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!

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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!

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

nannette | @nannette | Apr 19, 2017
In reply to @beatitnow "Hi everyone! I am writing this last minute because I am getting slightly nervous....I am supposed..." + (show)
@beatitnow

Hi everyone! I am writing this last minute because I am getting slightly nervous....I am supposed to have an endoscopy tomorrow to see if I have acid reflux. My primary doctor referred me for this because I told him that a lot of ladies have acid reflux that have MAC/MAI, and I have to clear my throat more than I used to. I DID NOT tell my pulmonologist, or ask his approval...(don't know if I should have). Should I be worried about doing this procedure while I am on the MAI Big Three drugs? And, worry about a possible infection? I live in Great Falls, Montana currently and they only have the procedure where they "put you out" and stick the tube down. I would love your advice, I can always cancel last minute even though I know they would not prefer that. Yes, I am feeling a little "irresponsible" right now. :/

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@beatitnow, I am a silent observer but I couldn't help but see your post and wanted to tell you that I had an endoscopy while on the big three...was put out and had no problems at all, no infections. And they found I had higher than normal reflux. I personally feel like my reflux got much worse on the three drugs. That's a lot of acid being created in your stomach. So, I wouldn't worry. I think you'll be fine. And I was put on 20mg of Pantoprazole and now after about two months the reflux is much better. Hoping once I stop the drugs that I can wean myself off the Pantoprazole. Nan

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beatitnow | @beatitnow | Apr 20, 2017

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

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9 replies
kearney | @kearney | Apr 20, 2017
In reply to @debbiet "I am looking for patients that have MAC to learn about their meds and sidemeffects" + (show)
@debbiet

<p>I am looking for patients that have MAC to learn about their meds and sidemeffects</p>

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Can you please give me any helpful info on MAC ??

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 20, 2017
In reply to @debbiet "I am looking for patients that have MAC to learn about their meds and sidemeffects" + (show)
@debbiet

<p>I am looking for patients that have MAC to learn about their meds and sidemeffects</p>

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Welcome to Connect, Kearney.
I moved your message to the "MAC & Bronchiectasis" group where members are sharing a wealth of information about MAC. I encourage you to click VIEW & REPLY in this email and to read through all the messages in this discussion thread.

Be sure to go to the MAC group page here: http://mayocl.in/2ouP4e8 and follow the group to receive notifications when new messages are posted. You can also browse through all the discussions.

When were you diagnosed with MAC? How are you doing? We look forward to getting know more about you.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 20, 2017
In reply to @beatitnow "@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask..." + (show)
@beatitnow

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

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<br><br><br><br><br>Hello. Acid reflux can occur without any feeling to alert you. Mine burned <br>me badly, at first I thought I must have cancer or something. I complained to <br>drs for years, but none suggested I may have GERD (acid reflux). Even my <br>pulmonologists never thought about it. The Mayo did a cat scan and found that my <br>esophagus was corroding. When that happens, one stands a chance of it turning <br>cancerous. I followed their treatment plan and it has cleared up.  Hope <br>this helps, -Terri.<br> <br><br>

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nannette | @nannette | Apr 20, 2017
In reply to @beatitnow "@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask..." + (show)
@beatitnow

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

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@beatitnow, at about month four of the three drugs it was like a volcano erupted and my reflux got really bad. I personally never had or have any burning but the reflux was coming up to my throat (and the endoscopy also showed I have a sliding hernia, hence the reflux coming up easier) so all I ever did was clear my throat constantly it seemed. And that had never happened before. So that was my issue but I know everyone is so different. Hope that helps. Nan

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chinasmom | @chinasmom | Apr 22, 2017
In reply to @jh "I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with..." + (show)
@jh

I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with another more serious infection during a bronch.
I was on 3 to 6 antibiotics for 8 years. After 2 years I no longer tested positive (sputum) for the MAC.

After surgery to remove the lobe with the other, more serious infection, I have neither.

Good nutrition, daily EXCERCISE via workouts on my tread mill to keep lungs clear, have been key. Basically, I never let it interfere with my life. Yes, sometimes I was tired particularly after my morning 'cocktail' of meds, but my husband was good at gently coaxing me on, and I would eventually get over the 'hump' and enjoy an active day.

Also key, get an adjustable bed. They are expensive, but necessary so that you don't sleep flat, I waited years, and found I should have followed my Dr.s instructions immediately. Also, eat light at night.

but really, the huffing, puffing excersize 4 days a week, keeps the lungs clear and seems to have been (and still is) my biggest help other than the meds.

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@katemn, you ok haven't seen a post from you since April 13? I have been doing research and writing my appeal for my pain medicine so i havent had time to write any thing on mayo connect. You were takeing a sputum sample in for evaluation. I'm just glancing at names and dont see yours. I Hope you and you husband are alright. I'll keep checking back. You are missed!!!!!
Becky

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jewel8888 | @jewel8888 | Apr 23, 2017
In reply to @boomerexpert "Thanks, Katherine - this is an article we must all share with our docs...all docs not..." + (show)
@boomerexpert

Thanks, Katherine - this is an article we must all share with our docs...all docs not just ID or Pulmo...for ex: I urged my Rheumy to start requiring a CAT scan in addition to the standard TB test before placing patients on biologics - shockingly, he looked surprised even after admitting that he now has more MAC patients than he's ever had before...sigh...

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I agree! Thank you for helping to advocate on this topic. An advance scan would have been very helpful in my case. Fortunately i think more pstients are explaining this to the biological companies.

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Jennifer | @megan123 | Apr 24, 2017

I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new bud tree nodules. Does this mean my NTM is active??? My oulmonary guy never explains anything. In process of a second opinion. Have minimal symptoms of Mac. Little sputum, no cough. Have been getting some nite sweats but not sure if it's menopause. help...

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20 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 24, 2017
In reply to @megan123 "I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new..." + (show)
@megan123

I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new bud tree nodules. Does this mean my NTM is active??? My oulmonary guy never explains anything. In process of a second opinion. Have minimal symptoms of Mac. Little sputum, no cough. Have been getting some nite sweats but not sure if it's menopause. help...

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<br><br><br><br><br>I have 'Bud in Tree' going on in my lungs too. It said on my medical report <br>that it may indicate small airway disease. (as if I did not have enough other <br>lung diseases!) It may be part of the bronchecstasis disease process. You can <br>Google more info on it and then ask your dr questions.<br> <br><br>

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