(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

@kathyg

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

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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

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Katherine, thanks for your message regarding sharing information as opposed to sending a private message. I just read a post that stated the email address and other personal info for our members were now deleted from the site cause this forum is public and that info is private. The post said to send a private message to reveal personal identification. So that’s why i tried to send one.

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@melissa23

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

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@donut, I go to Dr, Timothy Aksamit at Mayo Clinic, Rochester MN .. he worked with a team of several doctors .. you can’t go wrong going to ANY of them. Below is some good info on doctors hope it helps:

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.
* 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
MAYO CONTACT INFO .. JACKSONVILLE FL
@windwalker, Terri shared 01/17 : Mayo Clinic in Jacksonville, Fl. and I see Dr. Jack Leventhal (pulmonologist) he has been a real blessing and life changer for me. The Mayo has an easy to use website with a “make an appointment tab. You do not need a referral. They have a dept to ask if your insurance will cover you there. They are a non-profit hospital, therefore, they don’t gauge on pricing either.
*Another member: pulmonologist at the Mayo Clinic in Jacksonville FL. His Name is Dr. Jack Leventhal. This man has saved my life I am sure. I was put on alternating monthly antibiotics for three yrs. that worked for a while. Now I am on alternating months of an additional antibiotic called tobramycin. It is super expensive but it has totally dried up the infection. It is what they commonly give to CF patients to help keep the myco-organisms at bay
*or Dr Chandler.
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JEWISH NATIONAL HEALTH
https://www.nationaljewish.org/treatment-programs/directory/ntm
on the rigorous tests without worry about paying for pricey tests….especially as they were added.
*From Member @tdrell Terri who was diagnosed at National Jewish Health for MAC in 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.

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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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@heathert, Heather, thank you for jumping to support a new comer! Hugs! Katherine

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@Paula_MAC2007

I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 – April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.

Over the years, I grew to feel like my old self – although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!

Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist – to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.

Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it’s not real concrete yet.

So my MAC appears to no longer be ‘resting’.

I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.

I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!

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@donut, it is important that you read through the past pages our of Forum so that you educate yourself about our shared MAC disease .. THEN you will be able to do your ‘due diligence’ in choosing a GOOD Infectious Disease doctor .. DEMAND excellent care .. KNOW what testing SHOULD be done .. WHAT AFTER care should be done. REMEMBER @donut, NO ONE cares about your body the way you do .. YOU must be your OWN best advocate .. BUT without REALLY understanding our shared MAC disease .. you will NOT be able to advocate for yourself. So you go girl! Educate yourself .. ask any questions after you have read the pages .. but I think you will pretty much answer your questions by reading. Hope this helps! Hugs to you! Katherine

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@georgette12, Hi Gina, now I understand but truthfully our Forum functions as a public Forum rather than a private one. But now I understand! Hope all is well with you! Hugs to you! Katherine

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I wish i could remember wheren i saw the post about the private messages. If i find it again, i’ll let you know. Blessings

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@georgette12, Gina here are a couple of message .. hope it helps! Katherine
Posted by @kanaazpereira, Sat, Jan 7 at 1:29pm CST
Hi @128128terry11t,
Here’s how to send private message.
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.
Hope this helps.
Reply
Report 

Katherine, Mentor
@katemn
Posts: 764
Joined: Nov 21, 2011
Posted by @katemn, Sat, Jan 7 at 2:09pm CST
@kanaazpereira, and @128128terry11t Terry ..
Just wanted to jump in .. personally I feel that private messaging deprives each and every member of the sharing and caring that is involved. That unless a message is TRULY private .. it robs our Mayo Connect of the very purpose it was designed for .. sharing of information .. good and bad .. fearful or delighted. We are all here on a shared journey .. unless we really DO share our cares and woes .. PLUS our victories and joys as they happen .. PLUS the tips and help as we discover them ..we deprive each other.
This is just my personal thoughts. Hope I am not stepping on any toes. Hugs to all. Katherine
Colleen Young, Connect Director and kanaazpereira, Connect Moderator like this

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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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Hello All! I went to my first gym class yesterday. Thought I would start
off slow and did the Silver Sneakers class. I was the youngest in there at age
58; the others were 65+. I gotta tell you, they kicked my butt! What a fun
workout though. Their exercises are designed to work the brain too. I only had
to stop twice in the hour and twenty minutes to catch my breath. Look forward to
the next one on Monday!   -Terri M.

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@maryjo2sell

I have used our similar local “compound” for geographic tongue. So sorry you got the thrush. It is a problem with the inhalers. I only use mine when really needed- Symbicort or Spiriva. I have found that they can help clear up my airways a bit after I have just done my own ” clearing”. Right now I am taking extra meds as I got shingles over the weekend. I am lucky it is not a big, bad case, as I had the vaccine. But still, not a lot of fun!
I really appreciate your forum and all the work you must do! Have a good night!

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At age 58, I got my shingles vaccine last month. They went ahead and gave
it to me under the age of 60, because you can never have one after a lung
transplant. I am glad I got one because I have two friends under age 60 that got
shingles.  -Terri M.
 

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@katemn

@maryjo2sell Maryjo interesting that you STILL go shingles even though you got the shot! WOW . . I thought I was safe having gotten the vaccine .. hmmm! Hope you are not too bad with it .. my daughter in law had it (no vaccine) and was just miserable. Keep us posted with how it goes for you.

I did a bunch of more research on oral thrush .. am seeing someone next week on another issue .. am going to try to “slip in” this issue if I am able to! If I get any info .. I will for sure to share it on oral thrush! Hugs! Katherine

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Would eating yogurt help your thrush?
 

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@katemn

@maryjo2sell, Maryjo, thank you so much for the great info! Where did you find the best price to purchase yours?

Question: Are you working from the Daily Digest?
1. if so just hit ‘VIEW & REPLY’ just under that particular post .. then you can reply/answer .. or “LIKE/heart” .. (do NOT nit REPLY BY EMAIL . that will not go on the Forum)

Question: Are you working from individual emails?
1. if so just hit ‘VIEW & REPLY’ just under that particular email .. it will take you to our Forum .. then you can reply/answer .. or “LIKE/heart”
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=23#post-247625
Hope this helps .. if it doesn’t .. just let me know! Hugs to you! Katherine

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Good! He is really good at explaining things to you and sharing the x-rays,
scans, etc. If he doesn’t offer, ask, he can pull any of your test results up on
his computer and discuss it with you. I hope you like him as much as I do. He
has been a life-saver for me.    -Terri M.
 

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