(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

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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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Colleen my husband could not get this to work

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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@cowboy1997, maybe this takes some time before the email change takes effect? I will check into it and let you know.

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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That would be the place to do it, for sure! Sorry it took so long for them to figure it out, but better late… Would you mind posting this on our advocacy stream as well?

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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@cowboy1997, I once had a difficult time changing my settings. Then I realized that I was logged into Connect on 2 different devices. I had to log off each before my new changes were accepted. Rosemary

Liked by tdrell

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Hi Cowboy, It should be a simple change, but obviously something isn’t working as it should because now you’re photo got messed up too. I have submitted the issue and it will be corrected shortly. Thanks for your patience.

Rosemary, you are correct that you have to logged out on all devices for changes to take effect. Thanks for pointing that out.

Liked by Jamie Olson

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@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

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Applesause makes them go down without any effort.

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@kaystrand

Group
1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco for a Probiotic that’s come from a doc or someone in the know? This was is 90 mill whatever is in probiotics. Would be very grateful for advise on this.

2- I go back to Mayo Rochester on January 18th. I’ve had 2 clear sputum cultures but have read that doesn’t mean much? I have ANOTHER CT scan on that date. If I still have a cavity, and my lungs look ok for it, I see a surgeon. Anyone out there had surgery for MAC? Anyone with cavitary MAC? I’m a little apprehensive about this appointment!

3- Happy New Year all. Glad I found you. It’s a crazy way to meet nice people, but it’s good we are here for each other. You’ve all helped me immensely.

Best
Kay S

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@laneyk Elaine, thank you so much for jumping in with your experience! People new to our disease read all the pages of our Forum.. it will be so helpful to them to read your experience .. see that not EVERYONE has all the difficulties! That indeed there is a “light at the end of the tunnel”! You are indeed “playing it forward” .. helping others on their journey as hopefully you have been helped on our Forum.
At the beginning of the journey it is a tough time .. reading your post will really help new people .. again thank you .. AND so glad you are doing so well! Sending you a Big Hug! Katherine

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@lindam272

Marie – I just joined this forum also and live in Arizona so can’t help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I “favorited” the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

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@lindam272 .. Linda, hello and Welcome to our Forum! So glad to have you! I am back and happy to be here!

You are one plucky female to have read all through the pages .. WOW! But yet we are indeed kindred spirits .. I would have done the same thing. I was an absolute sponge when I was first diagnosed with MAC .. I was so eager to understand my disease.

Just wondered just where you are on your own MAC journey? How are you doing? Anyway .. glad to have you here! Hugs! Katherine

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@bruce668

I finially got a call from mission infectious disease in asheville nc today and i have an appointment this thrusday evening. I sure hope they treat me better with mai than asheville pulmonary did my wife , they act like its nothing to worry about .

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Bruce, please let us know how things go with your appointment .. hope things go well! Sending you LOTS of positive energy! Hugs! Katherine

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@annie112

I have also been diagnosed with MAC. Started one treatment, but in so doing I was taken off my blood pressure medicine and it went out-of-control. Was in the hospital for several days. Scared to try again.

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@annie112 .. Annie, welcome to our Forum. This must have been so scary to you! My questions to you:
1. when you were diagnosed did you work with an Infectious Disease doctor?
2. did this doctor consult WITH your heart doctor?

In my opinion .. I am NOT a medical doctor .. BUT I feel there is ABSOLUTELY NO reason you should have ended up in the hospital IF you had been properly advised in your MAC treatment!!

PLEASE do NOT be afraid of the MAC treatment .. NOT BEING a medical doctor .. I still feel confident that with PROPER medical advice there is absolutely no reason you cannot be treated for MAC PLUS a heart issue!

PLEASE seek out a GOOD Infectious Disease doctor. ASK: “How many MAC patients have you treated in the past 12 months”. With this information you can get proper advise. PLUS start reading past pages of this Forum .. it is FILLED with good advise AND great support from wonderful people! Do NOT feel afraid .. we are ALL here for you on this shared journey! Hugs to you! Katherine

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@kaystrand

Annie
I started the big 3 in late July and continued my BP meds. I take 4 as I’ve had high blood since I was 20 and it’s through the roof without meds. The Rifampin makes it go up, so I’m constantly monitoring. I have to exercise and gets lots of sleep. I’ve lost weight since I started the meds, nausea on and off. I TRY to eat lots of veggies (had boiled dinner and salad for dinner- 7 servings in one meal).

What were u taking for MAC ? Maybe it didn’t absorb w the BP Med? Ask them, as u should be able to stagger all your meds and not take together. It’s a pain to take all this stuff, it bothers me if I let it. But the choice for me is having cavitary MAC grow, and that keeps me on track taking my drugs;-)

Take care Annie (that’s my daughter’s name! She’s an angel.

Kay S

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@kaystrand Kay, what a GREAT response! Thank you SO much for jumping in while I was gone .. it must have been such a help to Annie to get your post since you also take BP meds! Since I don’t take those meds it is so helpful for her to have that info. That is what our community is all about! Hugs to you! Katherine

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@kaystrand

Group
1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco for a Probiotic that’s come from a doc or someone in the know? This was is 90 mill whatever is in probiotics. Would be very grateful for advise on this.

2- I go back to Mayo Rochester on January 18th. I’ve had 2 clear sputum cultures but have read that doesn’t mean much? I have ANOTHER CT scan on that date. If I still have a cavity, and my lungs look ok for it, I see a surgeon. Anyone out there had surgery for MAC? Anyone with cavitary MAC? I’m a little apprehensive about this appointment!

3- Happy New Year all. Glad I found you. It’s a crazy way to meet nice people, but it’s good we are here for each other. You’ve all helped me immensely.

Best
Kay S

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@kaystrand Kay, I try to rotate more than one probiotic so I get several strands .. BUT I found this one with 50 BILLION which I think is pretty darn good at Amazon.com for only $21.54!
$21.54 NOW Foods Probiotic-10, 50 Billion, 50 Vcaps

https://www.amazon.com/gp/product/B0031RJXCK/ref=oh_aui_search_detailpage?ie=UTF8&th=1
KEEP REFRIGERATED TO MAINTAIN POTENCY .. only after opening .. not sure??

Kay, good luck on 1/18 .. I will be thinking of you! Let us know how it goes! We are glad you found us also .. we may have helped you .. BUT you have helped others also. That I think is the wonderful thing about our group .. we are all in this together .. sharing the journey together .. a nice place to be! Hugs to you and sending you lots of positive energy for 1/18! Katherine

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@katemn

@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful news! Just continue to do your “due diligence” .. now that you have educated yourself .. you now know how to take good care of your body .. so IT can take good care of YOU! YEAH! Just continue to do what you know you should be doing .. DON’T let up! I am SO happy for you! The New Year will be a GOOD year for you! Sending you a hug! Katherine

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@tdrell, Hi Terri! SO! Finally the day has arrived! For sure you have to let us know ALL the news! What has happened .. what have you learned .. don’t keep us in suspense! Hope it is mostly good news! Hugs to you! Katherine

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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@marier .. Marie, so glad you found us! As Cila, Terri and Cathy have said .. it is VERY helpful to read the past pages of our Forum .. there is SO much information plus a lot of support of so many nice people that you will find as you read. It is important that you do your “due diligence” in educating yourself about your disease. This is our shared journey .. BUT it is YOUR body .. that you are given for this lifetime .. just ONE body for this lifetime that you MUST take good care of! Start by educating yourself .. a good first step! Plus keep coming back to our Forum .. we are ALL here for you! Sending you a hug in this tough time. Katherine

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