(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

@america Rita, thanks for replying — it seems the hearing problems can happen with most of the 'mycins. Oh you do help me, a lot – that's for sure I feel so much better knowing I'm not alone with this. Very glad you're at Mayo Clinic and hope this time really works. Annie

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Thanks anniepie! Keep me posted on how you’re doing. It will get a bit easier as time goes by. Hugs Rita.

Liked by anniepie

We ALL understand how hard this all is, and we love and support each other. I don’t actually know you, but I love you.❤️

@anniepie

@irene5 Hi Irene, sorry, I don't know everybody here. I should have just asked for anyone who might know. Hope you are going okay. How long have you been on the meds/big 3? Did you get tinnitus but was advised by the docs to keep taking Azithro? Would love to know this. Or did you have to stop taking it? Hugs to you, Annie

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@anniepie Hi Annie. I have been on the Big 3 three times, but try as I might, my body could not tolerate them. Azithromycin is actually the only drug I could tolerate for any length of time without serious side effects except for hearing loss and tinnitus which have improved now. The ID doctor would not allow me to drive because of the color blindness that can develop from one of the other two, but not many ID doctors feel that way. MAC has been very debilitating for me due to other “comorbid” conditions. It is very important Annie to eat nutritious meals,exercise, and practice mindfulness as much as possible although that is easier said than done. This site has wonderfully caring, kind, and intelligent people who have a willingness to walk with you through this journey. So glad you found this group.

@irene5

@anniepie Hi Annie. I have been on the Big 3 three times, but try as I might, my body could not tolerate them. Azithromycin is actually the only drug I could tolerate for any length of time without serious side effects except for hearing loss and tinnitus which have improved now. The ID doctor would not allow me to drive because of the color blindness that can develop from one of the other two, but not many ID doctors feel that way. MAC has been very debilitating for me due to other “comorbid” conditions. It is very important Annie to eat nutritious meals,exercise, and practice mindfulness as much as possible although that is easier said than done. This site has wonderfully caring, kind, and intelligent people who have a willingness to walk with you through this journey. So glad you found this group.

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Did the doctor say the ringing in the ears would go away or is it a side effect that is permanent ? I feel it is the Azithromycin that cause lot of side effects., I was off this medicene for over a week and had no side effects. Now that I am back on it I have ringing ears and feel the Big 3 within fifteen minutes after taking them.. The leg pain is awful at night which I have not read where anyone else has this problem .I do have appointments for my ears and eyes this coming week.Praying the ears are not permanent.I pray for all of us that have this disease ,
Summer 33

Liked by america

Hi summer 33! I have horrible pains in my legs. I tried so many different rubs and and meds for inflammation but it won’t stop. I got gabapinten from my RA doctor and it helps but I feel so drained the next day. First they said it’s RA but when I went to Mayo I saw an RA doctor there and he said I don’t! So I just suffer every night with this too. I was told it could be coming from low sodium and anemia. I wish I could help. Take care Rita.

@anniepie

@heathert Thanks so much for replying Heather, and your kind advice. I was wondering if this means the hearing loss will get worse if I stay on the Azithromycin, or will just stay this bad but not get worse?.
The docs didn't stop the medication for you? That's hopeful. I felt this drug had already started to help fight the NTM and was worried if I have to stop it because of the hearing problems.
I will see my GP/primary carer about it tomorrow.
Thanks again Heather, hope you are doing okay. Hugs, Annie

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Hi @anniepie I have been on it for at lease 4 years and only lost hearing in my left ear, however now my right ear is starting also, neither are very bad tho. So yes it can keep getting worse but doesnt always.

@windwalker

@skylarkny, Hi there. Sounds like you aren't doing very well right now. Just a heads up, green sputem usually indicates infection. If the coughing up gunk continues after a week, insist that your dr get a sputem sample from you for testing. Ideally, have it sent to either Mayo Clinic or National Jewish Health. Those two places have the best labs for testing mac. They can test for specie, colonycount, and do a suseptibilty test. That is a test to see what specific drugs will work against it. Azithromycin is strong and will remain in your system awhile, so give it time to work. If it doesn't knock out whatever bug you have; you may need a longer, more consistant treatment.

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@windwalker Hi Terri, thank you so much for writing back so fast. It really helps to not feel alone in this. What is hard for me is I am not immunocompromised, and i don't understand why I have this. i have been a very healthy and active 56 year old normally runs 5-6 miles a week and takes ballet, hikes, dances, etc. I don't smoke, (quit 30 years ago) but I sound like I have emphysema right now… I realize that I have been very lucky with my health until now and am still lucky but it's hard to have something out of the blue that doesn't seem to have a cure. Anyway, I'm glad I found this resource and thank you for the tea recommendation. I will definitely go get some tomorrow!

@skylarkny

@windwalker Hi Terri, thank you so much for writing back so fast. It really helps to not feel alone in this. What is hard for me is I am not immunocompromised, and i don't understand why I have this. i have been a very healthy and active 56 year old normally runs 5-6 miles a week and takes ballet, hikes, dances, etc. I don't smoke, (quit 30 years ago) but I sound like I have emphysema right now… I realize that I have been very lucky with my health until now and am still lucky but it's hard to have something out of the blue that doesn't seem to have a cure. Anyway, I'm glad I found this resource and thank you for the tea recommendation. I will definitely go get some tomorrow!

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@skylarkny Just to make you feel even less alone, I have bronchiectasis and MAC. But, just like you, I'm not immunocompromised and have been very active as well, playing tennis all year round several times a week. I've never smoked and rarely drink. But I coughed up huge amount of blood completely out of the blue one day (after having played tennis for 1.5 hours no less). I spent a night in the ER and continued to cough up blood until the small hours of next day. The words "TB" and "lung cancer" were throwing around all night long and everybody immediately gowned up and put on face masks. I was terrified and feeling completely alone although my husband was right there by my side. When my diagnosis came, I was caught off guard as I had never heard of MAC. The only difference that you and I now have is that, after the blood bath night, I went back to lead a normal life and I still am, with no treatment of antibiotics and no symptoms that others have complained of having, such as fatigue. However, I do still cough and have thick mucus. I don't expect that to go away any time soon, or maybe ever, due to my bronchiectasis. And I'm learning to cope with it the best I know how and not to let it hinder the way I would like to live my life. Hope you eventually find a treatment that suits your situation and gets you back on track to being active again. I'm sure it will happen. We just have to keep a positive outlook and never give up.

@ling123

@skylarkny Just to make you feel even less alone, I have bronchiectasis and MAC. But, just like you, I'm not immunocompromised and have been very active as well, playing tennis all year round several times a week. I've never smoked and rarely drink. But I coughed up huge amount of blood completely out of the blue one day (after having played tennis for 1.5 hours no less). I spent a night in the ER and continued to cough up blood until the small hours of next day. The words "TB" and "lung cancer" were throwing around all night long and everybody immediately gowned up and put on face masks. I was terrified and feeling completely alone although my husband was right there by my side. When my diagnosis came, I was caught off guard as I had never heard of MAC. The only difference that you and I now have is that, after the blood bath night, I went back to lead a normal life and I still am, with no treatment of antibiotics and no symptoms that others have complained of having, such as fatigue. However, I do still cough and have thick mucus. I don't expect that to go away any time soon, or maybe ever, due to my bronchiectasis. And I'm learning to cope with it the best I know how and not to let it hinder the way I would like to live my life. Hope you eventually find a treatment that suits your situation and gets you back on track to being active again. I'm sure it will happen. We just have to keep a positive outlook and never give up.

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@skylarkny Hi, I have not posted in most likely a few years, although I have continued to read most of the posts and have learned alot about this terrible bacteria that lurks in our lungs. I do find it confusing as to how to post back or remark on a posting I have just read, so I am not sure if I am doing this right. So firstly I would like to comment on the above post, I am so sorry for you that you spent such a scary night in Emergency coughing up blood, how horrible. I have had Maic and Bronchiectasis for several years now, and have never been on antibiotics, I have avoided them for fear of all the side effects that most people have mentioned here. I too am very active, biking and walking every day. I too produce alot of mucous, and work constantly trying to clear it from my lungs, with puffers, inhaled hypertonic saline, chest physio and aerobica. I cough alot at night. I had a Neuroendocrine tumour in my left lung 16 years ago,(never smoked, always healthy) and had a left lower lobectomy at that time. I think I started colonizing maic from either hot tubs, or tropical country shower heads, as my lung were most likely scarred from the big surgery and most likely I was immunocomprised.
I am now at the the stage of more changes on my last CT, and feel that I may have to go down the road of the big 3, but would still do everything to avoid that. I was trying to find any clinical trials that used inhaled Amickicin as a first line treatment. Any thoughts? cheers

@joanney

@skylarkny Hi, I have not posted in most likely a few years, although I have continued to read most of the posts and have learned alot about this terrible bacteria that lurks in our lungs. I do find it confusing as to how to post back or remark on a posting I have just read, so I am not sure if I am doing this right. So firstly I would like to comment on the above post, I am so sorry for you that you spent such a scary night in Emergency coughing up blood, how horrible. I have had Maic and Bronchiectasis for several years now, and have never been on antibiotics, I have avoided them for fear of all the side effects that most people have mentioned here. I too am very active, biking and walking every day. I too produce alot of mucous, and work constantly trying to clear it from my lungs, with puffers, inhaled hypertonic saline, chest physio and aerobica. I cough alot at night. I had a Neuroendocrine tumour in my left lung 16 years ago,(never smoked, always healthy) and had a left lower lobectomy at that time. I think I started colonizing maic from either hot tubs, or tropical country shower heads, as my lung were most likely scarred from the big surgery and most likely I was immunocomprised.
I am now at the the stage of more changes on my last CT, and feel that I may have to go down the road of the big 3, but would still do everything to avoid that. I was trying to find any clinical trials that used inhaled Amickicin as a first line treatment. Any thoughts? cheers

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Hello Joanne & skylarkny – I too am an active young senior, and was recently (June 2018) diagnosed with bronchiectasis, followed by diagnoses of pseudomonas & MAC – after years of asthma, a couple years of repeated bronchitis & unrelenting cough. I too was frightened by the prospect of the "big 3" but my pulmonologist was seeing rapid degradation in my lungs, so I relented & tried it. The side effects for me are not as dire as I feared, and after several months, the cough has abated and the fatigue is less, so I think I did the right thing. I have a followup CT & sputum culture this month to track progress. My doc has been treating MAC for over 20 years, and he says in his experience, only about 25 percent of patients have major side effects from the antibiotics, and less than 10% have to quit treatment altogether. To minimize side effects, I have to take all of my meds at bedtime, and with a small snack even though they may be a little less effective that way. Taking on an empty stomach in the morning made me too miserable, and I know I could not complete the course, so this is my compromise. I also use lots of probiotics, and drink lots of ginger tea or suck on real ginger candies to ease nausea. Now if I could just get my appetite back…

@heathert

Hi @anniepie I have been on it for at lease 4 years and only lost hearing in my left ear, however now my right ear is starting also, neither are very bad tho. So yes it can keep getting worse but doesnt always.

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@heathert Thanks Heather, your advice and help is great. Hugs, Annie

Liked by heathert

@summer33

Did the doctor say the ringing in the ears would go away or is it a side effect that is permanent ? I feel it is the Azithromycin that cause lot of side effects., I was off this medicene for over a week and had no side effects. Now that I am back on it I have ringing ears and feel the Big 3 within fifteen minutes after taking them.. The leg pain is awful at night which I have not read where anyone else has this problem .I do have appointments for my ears and eyes this coming week.Praying the ears are not permanent.I pray for all of us that have this disease ,
Summer 33

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@summer33 I have seen only my GP/primary carer. Having difficulty getting in touch with the Specialist because I am a 'public hospital' patient. (In Australia, many people on lower incomes go to public hospitals because they are cost free. But like the NHS in England you can't choose your hospital doctor). I will see the mycobacterial specialist at an appointment in 10 days time.
Yes Azithromycin can cause hearing problems and has some bad side effects but so do the other drugs in the big 3. But the Azithromycin is probably the most important drug for fighting this NTM.
For me, I was just a bit shocked to develop it so early in my treatment. However, so far the tinnitus I have is there but not too bad — it gets a little bit worse as the day goes on. If it remains and doesn't go away, I can accept it as the price to pay to treat this awful illness. (But no, I definitely don't want any of the serious side effects that this drug or the others can cause! Please not for me, or for any of us — I pray for that. The smaller side effects I will do everything I can to accept).
Ethambutol and Rifampicin / Rifampin (both in the big 3) can cause leg pain.and eyesight problems. Tell your doctor or specialist if you have them. Good luck to you, and to all of us. Annie

@irene5

@anniepie Hi Annie. I have been on the Big 3 three times, but try as I might, my body could not tolerate them. Azithromycin is actually the only drug I could tolerate for any length of time without serious side effects except for hearing loss and tinnitus which have improved now. The ID doctor would not allow me to drive because of the color blindness that can develop from one of the other two, but not many ID doctors feel that way. MAC has been very debilitating for me due to other “comorbid” conditions. It is very important Annie to eat nutritious meals,exercise, and practice mindfulness as much as possible although that is easier said than done. This site has wonderfully caring, kind, and intelligent people who have a willingness to walk with you through this journey. So glad you found this group.

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@irene5 so glad we both found this group. Hugs, Annie

@helem

We ALL understand how hard this all is, and we love and support each other. I don’t actually know you, but I love you.❤️

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@helem And I love you back Helen,

@sueinmn thank you for you reply. Do you mind me asking where your Doctor that has 20 years experience with treating Maic is located. I am in BC and have been pretty happy with my respirologists, but it is always great to know of other experts out there, especially if they are in Canada. I have considered Mayo Clinic, but have not got to really looking into yet. Good luck with your continued treatment, I will take note of how you take all the meds at bedtime.

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