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.

Katherine, Alumni Mentor | @katemn | Nov 20, 2016
In reply to @justjanet "Hi Everyone, I just wanted you to know there is a clinic at UNC (University of..." + (show)
@justjanet

Hi Everyone,
I just wanted you to know there is a clinic at UNC (University of NC) called the UNC Center for Bronchiectasis Care. For those of you that have Bronch. and an NTM and are looking for Drs. knowledgeable in this field this might be a resource. I know how few and far between these clinics are across the US. They don't just treat Bronch., they treat any NTM you may have. I've been there twice. I wanted to wait until I'd gone a couple times before I said anything. Both experiences were very good. I found my doctor to be very knowledgeable, she took the time to explain her game plan, why she was doing it that way and asked me if I was comfortable with doing it that way. She spent quite a bit of time with me each visit going over test results, answering questions. I also found the staff to be just as helpful and willing to spend time going over everything. The respiratory therapist gave me her card and told me a couple ways to get a hold of her if I had further questions after I left. Nice! Overall very, very nice. Much better than my experience at Duke. They are located in Chapel Hill, NC. Let me know if you have any questions. Janet

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Janet, that is great information for those in that area of the country .. thanks for the resource! .. and happy you finally found It for yourself! Hugs! Katherine

REPLY
cowboy1997 | @cowboy1997 | Nov 20, 2016
In reply to @imeehaigt "Katherine, I dont have cataract. Anyway I just watch the video of National Jewish about NTM..." + (show)
@imeehaigt

Katherine, I dont have cataract.
Anyway I just watch the video of National Jewish about NTM and Bronchaectasis indeed it is verg helpfull and informative. I learned the importance of airways clearance. Anyone who used Aeobika? Pls let me know if this device ia effective. Im not sure if this is available here in the philippines but Im planning to buy one.

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Where can you get the Expand a Lung Exercise?

REPLY
Katherine, Alumni Mentor | @katemn | Nov 21, 2016
In reply to @imeehaigt "Katherine, I dont have cataract. Anyway I just watch the video of National Jewish about NTM..." + (show)
@imeehaigt

Katherine, I dont have cataract.
Anyway I just watch the video of National Jewish about NTM and Bronchaectasis indeed it is verg helpfull and informative. I learned the importance of airways clearance. Anyone who used Aeobika? Pls let me know if this device ia effective. Im not sure if this is available here in the philippines but Im planning to buy one.

Jump to this post

Hi Cowboy, read the reviews .. I haven't had time yet .. packing to spend time with family over the holidays .. but I plan to buy it at:
https://smile.amazon.com/gp/product/B00JWTRA5I/ref=ox_sc_act_title_5?ie=UTF8&psc=1&smid=A35MWDCY6SWWSF
for $30. If you get and use It .. please let me know what you think after a couple of months of use. I'm sure it would take that long to get any benefit. Happy Holiday! Katherine

REPLY
judyem | @judyem | Nov 21, 2016

I just got diagnosed with MAI and started the antibiotic treatment. Just wondering how you are doing..
Thanks.

REPLY
2 replies
Kay Strand | @kaystrand | Nov 21, 2016
In reply to @judyem "I just got diagnosed with MAI and started the antibiotic treatment. Just wondering how you are..." + (show)
@judyem

I just got diagnosed with MAI and started the antibiotic treatment. Just wondering how you are doing..
Thanks.

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I have good days and bad days, nausea is my main problem. I don't have a good appetite either. I go back to Mayo in January, 4 months on meds and I had a clear sputum culture though. Trying to stay positive and busy.......
Kay S

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judyem | @judyem | Nov 21, 2016

Thanks Kay. I am glad you had a clear sputum culture. That is fantastic.. something I hope for as well. So glad you are able to stay positive. Being busy helps.
Do you use the vibrational vest to help clear your lungs?

Have a great Thanksgiving...
Judy M

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Katherine, Alumni Mentor | @katemn | Nov 21, 2016

Hello Judy, Welcome to our Forum! For me I tried the vest but for whatever reason it just didn't help me a bit in bringing up the sputum. Everyone is different .. our bodies are different .. our disease is at a different stage.

For me .. I take a type of medication I got in Switzerland (not available in the USA) that helps liquefy the sputum/mucus so it makes it easier for me to cough it up. My doctor at Mayo Clinic is aware I am taking it .. ALWAYS tell your doctor of any med or herb you are taking! Each of us must find what is best for our bodies .. sometimes it is by trial and error! Hope you also have a great Holiday .. sending you a hug! Keep coming back! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 21, 2016
In reply to @judyem "I just got diagnosed with MAI and started the antibiotic treatment. Just wondering how you are..." + (show)
@judyem

I just got diagnosed with MAI and started the antibiotic treatment. Just wondering how you are doing..
Thanks.

Jump to this post

Hello Kay, that nausea is REALLY tough .. yuck. Has it done ANY good to try different times of day for the different meds? .. or with or without food? I know I really had to do some fine tuning to figure out which one/when. If that doesn't do it .. REALLY discuss it with the doctor because you should be able to isolate WHICH med seems to be the worst .. especially if you do the experimenting with timing?

Also in terms of appetite .. I lost 18% of my body weight so I decided it was more important to just get some calories in than to worry temporarily about anything else so I'll tell you a secret! I ate bacon for breakfast every morning and about 1/5 a gallon of DELICIOUS ice cream every night! I also drank ice cold Ensure during the day. I'm not recommending it to anyone else but it did help me over the hump. Fact is .. as I got better it was REALLY tough giving up that darn ice cream .. had to ban it from the house!

Hope the above helps in this tough time .. so sorry it is happening for you. I promise you .. it WILL get better .. just hang in there Kid .. we are all rooting for you! Sending you a Big Hug! Kathering

REPLY
cowboy1997 | @cowboy1997 | Nov 22, 2016
In reply to @imeehaigt "Katherine, I dont have cataract. Anyway I just watch the video of National Jewish about NTM..." + (show)
@imeehaigt

Katherine, I dont have cataract.
Anyway I just watch the video of National Jewish about NTM and Bronchaectasis indeed it is verg helpfull and informative. I learned the importance of airways clearance. Anyone who used Aeobika? Pls let me know if this device ia effective. Im not sure if this is available here in the philippines but Im planning to buy one.

Jump to this post

Musinex D helps w my decongestant but not sure about cough because cough is result of Reflux!

REPLY
Katherine, Alumni Mentor | @katemn | Nov 22, 2016
In reply to @imeehaigt "Katherine, I dont have cataract. Anyway I just watch the video of National Jewish about NTM..." + (show)
@imeehaigt

Katherine, I dont have cataract.
Anyway I just watch the video of National Jewish about NTM and Bronchaectasis indeed it is verg helpfull and informative. I learned the importance of airways clearance. Anyone who used Aeobika? Pls let me know if this device ia effective. Im not sure if this is available here in the philippines but Im planning to buy one.

Jump to this post

Cowboy, If I was you I would NOT use the Musinex D .. ONLY the plain Musinex .. since our purpose is to help with the mucus .. not the cough. Just my opinion. Happy Holidays! Katherie

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