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 | Nov 23, 2018
In reply to @america "Thanks so much! I’m on the way to the urgent care. I have an appointment tomorrow..." + (show)
@america

Thanks so much! I’m on the way to the urgent care. I have an appointment tomorrow but I can’t wait. Thanks so much Rita

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@america Hi Rita. Keep me posted.....feel better!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 23, 2018
In reply to @america "Hey goood morning guys, I hope everyone had a great thanksgiving. I’m so sorry to ask..." + (show)
@america

Hey goood morning guys, I hope everyone had a great thanksgiving. I’m so sorry to ask for help but I am so sick. I have a sore throat for more than a week now and I have tried anything that I read and heard. But I don’t know what do do. I cannot eat now and when I drink it hurts like really bad. I have Sjogrens and that caused a of dryness in my mouth and throat and only one vocal cord works. It’s bees a really rough week and I don’t know how to stop this. It causes my ears and head to also hurt. I am on Tobramycin and the nurse keeps telling me don’t stop but what do I do? Anyone any suggestions please help!!! I really appreciate it. Thanks Rita

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@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.

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2 replies
america | @america | Nov 23, 2018

Hi guys! I went to the urgent care and I did a streptococcus test and it came back negative. But I have inflammation in my throat and it’s coming from drainage. I just got word from Mayo and I will need to stop my Tobramycin 🙁 I am not a happy camper but he knows best. I will keep you all posted and thanks for all the help.

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hydrang3a | @hydrang3a | Nov 23, 2018
In reply to @windwalker "@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her...." + (show)
@windwalker

@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.

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@terrim thank you for your reply. I ordered Strepfen from New Zealand. Not made or sold in USA. Also my side effects go beyond sore throat. My upper airways are irritated & inflamed. I’ve been on daily Arikayce for two weeks. Doctors know so little about this drug since it was only marketed in October. I’m relying on info provided by Heather and others who were part of the trial. At this point they are way more informative than any doctor Ive encountered. They simply haven’t had any patients on Arikace before.

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1 reply
heathert | @heathert | Nov 23, 2018

@hydrang3a Glad to hear you have ordered the Strepfen, I hope you got a few boxes. Have you lost your voice yet?

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heathert | @heathert | Nov 23, 2018
In reply to @windwalker "@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her...." + (show)
@windwalker

@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.

Jump to this post

@windwalker yes and they also have a kind of neurofen that goes straight to the throat topically as u suck it.

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heathert | @heathert | Nov 23, 2018
In reply to @hydrang3a "@heathert ..... in addition to a sore throat and loss of voice for s few days..." + (show)
@hydrang3a

@heathert ..... in addition to a sore throat and loss of voice for s few days on the Arikace trial did you have any other side effects? My upper airways are irritated and feel raw almost like I have sharp razor blades in my lungs. I’ve been on Ariksyce now for 2 weeks. Also did you use a bronchial dialator and nebuluzr saline before each application? Thanks so much... since this drug is so new Doctors don’t have much advice or direction.

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@hydrang3a No I diddnt have those other side effects. I diddnt use anything before taking the Arikace just had a glass of water handy if I coughed. I hope things get better for you soon. Not many doctors know much about this, I had a wonderful dr who had now gone back to the UK unfortunatly. Take care

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xfirerose | @xfirerose | Nov 23, 2018
In reply to @windwalker "@xfirerose, Hi. I read up about CVID. Gosh girl, that is a rough thing to have...." + (show)
@windwalker

@xfirerose, Hi. I read up about CVID. Gosh girl, that is a rough thing to have. I would imagine having to go in for your three week dose of immunoglobins is a pain in the neck, but thank goodness you have it. I was reading about the freaky genetics of it. That it can be a hit or miss thing genetically, and sometimes have the gene but no symptoms or illness. Sounds pretty fickle to me. Are you able to also be on maintenance antibiotics to keep the lung infections (mac & pseudo) at bay?

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I tried the big 3. I did well on the azithromycin. I had vision problems on one drug. I got a bad gastrointestinal infection from the other. So my pulmonologist decided to send me to UCLA for alternative treatment. The MAC is spreading pretty fast now.

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Flib | @flib | Nov 23, 2018
In reply to @hydrang3a "@TerriM thank you for your reply. I ordered Strepfen from New Zealand. Not made or sold..." + (show)
@hydrang3a

@terrim thank you for your reply. I ordered Strepfen from New Zealand. Not made or sold in USA. Also my side effects go beyond sore throat. My upper airways are irritated & inflamed. I’ve been on daily Arikayce for two weeks. Doctors know so little about this drug since it was only marketed in October. I’m relying on info provided by Heather and others who were part of the trial. At this point they are way more informative than any doctor Ive encountered. They simply haven’t had any patients on Arikace before.

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@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for the delivery...wound up having to make trips to two different post offices, no luck and then the postman arrive again at my door and I was home. Pain in neck (being polite
however, the cough drops work. Amazon has a brand called Strephils....not as effective. I know now to order several boxes at a time to save on postage and time. Flib

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1 reply
heathert | @heathert | Nov 23, 2018
In reply to @flib "@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for..." + (show)
@flib

@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for the delivery...wound up having to make trips to two different post offices, no luck and then the postman arrive again at my door and I was home. Pain in neck (being polite
however, the cough drops work. Amazon has a brand called Strephils....not as effective. I know now to order several boxes at a time to save on postage and time. Flib

Jump to this post

@flib I am so pleased they are working for you.

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