(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.

Katherine, Alumni Mentor | @katemn | Nov 17, 2016

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

Hello Imee, I also hope someone will hop on and tell us their experience with the Aeobika! I would like to give it a try for my Bronchiectasis .. BUT at $90. I would like to hear others experience first! $90 was the best price I found on the internet at:
http://www.saveritemedical.com/product/monaghan-medical-aerobika-oscillating-positive-expiratory-pressure-therapy-system.html
.. it appeared they were going to allow me to check out with PayPal .. so I must not need a prescription.

SO HELLO .. anyone use this device and happy with it .. tell us your experience! We are a sharing community so share! Hugs to all! Katherine

UPDATE: I googled the above .. saw reviews on Amazon..com that compared it pretty much to the Acapella which I have tried .. and for me did not do much. So for me I am going to give another device that I accidentally saw on that page:
https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I/ref=cm_cd_al_qh_dp_t
It got good reviews .. and at $30 I am more willing to give it a shot with such good reviews. After the holidays when I get more time I will get it .. and let people know if It helped me at all. Hugs! Katherine

heathert | @heathert | Nov 17, 2016

Hi all
just read interesting article from sept 2016 re new antibiotics. There seems to be alot going on in the antibiotic world, however MAC/MAI wasnt even mentioned, so I have written a comment at the bottom which has to be approved before its published, hopefully it will be published. Here is the link http://cen.acs.org/articles/94/i35/Antibiotics-bugs-always-win.html .

We need to get one of the companies mentioned to do trials specifically for MAC and TB . We should try writing to them, I am going to give it a go, worth a try. What do you think? Good to know lots is going on in the antibiotic world tho.

Katherine, Alumni Mentor | @katemn | Nov 17, 2016

Heather, Good job! Katherine

heathert | @heathert | Nov 17, 2016

In reply to @katemn "Dear All! @apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David,..." + (show)

Thanks Katherine, I really appreciate your support and encouragement so much,haven't had much luck with the aerobika yet (havnt tried much tho) I will let you know if I get it to work well. DIE CRITTERS DIE!!!!!!!!!!!!!!!!

Katherine, Alumni Mentor | @katemn | Nov 18, 2016

In reply to @katemn "Dear All! @apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David,..." + (show)

Heather, love that "DIE CRITTERS DIE!" .. AMEN to that!! Let me know about that Aerobika .. but I think I am going to try that Expand-A-Lung Breathing Fitness Exerciser next week when I get time to order it .. will update after I've tried it etc! Just found out via a breast CT scan that I have some Atelectasis in my left lung .. I googled it and found it is essentially a partial collapse of a lobe of a lung. Hmmm .. am hoping some breathing exercises may help. Haven't had time to read all the Amazon reviews .. but a lot of athletes use it to increase lung capacity. Am going to do further research after Thanksgiving holiday .. too much going on right now! Hugs! Katherine

JanetJ | @justjanet | Nov 18, 2016

Hi Katherine and all,
I don't know if I'm a great one to talk about the Aerobika but here goes. I started using it a couple months ago. My pulm. Dr told me to get one and I did and followed the YouTube instructions on how to use it. I was supposed to use it twice a day but (making excuses here) with some traveling and putting one house on the market and remodeling the new one I haven't been the best. I have a mild case of Bronch and Mac and I don't always cough and I never cough up anything. The only change I have noticed so far is when I lay down on my back I don't have a coughing fit like I use to. At my appt this week I met with a respiratory therapist to show her how I was using it and she corrected some things. I'll see if that makes further improvements along with using it regularly. Since I don't have a serious case I may not be the best person to make a recommendation. I will see how it goes over the next three months. I'm having a CT scan at that point and will hopefully see if there's been any changes for the better. I'll let you know.
Janet

margaretg | @margaretg | Nov 18, 2016

In reply to @katemn "@margaretg Hello Margaret, Welcome! I am SO glad you found our Forum! I hope you don’t..." + (show)

@katemn

@margaretg

Hello Margaret, Welcome! I am SO glad you found our Forum! I hope you don’t mind if I answer you on our Forum page rather than a private message .. because we have found that sharing with each other really HELPS each other!

I SO understand the fear when you are first diagnosed with MAC and that you must go on the antibiotics. When I was first diagnosed I was just terrified .. in part because I found ZERO places like this Forum to help me through the process of understanding the disease I had just been diagnosed with .. plus just what the journey ahead looked like. That was really why I made that initial post to Mayo in 2011.

Margaret, I really encourage you .. as you have the time and energy to read the past pages of this Forum .. you will learn SO much about your disease .. plus your journey ahead. Plus you will find so many kind positive people here who are sharing your journey right now .. some ahead .. some finished .. but we are all on the same journey! I would especially encourage you to read an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
PLUS MORE GOOD INFO: http://maclungdisease.org/frequently-asked-questions

Since you have not started your meds yet .. I would recommend that you request that you start ONE antibiotic at a time for ONE WEEK .. or at LEAST 4 days before adding a second antibiotic .. so you can tell EXACTLY which/what antibiotic is causing ANY potential side effect and you can isolate it .. hopefully watching for a side effect dwindling etc. THEN introduce a SECOND antibiotic. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it! Plus .. has your doctor told you to get the below baseline testing? If you read back you will see them .. but I will repeat them in case you don’t get to the reading right away:
RECOMMENDED TESTING:
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

So Margaret .. again Welcome .. and keep coming back! Sending you a Hug in this tough time .. we all know what you are going through! Katherine

Jump to this post

Dear Kate,Thank you for your response. I really appreciate that. Today is the first day I took the medicines. I feel encouraged by you.I will continue to join the forum to communicate with and learn you and other members.By the way, I am living in Connecticut.Warmest Regards,MargaretYou

Katherine, Alumni Mentor | @katemn | Nov 18, 2016

Janet, thank you SO much for this really good info on the Aerobika! Especially the fact there is a YouTube video on it .. of course .. why didn't I think of that! I have actually found out you can darn near find out ANYTHING on YouTube! It is fascinating! Also that it helps to have instructions for corrections after a time of usage from a respiratory therapists .. a really good idea that I hadn't thought of! For those of us with more of a case of Bronchiectasis who bring up a fair amount of sputum .. this might be a possibility so thanks again for the review! Question: have you ever used an Acapella .. AND how would you compare the two of them? Just curious. Good luck on the home remodel .. quite a bit of a job .. but fun? Hugs to you! Katherine

imeehaigt | @imeehaigt | Nov 18, 2016

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

Katherine I tried the mucinex and looks like its better than fluimicil. Im taking it 2x a day. My doctor recommended that I should take the fluimicil everyday but looks like this is not effective for me. Is it save for me to take the mucinex everyday as long as I have a sputum phleghm? Anyway I now do breathing excercise and before I go to bed and also while im in front of my PC at work. I also make sure bring out phlegm and it helps I usually feel tightness in my chest and now I can breath easily. Thanks again!

irene5 Irene Estes | @irene5 | Nov 18, 2016

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

Mucinex is extremely safe and can be taken every day. Irene

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