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.

Katherine, Alumni Mentor | @katemn | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

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@auntnanny .. Jan, thank you for the info. We DO have people on our Connect who were MISDIAGNOSED with MAC/Bronchiectasis but DID have GERD .. but if MAYO says NO .. my gut feeling would be to believe them. Jan I am NOT a doctor .. ONLY you can make your own decisions .. it is YOUR body .. YOUR health .. BUT if I WAS SAYING :bring up lots of dark green, sticky, stringy globs when I’m coughing) it’s hard to say I’m not doing well. .. NO WAY would I be sitting at home writing to Mayo Clinic Connect. I would be getting my fanny on the phone DOING MY "DUE DILIGENCE" .. for MYSELF and TELLING SOMEONE I NEED HELP!! I want the NEXT Pulmonology appointment for a SECOND OPINION to see just what 'YOUR PLAN" is DOES IT INCLUDE PSEUDOMONAS? .. I want to see it in writing .. I want to UNDERSTAND IT! I want to feel comfortable with it! Now Jan that is just ME! Dr Mousa may be the nicest guy in the world but it is NOT his body that is being racked by the coughing!! I'd REQUEST/get that Second Opinion from a DIFFERENT MAYO doctor. A GOOD doctor NEVER resents a request for a second opinion .. IF they do .. they are the wrong doctor for you. Jan, this is JUST my opinion .. YOUR body .. YOUR choices! Hugs! Katherine

REPLY
auntnanny | @auntnanny | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

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Thanks again for your encouragement

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 12, 2017
In reply to @katemn "@auntnanny .. Jan, Welcome! I am not quite sure what you are asking when you say..." + (show)
@katemn

@auntnanny .. Jan, Welcome! I am not quite sure what you are asking when you say "Would like to join the group. Please tell me where to go to do this." Please clarify your request. Hugs! Katherine

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Hi @auntnanny,
Please allow me, as Community Director of Connect, to add my welcome. To join a group, all you have to do is +Follow the group or groups you are interested in. Simply click the word Follow below any group image and description. https://connect.mayoclinic.org/groups/ I see that you are following the MAC & Bronchiectasis group. Perfect.

And to participate, all you have to do is post your questions and messages as you've been doing. You will now receive emails letting you know when a new message is posted as well as a daily digest summarizing the activity in the group.

You'll notice that I removed your email address from one of your messages. We recommend not sharing personal contact information on this public forum. Here are the Connect Community Guidelines and how to use the public forum safely: https://connect.mayoclinic.org/community-guidelines/

If you have any questions about using the site, don't hesitate to ask.

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Katherine, Alumni Mentor | @katemn | Jul 12, 2017

Dear All, I want to thank our Member 128128terry11t Terry for bringing back to us an answer to a question that many of us have had as we visit family or friends .. thank you Terry! Hugs to all! Katherine!

From Member 128128terry11t Terry after visiting NJH and getting answers to her questions: If you travel and don't want to bring a compressor, etc for Saline nebulizer, is it all right to use just the Aerobika while away for a weekend or about a week. Also if you can't do treatment twice a day, is it ok to use Aerobika and Saline nebulizer in morning and just Aerobika for second treatment in afternoon? Answer: Yes to both questions. Better than nothing but make sure that you clean Aerobika EACH time and while away.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 12, 2017
In reply to @jula73 "I am a 73-year-old female with a recent diagnosis of MAC along with a history of..." + (show)
@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

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Hi @mariposa, I would like to add my welcome and also introduce you to fellow Canadians who are members of the Connect MAC group. Please meet @megan123 @teresaml @daviseyes @joanney and @tessie. They may be able to help with advice specific to finding a MAC specialist in Canada and dealing with the climate there.

REPLY
terryb1 | @128128terry11t | Jul 13, 2017
In reply to @katemn "Dear All, I want to thank our Member 128128terry11t Terry for bringing back to us an..." + (show)
@katemn

Dear All, I want to thank our Member 128128terry11t Terry for bringing back to us an answer to a question that many of us have had as we visit family or friends .. thank you Terry! Hugs to all! Katherine!

From Member 128128terry11t Terry after visiting NJH and getting answers to her questions: If you travel and don't want to bring a compressor, etc for Saline nebulizer, is it all right to use just the Aerobika while away for a weekend or about a week. Also if you can't do treatment twice a day, is it ok to use Aerobika and Saline nebulizer in morning and just Aerobika for second treatment in afternoon? Answer: Yes to both questions. Better than nothing but make sure that you clean Aerobika EACH time and while away.

Jump to this post

As Katherine always tells us, it is important to do your own due diligence. Because your medical professional may think differently, It is wise that you confirm with your own doctor whether or not it is appropriate for you to use an aerobika/nebulizer in morning and only the aerobika for second treatment if you find the use of a nebulizer/compressor burdensome later in the day. In addition ask if it is acceptable to only use an aerobika without a nebulizer/compressor when traveling for short periods of time. Just wanted to add this brief postscript. Terry

REPLY
Katherine, Alumni Mentor | @katemn | Jul 13, 2017
In reply to @katemn "Dear All, I want to thank our Member 128128terry11t Terry for bringing back to us an..." + (show)
@katemn

Dear All, I want to thank our Member 128128terry11t Terry for bringing back to us an answer to a question that many of us have had as we visit family or friends .. thank you Terry! Hugs to all! Katherine!

From Member 128128terry11t Terry after visiting NJH and getting answers to her questions: If you travel and don't want to bring a compressor, etc for Saline nebulizer, is it all right to use just the Aerobika while away for a weekend or about a week. Also if you can't do treatment twice a day, is it ok to use Aerobika and Saline nebulizer in morning and just Aerobika for second treatment in afternoon? Answer: Yes to both questions. Better than nothing but make sure that you clean Aerobika EACH time and while away.

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@128128terry11t, Terry thanks for adding this good advice. Each of our medical situations are so different .. what MIGHT work for one may be detrimental to another. As always .. we must each be own own best advocate! But again, thank you Terry for bringing back this info for our Group! Hugs to all! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 13, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

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@3ling12 You
are right Ling. Dr. said that I am not immunosuppressed. Crappy lungs (i.e.
bronchiecstsis makes for great opportunity for MAC infections, etc.)
 
 
 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 13, 2017
In reply to @virtuous69 "Sorry folks, I'm referring to the MAC, not TB unless they are related?" + (show)
@virtuous69

Sorry folks, I'm referring to the MAC, not TB unless they are related?

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@tdrell Yes, Terri, my grandmother was in a sanitorium for years. It was
located in the mountains of Virginia. It was sad because her oldest daughter who
was maybe around 12 yrs old had to raise her two younger brothers. She grew up
to be a nurse.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 13, 2017
In reply to @katemn "@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as :..." + (show)
@katemn

@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine

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@katemn LOL!
I&apos;ve been called worse.    ; )
 

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