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.

david1952 | @david1952 | 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

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Dear Cowboy,
Glad you found a source. Hope you get relief. They tested my cough with medication for two months to see if I had acid reflux, but alas i did not so that's not my issue. Best wishes,
David

REPLY
david1952 | @david1952 | 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

Dear Lisa, Sorry to hear of hoarse voice. Must be frustrating. If it is post-nasal, have you checked your allergies. Or maybe a sinus specialist. They are doing new stuff now days.
I don't think there is a lot of radiation in CT scan. They are quick and localized. You might research how large a dose of radiation one CT gives compared to something like the cancer radiation some people get.
Blessings
David

REPLY
david1952 | @david1952 | 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.

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Hi Katherine,
I saw your latest coughing reply. When I am in a bout of coughing, I find that chewing gum helps it calm down (or maybe it just calms me down! lol) Milk seems to aggravate it. Water doesn't help. Ice cream with a sweet topping can seem to start a coughing jag. I'm thinking maybe it's the cold sugary sensation. Anyway, different strokes for different folks!
Blessings,
David

REPLY
cila | @cila | 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 Lisa, I can see where you coming from. I too have pressure on my chest, having hard time breathing sometimes and aching on my back. My pul. Dr. said its my acid reflux but I think is from my lungs. A friend of mind said who had NTM said is 1 of the side effect of the medicine. I have been on the 3 meds for 4 months now and Nov. I will see my Dr. and said I will have CT scan. I really can't tell if the meds are working. The only relief I get when I feel the pressure on chest and back is prayer and rest. I can't do all the things I used to do without stoping and rest. I will have you in my prayer and look at the bright side. Cila

REPLY
david1952 | @david1952 | 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

Dear Readers,
Many thanks to the contributer who suggested the videos on lung disease from the national jewish health conference! It is at:
https://www.nationaljewish.org/ntmvideos2016
They were very clear and helpful and informative!
Hats off to you!

REPLY
Kay Strand | @kaystrand | 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

David
If the test they did for reflux was to put you on a PPI drug, they don't necessarily help airway reflux ( the kind you get symptoms from like post nasal drip, coughing but no hearburn). Mayo does a 24 hour Impedence test which is the only test that is definitive I was told, for silent reflux. Silent Reflux can cause MAC in some casas so I'm having the test, hoping to get rid of my MAC but making sure Reflux does not cause it to come back.

This is just what I was told. Others can weigh in on this.

Thanks
Kay S

REPLY
boomerexpert | @boomerexpert | 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

Where in the New York area? You man Manhattan/the Boroughs?

REPLY
tdrell | @tdrell | 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

David1952....since you benefited from National Jewish 2016 NTM workshop videos....you might also like the ones from 2015....go to same web site bit dont fill in any date at the end.tdrell

REPLY
tdrell | @tdrell | 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

Lisa2860 I believe NationalJewish in Denver has a sattelite at Mt Sinai in Manhattan.tdrell

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

Hello Lisa, I really agree with Kay .. I have had the CT scans and feel if it helps my doctor take better care of me .. make a better diagnosis of my progress .. then I will definitely do it! It might help you feel better if you see the below website.

This website explains it really well:
http://www.radiologyinfo.org/en/info.cfm?pg=safety-xray
Essentially a Ct scan is: 10 mSv and Naturally-occurring "background" radiation exposure : We are exposed to radiation from natural sources all the time. According to recent estimates, the average person in the U.S. receives an effective dose of about 3 mSv per year from naturally occurring radioactive materials and cosmic radiation from outer space. These natural "background" doses vary throughout the country.

Also, Mayo Clinic gave me a nasal spray that has really helped me with the post nasal drip. I didn't think I had it either .. but my doctor took a look at my throat .. said yes you do .. and I had to trust him! A bit of a hassle in that I have to get the nasal spray from Mayo pharmacy .. and it has to be refrigerated .. BUT it works so I do it!

I wonder .. kind of sounds like you do not have a lot of confidence in your current doctor? Personally I think that is SO important in the over all recovery of our disease. Wonder if you really do want to seek a second opinion? Elsewhere on our Forum I have detailed how I have gone about finding a new specialist for myself or my husband. If you are interested in doing that .. you might read back posts?
Hope the above helps just a little bit! Sending you a hug! Katherine

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