "@janovr & @hletter, Dr. Leventhal's replacement is Dr. Elizabeth Johnson." + (show)
@windwalker

@janovr & @hletter, Dr. Leventhal's replacement is Dr. Elizabeth Johnson.

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@windwalker ... thank you so much!

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janovr | @janovr | Nov 15, 2019
In reply to @windwalker "@kathyhg Since your nausea is extreme, you may want to have your stomach checked for mac...." + (show)
@windwalker

@kathyhg Since your nausea is extreme, you may want to have your stomach checked for mac. It can sometimes diseminate there. There are other 'comorbid' diseases that can come with mac that would affect your stomach. For example: a mutated version of CF, etc. That is yet one more reason I like going to the Mayo Clinic; they can do genetic testing. Just an FYI, Mayo does offer a genetic disease testing panel for $150.00 to screen for hidden genetic issues. You donot need to be a Mayo patient to purchase it. It can be found on the Mayo website.

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@windwalker !
Wow... I will definitely check that out! Thx again!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 15, 2019
In reply to @anniepie "@kathyhg and @janovr - yes the illness can make us feel more nausea, even before we..." + (show)
@anniepie

@kathyhg and @janovr - yes the illness can make us feel more nausea, even before we start treatment, Then the big 3 and many other drugs can make us feel very nauseated too - often.
I take my meds at night so the worst effects happen while I sleep. This seems to help better than taking them in the morning. I agree with everyone about the candied ginger, and also ginger tea. I also use a ginger marmalade on toast. It all helps. I hope you find things to help you soon

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@kathyhg Another thing that I find helps is to have frequent small amounts of food. I sit here this morning battling a worse than usual feeling of nausea because I was out with a friend yesterday and didn't eat anything (forgot to restock snacks in purse & car.) When I finally had lunch, 2 hours late, I had a very hard time to force it down. Today I will stick firmly to my "eat something every 1-2 hours" no matter how I feel. I find I tolerate cheese, yogurt & lean meat as well as apples or a protein bar

REPLY
alleycatkate | @alleycatkate | Nov 15, 2019
In reply to @anniepie "Thanks Terri @windwalker. The smoky air has been less choking for the past few days but..." + (show)
@anniepie

Thanks Terri @windwalker. The smoky air has been less choking for the past few days but down here it's late spring -- it's going to be a long hot summer. (Australia is around the same size as the USA minus Alaska. Three quarters of the country have been in the worst drought ever and wildfires have been wiping out millions of acres around the country).
Anyway, when I finally finish these TB meds, I hope I can find a doctor to put me on a good prophylactic treatment something like yours. Thanks so much for telling us about it. All the best, Annie

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@anniepie ..Hi Annie...hope you stay safe with all the wildfires. Wondering if the fires are close to you and if you are using a mask? I saw a photo of all of the little Kola Bears that are having a difficult time escaping the flames....sad also. Kate

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1 reply
anniepie | @anniepie | Nov 17, 2019
In reply to @alleycatkate "@anniepie ..Hi Annie...hope you stay safe with all the wildfires. Wondering if the fires are close..." + (show)
@alleycatkate

@anniepie ..Hi Annie...hope you stay safe with all the wildfires. Wondering if the fires are close to you and if you are using a mask? I saw a photo of all of the little Kola Bears that are having a difficult time escaping the flames....sad also. Kate

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Thanks Kate @alleycatkate -- the fires came about 3 miles from me but were very close for my niece. I have used a mask on some days for the smoke but keep all the windows closed, and use my asthma puffer a bit more. I will be careful. How are you going? I hope all is well for you. Hugs, Annie

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2 replies
alleycatkate | @alleycatkate | Nov 17, 2019
In reply to @anniepie "Thanks Kate @alleycatkate -- the fires came about 3 miles from me but were very close..." + (show)
@anniepie

Thanks Kate @alleycatkate -- the fires came about 3 miles from me but were very close for my niece. I have used a mask on some days for the smoke but keep all the windows closed, and use my asthma puffer a bit more. I will be careful. How are you going? I hope all is well for you. Hugs, Annie

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@anniepie Hi Annie. That is distressing that the fires are so close. I hope you and your family will be safe and also that your health will not suffer from this event. My Best wishes. Kate. All is good here!!☀️

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