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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 15, 2017
In reply to @auntnanny "It certainly makes me smile. I've never even tried a harmonica ---- but may be headed..." + (show)
@auntnanny

It certainly makes me smile. I've never even tried a harmonica ---- but may be headed out to buy one. I have so much trouble finding enough time for everything (as I'm sure others do too). I cook lunch for the hired hands here on the ranch (and I'm a pretty good cook and put a lot on the table). So, from the time I start that until they eat and I get it cleaned up, I'm in for about 3 hours. Then...... I'd really like to just sit down -- Ha! I'm past 76 and have quite a bit of arthritis (and two torn shoulders that need to be replaced. Too much damage and arthritis to repair but there's so much down time and I don't know how successful that would be at this age. I've been reading a bit about stem cell replacement for some of these type problems........ know anything about that???? I have two grand pianos, an older 3-keyboard organ and a newer electronic piano/organ ----- and one saxophone in the house...... maybe I need that harmonica ----- and a lesson book. I saw a country music show in Branson, Mo --- young man was just ever so cute -- and he had what looked like a new type harmonica with a fabulous sound. I need to learn about that because it was great. Larger than just the old-type harmonicas ----- I was sure impressed. As I think back over today (here at 12:30 am) I never did my nebulizer today and I don't want to let up on that. Guess I'll wait till morning and be sure I do it twice tomorrow. Now...... if I were coughing, I would have thought about that much earlier today. Goodness, I feel like I've written a novel. So sorry to bog you down with these little sidenotes. Jan

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For further reading on harmonica and choir therapy for lung health, I think you'll find this Connect discussion and the links to the articles and video inspiring and interesting.
- “Harmonica therapy” for chronic obstructive pulmonary disease https://connect.mayoclinic.org/discussion/harmonica-therapy-for-chronic-obstructive-pulmonary-disease/

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017
In reply to @pfists "Hi all Haven't been on here for awhile. Saw my infectious disease Dr today. She wants..." + (show)
@pfists

Hi all
Haven't been on here for awhile.
Saw my infectious disease Dr today.
She wants me to get a second opinion at the Mayo clinic here in Minnesota just an one and half hours from here. I have been testing positive for mycobacteria abscesses for a year now. Had several CT scans throughout the year the last was a little better then the one before.
She said treatment May include a couple of IV's. I would administer myself. I have done IV's on myself before but was hoping for oral or inhalation medications.
Have others here had to do IV's.?
Really do not want to do this route.

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@colleenyoung  Dear Colleen, and to all of you on this team that made
this forum possible: YOU ARE AWESOME!    
 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017
In reply to @katemn "@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as :..." + (show)
@katemn

@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine

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@katemn So
right Katherine! Don&apos;t want any &apos;MIDNIGHT EXPRESS&apos; happening around here. For
those of you that don&apos;t know that movie; it is about a guy that got busted in
another country and was sentenced for years without end and mistreated horribly.
His family could not get him released. It is a true story also.
 

REPLY
tdrell | @tdrell | Jul 16, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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Windwalker...can you imagine trying to go to work...do activities of daily living...and have time for all the dr/lab/radiology appts??
think of all the years you put into Social security etc via taxes....
went to hand doctor (new since the one l had gone to retired after 38 years....12 years with me) in addition to new splints/braces l have to get EMG and then return for bad news (carpal tunnel no doubt)..interesting how one appt begets at least 2 more and more braces etc. So at night...l now have the special GERD requirements.....the CPAP and an ugly black splint on my right hand and arm.....tdrell

REPLY
tdrell | @tdrell | Jul 16, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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Jentaylor...interesting re comment about being in Kenya...(wow you really have had amazing experiences as a nurse...) one of my 3 sisters when l would stay with her in Chicago or Tuscon would be totally revolted when l would cough and have to bring up the mucus...even if we were in separate rooms..."you should do something about that" like l had not been searching for an answer for months. And after two years and the bronchoscopy , at last l had an answer (so it seemed til NJH said it was GERD) l called her and told her I had Mycobacterium Avian. 'AHA....she replied... you got it in Africa!!" 24 years ago l spent a week in Niger in the capital city visiting a college friend and her hubby who was Med director of western africa for Peace Corps. they lived in capital city in lovely house left by the french colonists,,,,air-conditioned etc. their car was air conditioned...yes we made a few trips to visit villages where Peace Corps volunteers were....but truth be told...conditions there were 100% better than some of the Public health houses l visited in Indianapolis or Racine.
So catching an NTM just cause it was Africa is plain silly in this case...not necessarily Jen's situation in Africa but mine.
If NTM is ever in the public's awareness....there certainly will have to be alot of public teaching re where...how...who gets....prevention etc Tdrell

REPLY
tdrell | @tdrell | Jul 16, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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ginak and windwalker....newer hospitals are not putting in central humidifiers cause of the chance of bugs growing in the water sources and being aerosolized ....and no longer using room humidifiers. So how many health care personnel were for years...and maybe still are in older facilities breathing in all the bacteria??? tdrell

REPLY
terryb1 | @128128terry11t | Jul 16, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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I am moving to an apartment building in December and have asked the sellers to remove the humidifier from the forced air heating unit. Terry

REPLY
cila | @cila | Jul 16, 2017
In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)
@lindam272

Hi, All, - I had my check up with my ID doc a couple of days ago. I went with a yellow pad and a page full of questions, primarily initiated from posts on this forum. I also went back and reviewed my sputum text results from the beginning before my appt. I have 2 docs collecting my lovely mucous - my ID doc and my CF doc. I realized in reviewing that my ID doc had the results of a clean test in March and my CF doc had a clean test from me in June! (I started the Big 3 in December 2016 and have taken them every day) So I've had 2 clear sputum tests and didn't even know it. No one told me and I didn't know what I was looking at when I reviewed the results - until you all came along! I just took another sample into the lab earlier this week which I know will come back clear. I've had some brain fog lately - enough to cause a small accident while backing out of a parking space last week. I've also had some other close calls and am having trouble keeping things straight in my business as a Realtor. I mentioned to my ID doc and told him in light of the fact that I have 2 samples clear and that I'm breathing better, I am going off the Big 3 meds. He wanted to keep me on until March 2018 to "be sure" those little buggers were dead. I said - Not happening! I'm off now. They are dead. I know they are dead. So prayers that they are! I have a CT scan scheduled for early next month about 10 days before I go back to see my ID doc and review this CT with my last one done last November. You all - most especially our Mentor, Katherine, are the best! I appreciate each and every one of you so much! I will keep you posted on my final results, but I know it will be a good outcome. Blessings! Linda M

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Congratulation Lindam! Its a great news! You feel much better when you don't have to take those 3 meds. I'm happy for you. Cila

REPLY
cila | @cila | Jul 16, 2017

Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my throat is hurting and I'm losing a little bit of my voice. I'm not informing my pulmonary Dr. b/c I called NJH and I got an appt. there. Thanks for everything. I'm so glad I'm on this forum you guys help me a lot.

REPLY
9 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017
In reply to @cila "Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my..." + (show)
@cila

Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my throat is hurting and I'm losing a little bit of my voice. I'm not informing my pulmonary Dr. b/c I called NJH and I got an appt. there. Thanks for everything. I'm so glad I'm on this forum you guys help me a lot.

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@cila Hi
there! Katherine is taking a little bit of a rest for a bit. She is trying to
get her health straight, so myself and others will jump in to help. You can
still call the Dr you have been seeing ( even though you are switching over to
NJH) and ask he or his nurse about your issues with the sore throat and raspy
voice. Also, a pharmacist can answer that too; as to whether it is a side
effect to the amikacin. When I first went on inhaled tobramycin, I got those
same side effects. In fact I lost my voice completely (pretty sure my hubby
loved that- LOL) Was told it is a temporary thing and that it would pass. It did
pass after several weeks. You can Google more info on that medication too. Just
type in Amikacin side effects and a bunch of sites will pop up. You can try
gargling warm salt water to soothe your throat. Let us know how you make
out.  Hugs - Terri M.
 

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