(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

@anniepie

Thanks Terri and thanks so much everyone else.

Yes I will try to get onto Arikayce — that was planned anyway for a few months time. But I think I will have to take something else as well.
I might go back on the Ethambutol. (Still scared a bit every time I take it. But the heart problems that happened with the Macrolides — Azithromycin and Clarithromycin — and with Clofazimine freaked me out).

Has anyone ever tried Bedaquiline??? It's a TB drug but in more recent studies it appears also to work with MAC and with Intracellulare in particular.

You're all so kind — I can't thank you all enough for being there for me.
Virtual hugs, Annie x

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@anniepie that Bedaquiline sounds interesting for Intracellulare, its so difficult if you have problems with the big 3 so would be great if that one worked. Take care Heather

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@janrn1

Did you ever have a physician who did not want to treat the MAC?

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I would love it if someone would answer the above question. If you did get treated how did the Dr.s change their minds?

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@janrn1

I would love it if someone would answer the above question. If you did get treated how did the Dr.s change their minds?

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@janrn1 The decision to treat by a doctor who previously didn’t want to treat is based on a progressively worsening image on CT scan and an increase in some somatic symptoms (cough, chills, fever, fatigue and/or weight loss.) A worsening of a patient’s quality of life is a reason to treat. Many patients talk about their life “before” MAC as compared to their life “after” a MAC diagnosis. For example, I used to be a total type A personality before MAC and the Ever- ready Bunny with boundless energy. That person moved out when MAC moved in. There are lots of factors a physician will consider since treatment is often grueling. I am confident and hopeful that the treatment I am doing will kill the MAC. There is not a “one size fits all” as Terri, our mentor has suggested many times. irene5

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@kathyhg

Another question about the breathe easy tea – does it do the same thing as curcumin does? I started taking curcumin after reading about it here and consulting with a naturopath but I would rather drink the tea if they do the same thing.
Thanks in advance!

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Kathyhg, I think you will have better and immediate results with the tea. Curcumin is an anti-inflammatory that may reduce inflammation almost anywhere in your body. The tea has herbals and licorice root that target the airways. The tea is is under $4.00 a box and certainly worth a try.

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@windwalker

Kathyhg, I think you will have better and immediate results with the tea. Curcumin is an anti-inflammatory that may reduce inflammation almost anywhere in your body. The tea has herbals and licorice root that target the airways. The tea is is under $4.00 a box and certainly worth a try.

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Thank you

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@heathert

@anniepie that Bedaquiline sounds interesting for Intracellulare, its so difficult if you have problems with the big 3 so would be great if that one worked. Take care Heather

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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

Liked by heathert

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@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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@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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@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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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

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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@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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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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@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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@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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