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.

anniepie | @anniepie | Oct 23, 2020
In reply to @sueinmn "A number of people in this group have not been treated for their MAC with antibiotics...." + (show)
@sueinmn

A number of people in this group have not been treated for their MAC with antibiotics. My pulmonologist says she never treats MAC based on sputum cultures alone - she looks for infection evidence in the lungs plus other symptoms (coughing, fatigue, weight loss), before beginning treatment. She also considers the total physical condition of each person, because not everyone can tolerate the 3 antibiotic regimen. I also see that you have COPD, which may affect how you would be treated.
Right now, I (probably) still have the infection, but no symptoms. In consultation with my 3 docs, we stopped the antibiotics last December based on an improved lung scan, even though the cultures were positive. I have maintained all year with 7% saline nebs & airway clearance. The Infectious Disease doc consulted with NJH before stopping. He said that, in his experience, a fair number of people have MAC for years, and you can "knock down" the level of infection with drugs, but it never really goes away. The best you can do is healthy eating/living and good lung hygiene. Sometimes it flares up and you treat it again.
Sue

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Thanks @sueinmn for this information -- it's really helped me. Hugs and good luck, Annie

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heathert | @heathert | Oct 23, 2020
In reply to @anniepie "Thanks @heathert. I don't know what drug alternatives my thoracic specialist will come up with --..." + (show)
@anniepie

Thanks @heathert. I don't know what drug alternatives my thoracic specialist will come up with -- we'll see. (As it turns out, unfortunately many TB drugs can cause Long QT problems with the heart, but it is rare). I will keep you posted on what happens, Hugs to you x

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Hugs to you to @anniepie

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anniepie | @anniepie | Oct 23, 2020
In reply to @windwalker "Hi Anniepie. Please keep me posted on what you decide for treatment. Sending you hugs too!" + (show)
@windwalker

Hi Anniepie. Please keep me posted on what you decide for treatment. Sending you hugs too!

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Thanks very much Terri. I will keep in touch @windwalker. I see the thoracic specialist / pulmonologist again on 2 November.
At the moment it's great to have a little break from TB drugs! Annie

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1 reply
pamelasc | @pamelasc1 | Nov 2, 2020

Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis (like myself) for more than 6 years has ever gone through a period of night sweats. And if so, whether they eventually go away. Mine began about 6 weeks ago and they are nightly, waking up with the sheets drenched and my pajamas drenched. Aside from this, I am feeling quite well, with my lungs more or less clear for the time being. My GP feels that it may be a result of the MAC and low immunity, though I am having some blood work done to rule out other issues. Thank you for any information. Pamela

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4 replies
irene5 Irene Estes | @irene5 | Nov 3, 2020
In reply to @pamelasc1 "Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis..." + (show)
@pamelasc1

Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis (like myself) for more than 6 years has ever gone through a period of night sweats. And if so, whether they eventually go away. Mine began about 6 weeks ago and they are nightly, waking up with the sheets drenched and my pajamas drenched. Aside from this, I am feeling quite well, with my lungs more or less clear for the time being. My GP feels that it may be a result of the MAC and low immunity, though I am having some blood work done to rule out other issues. Thank you for any information. Pamela

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@pamelasc1 I am sorry you are experiencing these symptoms. Notwithstanding the possibility of hormone issues of menopause I will tell you that yes I have had night sweats and other constitutional symptoms happen due to my MAC and bronchiectasis diagnosis. Since being on the MAC meds plus Arikayce this has become a nonissue. Hoping your doctor can get some answers for you. irene5

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 3, 2020
In reply to @pamelasc1 "Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis..." + (show)
@pamelasc1

Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis (like myself) for more than 6 years has ever gone through a period of night sweats. And if so, whether they eventually go away. Mine began about 6 weeks ago and they are nightly, waking up with the sheets drenched and my pajamas drenched. Aside from this, I am feeling quite well, with my lungs more or less clear for the time being. My GP feels that it may be a result of the MAC and low immunity, though I am having some blood work done to rule out other issues. Thank you for any information. Pamela

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Hi Pamela - I can tell you that I had night sweats while my infection was at its worst, and for months afterward. Also, throughout my life I have had them whenever I have any kind of infection, including a cold or bronchitis. I still get them periodically, and treat them as a sign that I need to "double down" on saline nebs and airway clearance because some kind of germ is poking at me.
Sue

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pamelasc | @pamelasc1 | Nov 3, 2020

Thanks Sue for this info - did you ever have them when you were feeling fine? Which I am right now. Pam

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1 reply
pamelasc | @pamelasc1 | Nov 3, 2020
In reply to @irene5 "@pamelasc1 I am sorry you are experiencing these symptoms. Notwithstanding the possibility of hormone issues of..." + (show)
@irene5

@pamelasc1 I am sorry you are experiencing these symptoms. Notwithstanding the possibility of hormone issues of menopause I will tell you that yes I have had night sweats and other constitutional symptoms happen due to my MAC and bronchiectasis diagnosis. Since being on the MAC meds plus Arikayce this has become a nonissue. Hoping your doctor can get some answers for you. irene5

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Thank you Irene for this info - can you tell me about your use of Arikayce? Do you take it daily or only when you get sick with pneumonias? I did go on the 18 month regimen for MAC once it was diagnosed back in 2015. That cleared the MAC but since then I continue to get periodic cases of bacteria (pseudemonas) in my lungs which bring back a bad cough and feeling sick. I took Levofloaxin for that and it always cleared it up. But now I can't take that anymore, due to side affects. So I am looking for a new drug to try if and when I get another bacterial infection. Perhaps the night sweats are telling me that the MAC is coming back, but I do not have that strong and persistent and productive cough that the MAC caused me 5 years ago. Were your night sweats happening, even when you felt fine? Pam

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1 reply
irene5 Irene Estes | @irene5 | Nov 3, 2020
In reply to @pamelasc1 "Thank you Irene for this info - can you tell me about your use of Arikayce?..." + (show)
@pamelasc1

Thank you Irene for this info - can you tell me about your use of Arikayce? Do you take it daily or only when you get sick with pneumonias? I did go on the 18 month regimen for MAC once it was diagnosed back in 2015. That cleared the MAC but since then I continue to get periodic cases of bacteria (pseudemonas) in my lungs which bring back a bad cough and feeling sick. I took Levofloaxin for that and it always cleared it up. But now I can't take that anymore, due to side affects. So I am looking for a new drug to try if and when I get another bacterial infection. Perhaps the night sweats are telling me that the MAC is coming back, but I do not have that strong and persistent and productive cough that the MAC caused me 5 years ago. Were your night sweats happening, even when you felt fine? Pam

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Pam, feeling “fine” has not been in my vocabulary since I was diagnosed with MAC about the time you were (2015). I am certain I had it sooner, but that’s when it was diagnosed. The Big 3 were very hard on me, so in June the inhaled Arikayce was added daily. Arikayce is prescribed for those patients who have difficulty with the Big3 or for whom the Big 3 did not achieve the desired result. I will be on the Arikayce for at least year in addition to two of the Big 3. The night sweats did happen when I was not necessarily feeling awful. That’s when I knew something was up. They happened initially when I went on the Arikayce because in my mind’s eye there was a war going on inside my body. I am not having them now, so I am hopeful the Arikayce is winning the war! I was never ever a coughing kind of gal. I am coughing now with the addition of the Arikayce. Talk to your doctor about adding it. It is very pricey, but there is help with that piece. Good luck! Irene

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Jennifer | @megan123 | Nov 3, 2020
In reply to @pamelasc1 "Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis..." + (show)
@pamelasc1

Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis (like myself) for more than 6 years has ever gone through a period of night sweats. And if so, whether they eventually go away. Mine began about 6 weeks ago and they are nightly, waking up with the sheets drenched and my pajamas drenched. Aside from this, I am feeling quite well, with my lungs more or less clear for the time being. My GP feels that it may be a result of the MAC and low immunity, though I am having some blood work done to rule out other issues. Thank you for any information. Pamela

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Hi Pamelasc..have you had a recent sputum done and culture grown, too see what’s going on..I too have all 3 bacteria...Pseudomonas is a tricky bacteria....and/or a recent CT scan.. to see your lungs progress..this way you will no for sure

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