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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 11, 2018
In reply to @tdrell "@windwalker ......Terri...hopefully you never got a cold from the neighbor kids so are in tip top..." + (show)
@tdrell

@windwalker ......Terri...hopefully you never got a cold from the neighbor kids so are in tip top shape to evacuate!! As you no doubt know take plenty of cash, medical supplies .batteries and water with. Hopefully have a place to stay....sending the white light for safety ,health and a quick return! Tdrell terri

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@tdrell Still have the cold, darn it. I think the hurricane is going to bypass us. They lifted the mandatory evacuation. I am still headed to Florida on Thurs to see the pre-screening of the PBS Mayo movie.

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1 reply
beverly1945 | @beverly1945 | Sep 11, 2018
In reply to @windwalker "@tdrell Still have the cold, darn it. I think the hurricane is going to bypass us...." + (show)
@windwalker

@tdrell Still have the cold, darn it. I think the hurricane is going to bypass us. They lifted the mandatory evacuation. I am still headed to Florida on Thurs to see the pre-screening of the PBS Mayo movie.

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@windwalker Hi you mentioned a movie in Florida about PBS Mayo movie curious where and what is that about ?

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526laura | @526laura | Sep 12, 2018
In reply to @windwalker "@526laura Hi Laura. If you click on your picture or name, it should take you to..." + (show)
@windwalker

@526laura Hi Laura. If you click on your picture or name, it should take you to your account. There, you should see a list of options. Click on the 'notifications' option and that will bring up the list of posts. Another way is to tap on 'view and respond' button, then scroll to the top of the page nd you will see numbered blocks with the last one saying 'last'. Click on that one and it will show the last thread. Then click on the numbered ones as you want to go back in that order.

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That was very helpful
Thanks

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beverly1945 | @beverly1945 | Sep 12, 2018
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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@debbiec hi just read your posting I also live in Florida in Boynton Beach and recently diagnosed where do you live ? I’m not on any meds I feel fine but nervous about what I have and if and when I cough let me know where you live and do you go to support group I heard about in Ft Lauderdale ?

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marilyns | @marilyns | Sep 13, 2018

I’m new to this diagnosis, too, and have little in the way of symptoms so far. I’m a little edgy, not knowing what to expect and seeing how difficult it might get. I hope to learn a lot in this group and look forward to,encouraging posts.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 16, 2018
In reply to @windwalker "Thank you @pattriciaann!" + (show)
@windwalker

Thank you @pattriciaann!

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Well, I've been gone for a few weeks with family & house guests, but I wanted to report that last Tuesday my husband finally got the diagnosis for his 6-month-old worsening cough from our pulmonologist - he ALSO has bronchiectasis (just a little at this point, and no scarring or white pockets indicating a long-term infection with MAC), and something else the doc calls "shadowing" in the lower lobes of both lungs. This comes just 3 months after my diagnosis. Doc is pretty sure both are the result of the rheumatoid arthritis he has had for over 30 years. Based on preliminary results on his sputum cultures, it also appears he has MAC but not pseudomonas. Doc is waiting for second result as confirmation before beginning treatment. So, this guy has been in practice for 27 years and says this is only the second time he has had both spouses with the same diagnosis!
On a happier note, I have been taking the "big 3" for over a month now, and am doing Okay as long as I use a daily probiotic, eat a light, somewhat bland and starchy meal before taking my meds, take each tablet with a bite of yogurt, and follow with a ginger ale cocktail (real ginger ale/beer with the chunks of ginger in it.) Skip any one of these, and I'm up sick in the night and feel awful the next day! By forcing myself to eat (have no appetite) I have managed to stabilize my weight after initially losing several pounds the first week. I use my Acapella every day, and my husband has started as well, but I'm going to ask the doc about saline nebs for us.
We use a Pari Vios neb, and it takes 12-14 min for 4ml session.

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 16, 2018

Looking for a nebulizer recommendation. My husband & I both use it.
We currently have a Pari Vios neb at home, and a Devilbiss Traveler battery-operated neb for travel. Both require separate tubing, mouthpieces, etc and are really not very handy. I was wondering what experience anyone has with the ultrasonic type. Ours deliver a 3-4ml dose in 12-14 min for the tabletop model and about 20 min for the battery unit, and I'm not really interested in anything slower. Is there somewhere I can go to find reliable reviews of nebulizers?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 16, 2018
In reply to @sueinmn "Looking for a nebulizer recommendation. My husband & I both use it. We currently have a..." + (show)
@sueinmn

Looking for a nebulizer recommendation. My husband & I both use it.
We currently have a Pari Vios neb at home, and a Devilbiss Traveler battery-operated neb for travel. Both require separate tubing, mouthpieces, etc and are really not very handy. I was wondering what experience anyone has with the ultrasonic type. Ours deliver a 3-4ml dose in 12-14 min for the tabletop model and about 20 min for the battery unit, and I'm not really interested in anything slower. Is there somewhere I can go to find reliable reviews of nebulizers?

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@sueinmn Hi there! Another member said she likes the E-pari model. Said it has faster delivery.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 16, 2018
In reply to @sueinmn "Well, I've been gone for a few weeks with family & house guests, but I wanted..." + (show)
@sueinmn

Well, I've been gone for a few weeks with family & house guests, but I wanted to report that last Tuesday my husband finally got the diagnosis for his 6-month-old worsening cough from our pulmonologist - he ALSO has bronchiectasis (just a little at this point, and no scarring or white pockets indicating a long-term infection with MAC), and something else the doc calls "shadowing" in the lower lobes of both lungs. This comes just 3 months after my diagnosis. Doc is pretty sure both are the result of the rheumatoid arthritis he has had for over 30 years. Based on preliminary results on his sputum cultures, it also appears he has MAC but not pseudomonas. Doc is waiting for second result as confirmation before beginning treatment. So, this guy has been in practice for 27 years and says this is only the second time he has had both spouses with the same diagnosis!
On a happier note, I have been taking the "big 3" for over a month now, and am doing Okay as long as I use a daily probiotic, eat a light, somewhat bland and starchy meal before taking my meds, take each tablet with a bite of yogurt, and follow with a ginger ale cocktail (real ginger ale/beer with the chunks of ginger in it.) Skip any one of these, and I'm up sick in the night and feel awful the next day! By forcing myself to eat (have no appetite) I have managed to stabilize my weight after initially losing several pounds the first week. I use my Acapella every day, and my husband has started as well, but I'm going to ask the doc about saline nebs for us.
We use a Pari Vios neb, and it takes 12-14 min for 4ml session.

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@sueinmn Hi Sue. It sounds like you are taking all the right steps to take care of yourself. Good job!

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