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.

kathyhg | @kathyhg | Nov 13, 2019

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!

REPLY
2 replies
janovr | @janovr | Nov 13, 2019
In reply to @hsletter "@windwalker Terri, are you talking about the Mayo Clinic in Jacksonville? What is Dr. Levanthal's replacements..." + (show)
@hsletter

@windwalker Terri, are you talking about the Mayo Clinic in Jacksonville? What is Dr. Levanthal's replacements name please?

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@hsletter ... yes, I need to know too!

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1 reply
suenfl | @suenfl | Nov 13, 2019

Promethazine (Phenergan) worked for me when I had extreme nausea.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 14, 2019
In reply to @janovr "@hsletter ... yes, I need to know too!" + (show)
@janovr

@hsletter ... yes, I need to know too!

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

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 14, 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 This disease certainly is complex. That is why it is so hard to treat. Have you tried candied ginger for your nausea?

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kathyhg | @kathyhg | Nov 14, 2019

I haven’t tried candied ginger but will put it on my grocery list. Thank you.

I drink lemon juice and a few slices of ginger root in hot water (like a tea) in the mornings, when my nausea is bad. I take gravol (ginger only) when the lemon ginger tea doesn’t help.

I feel like I can deal with this, knowing that it’s oart of having Mac and not something else.

Thanks again.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 14, 2019
In reply to @janovr "@kathyhg ... I too am EXTREMELY nauseated ... debilitating ! I could not tolerate the medicine..." + (show)
@janovr

@kathyhg ... I too am EXTREMELY nauseated ... debilitating !
I could not tolerate the medicine in 2015 due to nausea. My nausea is debilitating today.
Nothing helps!😩

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@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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1 reply
heathert | @heathert | Nov 14, 2019
In reply to @kathyhg "I haven’t tried candied ginger but will put it on my grocery list. Thank you. I..." + (show)
@kathyhg

I haven’t tried candied ginger but will put it on my grocery list. Thank you.

I drink lemon juice and a few slices of ginger root in hot water (like a tea) in the mornings, when my nausea is bad. I take gravol (ginger only) when the lemon ginger tea doesn’t help.

I feel like I can deal with this, knowing that it’s oart of having Mac and not something else.

Thanks again.

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@kathyhg The ones I use are called GinGins and they are a chewy lollie and you can buy extra strength, yummy, I think some of the ladies get them from online. Take care

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 14, 2019

I too use Gin Gin - they come in both hard candy & a chewy version. If you cannot find them locally, VitaCost carries them on line. Also Ginger Tea by Traditional Medicinals - in some I drink it over ice slightly sweetened, in cold weather I sip it pretty much all day in place of water. When traveling I drop a Gin Gin in bottled water and shake it up.

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1 reply
sounder27 | @sounder27 | Nov 14, 2019
In reply to @sueinmn "I too use Gin Gin - they come in both hard candy & a chewy version...." + (show)
@sueinmn

I too use Gin Gin - they come in both hard candy & a chewy version. If you cannot find them locally, VitaCost carries them on line. Also Ginger Tea by Traditional Medicinals - in some I drink it over ice slightly sweetened, in cold weather I sip it pretty much all day in place of water. When traveling I drop a Gin Gin in bottled water and shake it up.

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I drink ginger tea by triple leaf teas. It’s available online as well.

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