(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

@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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@tdrell, Terri, you know I am BIG on ‘due diligence’ .. being your own best advocate .. SO if I was sitting in your shoes I would:
1. sit down .. write out a logical sequence .. your diagnosis .. her summary .. your thoughts etc
2. copy her summary
3. request a clarification/reasoning/purpose .. of “Denver * The reason MAC was found in my lungs when I had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept plus silent aspiration during day into my lungs.” AND now you STILL HAVE SEVERE GERDS .. AND they want you off GERDS MEDS????
4. Mail it: PERSONAL ATTN TO: …

Personally Terri I like things in WRITING .. the doctor has to THINK about what is in writing. THEN give it 2 weeks. If no answer .. you HAVE kept copies of everything. Step 2 .. photo copy EVERYTHING .. label it SECOND REQUEST .. THIRD REQUEST .. UNTIL you get a satisfactory answer!! It is YOUR body!!

I went through thirty months of antibiotic treatment .. ALL THE WHILE on GERD medication. Until/unless you get a GOOD explanation .. DO NOT give up! It is YOUR body! You go girl! Hugs! Katherine

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@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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Katherine…..FYI the day after i got Dr HUitt’s summary letter and saw the new advice re going off Nexium, I called and made an appt with my GI specialist. My stomach took over a year to get quiet ( and multiple meds and EGDs) 20 plus years ago. So i am in no hurry to affect the status quo. Dr Huitt is an ID specialist not a GI Dr. TerriD

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@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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hi @tdrell and @katenm its all so difficult, the meds cause GERD so we take antacids etc ,which means the MAC isnt killed by stomach acid, but if we dont take antacid meds we have reflux, not easy to deal with for us.

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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Hi @donut , I am doing ok. Yes it seems 12 months of treatment after clear sputums doesnt seem to be long enough to keep it away maby they need to up the meds to 2 years after 3 clear sputums? I havnt heard of that happening yet but if they can get rid of some of the MAC with time they should be able to rid us of all of it.

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Hi all, as you know I email every research lab I can to try get out MAC/MAI word out there, I have had a reply from IMI who are a big european company, they said they have no research projects at the moment being tried on MAC but I can have a chat with them, I will let you know how I get on. Fingers crossed!

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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I had a cold in October and it seemed to settle into my lungs. I still have some mucus, so asked my pulmonologist for advice. He said if I am still coughing we could try an inhaler such as QVAR 80, 2 puffs 2 x day for about 2 weeks. If no better, get a chest xray.

Do you have any experience with this inhaler?

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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@jcarr, (do you have a first name .. more personal!) FIRST question: have you been diagnosed with MAC.

Secondly, yes, I have been using Qvar for quite a long time .. it helps me a LOT in coughing up the mucus from my lungs! BUT I know it is important if you use it to use good inhaler hygiene .. my personal recommendation from my File Cabinet is .. hope you find it helpful! Hugs! Katherine

INHALERS-USE
BUT after some thoughts I realized some things I have been doing wrong and this is my new routine:
1. using inhalers PRIOR to brushing my teeth (had been using after)
2. use an Aerobika device . Use a “huff” cough, (like you were cleaning your glasses and fog them with your breath only more forceful), along with the Aerobika, you can pull mucous out of those lower airways.
3. using peroxide to dampen my toothbrush with toothpaste to brush (purchased a squirt dispenser)
4. using peroxide after brushing for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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Thumbs up on beginning the exercise class @windwalker. Do keep us posted on your progress or just reach out when you need encouragement to keep going.

There are two great places about Transplants on Connect.
– To share with others who have had a transplant or are waiting for transplant, follow and take part in the Transplants Group https://connect.mayoclinic.org/group/transplants/
– To read and comment on blog posts by the Mayo Clinic Transplant team, get information about being a recipient and more, follow the Transplant Page https://connect.mayoclinic.org/page/transplant/

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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While I continue to carry on with 3-antibiotics, I wish they knew where/how I got MAC. Please tell me research is still ongoing. There is no guarantee I won’t get MAC again. I read more and more cases have occurred. Maybe airborne – I have no idea.

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@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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tdrell, Terri, I totally .. TOTALLY agree with you!! I find if I merely have a busy day and forget to take my Aciphex late in the day rather than early in the day .. I SUFFER for it ..my tummy will hurt. I do then find it will help .. alleviate the discomfort if I get up and munch on 3 or 4 Tums .. I do keep them on had for that purpose! That is why I was so concerned for you! Good girl for being your “own best advocate” .. you are a good example of doing just that! Hugs to you! Katherine

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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@tessie, Tessie,
Hello and Welcome to our Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of.

My thoughts .. first I would recommend you read through the past pages of our Forum .. you will really educate yourself to your MAC disease .. you will feel SO much better by educating yourself .. more in power of your journey … better able to advocate for yourself AND your medical choices. As you educate yourself .. you MUST become your own best advocate!

BECAUSE NO ONE knows how ANY single one of us got MAC. There are LOTS of theories .. but there is little research for our disease .. so no definitive decision. Truthfully .. just THINK of the MILLIONS of dollars thrown at cancer research .. still not all the answers yet. SO my dear .. do NOT put your energy in asking WHY .. put your energy into educating yourself .. THEN getting the very best medical care possible! THAT is my opinion! Sending you a hug at this tough time! Please keep coming back .. we will be here for you! Katherine

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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Thank you Colleen! Colleen gave me a good link to add to our pages in case you or anyone you want to suggest Mayo Clinic Connect to for any/all situations .. I know I’ve made a note for my Personal File Cabinet! The link for it is:

MAYO CLINIC CONNECT-GROUPS AVAILABLE
https://connect.mayoclinic.org/groups/
Hugs! Katherine

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