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Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by @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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

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KathyG
@kathyg

Posts: 3
Joined: Dec 22, 2011
Posted by @kathyg, Dec 22, 2011

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy


Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011
Posted by @katemn, Dec 22, 2011

Hi Kathy,
There is so much to chat about .. I would be willing to call you later this afternoon or evening if that is convenient for you? Send me your phone number .. if today is not convenient .. when.

By the way .. at the theatre or wherever .. I was proactive .. I said right off “I just want to tell you that I have a lung issue so I cough .. but it is NOT contagious .. I don’t have a cold or flu!” The usual response was a chuckle .. but appreciation and a note of comfort and understanding,

Keep your chin up!
Kate


KathyG
@kathyg

Posts: 3
Joined: Dec 22, 2011
Posted by @kathyg, Dec 22, 2011

Yes, I also had a standard disclaimer whenever I was going to be in public. We always knew it wasn’t contagious because my husband never had it after the intial cold in October of 2010.

I left a message for Dr. Mullen to call me again today on my home phone. He usually gets to his calls at about 5:30 or 6pm. I am so glad I found you this morning….. Kathy


donut
@donut

Posts: 16
Joined: Jan 27, 2017
Posted by @donut, Fri, Jan 27 11:42am

Kate: How are you doing? I have MAC as well.


Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011
Posted by @katemn, Fri, Jan 27 8:47pm

Hi @donut,WELCOME (do you have a first name?) I don’t remember your @donut appearing before on our Forum? But anyway .. Hello and Welcome to our Forum! Personally I am doing just great .. tell us how YOU are doing!

We are so glad you found us! You will find our group a support on our shared journey with an exchange our of experiences and information that 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. As you educate yourself .. you MUST become your own best advocate!

RECOMMENDED READ ARTICLE I would especially recommend an article I just happened upon .. REALLY interesting .. lots of data that I WISH I’d had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don’t let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
Hope all is well with you! Katherine


Cindy Courtney
@cindyrnc

Posts: 25
Joined: Jun 22, 2017
Posted by @cindyrnc, Wed, Jun 21 10:57pm

I am a Registered Nurse Educator with a Masters Degree in Nursing. I have had Rheumatoid Arthritis for almost 30 years. I have been controlled well with Humira but also have Bronchiectasis due to MAC. My previous Rheumatologist just retired and his replacement said he’s going to have to take me off the Humiria due to the MAC. I am being treated with Zithromax 500 mg three times a week and low dose prednisone. I am VERY UPSET to be taken off the Humira because I’m doing so well with my RA. The pulmonologist told me I could take it but now this newer Rheumatologist is going to talk to the pulmonologist about his concerns and I just know they are going to discontinue the Humira. Like I said I am very upset. I won’t work if I come out of remission.
The pulmonologist didn’t add the Rifampin or the Ethambicol but acted like he would if I wasn’t better by my next visit. I will not take these antituberculin drugs. The Zithromax is bad enough with the GI problems. Any suggestions. I’m freaking out and I’m a Registered Nurse.


jentaylor
@jentaylor

Posts: 90
Joined: Feb 17, 2017
Posted by @jentaylor, Wed, Jun 21 11:23pm

Hi @cindyrnc, Welcome! You have come to a group with people at all stages of MAC/Bronchiectasis. You will find empathy & a lot of education, great information that people share! I’m an RN but can no longer work due to my lung/body health & I know there are other RN’s here, too. As much as I thought I knew as an RN, I really didn’t know as a patient having a severe lung disease. I have learned SO much from everybody here! It’s an amazing source of first hand knowledge! There are many words of wisdom to be shared! I’m excited for you to find a such a great group! I hope you find the answers to the questions you have, I believe you will. And also, if you are having a bad day (or month+), this is a great place to be heard & have other people cheer you on through these difficult & challenging times!

I get the “freaking out” part quite well, as do most of the people in this group. You are in great hands!

~Jen 🙂


tdrell
@tdrell

Posts: 333
Joined: Aug 21, 2016
Posted by @tdrell, Wed, Jun 21 11:35pm

CindyRnc..welcome to our site.If i were in your position….
I would immediately go on line to Nationaljewish.org and call them to see about having an appt with them….they specialize in Respiratory, Allergy AND Immunology. They practice coordinated care medicine under one roof….not a hospital but a huge clinic…no relation to religion at this point.
When MAC was found on my bronchoscopy …immediately I was referred to ID Dr to be treated with Antibiotics….by then i knew i needed a second opinion hence refused to start meds
..went to NJH in January who after review said NO ….NO MEDS…..issue is GERD Refluxing our SE wisonsin NTM containing water into my lungs…..of course the abscence of NTM infection was confirmed with a negative CAT scan and 3 step sputum cultures.
I am a retired RN with a masters in Nursing who practiced /taught for 50 Years.Tdrell

..


Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011
Posted by @katemn, Thu, Jun 22 10:09am

@cindyrnc, is your name Cindy .. first names are more personal! Cindy, what a tough time you are going through! Your situation is complicated AND it sounds like you are NOT receiving medical care/advice that you are comfortable with .. SO I really like the advice given by @tdrell .. Terri
to contact Nationaljewish.org

From my File Cabinet:
JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don’t be afraid to call them and ask that question; they are extremely kind and professional.

FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH……for the first 50 years of their existence….1898 til 1958 they did not charge clients..I am on Medicare….they accepted it fully….3 months after my trip….l have yet to see a bill….they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true….but it is there to help people. l beg you to contact them to check
From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card……no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests….especially as they were added.

Another option is our world renowned MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

Cindy, I am sorry you are upset .. that is a tough place to be in .. BUT upset is also a place of loss of power. Cindy we here on our Forum have found that “KNOWLEDGE is Power” .. I would strongly suggest that you read the past pages of this Forum .. Why? BECAUSE Knowledge is Power and not only will you learn about our shared Mac disease .. but you will ALSO learn about doing your “Due Diligence” .. being your OWN Best Advocate .. Oh so many things .. PLUS you will find a wonderfully supportive Community of people who will be there for you every step of the way! Keep coming back Cindy .. we will be here for you! Many hugs and positive energy! Katherine

Liked by JULA73, tdrell


boomerexpert
@boomerexpert

Posts: 275
Joined: May 13, 2016
Posted by @boomerexpert, Thu, Jun 22 11:24am

@cindyrnc – I too have the RA/MAC/bronchiectasis trifecta. I’ve not been on biologics for over a year, and doing fine. For a while it was Kenolog 40mgs every other month…started on 80/quarter. Full disclosure, I’m factor negative but hands are deformed…feet trying to follow. If Plaquenil (+ the 40 mg Kenolog) hadn’t made me queezy, was working well. I’m also retired so no need to be that level of functional, but doing just fine. And loving retirement BTW!
I wouldn’t want to be on a biologic w/MAC…rather find other ways to treat the RA then deal with worsened MAC.
I’m currently on 100mg of CBD oil 2X daily, and take White Willow Bark 650mg/twice daily, and my RA is managed well.
See a pattern here? There’s options, including natural remedies, to manage your RA…only one for the MAC that personally I’ll avoid as long as possible.
If you like the Rheumy, stay with him. He’s right, ya’ know.

Liked by JULA73


tdrell
@tdrell

Posts: 333
Joined: Aug 21, 2016
Posted by @tdrell, Thu, Jun 22 12:48pm

boomerexpert…..if the RA markers were negative…what did the Rheumatologist use to determine you had RA?? Xrays of the painful joints? I ask cause for past few months, my hands and hip joints (both replaced for osteoarthritis) and big toe joints are extremely painful all day long. RA blood tests negative. Rdrell


jentaylor
@jentaylor

Posts: 90
Joined: Feb 17, 2017
Posted by @jentaylor, Thu, Jun 22 1:12pm

Hi all, It really interests me that so many of us have a multitude of health ailments, not just MAC/Bronchiectasis. It’s interesting as well the number of people that specifically have RA (I haven’t been diagnosed yet at this time but my dr’s feel that it is likely) with MAC…which makes me believe that somehow this is all connected.

I listened to the part 1 of the MAC Conference (from D.C.) last night. I had a little difficulty hearing all of it clearly. The epidemiology part was quite interesting to me. They don’t necessarily have the answers to why their data shows what it does, in terms of things such Hawaii having the largest prevalence. Trying to understand why some people “get” MAC as opposed to those that simply exhale “it” back out…other than reasons we know of, such as having excess mucous to “catch” & “hold on to it”. I’m not speaking very scientifically here & I apologize, especially seeing that I’m an RN. That being said, it’s one thing to be a nurse, it’s another thing to be the patient!!! It’s a whole another ball game! I’m sure your conversations have gone over these topics before & I still have yet to get through all of the back log of posts since I started being apart of the group (I try to do it a little bit every now & then).

Anyway, I was just thinking out loud… I look forward to listening to the rest of the Conference.

Best,
Jen


ling123
@ling123

Posts: 156
Joined: Apr 06, 2017
Posted by @ling123, Thu, Jun 22 1:24pm

I think the ailments that lower the defense of one’s immune system could possibly make the person more susceptible to MAC. Again, I’m not a doctor. Just seem to remember reading about this somewhere.


Cindy Courtney
@cindyrnc

Posts: 25
Joined: Jun 22, 2017
Posted by @cindyrnc, Thu, Jun 22 3:29pm

I got a call today from the Rheumatologists office. The pulmonologist said I can stay on the Humira. I have minimal deformities because with the Humira it prevents inflammation by blocking the cytokines that cause the damage in the joints. I’d rather deal with the Bronchiectasis than a major RA flare-up. When I have flare-ups I can barely get out of bed and haven’t had one in a few years.

Liked by JULA73


Cindy Courtney
@cindyrnc

Posts: 25
Joined: Jun 22, 2017
Posted by @cindyrnc, Thu, Jun 22 3:30pm

It does. Usually only individuals with an impaired or suppressed immune function get MAC.

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