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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 6, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

Hi Barb, the bronch washings are done by a procedure called a
&apos;bronchioscope&apos;. You will be sedated, hopefully with a twilight anesthesia, a
tube inserted down your throat and into your lungs. The Dr will squirt a small
amount of saline into the lungs. They remove the liquid and send it to a
lab. The liquid they bring up from your lungs contains all kinds of info. They
will lab test it for various organisms, inflammation cells, and other abnormal
things. They may snip a tiny piece of your lung while down there to biopsy it.
They did mine that way. I would FIRST ASK WHY they find this method necessary
over getting a good sputum culture. My Dr. at the Mayo said that the
bronchioscope precedure I had done somewhere else was totally uneccessary. So,
always ask WHY they are choosing that route. I am sure there are
instances where that kind of diagnostic tool is neccessary.
 

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 6, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

@windwalker I appreciate the proactive approach you use by asking "why" - that is great. A good lesson for us all who deal with doctors on a regular basis. Thanks for that input. Teresa

REPLY
Barbara Ann | @bschaper2 | Jun 6, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

Thank you!

REPLY
Barbara Ann | @bschaper2 | Jun 6, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

I had two bronchoscopes in January/February -- had Strain A flu which went into double pneumonia (24 days in hospital) and then another hospital stay with pneumonas (sp?) along with respiratory failure - I wonder if my pulm doc just did the bronch. I will ask. I try to remember to ask why but why not is always good to ask too!

Next question -- Why space the 3 anitibiotics out? I asked my ID physician yesterday if I should be spacing them and he said, no. I have been taking them Monday morning after breakfast, Wednesday after lunch and Friday after supper.

Thank you - -Barb S

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 6, 2017

FYI folks. This discussion thread is now 213 pages long with over 3100 posts. @katemn is being modest with 25-30 pages. What an amazing support and information exchange going on here. In addition to this main discussion, I like how you've started discussions according to specific subjects that are listed on the group homepage here: http://mayocl.in/2ouP4e8

Be sure to follow the group, to not miss any posts. Simply click the follow + on the group homepage.

REPLY
1 reply
Katherine, Alumni Mentor | @katemn | Jun 6, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

@bschaper2, Barb, IF you have had zero side effects so far taking al 3 at once.. OK .. BUT for me .. with my history to drug sensitivity .. I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it! YOU make your own decision on this .. NOT the doctor .. it is YOUR body .. YOUR life! Good luck! Hugs to all! Katherie

REPLY
Ruh | @ruhdesb | Jun 6, 2017
In reply to @katemn "@bschaper2, Hello and Welcome to our Connect Forum! We are so glad you found us! You..." + (show)
@katemn

@bschaper2, Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease.

". Who is a good physician to request at Mayo Clinic in Jacksonville?" From my File Cabinet:
MAYO CONTACT INFO .. JACKSONVILLE FL
@windwalker, Terri shared 01/17 : Mayo Clinic in Jacksonville, Fl. and I see Dr. Jack Leventhal (pulmonologist) he has been a real blessing and life changer for me. The Mayo has an easy to use website with a "make an appointment tab. You do not need a referral. They have a dept to ask if your insurance will cover you there. They are a non-profit hospital, therefore, they don't gauge on pricing either.
*Another member: pulmonologist at the Mayo Clinic in Jacksonville FL. His Name is Dr. Jack Leventhal. This man has saved my life I am sure. I was put on alternating monthly antibiotics for three yrs. that worked for a while. Now I am on alternating months of an additional antibiotic called tobramycin. It is super expensive but it has totally dried up the infection. It is what they commonly give to CF patients to help keep the myco-organisms at bay
*or Dr Chandler.
Your " my nebulizer mouthpiece was never cleaned, just thrown in a bag for the next visit " .. From my File Cabinet:
From Member @jenblalock, Every few days I sterilize by putting in Dr. Browns bags (can get at Amazon) with a few ounces of distilled water and microwaving on high for 2 minutes. https://www.amazon.com/Dr-Browns-Microwave-Steam-Sterilizer/dp/B0035LQNNE?th=1 ($5.99 About the product: Sterilized eliminating 99.9% of most household bacteria and germs Five sterilizer bags come to a pack and each bag is reusable up to 20 times This offers 100 uses per retail pack)
https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika
AEROBIKA AND NEBULIZERS .. CLEANING OF From Member Linda @lindam272 We benefit from sharing information with each other. *PR0BLEM I learned from my Respiratory Therapist: I WAS NOT sterilizing my equipment DAILY! I sterilize the three main pieces of the Aerobika plus my nebulizers! * my Respiratory Therapist suggested using a baby bottle sterilizer for DAILY USE FOR BOTH MY Aerobika and Nebulizers * I have a paper from my Respiratory Therapist that outlines how to clean and disinfect respiratory equipment and it says to disinfect at least daily and gives 4 different options for doing that – one is to microwave in a microwavable bowl filled with water for 5 mins or Electric Baby Steam Sterilizer (bottle sterilizer) for 6 – 8 mins. I’ve been sterilizing for 4 mins according to the instructions with the sterilizer. Now that I’m reading this sheet again, I’ll up it to 6 mins and hope I don’t melt anything. It sure is confusing and some instructions contradict others. I just do the best I can and pray that it’s good enough.
Here’s my routine: saline treatment (IF that is part of your routine) , Aerobika, nebulizer treatment, Aerobika. I then agitate all parts in hot soapy water, allow part to sit for 10 to 15 minutes .. and then rinse REALLY well. I don’t use distilled water. Just tap water. Put all parts in the bottle sterilizer .. I use the baby bottle sterilizer daily. I usually let it cool for a bit. Remove parts. I lay out the parts on a clean paper towel to dry. Allow sterilizer to dry. Not saying this is the “right” way but it works for me.

Your question: Recommendation on a ID physician, please? Orlando person, are you still out there? I don't have a clue. Anyone jump in? Hugs to all! Katherine

Jump to this post

Please disconnect me from these messages....PLEASE...I have tried and tried and tried and begged...Let me go!

REPLY
Katherine, Alumni Mentor | @katemn | Jun 6, 2017
In reply to @katemn "@bschaper2, Hello and Welcome to our Connect Forum! We are so glad you found us! You..." + (show)
@katemn

@bschaper2, Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease.

". Who is a good physician to request at Mayo Clinic in Jacksonville?" From my File Cabinet:
MAYO CONTACT INFO .. JACKSONVILLE FL
@windwalker, Terri shared 01/17 : Mayo Clinic in Jacksonville, Fl. and I see Dr. Jack Leventhal (pulmonologist) he has been a real blessing and life changer for me. The Mayo has an easy to use website with a "make an appointment tab. You do not need a referral. They have a dept to ask if your insurance will cover you there. They are a non-profit hospital, therefore, they don't gauge on pricing either.
*Another member: pulmonologist at the Mayo Clinic in Jacksonville FL. His Name is Dr. Jack Leventhal. This man has saved my life I am sure. I was put on alternating monthly antibiotics for three yrs. that worked for a while. Now I am on alternating months of an additional antibiotic called tobramycin. It is super expensive but it has totally dried up the infection. It is what they commonly give to CF patients to help keep the myco-organisms at bay
*or Dr Chandler.
Your " my nebulizer mouthpiece was never cleaned, just thrown in a bag for the next visit " .. From my File Cabinet:
From Member @jenblalock, Every few days I sterilize by putting in Dr. Browns bags (can get at Amazon) with a few ounces of distilled water and microwaving on high for 2 minutes. https://www.amazon.com/Dr-Browns-Microwave-Steam-Sterilizer/dp/B0035LQNNE?th=1 ($5.99 About the product: Sterilized eliminating 99.9% of most household bacteria and germs Five sterilizer bags come to a pack and each bag is reusable up to 20 times This offers 100 uses per retail pack)
https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika
AEROBIKA AND NEBULIZERS .. CLEANING OF From Member Linda @lindam272 We benefit from sharing information with each other. *PR0BLEM I learned from my Respiratory Therapist: I WAS NOT sterilizing my equipment DAILY! I sterilize the three main pieces of the Aerobika plus my nebulizers! * my Respiratory Therapist suggested using a baby bottle sterilizer for DAILY USE FOR BOTH MY Aerobika and Nebulizers * I have a paper from my Respiratory Therapist that outlines how to clean and disinfect respiratory equipment and it says to disinfect at least daily and gives 4 different options for doing that – one is to microwave in a microwavable bowl filled with water for 5 mins or Electric Baby Steam Sterilizer (bottle sterilizer) for 6 – 8 mins. I’ve been sterilizing for 4 mins according to the instructions with the sterilizer. Now that I’m reading this sheet again, I’ll up it to 6 mins and hope I don’t melt anything. It sure is confusing and some instructions contradict others. I just do the best I can and pray that it’s good enough.
Here’s my routine: saline treatment (IF that is part of your routine) , Aerobika, nebulizer treatment, Aerobika. I then agitate all parts in hot soapy water, allow part to sit for 10 to 15 minutes .. and then rinse REALLY well. I don’t use distilled water. Just tap water. Put all parts in the bottle sterilizer .. I use the baby bottle sterilizer daily. I usually let it cool for a bit. Remove parts. I lay out the parts on a clean paper towel to dry. Allow sterilizer to dry. Not saying this is the “right” way but it works for me.

Your question: Recommendation on a ID physician, please? Orlando person, are you still out there? I don't have a clue. Anyone jump in? Hugs to all! Katherine

Jump to this post

@ruhdesb, From Colleen .. it is very easy .. just do the following:
I understand that the volume of emails from Connect can get overwhelming at times, especially when dealing with your health. You can control your account settings here: https://connect.mayoclinic.org/account
You can: - Turn off all email notifications
OR - Select to receive only those groups and discussions you follow
Please let me know if you need further help in how to do this, but writing to me here: https://connect.mayoclinic.org/contact-a-community-moderator/
PS: You can also click "unsubscribe" at the bottom of any email you receive from Connect by using the pull down menu "UNFOLLOW. DO NOT NOTIFY ME"

REPLY
Ruh | @ruhdesb | Jun 6, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

I have tried everything...clicking unsubscribe doesn't work, going to Katherine's site came back "not available", I have blocked it through Google directions ...begged, pleaded...nothing will stop the 25 to 50 posts per day. I have MAC but I am not ready for all the chat.

REPLY
ling123 | @ling123 | Jun 6, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

@ruhdesb Have you tried this: Log in to the website. Select Account Settings from Profile and Settings menu (a litter person image in a circle with a down arrow next to it); scroll down to find Email Notifications. Click on +Edit next to Groups. If no group is showing in this section, type MAC & Bronchiectasis in the Add Groups field. Once it is added, the group name should have a bullet point to the left of it and a down arrow to the right. Click the down arrow to select "Unfollow. Do not notify me about this anymore". If there is already a group name showing in this section, just do the very last step. Hope this helps.

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