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 | Dec 8, 2018
In reply to @boomerexpert "@anniepie I'm not on meds so don't know..." + (show)
@boomerexpert

@anniepie I'm not on meds so don't know...

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@boomerexpert Thanks for replying anyway. This group is really helpful and supportive. Hugs, Annie

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anniepie | @anniepie | Dec 8, 2018
In reply to @america "Hi anniepie, I took the big 3 about 3 years ago. And I was doing good..." + (show)
@america

Hi anniepie, I took the big 3 about 3 years ago. And I was doing good with no meds after that for about 2 years. This year was not good to me I got sick a lot and I found this group that actually saved me. Windwalker is amazing! She told me about Mayo Clinic and I am being treated there. I was on Tobramycin for almost 2 months and I started with the sore throat and I had to stop. So I’m not on any meds now. But I will be starting something different soon. I may be staying azithromycin not quite sure until I speak with my doctor. And yes I did use it and got ringing in my ears not constantly it would come and go. I wish I could help. Hugs!!! Hang it there it’s a long journey but we are doing it. Rita

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@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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anniepie | @anniepie | Dec 8, 2018
In reply to @helem "I have tinnitus since I have been on the drugs since July. Have you had your..." + (show)
@helem

I have tinnitus since I have been on the drugs since July. Have you had your hearing checked? I didn’t know to get a baseline and when I went after three months I had a little hearing loss in the upper range. Since I hadn’t had a baseline I don’t know if the drugs caused the loss. I’m going to go in soon for another hearing test. To tell you the truth, I’ve just gotten used to the tinnitus.

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@helem Thanks Helen. Yes I had a baseline hearing check before starting the drugs. I was hoping not to have problems, and really wasn't expecting to so soon -- but apparently it happens pretty quickly sometimes. Wow it seems like a lot of us have gotten tinnitus with the meds. Hugs for you, we're all in this together, Annie

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america | @america | Dec 8, 2018
In reply to @anniepie "@america Rita, thanks for replying -- it seems the hearing problems can happen with most of..." + (show)
@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.

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Helen | @helem | Dec 8, 2018

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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irene5 Irene Estes | @irene5 | Dec 8, 2018
In reply to @anniepie "@irene5 Hi Irene, sorry, I don't know everybody here. I should have just asked for anyone..." + (show)
@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.

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2 replies
summer33 | @summer33 | Dec 8, 2018
In reply to @irene5 "@anniepie Hi Annie. I have been on the Big 3 three times, but try as I..." + (show)
@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

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america | @america | Dec 8, 2018

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.

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heathert | @heathert | Dec 8, 2018
In reply to @anniepie "@heathert Thanks so much for replying Heather, and your kind advice. I was wondering if this..." + (show)
@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.

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skylarkny | @skylarkny | Dec 8, 2018
In reply to @windwalker "@skylarkny, Hi there. Sounds like you aren't doing very well right now. Just a heads up,..." + (show)
@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!

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