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.

heathert | @heathert | Aug 21, 2016
In reply to @cila "Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you..." + (show)
@cila

Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you my Dr. told me about the side effect of the meds, also she mentioned that some people can't tolerate the meds.  I asked what will happened if I chose not to take the meds, b/c of the side effect scares me to take them.  I also saw another plum. Dr. to get a second opinion. Sure enought I have MAC and bronchiectasis, now I take the 3 meds and on my 3rd month. I have some of the side effect but its not what the Dr. said. She should have said that everyone react different on the meds, b/c our body are all different. It will get better just have faith. I will have you in my prayer just like i pray for everyone in this forum. I'm so thankful I found this forum and learned so much with everyone. 

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Hi @suttonmac2009, thanks for sharing your info.Have you ever had a clear sputum or your nodules/cavitarys clear on the ct scan, or have they just been managing your mac for all these years? Have you ever become immune to any of the drugs?

REPLY
shelby | @suttonmac2009 | Aug 21, 2016
In reply to @cila "Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you..." + (show)
@cila

Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you my Dr. told me about the side effect of the meds, also she mentioned that some people can't tolerate the meds.  I asked what will happened if I chose not to take the meds, b/c of the side effect scares me to take them.  I also saw another plum. Dr. to get a second opinion. Sure enought I have MAC and bronchiectasis, now I take the 3 meds and on my 3rd month. I have some of the side effect but its not what the Dr. said. She should have said that everyone react different on the meds, b/c our body are all different. It will get better just have faith. I will have you in my prayer just like i pray for everyone in this forum. I'm so thankful I found this forum and learned so much with everyone. 

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Hi @heathert,
I've been clear from MAC for about 18 months. I think the Doc. is going to take me off meds this week. I went off 3 years ago and then it came back, hope this time it works. Last time I wasn't clear for as long. My Doc. feels it better to go off if things look good than to be on antibiotics for ever. The nodules have gotten smaller, although they say they usually don't go away for good. I have never become immune to the drugs.( diagnosed 2010) I had a sensitivity test last year, so it's good to know they still work. I had a recent CT scan last month so I'll go over it with my Dr. on Thursday. I'll keep you posted.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 21, 2016
In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)
@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

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Hi @kaystrand,
I noticed you added your picture as an attachment to your post. If you would like to add your picture to your profile, here's how:

1. Click the “Profile and settings” or avatar button in the top right.demo profile button
2. Select “Account Settings” from the drop-down menu.demo account settings drop-down
3. Scroll down to the “SITE PROFILE” section.
4. Click the “Upload Photo” button to the right of the page under the “PROFILE PICTURE” heading.demo upload photo button
5. Click “Choose File” to select a photo from your files. The file cannot be larger than 5 MB and must be in a JPG, GIF or PNG format.demo choose file button
6. Your photo will then appear in the avatar box as it will appear on your profile. Once you are happy with your photo selection, click “I’m finished. Close this popup.”demo close this popup button
7. The popup will close and you’ll be back on the profile page. To finish, scroll to the bottom of the page and click “Save Profile.”

Here are the instructions with pictures: https://connect.mayoclinic.org/get-started-on-connect/#how-to-upload-profile-picture

REPLY
Katherine, Alumni Mentor | @katemn | Aug 21, 2016

Just wanted to hop on here and agree with Colleen on this .. a photo is absolutely not necessary .. BUT I JUST LOVE when anyone adds their first name and a photo to their notes .. just feels like chatting with a friend! SO .. WHEN you feel like it .. please do join us! At my age I really appreciate it when you add your name to the end of your note .. helps me! OK .. so I'm NOT into dementia YET!! But every little bit help!! Sending every single one of you a Big Hug! Katherine

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 21, 2016
In reply to @katemn "Just wanted to hop on here and agree with Colleen on this .. a photo is..." + (show)
@katemn

Just wanted to hop on here and agree with Colleen on this .. a photo is absolutely not necessary .. BUT I JUST LOVE when anyone adds their first name and a photo to their notes .. just feels like chatting with a friend! SO .. WHEN you feel like it .. please do join us! At my age I really appreciate it when you add your name to the end of your note .. helps me! OK .. so I'm NOT into dementia YET!! But every little bit help!! Sending every single one of you a Big Hug! Katherine

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Hi @kaystrand, I agree, it is great to have a picture to go with your story! Teresa

REPLY
tdrell | @tdrell | Aug 21, 2016
In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)
@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

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Thanx a million for the heads up re theworkshop in Denver on Sept 17... We<br>were all ready planning a visit starting on Sept 16! So will plan on<br>trying to attend! Look how quickly positive items are coming as a result of<br>this connection! Thank you!<br>

REPLY
tdrell | @tdrell | Aug 22, 2016
In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)
@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

Jump to this post

Wondering about names of doctors to try to make an appointment with in Denver at Natl Jewish hospital...two names pop up for NTM....a Dr Charles Daley... And a Dr Shannon Kasperbauer.... DR Daley is older...has an amazing long resume...Dr K has a shorter but impressive one.

REPLY
Kathryn S Wilbur | @kwilbur | Aug 22, 2016
In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)
@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

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Thank you for telling me your story. The posts I am reading show that, while the meds are strong, it doesn't mean your world has to stop. I take care of 1 and 1/2 acres of land and find that that really helps. Of coruse I do a little at a time. I work for about three hours. If I can't do it one day, I can do it the next. My school has a good exercise/wellness program which I should participate in.

REPLY
Flib | @flib | Aug 22, 2016
In reply to @katemn "Melissa, I so understand how tough it is to have not just one but two! Mine..." + (show)
@katemn

Melissa, I so understand how tough it is to have not just one but two! Mine was: *MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) (08/07 CULTURE) (09/11 began antibiotic treatment) and then * MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES (09/11)

Mayo Clinic at Rochester MN told me that my second mycobacterium diagnosed in 2011 was the most serious of the two (despite it being classified as a "subspecies") and that I really must go on the antibiotics after waiting since being diagnosed in 2007.

But be assured .. after being on four antibiotics for thirty months .. I have had negative cultures since May 2014. I am blessed in finding a doctor at Mayo who specializes in MAI.

I won't kid anyone going through this. I was so sure that all the coughing was caused by the MAI. Ok .. then when I went off the antibiotics in MAY 2011 .. why the horrific coughing?? Then I start researching the Bronchiectasis I also noticed on my medical records but ignored because the MAI was so serious.

Then was told they really don't know .. chicken/egg scenario. MAI/Bronchiectasis. Which comes first .. which leads to the other? Do you develop Bronchiectasis first .. the mucus stays in the bronchial tubes and becomes a breeding ground for the mycobacterium .. OR does the MAI come first and develops into the Bronchiectasis? The doctors do NOT have an answer.

BUT Bronchiectasis did not seem the only answer because my coughing seemed to be SO triggered by certain things .. to me it seemed like dust .. etc. I then saw an Environmental Pulmonologist at Mayo Clinic who pointed out another thing on my medical record: Reactive Airway Disease. WHAT??? Another thing I had just ignored because of the other pressing medical issues? Yep! Well I was just positive I could get a "quick fix" by seeing an Allergist .. getting two dust mite allergy shots per week for 12-16 weeks and get FIXED!! No more coughing!

Nope! After allergy testing I was SHOCKED to find I do NOT have a dust mite allergy. The wonderful allergy doctor explained it thus: If someone hits you on the head .. you are not allergic to being hit on the head .. you are just reacting to being hit on the head so you have to avoid being hit on the head!!

This was greatly dismaying to me as I wanted my "quick fix" but finally it did make sense to me. I would just have to find a way to avoid dust mites because there is no quick fix for me. I will not bore you with the HUGE effort I have taken but I am now using a multitude of products and procedures .. it has helped but has not eliminated the coughing.

So for those of you still dealing with the beginnings of MAI .. I do not want to discourage you .. but I also don't want to pretend the journey is without difficulties. What I will say is this .. when I was diagnosed a wonderful person told me: "If we all put our troubles in a great big circle .. more than likely most of us would take back our own troubles." My husband and I then reminded us that we have not lost a child .. we have not lost a grandchild .. THAT would be a trouble. We will take back our troubles with an attitude of gratitude. I hope you can also. With hugs and well wishes for you all .. I know I have not written in a long time .. my husband is now in Stage 4 cancer .. but doing well so far with a new type of chemo.
Katherine

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I too have mac and bronchiectasis. Diagnosed six years ago. I have not taken the meds but will probably begin them this year. I've gotten very weak, losing a lot of weight. Obviously, I have been resistant to the meds as many people seem to have found them worse than the diseases and, I believe the recurrence rate is within two years. I've manage fairly well thus far but I'm now so low energy I'm open to trying the meds.

REPLY
Katherine, Alumni Mentor | @katemn | Aug 22, 2016
In reply to @katemn "Melissa, I so understand how tough it is to have not just one but two! Mine..." + (show)
@katemn

Melissa, I so understand how tough it is to have not just one but two! Mine was: *MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) (08/07 CULTURE) (09/11 began antibiotic treatment) and then * MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES (09/11)

Mayo Clinic at Rochester MN told me that my second mycobacterium diagnosed in 2011 was the most serious of the two (despite it being classified as a "subspecies") and that I really must go on the antibiotics after waiting since being diagnosed in 2007.

But be assured .. after being on four antibiotics for thirty months .. I have had negative cultures since May 2014. I am blessed in finding a doctor at Mayo who specializes in MAI.

I won't kid anyone going through this. I was so sure that all the coughing was caused by the MAI. Ok .. then when I went off the antibiotics in MAY 2011 .. why the horrific coughing?? Then I start researching the Bronchiectasis I also noticed on my medical records but ignored because the MAI was so serious.

Then was told they really don't know .. chicken/egg scenario. MAI/Bronchiectasis. Which comes first .. which leads to the other? Do you develop Bronchiectasis first .. the mucus stays in the bronchial tubes and becomes a breeding ground for the mycobacterium .. OR does the MAI come first and develops into the Bronchiectasis? The doctors do NOT have an answer.

BUT Bronchiectasis did not seem the only answer because my coughing seemed to be SO triggered by certain things .. to me it seemed like dust .. etc. I then saw an Environmental Pulmonologist at Mayo Clinic who pointed out another thing on my medical record: Reactive Airway Disease. WHAT??? Another thing I had just ignored because of the other pressing medical issues? Yep! Well I was just positive I could get a "quick fix" by seeing an Allergist .. getting two dust mite allergy shots per week for 12-16 weeks and get FIXED!! No more coughing!

Nope! After allergy testing I was SHOCKED to find I do NOT have a dust mite allergy. The wonderful allergy doctor explained it thus: If someone hits you on the head .. you are not allergic to being hit on the head .. you are just reacting to being hit on the head so you have to avoid being hit on the head!!

This was greatly dismaying to me as I wanted my "quick fix" but finally it did make sense to me. I would just have to find a way to avoid dust mites because there is no quick fix for me. I will not bore you with the HUGE effort I have taken but I am now using a multitude of products and procedures .. it has helped but has not eliminated the coughing.

So for those of you still dealing with the beginnings of MAI .. I do not want to discourage you .. but I also don't want to pretend the journey is without difficulties. What I will say is this .. when I was diagnosed a wonderful person told me: "If we all put our troubles in a great big circle .. more than likely most of us would take back our own troubles." My husband and I then reminded us that we have not lost a child .. we have not lost a grandchild .. THAT would be a trouble. We will take back our troubles with an attitude of gratitude. I hope you can also. With hugs and well wishes for you all .. I know I have not written in a long time .. my husband is now in Stage 4 cancer .. but doing well so far with a new type of chemo.
Katherine

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Hello flib, welcome! So glad you found our Forum! I would encourage you to read through all the pages of our Forum .. I think you will find lots of information .. encouragement .. and support for your journey ahead. To me reading the pages is just a part of our "Due Diligence" in taking care of this one body we have been given in this lifetime.

If you read through the pages you will find that I was diagnose in 2007 .. did finally take the antibiotic treatment.. AND have been stable since May 2014 .. MORE than two years!!

I have what one internist called "a hyper sensitive system" .. and have a LONG list of NOT really allergic reactions to various drugs .. but really more side effects. So I had a lot of concerns. BUT there is testing to see just what antibiotic will work for just what mycobacterium. THEN because each of our bodies is VERY different .. you will find on this Forum that in the beginning of the treatment you just plain have to experiment with the timing of taking the meds .. and be patient with your body as it adjusts to this new world! AND KNOW that you WILL NOT get all those crazy side effect in the weird insert you get with the meds!

I lost 18% of my body weight during the height of my illness .. but now have a nice weight .. live a VERY nice life .. travel .. have fun. flib, I would really encourage you to "keep the faith" .. keep coming back to our Forum .. do your Due Diligence in educating yourself about ALL your options .. the ins and outs of the journey. Then seek out a Pulmonologist who is currently treating a good number of MAC/MAI patients so they are up on the best treatment for you. AND keep coming back .. we ALL will be here for you! I know this is a tough time for you .. so I am sending you a Big Hug! Katherine

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