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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 12, 2019
In reply to @sounder27 "Windwalker. What is a suseptibility test. I have only had a sputum culture about 4 or..." + (show)
@sounder27

Windwalker. What is a suseptibility test. I have only had a sputum culture about 4 or 5 years ago.

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@sounder27 A suseptibility test is supposed to be done the time of your sputem test. It is a test for which specific antibiotics will work on whatever infection you have; whether it be mac, pseudomonas, or some other bug.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 12, 2019
In reply to @jasmine321 "Hello @heathert Did you have any side effects? I started Amikacin inhalation and the big 3..." + (show)
@jasmine321

Hello @heathert Did you have any side effects? I started Amikacin inhalation and the big 3 in April. One week after I started the Arikayce, I began having hoarseness which wasn’t going away. I saw my pulmonologist after week 2 and he put the Arikayce on hold for one week. He told me to do the albuterol inhalation before I do the Arikayce inhalation when I resume the treatment. I am on my 5th week of Arikayce and my voice is again croaky. I called my pulmonologist to inquire if it’s ok to switch to every other day instead of the daily treatment. I am waiting for him to return my call. I am wondering if switching it to every other day will still be effective.

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@jasmine321 Hi. Please keep us posted on what your pulmonolgist has you do regarding the Amikacin. I hope you can get it figured out.

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1 reply
Garnet | @lampstone | Jun 13, 2019
In reply to @Paula_MAC2007 "I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that..." + (show)
@Paula_MAC2007

I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 - April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.

Over the years, I grew to feel like my old self - although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!

Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist - to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.

Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it's not real concrete yet.

So my MAC appears to no longer be 'resting'.

I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.

I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!

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See the discussion i just posted. I am kind of in your situation.

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suzyqueue | @suzyqueue | Jun 13, 2019
In reply to @jasmine321 "Hello @heathert Did you have any side effects? I started Amikacin inhalation and the big 3..." + (show)
@jasmine321

Hello @heathert Did you have any side effects? I started Amikacin inhalation and the big 3 in April. One week after I started the Arikayce, I began having hoarseness which wasn’t going away. I saw my pulmonologist after week 2 and he put the Arikayce on hold for one week. He told me to do the albuterol inhalation before I do the Arikayce inhalation when I resume the treatment. I am on my 5th week of Arikayce and my voice is again croaky. I called my pulmonologist to inquire if it’s ok to switch to every other day instead of the daily treatment. I am waiting for him to return my call. I am wondering if switching it to every other day will still be effective.

Jump to this post

Try gargling and rinsing with very warm water immediately after your Arikayce treatment. The medicine is thick and sticky and sticks to your vocal chords. Also, I found doing the treatment at night before bed helps since the vocal chords rest while sleeping.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 14, 2019
In reply to @kathyhg "Oops. Sorry for another post but I thought you meant Western University (hospital) rather than Toronto..." + (show)
@kathyhg

Oops. Sorry for another post but I thought you meant Western University (hospital) rather than Toronto Western Hospital.

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Hey @kathyhg, there's a small group of Canadians in this MAC group. You can find @megan123 and the rest of them in this discussion:
- Anyone from Canada? https://connect.mayoclinic.org/discussion/anyone-from-canada/

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 15, 2019
In reply to @colleenyoung "Hey @kathyhg, there's a small group of Canadians in this MAC group. You can find @megan123..." + (show)
@colleenyoung

Hey @kathyhg, there's a small group of Canadians in this MAC group. You can find @megan123 and the rest of them in this discussion:
- Anyone from Canada? https://connect.mayoclinic.org/discussion/anyone-from-canada/

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@kathhg, here are more Canadians, @nick52, @suzyqueue, @lauriefrancis, and @mariposa. They may be others as well. @megan123 knows of a support group that physically meets up there near or in Toronto. You can check out http://www.ntminfo.org for local support groups in your area.

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jasmine321 | @jasmine321 | Jun 15, 2019
In reply to @suzyqueue "Try gargling and rinsing with very warm water immediately after your Arikayce treatment. The medicine is..." + (show)
@suzyqueue

Try gargling and rinsing with very warm water immediately after your Arikayce treatment. The medicine is thick and sticky and sticks to your vocal chords. Also, I found doing the treatment at night before bed helps since the vocal chords rest while sleeping.

Jump to this post

Thank you @suzyqueue. I will heed your advice.

REPLY
jasmine321 | @jasmine321 | Jun 15, 2019
In reply to @windwalker "@jasmine321 Hi. Please keep us posted on what your pulmonolgist has you do regarding the Amikacin...." + (show)
@windwalker

@jasmine321 Hi. Please keep us posted on what your pulmonolgist has you do regarding the Amikacin. I hope you can get it figured out.

Jump to this post

@windwalker I have an appointment with the ID doctor on 6/26, I will keep you posted. I am on my 6th week of Amikacin inhalation. I think the hoarseness is a little better. I am doing albuterol inhalation before the Amikacin and I gargle with warm water and also drink warm water after every treatment. Still hoarse but not as bad as the previous weeks.

REPLY
stsagris | @stsagris | Jun 17, 2019

Hello, my 73 year old step-mother was recently diagnosed with MAC infection about 1 month ago and she was started on antibiotic regimen (rifampin, ethambutol, and azithromycin). She has since developed extreme debilitating anxiety where she cannot function during the day. Her personality has also changed drastically. She cries constantly, and is terrified of things that would not have phased her in the past. We are looking for answers but not coming with anything. Has anyone experienced anything like this?

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4 replies
Garnet | @lampstone | Jun 17, 2019
In reply to @stsagris "Hello, my 73 year old step-mother was recently diagnosed with MAC infection about 1 month ago..." + (show)
@stsagris

Hello, my 73 year old step-mother was recently diagnosed with MAC infection about 1 month ago and she was started on antibiotic regimen (rifampin, ethambutol, and azithromycin). She has since developed extreme debilitating anxiety where she cannot function during the day. Her personality has also changed drastically. She cries constantly, and is terrified of things that would not have phased her in the past. We are looking for answers but not coming with anything. Has anyone experienced anything like this?

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I am 71 years old. I was 67 when I began taking those same three antibiotics 3 times a week. After no improvement - I was increased to the same three antibiotics 7 days/week. I continued this regimen for about 4 years.
I began to think I was showing severe signs of dementia after having difficulty finding local area destinations I had known for 30 years. I even had trouble finding my way around Mayo after doing the same routine appointments three or four times a year for 4 years! In addition to confusion and temporary memory loss while on the antibiotics, I also had terrible mood swings and paranoia.
I shared all of this with my Mayo pulmonologist. Since my bacteria count was so low by 2018, it was believed I needed a break; I was put on a “med holiday” for one year. Yay!
During my year off the antibiotics, I realized I was able to find my way around town with no issues, and my “feeling lost” and “in a fog” while at Mayo was also gone. The mood swings, paranoia, and confusion were totally gone. I felt so much better mentally.
But here I am again a little over a year later, my lung health is not good again - and, I am going to find out tomorrow what the new plan is. I do know that my mental health will also be considered when choosing antibiotics. I am so glad and very thankful I have a pulmonologist I can trust. Don’t be afraid to ask questions and to share how your lung health treatment might be effecting your general health. Hoping thus helps a little. And - please tell stepmom’s pulmonologist what she is experiencing. Be Blessed.

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