Do Bronchiectasis and MAC go together?

Posted by conniec @conniec, Apr 27, 2017

I was diagnosed with this in January. Had pneumonia in November. My dr didn’t tell me to get a sputum sample til my second visit this past week. He started me On nebs and aerobika treatment. I had a second Ct scan and am not sure if there were changes. Does bronchiectasis and MAC go together. It seems like most people here talk about MAC and not bronchiectasis?

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Welcome to the forum. I have been on that drug protocol twice in the last year and cannot tolerate them. I have now been referred to an infectious disease specialist. Waiting until June 20 for appointment. Other than the standard drugs, has anyone else had luck with others.

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Hi new members @suzylulu @russt @kate1320 @tfritschy @dcathell.
How are you doing? I hope that you feel welcome in our MAC group. I also invite you to read through our main discussion

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2pMrIB

In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members. Come on over. Introduce yourselves and ask anything.

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hello, I have a dead portion in my lung too, a good size chunk actually. My
lungs are so bad that they are considering a double lung transplant. Although to
meet me, you would think I was just fine. I owe my good condition now to
treatment at the Mayo Clinic in JAX. Don't know how long I will feel this good,
but for now I will just enjoy it!
 

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@tfritschy

Hello. My name is Teresa and I’ve just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I’m seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of 3 daily AB’s today. I’m in my 50’s and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I’ve faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

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I have the same thing too. I never did the three drug combo. I started
monthly prophylactic antibiotics in 2013. I was diagnosed with MAC in 2005 and
was treated with azithromycin for a short period. Unbeknownst to me, my lungs
were deteriorating steadily until I started at the Mayo in 2013.
 

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hi Suzy, ask your doctor about inhaled antibiotics. Learned at a recent
conference that combining tobramycin with another antibiotic like cipro for two
weeks is good.
 

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Did they indicate at the conference how long to do this regimen?

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hey WW, hope you are doing well. You mentioned "JAX". What is that? Also how long does it take to get an appointment ay Mayo? Im in the process of getting clearance from my doctor and Humana and want to set up an appointment as soon as that happens.
Happy Labor Day,
Russ

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hello Russ, JAX is short for Jacksonville, Fl. everybody down there uses
that abbreviation. It took several months before I could get an appt. It all
depends on how busy they are. They do not require a referral, you just call them
and ask for an appt. They will ask that you bring all of the medical records you
can get your hands on. They will then scan your records right there on the spot
and create a file. I love the Mayo because they operate like a well oiled
machine. Generally, they do labs first thing in the morning, x-rays and/or CT
scans, and any other tests they might need; then you meet with the doctor at the
end of the day. He has all results back and are in his computer. He then goes
over the findings and discusses treatment.
 

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hi @russt,
You’ll find the online appointment request form, as well as phone numbers for Mayo Clinic Jacksonville at the link http://mayocl.in/1mtmR63.

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Just what I hope to hear. Have you ever been to the site in Rochester? I tried to make an appointment at JAX and they told me they don't have any for some time, like you said, and refered me to an afiliate site in Pensacola. I work on the "Roman Coin Principal":
the futher you get away from Rome (Mayo) the less recognizable the coins (medical care) are to the coins struct in Rome, so Im setting my sites on Rodchester, since JAX is not available.
Hope you doing well.
Russ

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Thank you Colleen.
Russ

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Wow! I had no idea they were so booked up now. Good for you to make
sure you get the BEST care.
 

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