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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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<br><br><br><br><br>Indeed, we all will. Thank God for all of you.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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<br><br><br><br><br>Ditto from me Katherine. <br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @turbo "I was just diagnosed with Mac after spending a week in the hospital with flu b..." + (show)
@turbo

I was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??

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<br><br><br><br><br>Hi there. Just saw this post tonight. Wondering how you are doing <br>now?  -Terri M.<br> <br><br>

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 25, 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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Got it, Windwalker. I totally understand. 🙂

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Jennifer | @megan123 | Apr 26, 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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Tk u so much. I know I have to start on meds soon. In the process of getting new Mac dr.
In Toronto the system sucks. U have to wait. Hopefully I can get in sooner for new Dr, but u r right I know I have to start meds...

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beatitnow | @beatitnow | Apr 27, 2017

@nannette and @windwalker....Nan, did you have silent acid reflux or heartburn? I have no heartburn. The only thing I have is some clearing of my throat and maybe a little extra saliva/acid coming to my throat sometimes...I didn't know if that was due to bronchiectasis or not, because this is all new to me.

@windwalker....how long did it take for your symptoms to clear? Were you put on medicine for acid reflux or just diet change? Did you have a scope done again, or how did you know yours cleared? Thank you!

I have been doing some researching...and some firm thoughts are that PPI's don't work on people with silent acid reflux. Thanks for your replies in advance. Amy

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4 replies
Kay Strand | @kaystrand | Apr 27, 2017
In reply to @beatitnow "@nannette and @windwalker....Nan, did you have silent acid reflux or heartburn? I have no heartburn. The..." + (show)
@beatitnow

@nannette and @windwalker....Nan, did you have silent acid reflux or heartburn? I have no heartburn. The only thing I have is some clearing of my throat and maybe a little extra saliva/acid coming to my throat sometimes...I didn't know if that was due to bronchiectasis or not, because this is all new to me.

@windwalker....how long did it take for your symptoms to clear? Were you put on medicine for acid reflux or just diet change? Did you have a scope done again, or how did you know yours cleared? Thank you!

I have been doing some researching...and some firm thoughts are that PPI's don't work on people with silent acid reflux. Thanks for your replies in advance. Amy

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Amy
I was told I had silent reflux for a full year. PPIs, diet, elevated head of bed didn't change my throat clearing. Had the gold standard test for reflux at Mayo. 24 hour Impedence test. I do NOT have ant reflux. I clear my throats and have tons of mucous. My MAC is supposedly gone. Now theyre saying it's inflamation in my nose. My sinuses are healthy - very honestly, tons of people have it. I don't think they really know why.

What do others think?
Kay S

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 27, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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@katemn, Katherine, I am sending you prayers.
Rosemary

REPLY
barbjh | @barbjh | Apr 27, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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Katherine, I hope you are feeling better and the Mayo is taking good care of you! I really appreciate all that you do for our little MAC forum! Take care of keep us posted when you are up to it! Barb

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 27, 2017
In reply to @beatitnow "@nannette and @windwalker....Nan, did you have silent acid reflux or heartburn? I have no heartburn. The..." + (show)
@beatitnow

@nannette and @windwalker....Nan, did you have silent acid reflux or heartburn? I have no heartburn. The only thing I have is some clearing of my throat and maybe a little extra saliva/acid coming to my throat sometimes...I didn't know if that was due to bronchiectasis or not, because this is all new to me.

@windwalker....how long did it take for your symptoms to clear? Were you put on medicine for acid reflux or just diet change? Did you have a scope done again, or how did you know yours cleared? Thank you!

I have been doing some researching...and some firm thoughts are that PPI's don't work on people with silent acid reflux. Thanks for your replies in advance. Amy

Jump to this post

<br><br><br><br><br>Hi Amy. I only took the PPI for several weeks and the burning in my <br>esophagus went away. I still take some from time to time for stomach issues, but <br>not very often. That was several years ago. I have not been re-scoped since <br>then. I had a swallow test and a 24 hr acid level test done last Dec. Not <br>totally sure if they can tell from those tests or not. Those tests were part of <br>the pre-qual transplant panal. I feel like my GERD is gone or minimal, but don't <br>know that for a fact it is gone.<br> <br><br>

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