1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Katherine, Alumni Mentor | @katemn | Oct 24, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Hello Cowboy, interesting!

Just last night I read that exact thing! My husband pointed out the article "What's Really Causing That Annoying Cough?". The second item after Asthma .. was GERDS! It said: a Gerd related cough occurs when a surge of stomach acid reached the voice box. The irritation and inflammation that results from the acid lead to a persistent, raspy cough. You might also notice that your voice is more hoarse than it used to be.

Thought I'd quote that for anyone reading this .. I would never relate the cough to GERD! Too bad no doctor every diagnosed you sooner! Good thing you are persistent in your health! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Oct 24, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Good information Kay .. thanks! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Oct 24, 2016
In reply to @katemn "David, I also want to welcome you to our place of support and information .. it..." + (show)
@katemn

David, 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
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

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.

Jump to this post

Hello David, hmmm that is interesting! Chewing gum is not something I have tried. actually I have tried drinking water .. and SOMETIMES that does help. I am going to get myself some chewing gum! Any particular kind/type the best you've found .. or it doesn't matter .. the chewing is what works? Lately one of my worse times is talking on the phone .. really frustrating! Thanks for the tip! Hugs! Katherine

REPLY
Elaine | @laneyk | Oct 25, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Don't worry about the radiation from a cat scan. The dose is minimal. I am a retired radiological and nuclear technologist with MAC.

Wondering about the pain in upper abdomen. It is a squeezing pain? I have episodes of that, that does not last long, but can be quite severe. Not related to MAC as I have had episodes for many years.
Elaine K

REPLY
boomerexpert | @boomerexpert | Oct 25, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Indeed there is! Thanks, TD! Satellite website is nationaljewish.mountsinai.org

REPLY
boomerexpert | @boomerexpert | Nov 1, 2016

Hey all! Here's the link to the recent American Thoracic Society webinar "Strategies for Reducing Environmental Exposure to NTM: http://www.thoracic.org/patients/lung-disease-week/2016/nontuberculous-mycobacteria-week/webinar.php - lots a useful info.

REPLY
2 replies
tdrell | @tdrell | Nov 1, 2016

boomerexpert thanks for posting this.....will try to listen to webinar in near future!
tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Nov 1, 2016
In reply to @boomerexpert "Hey all! Here's the link to the recent American Thoracic Society webinar "Strategies for Reducing Environmental..." + (show)
@boomerexpert

Hey all! Here's the link to the recent American Thoracic Society webinar "Strategies for Reducing Environmental Exposure to NTM: http://www.thoracic.org/patients/lung-disease-week/2016/nontuberculous-mycobacteria-week/webinar.php - lots a useful info.

Jump to this post

Thank you! Very interesting info. Anyone interested in the shower head mentioned can refer back to a previous post I made on the Pall showerhead. I have been using it after a great deal of research. Yes it IS expensive .. but in this webcast the cost is stated as $90. If you decide to pursue it .. tell Chris Connelly of Pall Co. that you were referred by Katherine F. and was told the cost was $60.00 per shower head .. $120 for a 2 pack. Tell him you are a part of the Mayo Clinic Connect Forum and would he honor that $60. pricing for you also.

He is very nice. You have to go through some hoops to get an account set up .. but once it is done .. you just call Delia and reorder .. she is a Sweetie! I now am even more glad that I did this after listening to this webcast.

I don't think I mentioned it because I felt it might sound like overkill .. but I also added a filtration system to my kitchen sink to use for drinking/tea/coffee water. But after listening .. I now am glad I have taken these precautions. I fully plan to take them as medical tax deductions at the end of the year!

iSpring CU-A4 - US Legendary - 4-Stage 0.1 Micron Ultra-Filtration Water Filtration System with No-pressure Chrome Faucet $149.00
https://www.amazon.com/iSpring-CU-A4-Ultra-Filtration-Filtration-No-pressure/dp/B009AEJWZG
I added a better faucet:
Kingston Brass Concord KS8198DL+ Single Handle Lead-Free Water Filtration Faucet, Satin Nickel $59.00
https://smile.amazon.com/Kingston-Brass-KS8198DL-Lead-Free-Filtration/dp/B004KPL1BS/ref=cm_cr_arp_d_product_top?ie=UTF8
Both my husband and I feel the water tastes SO much better .. in addition to being properly filtered .. 0.1 Micron Filtration!!

Hope this helps someone! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 1, 2016

INTERESTING!! I just googled the doctor's name from the webcast .. just happened upon this article .. REALLY interesting .. lots of data!!
http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
See what you think! Hugs! Katherine

REPLY
2 replies
tdrell | @tdrell | Nov 1, 2016
In reply to @boomerexpert "Hey all! Here's the link to the recent American Thoracic Society webinar "Strategies for Reducing Environmental..." + (show)
@boomerexpert

Hey all! Here's the link to the recent American Thoracic Society webinar "Strategies for Reducing Environmental Exposure to NTM: http://www.thoracic.org/patients/lung-disease-week/2016/nontuberculous-mycobacteria-week/webinar.php - lots a useful info.

Jump to this post

boomerexpert....just listened to Dr Lande on the webinar...most interesting and as always more issues to consider!...thanks for posting it,tdrell

REPLY
View MoreView Less
Please sign in or register to post a reply.