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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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
- 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!
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David1952 welcome to this site. It is very informative and helpful....as you will see. I am wondering how the doctors knew you had bronchiectasis in addition to your MAC? TDrell
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2 ReactionsDavid, I also want to welcome you to our place of support and information .. it is a great place to keep coming back to! It sounds like you have a plan ongoing to beat this thing .. and are working your plan! Good for you! I am so glad you are reading the previous posts .. LOTS of good information and support .. I think it will really help you on your journey .. plus keep us posted on how YOU are doing! Keep coming back!
You may have read that after thirty months on 4-5 antibiotics .. I have now been "stable" since May 2014 .. SO there IS light at the end of the tunnel!! I travel .. have fun and have a nice life! BUT like you I also developed Bronchiectasis .. frankly I didn't even realize it .. paid ZERO attention to it until really after I became stable .. read the fact as an after thought on my Mayo Clinic notes .. AND paid more attention because I kept coughing so much AFTER I was stable from MAC!! I asked about the Bronchiectasis .. did some reading .. AND realized my focus had been so much on just healing from the MAC that I hadn't given a thought to the scarring of my bronchial tubes!
I asked Dr. Aksamit at Mayo Clinic about it .. and if I am remembering correctly .. his response was that the two (MAC and Bronchiectasis) go so frequently together that frequently the doctors cannot tell which came first .. the chicken/egg thing. That the scarring of the bronchial tubes results in a pooling of the mucus .. which means it does not cough up as well .. which then becomes a perfect breeding ground for mycobacterium. Hope I am paraphrasing that correctly. I understand that the scarring of the bronchial tubes shows up on my CT scans.
I have started placing a BIG glass of filtered water right by my toilet (not to be gross) .. but that big glass reminds me to DRINK LOTS OF WATER DAILY! I also daily take an over the counter “Maximum Strength Mucinex" to loosen the mucus and exercise as much as possible to keep my lungs and body healthy.
I truly understand about the coughing! When people feel badly for me for the coughing .. I tell them .. it is GOOD for me .. it is keeping my lungs healthy .. PLUS for a 73 year old woman "I have abs of steel .. despite NO 73 year old woman should have abs of steel!" It always makes them laugh .. but truly .. in time the coughing is like the old isometric exercising .. your core muscles will become SO strong .. you no longer will hurt. The only time I get in trouble is if the coughing gets too bad I can strain an upper should muscle .. now that does hurt! I take anti inflammatorys until it quiets down .. what is .. is! Hope you find some of this helpful.
Sending you a hug .. I know it is tougher in the beginning! Katherine
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I found this following link helpful .. that included the below info : http://www.uchospitals.edu/specialties/lung/conditions/bronchiectasis/
Patients are also encouraged to drink lots of fluids to keep secretions flowing and to exercise frequently to help clear the lungs and maintain cardiovascular health. Many patients also benefit from frequent, even constant, antibiotic use, often delivered directly to the lungs with a nebulizer, as well as medications to dilute mucus, dilate the airways and decrease inflammation.
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2 ReactionsI think it was through a CAT scan, but I'm not sure.
Thanks for the info Katherine. I am anxious about the coughing because it's starting to interfere with my work. I had a weak voice to begin with. I have been on a nebulizer 3 months 4 times a day - taking budesonide and albuterol-ipratropium. I also confess I'm drinking less water than I used to - it doesn't taste as good as before...
David
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1 ReactionHello David, I SO know what you mean about the coughing .. truthfully it becomes embarrassing at times with people I don't know. I make a point of mentioning that I "have lung issues.. I am NOT contagious .. I do not have the flu". This is because through the years I have found people alarmed by my coughing .. so I just meet it front end by explaining .. especially in close quarters like a theatre .. plane etc.
I wonder if the nebulizer 4x a day might have anything to do with the weak voice. Am correct in understanding you are referring to a nebulizer that takes the meds and creates a mist that goes into your lungs 4x a day? I did this for thirty months just once a day with my inhaled Amikacin and found it did affect my voice some. If you are doing inhaled meds .. are you being REALLY careful about sterilizing? I have a couple of ideas if you are that I came up when I was doing it.
Also .. JUST IN CASE .. you maybe should mention to your doctor about the coughing .. just in case you either need to do MORE .. or LESS of something. I know for me with the Bronchietasis .. I have just kind of accepted it as a fact of life .. BUT making sure when I use my 2 inhalers in the am and pm .. I do my "lung hygiene coughing" and watch for the color of the sputum. If it stays consistently dark yellow for a longer period of time .. I contact my doctor because that probably means an infection. The best of times is if the sputum is clear or mostly clear.
In terms of the water .. I would REALLY suggest one thing you might do is .. get the biggest liquid container for work you can find .. I got one for my husband that was I think 40 oz or something then:
1. flavor your water with whole fruit or herbs by letting it sit overnight in the water or just squeeze the juice in your water. It really only takes a few seconds to slice a lemon in half and squeeze it in the water.
2. or a few ideas: 5 Ways to Make Water Taste Better (So You'll Drink More of It) http://www.womenshealthmag.com/food/
3. OR 20 Tips to Make Drinking Water Taste Better .. http://www.shape.com/healthy-eating/healthy-drinks/20-tips-make-drinking-water-taste-better
MAN!! I think I'm going to try some of those tips .. I'm getting bored with all this water .. have been MAKING myself drink it! Thanks for making me do the research .. I benefit!!
But remember that each of has a different journey because each of us has a different body and issues .. so you have to chart your own course and watch your own symptoms. Be our own best advocate with your doctors .. by educating yourself .. gathering all the knowledge .. digesting what applies to you .. what doesn't .. and taking the very best care of yourself that you possibly can. You WILL get through this .. keep the faith! Hope this is helping just a little bit! Sending you a Big Hug! Katherine
Thanks for your quick reply Katherine! I will use those lines with people worried about me infecting them. But the real problem at work is the cough is lessening my speech and I "choke up" when voicing more than a few paragraphs of conversation. I've been coughing for 4 months now and my pulmonologist knows my concern. She gave me a cough syrup with codeine for nighttime and that helps me sleep. She also gave me a drug called Benzonatate (Tessalon) for cough twice a day.
The voice has been a problem for 10 years. I had surgery at Mayo Clinic for nerve damage as my vocal chords don't come all the way together. So that's part of the voice weakness.
I like your tips on drinking water. I will try some of them! You have good resources.
A hug back to ya!
David
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1 ReactionJust wanted to share my good news and that is after 4months of the 3 antibotics my bronchcospy and sputum cultures came back clear for MAC. I found out recently that I did not have the cluster kind, so I had one of the better ones to have. Good news 12 more months (as long as cultures stay clear which I'll have to be tested for every 2 months for a year. Bad news is that my RA dr is wheening me off predisone and I developed a rash. Tool me off the E and the R for a week. Started the E first and the rash was back. Stopped it again let it clear and have taken the R now two days not noticing a rash yet. ID Dr is sending me to an allergy dr to try and desensitize me to the E meds. We'll see what they say. I still have high fevers and night sweats sometimes and my voice is not normal as well so I asked my reg dr to recommend me to Mayo, which one of their Pulmonologist is going to see me. ID dept didn't want to see me as they felt my course of treatme t was same as they would do (is how it was explained to me). I guess my Pulmonologist here thinks I might have interstitial lung disease, but I haven't heard that from him heard it from my ID dr, so we'll see what Dr at mayo thinks. Might even go for third opinion if they all recommend an open lung biopsy as I'm not too excited about having that done. But excited my cultures are clear and there, so far, is light at the end of my tunnel.
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3 ReactionsDavid I have no idea if this might help you .. but as with your issue .. there have been times that I just have to stop talking because I just can't! Also .. I found my voice didn't "sound like me". So being a great googler .. I just put in the name of my city and "speech pathologist" .. I'll be darned .. I came up with a name with the below bio:
"a medical speech pathologist in private practice for over 25 years. He holds a masters degree in speech pathology from Eastern Illinois University. He has completed continuing education in voice evaluation and care, fluency disorders, oral myofunctional disorders, myofascial evaluation and care, and oral motor speech evaluation and therapy. He has continued an avocational study in areas of brain science, learning science, behavior and muscle function.
He holds certification in speech pathology from the American Speech Language Hearing Association, license for speech pathology in the state of Minnesota, membership in Minnesota Speech Language Hearing Association, and membership in the International Association of Orofacial Myology. He also participates with his voice colleagues in the MN Voice Colloquium."
I made an appointment with him .. VERY interesting!! I was probably a very Uninteresting patient for him .. his usual client was opera singers recovering from surgery needing to get back to work etc .. that is the one I really remember. But he really helped me! He gave me various exercises to do on a daily basis .. it helped greatly. Now I don't have a clue if it might help in your situation since you had surgery etc .. but it might be worth checking out? Just a thought? Just keep trying to all you can to be as healthy and happy as you can! Hugs to you! Katherine
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1 ReactionJill, this is just WONDERFUL news! SO happy for you!
I’m so glad you ae seeing an Allergist for the reactions .. it was a really good allergy specialist who really explained some things to me that no one ever had before.
Re: your voice .. check out my post to David re a voice pathologist I saw .. don’t know if it may or may not have any relevance in your voice situation .. but it helped me.
REALLY glad you are getting referred to a Mayo Pulmonologist .. they all work as a team so you will be getting a LOT of great advice from a LOT of pretty smart people! Hopefully they will get to the bottom of things for you. Whatever they recommend .. be it a lung biopsy or whatever .. frankly I really trust those people. Mayo Clinic is ranked #1 in the nation .. can’t get better than that!
Jill, I just LOVE your positive attitude of seeing the bright side of this .. and dealing with whatever comes in the future with Mayo .. keep it up and you will do just fine! Also, make SURE you keep us posted .. we are here for you come what may! Hugs and congrats to you! Katherine
Hi all,
I just came across the journal article led by Mayo Clinic's Dr. Timothy R. Aksamit. http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext
The article is structured around questions that I have seen asked quite often in this forum. It takes these questions and outlines the treatment and research developments at the time of writing, which was 2014. Here's the intro:
"This review will utilize essential questions about nontuberculous mycobacterial (NTM) lung disease to succinctly address important new developments in the pathogenesis, diagnosis and management of NTM lung disease with a focus on practical information and “bottom line” answers.
1)What do I tell my patients who ask, “where did I get this infection” and, “should I take showers”?
2)What is the connection between bronchiectasis and the acquisition of NTM lung infection?
3)What other factors are important in the pathogenesis of NTM lung disease?
4)Why does it seem that am I seeing more new NTM lung disease patients?
5)Why is the diagnosis of NTM lung disease so complicated and does the diagnosis of NTM lung infection obligate specific treatment?
6)Unlike traditional tuberculosis, what is behind the irrelevance of most in vitro susceptibility testing reports for NTM infections?
7)Is there anything new for the management of patients with Mycobacterium avium complex lung disease? How does the radiographic appearance influence treatment?
8)Is there anything new for the management of patients with Mycobacterium abscessus lung disease?
9)What about the management of other NTM respiratory pathogens?
10)Is there a role for the use of macrolide monotherapy for non-cystic fibrosis bronchiectasis?"
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