(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.

Katherine, Alumni Mentor | @katemn | Apr 26, 2016

I think you were SO smart to fly from the East Coast to Minnesota Mayo Clinic! My attitude is that we are given one body in this life time .. I am willing to use my financial resources to take care of that body best I can! Good for you! Beg, borrow .. NOT steal to take care of yourself!

Katherine, Alumni Mentor | @katemn | Apr 26, 2016

In reply to @nannette "Katherine, @katemn I don't think your post is weird at all. I'm so thankful to see..." + (show)

Nan, I so agree .. I just wish I'd found a forum like this when I was first diagnosed .. I was SO scared! If I'd read the past notes on this forum It would have helped SO much in gaining knowledge about our disease .. it would have made my journey SO much more serene. Frankly that is why I spend my time on the forum .. it is kind of like my form of volunteering. Can't think of a better use of my time .. helping people on the same journey that was so scary for me! If I can help just one person it will be all worth it! Plus I am learning from everyone at the same time ... win/win!

janovr | @janovr | Apr 26, 2016

In reply to @nannette "Katherine, @katemn I don't think your post is weird at all. I'm so thankful to see..." + (show)

Kathryn, You indeed are volunteering for many appreciative people on this journey. I found a new doctor who specializes in NTM through the same volunteer efforts of a lady in Atlanta who is now testing negative for NTM! 
So grateful and thankful for all of you! 
Jan in GA

nannette | @nannette | Apr 26, 2016

Thanks @katemn and @ehliny for your experiences about not starting the drugs if you're not really sick. This is tough because my pulmonologist, I believe is following the recommendations...like what the textbook says sort of...but is probably not as well versed on the subject as doctors in Denver and Minnesota...I've talked to my closest friend tonight, who is a doctor (not a pulmonologist) and she's going to talk to some pulmonologists she knows where she is in California and I'll guess I'll decide by the end of this week whether to pull out. There's this part of me, though, that says if you wait...won't you just get sicker and then it's harder to get rid of? Nan in SC

ladyjane85 | @ladyjane85 | Apr 27, 2016

In reply to @nannette "@ehliny: Thanks for your info.I guess this is what worries me about not being near big..." + (show)

I do not know your whole story, but taking antibiotics also removes 
the good bugs in your system, therefore leading to more problems. only 
take the med for as short a time as necessary, or not if dr says do 
not.

cacallahan | @cacallahan | Apr 29, 2016

Hi. This is only my 2nd time writing on this site. I have been diagnosed with MAC about a month ago, and now see a pulmonologist & a infectious disease Dr. I start my cocktail of meds on 5-2-16. Actually, I should have started them this week, but I am having such panic attacks that I am waiting until Monday, I am sooo scared. I am a caregiver to my elderly parents who are sick and an adult (34) yr old son who is handicap. I am afraid I will be too sick to take care of them. I have never been this scared in my life. I have decided if the meds, all 4 to start with make me to ill, I am going to stop taking them. I can't imagine being so sick for the next 18 months. I think I would rather die. I am just a mess and cry constantly. Ok, I won't bring my problems to this anymore. I just needed to get this off my chest. SCARED!!!!!

e345l | @e345l | Apr 29, 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

Jump to this post

I am new to this site and would like to participate in the discussions. Would like to hear from someone, I have the MAC and bronchiectasis also. e345l

Colleen Young, Connect Director | @colleenyoung | Apr 29, 2016

@cacallahan, this is exactly the place to bring such problems. Here is where you can talk frankly about your fears and concerns with people who've been there. Tell us a bit more about the meds you'll be taking and what concerns you the most.
What 4 medications will you be taking?
What side effects have you been told about? Which ones concern you the most?

e345l | @e345l | Apr 29, 2016

In reply to @katemn "I think you were SO smart to fly from the East Coast to Minnesota Mayo Clinic!..." + (show)

What 5 antibiotics were you taking Katherine? I saw that in a previous 
post, am new to all this so I hope I am replying right. Has your skin ever 
turn bronze from using rifabutin for 9 months? I was on 3 but at a stand 
still now as it didn't stop the MAC. Don't know what is next. e345l

Katherine, Alumni Mentor | @katemn | Apr 29, 2016

Hello 3451, no my skin did not turn bronze .. that might have been an advantage to this boring pale faced person .. BUT I was warned that my urine would have a golden cast .. which it certainly did!
In terms of the antibiotics .. keep in mind that each of us have INDIVIDUAL diagnosis! My diagnosis INCLUDED in addition to the MAI/MAC a SECOND mycobacterium: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES which is difficult to treat!

I started 10/11: Ethambutol 800mg/ Azithromycin 250mg/ Avelox 400mg/ 2-Rifampin 300mg/ Amikacin 2ml-inhaled 3x week(5xwk until 10/12) I was taken off Ethambutol 800mg 02/12 when I began to lose color and distance vision. It took about a year but I got back nearly 100% of the vision back because I had a wonderful Ophthalmologist who caught it early! How I realized the loss was that we were on a road trip .. I realized I could not read the green street or overhead freeway signs as quickly as my husband when we “tested” my vision. I immediately made an appointment. She took me off the Ethambutol 800mg as a probable cause and as I said .. it took about a year .. but my color and distance vision did return .. for which I was very grateful.

KEEP IN MIND .. because it happened to me .. DOES NOT mean it will happen to you! Each of our bodies are different and we will react differently .. like beautiful snowflakes .. we are uniquely different .. that is the beauty of our lives! Go in serenity!

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