(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@suzyqueue

I was diagnosed in January 2018. Still to this day – no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.

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@suzyqueue Hang in there and stay on your meds. The Amikacin seems to have helped @heathert. Keep us posted.

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@kathyhg

I'm very curious about alternatives to the Big 3, which I've been on for 4 months. I have recently had side effects, which I believe are from the azithromycin and I'm seeing my doctor next week. I am not prepared to just tolerate the side effects because of the benefits of treating the MAC and will be asking for a referral to a MAC specialist in a larger city near us. The Amikacin sounds like an expensive but reasonable alternative (is it used alone or in combination with other drugs?) and it will be one of the things I will research and discuss with my doctor when I see him. Having MAC has already cost us a lot of money in terms of cancelled trips, reverse osmosis system, etc etc and had a huge effect on our quality of life so another cost is something that I can live with if I have to.

Thanks for everyone's contributions to this forum. I have learned here than anywhere else and, although I may have become a nuisance to my doctor, I feel it benefits me in my efforts to get this disease under control.

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@kathyhg I may have shared this with you before, but I have never been on the 'Big 3' for treatment of mac. I was put on alternating months of cipro and doxycycline for two yrs in 2013. I would take them for ten days each month. My mac cleared after one year . Then I got pseudomonas in 2016 and the doxycycline was replaced with inhaled tobramycin. that cleared my pseudo after 30 days. I remain on the tobramycin and cipro to this day. I take these on alternating months. After taking the first toby treatment, I was cough free after 28 days and remain good to this day. My regimen will not work for everyone because it will all depend on one's susceptibility test. BTW, I want to remind everyone to keep a hard copy of your susceptibility test and lab results for sputem.

Liked by anniepie

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@windwalker

@kathyhg Hi Kathy! I really liked your last sentence. That is the precise intention of this group. I just met with my Mayo doctor last week and we discussed how each individual with mac should have a tailor-made treatment plan. Beware those that only use the Big 3 treatment plan or want to jump on those three meds at the first inclination of mac infection. BTW, my dr also said again that the biggest culprit of bronchiectasis and mac is GERD, otherwise known as acid reflux. If you treat that, then you may likely stop the infection and reinfection of mac. Many people have what is known as silent reflux; meaning there are no apparent symptoms. I make a list of questions before I see my dr also. When will you see your mac specialist?

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I am seeing the respirologist on June 19 and will get a referral to the Mac specialist either from him then. Not sure how long it will take.
I’m seeing a gastroenterologist in early September as I’m not aware that I have GERD but will discuss with him. How great would that be if treating GERD protected me in the future! Thank you for this encouragement.

I have learned so much about a disease that I’d never heard of before last year, most importantly that I need to educate myself and be my own advocate.

I am thankful that I found this forum as Mac is an isolating disease and the forum is one place where I don’t feel like I’m burdening others with yet more Mac talk :).

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@kathyhg

I am seeing the respirologist on June 19 and will get a referral to the Mac specialist either from him then. Not sure how long it will take.
I’m seeing a gastroenterologist in early September as I’m not aware that I have GERD but will discuss with him. How great would that be if treating GERD protected me in the future! Thank you for this encouragement.

I have learned so much about a disease that I’d never heard of before last year, most importantly that I need to educate myself and be my own advocate.

I am thankful that I found this forum as Mac is an isolating disease and the forum is one place where I don’t feel like I’m burdening others with yet more Mac talk :).

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@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?

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@windwalker

@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?

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I thought as we age we lose acid in our bodies ?

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@windwalker

@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?

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Yes. We’re about an hour from Toronto and I hear that he is well known to be a Mac expert. 🤞🏻

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windwalker — I was interested in your information concerning gerd in the above writing. My primary care doctor in Tulsa originally told me my cough was driven by reflux and I was on a number of different reflux meds (although I had no symptoms. Finally, I went to Rochester because I just didn't get any better and had lost a tremendous amount of weight. It had been 2-3 years of working with reflux. When they did esophagus testing at Mayos they said no, it wasn't reflux — no sign of it; however, I'm still fighting the same symptoms with periodic breaks between flare-ups. I'm wondering …….. which reflux meds your doctor uses in that I would certainly be willing to try anything extra to go along with the toby I'm working with now. I saw 3 gastro guys at Mayo's because that's what I asked for originally — telling them my doctor said gerd. They assured me that was wrong and that my problem was bronchiectasis — which I believe but I've always wondered if gerd could be an underlying problem. Do you have any more information on this?

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@kathyhg

Yes. We’re about an hour from Toronto and I hear that he is well known to be a Mac expert. 🤞🏻

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Hi Kathyhg…..sorry to interrupt but I'm from a Toronto…who r u going to see??? I see Dr Brode at Western who works under Dr Maras our top MAC guy, and I see Dr Tullis at St Mike's for the psedomonas…where do u live???

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It is Dr Maras who my respirologist said he’d refer me.

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@kathyhg

I'm very curious about alternatives to the Big 3, which I've been on for 4 months. I have recently had side effects, which I believe are from the azithromycin and I'm seeing my doctor next week. I am not prepared to just tolerate the side effects because of the benefits of treating the MAC and will be asking for a referral to a MAC specialist in a larger city near us. The Amikacin sounds like an expensive but reasonable alternative (is it used alone or in combination with other drugs?) and it will be one of the things I will research and discuss with my doctor when I see him. Having MAC has already cost us a lot of money in terms of cancelled trips, reverse osmosis system, etc etc and had a huge effect on our quality of life so another cost is something that I can live with if I have to.

Thanks for everyone's contributions to this forum. I have learned here than anywhere else and, although I may have become a nuisance to my doctor, I feel it benefits me in my efforts to get this disease under control.

Jump to this post

Hiya kathyhg the inhaled Amikacin is used with the big 3 unfortunatly, but for me it was great.

Liked by anniepie

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Western is an easier drive for us than Toronto, actually, so might be another option. Thanks for the name; are you happy with his care? I know of Maras through someone I know who has seen him.

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

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@windwalker

@kathyhg I may have shared this with you before, but I have never been on the 'Big 3' for treatment of mac. I was put on alternating months of cipro and doxycycline for two yrs in 2013. I would take them for ten days each month. My mac cleared after one year . Then I got pseudomonas in 2016 and the doxycycline was replaced with inhaled tobramycin. that cleared my pseudo after 30 days. I remain on the tobramycin and cipro to this day. I take these on alternating months. After taking the first toby treatment, I was cough free after 28 days and remain good to this day. My regimen will not work for everyone because it will all depend on one's susceptibility test. BTW, I want to remind everyone to keep a hard copy of your susceptibility test and lab results for sputem.

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

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@heathert

Hi @sounder27 I was on the amikacin for a year, every night. Mine was free as I was in a research project for it thank goodness.

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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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Hi @jasmine321 Yes I also had noticable hoarseness on and off, but constantly there a tiny teeny bit whilst on it. Diddnt bother me to much I sucked loengers Strepfen which helped. I hope the Amikacin works for you.

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