(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

@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Hi @jewel8888 so sorry you are having such a tough time, we all suffer from MAC?MAI lung problems here, its a shame they could not get a good sample from your bronch as thats how alot of us are diagnosed, a sputum sample may show something, I would think they would try it. Have they sorted your bladder infection and sepsis , sinus infection, bacteria and fungal problems yet?I hope you can get this sorted soon.

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@laneyk, Elaine, this is GREAT advice!! I think it would be just wonderful if Pamela checked with her Pulmonologist .. found that with purchasing a pulse oximeter and carry a portable O2 machine .. would work! Problem solved! Thanks for jumping in! Hugs! Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Thsnks Heathert,

Sepsis for me was last spring, following my previous extreme weakness symptoms. Fortunately they also did a chest xray or i wouldnt have known of the nodule. They placed me on antibiotic nitriforamin sp,?, and since have been on fungal meds, prednisone, amoxicillin, azithromycin, going in rounds as i get different symptons and infections.

Im seeing my rheumatologist in two weeks and he is sincere and will do anything i need as he he is upset lung doctors havent figured my problem.
The infornation i learned here so far will make a great impact in that appt. As we decide where to turn now. I have appts with my lung doctors this spring but will go ahead and call them regarding MAC/sptutnan testing.

The suggestions here are so appreciated, thank you. I do hope your feeling good today.
Julie

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Thank you Linda…I have another question – for anyone who has been diagnosed with MAC and bronchiectasis, who has gone through the 18 months of treatment and has been found to be free of MAC after the treatment:   was your lung function test BETTER after the treatment?  Did you find that you had better lung capacity after the treatment?  Did you get less breathless?  I ask because I still have 4 more months to go before I come to the end of the 18 month treatment and my hope is that at some point maybe my lungs will not react so negatively in the high altitude.  Maybe this is wishful thinking.  I know that my bronchiectasis can not be reversed, but once the MAC is gone from my lungs, have people found they just breathe better and can move or do a fast walk without getting winded?    Pamela   

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@pamelasc1 Pamela, one think to keep in mind is that we are not ‘ free of MAC after the treatment’ .. we can become “stable” but the mycobacterium is still in our lungs .. just not multiplying/colonizing. For me .. my lung capacity was similar after treatment ended .. I am not a doctor but any damage to our lungs going INTO antibiotic treatment is NOT going to be magically healed by the antibiotic treatment. The only thing that will happen to our lungs with the treatment is the mycobacterium will be brought under control “stabilized”. If our lungs were scarred/damaged PRIOR to treatment .. unfortunately .. the are STILL going to be scarred/damaged to the SAME degree AFTER treatment.

Unfortunately since May 2014 .. after I became “stable’ after antibiotic treatment ended.. I have found my lung capacity slightly lowered .. who knows if it is the Bronchiectasis that we are left with .. or just merely the aging process. That is why it is so important to exercise so it can strengthen our lungs to the greatest capacity. I know this is not good news but I hope it is helpful.Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Hi @jewel8888
You can connect with other members who have amyloidosis in these discussions on Connect.
– Current diagnosis is Amyloidosis and multiple myeloma http://mayocl.in/2bAqF5j
– Diagnosed with AL Amyloidosis. What can I expect? http://mayocl.in/2bQSFQR

You can also learn more from this Connect webinar with Mayo Clinic experts “Amyloidosis – What Patients Need to Know” http://mayocl.in/2jG4XjX

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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oh my goodness, have any of the infections gone?

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Pamela, I just started my treatment last month so I’m a long way from being able to answer that question. Sorry I can’t help on that one!

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Thank you Katherine for making this more clear to me… as discouraging as it is to learn this, it is no doubt important to be realistic about the disease. It seems most of us are in our sixties and seventies (I am 67).  If anyone has any connection to people in their 80s and 90s who have had MAC and the treatment, it would be interesting to hear how they are doing and what life has been like for them in their later years.  You ( or someone) mentioned a "spray" that you have on hand when you travel, but I can not find that email.  Could you tell us again how you prepare yourself to travel on a plane in order to minimize the risk of infection?  Clearly the key is to be very vigilant and try not to scar or damage the lungs any further.  Thank you, as always, for your informative and caring replys to my questions. Pam   

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Heathert,
I wish i could say yes, but im going in circles. I met my rheunatologist a year ago. I moved to SC for better healthcare, He said “mam i feel so bad for you, we really can just make you comfortable”. I knew there was more to my problen than arthritis and nerve pain, i progeessed to quicjly for that. He realized it too after i went to hospital and the lesion and infections kept.coming.

The sinus infection last month caused jaw pain, black eye, mouth Sore etc. Now i seem to feel as bad as i did in my gut again and the sweats.
I have choices to make because i keep going on and off methotrexate too which is really hard on me. Im 46 and have been on it since i was thirty.
I worked at NIH while in college so i know to come to a place like Mayo for help when everything else isnt working.
I’m alread on disability and my husband helps me so much. We take our dog Roxi to the beach when i can, thats always fun.
Sorry if im writing too much, its nice for you and the other members concern it feels good.
Julie

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@pamelasc1, Pam, to be honest .. I doubt very much if we will hear from people in “their 80s and 90s who have had MAC and the treatment, it would be interesting to hear how they are doing and what life has been like for them in their later years.’

Why? BECAUSE I grew up in Montana (part of the time without running water!) and at age 73 find myself MUCH more computer literate than MANY of my contemporaries. I doubt those in their later years spend much time on a computer period .. let alone our Forum. BUT I still would LOVE to hear from one of them on our same journey .. OR from a family member letting us know how they are doing! Great idea!

TRAVEL-HALO AND AIRBORNE
In terms of travel .. I JUST had that experience! Traveling with someone who caught a terrible virus that turned into a bacterial … coughing constantly! During the trip I was able to “nicely” avoid her .. BUT then had to sit across the aisle for 10.5 HOURS on an airplane! The morning of departure I started sneezing like crazy .. nose running like a sieve! SO I jumped on my usual travel remedies. I will tell you what works for me .. may NOT work for anyone else .. but I kept it up for three days solid .. AND did NOT get that infection .. OR stopped it in it’s tracks! YEAH!
MY LINE OF DEFENSE TO AVOID TRAVEL COLDS/VIRUS:
1. Airborne Vitamin C 1000mg Immune Support Supplement .. several times a day
https://smile.amazon.com/Airborne-Vitamin-Support-Supplement-Effervescent/dp/B000WZI4WY/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1483906644&sr=1-1&keywords=airborne%2Bcold&th=1
2. MORE IMPORTANTLY I THINK .. I have only found it on Amazon.com but I think it works WONDERFULLY! Used it MANY times a day when I felt I was starting to get this bacterial infection .. don’t even follow directions .. sorry! Halo Oral Antiseptic, Citrus,
https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1483906763&sr=1-2&keywords=halo+oral+antiseptic+spray
I don’t know about you .. but with my MAC PLUS Bronchiectasis I just seem to catch ANY cold/flu virus out there .. anywhere in the vicinity of me! So the day before airplane travel I use Airborne 2 times .. and Halo at least 3 times. The day of travel I try to do the same thing .. at least Airborne in the am before departure .. and then Halo 3-4 times. Then on the trip if I feel fine .. I just use the Halo 1 or 2x per day just to boost my immune system. This seems to work for me!
Also in my daily life if I hear anyone appearing to have a sick cough around me .. I grab my Halo Spray (carry it in my purse at all times!) and spray away! Pam, Hope this is helpful! Hugs! Katherine

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888 I really feel for you, I hope they can find some answers for you and get onto it quick, mayo sounds like a great place, im sure they will get you sorted, I bet your dog helps alot I know mine is a great comfort to me. Please let us know how you get on.

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888, Julie, my heart goes out to you. I am SO glad you mentioned going to Mayo Clinic .. people from all over the world fly to Mayo Clinic, Rochester MN for the outstanding help they can get there .. TEAMS OF DOCTORS .. they WILL get to the bottom of what is going on with you.

If I was you .. just age 46 .. WOW .. Here is what I would do if I was sitting in your shoes at only age 46 with YEARS ahead of GREAT living!
1. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
2. Contact Info given to me for: MAYO CONTACT
If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota
* Minnesota campus for an appointment, here’s the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.

For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s
3. Schedule a flight to MSP .. the Minneapolis airport .. OR you can fly right into Rochester MN
4. Rent a hotel room that is walking distance from Mayo Clinic. You can google all these things. I have stayed in hotels in Rochester .. not fancy but close by. You will not need a car.

Hope this helps you Julie .. but if you have read the posts on our Forum .. you KNOW how big I am on being your OWN best advocate!! That NO ONE cares about your body as much as you do .. AND if you don’t take good care of IT .. IT CANNOT take good care of you. Sending you a hug in this tough time! Katherine

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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I am flying tomorrow and I got all that was recommended through amazon.  Thank you again, Katherine.    TerryGerms Be Gone! 

REPLY
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Excellent plan, Kate. I believe seeing multiple docs during that visit will be ideal. Is going out of state affordable for you, Julie?

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