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.

imeehaigt | @imeehaigt | 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

@margaretg Welcome to the group! Katherine is correct it helps a lot if you read the previous post and articles posted here in the forum. It is very important that you educate yourself about this disease since not all the doctors are knowledgeble about treatment of NTM. Take your medicine diligently and make sure to take pre biotics like yogurt since you are taking antibiotics. We are lucky to found this support group. Cheer up!

REPLY
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)
@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

Mucinex will only work if you have mucous. If you don't it doesn't do anything. You can cough and cough, but if you don't have mucous it will not work. You can take it more than once a day. It is a good product. My husband uses it everyday as it was recommended for him by his doctor.  He has Sarcoid. I have MAC! We actually just bought some today. Irene 

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

Imee, I use a strong Musinex type medication that I got from a doctor in Switzerland .. and it REALLY helps liquefy the sputum .. which then allows me to cough it up more easily. I am NOT doctor .. but I know my medication is a prescription so is stronger than any over the counter Musinex. BUT as I ALWAYS tell my two granddaughters .. get to know a FEMALE pharmacist at your pharmacy of choice. WHY? For this VERY reason! Because I would be MUCH more comfortable if you asked a medically knowledgeable person the question you asked me. WHY? Because what worked for me .. may NOT work for you! WHY? Because I just googled .. and found:

Side-effects of guaifenesin (Musinex) include nausea, vomiting, formation of kidney stones, diarrhea, and constipation. Nausea and vomiting can be reduced by taking guaifenesin with meals. The risk of forming kidney stones during prolonged use can be reduced by maintaining good hydration and increasing the pH of urine. Rarely, severe allergic reactions may occur, including a rash or swelling of the lips or face, which may require urgent medical assistance. Mild dry mouth or chapped lips may also occur when taking this medication. Drinking a glass of water is recommended each time one takes guaifenesin.

Now obviously we all know we do not ALL get various side effect but that is why I suggest you consult a pharmacist regarding your use of Mucinex. Hope this helps you! Hugs to you! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | 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

Hello Margaret! So glad you are coming back! If you read back pages .. you will see the importance of probiotics DAILY!! On past posts I have indicated various ones I have taken .. main thing is to take a GOOD one with the most billions daily. Good luck and hugs! Katherine

REPLY
Lisa Y | @tutti | 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.

Jump to this post

I use an Aerobika. My pulmonary dr prescribed it to help clear my lungs. I do 20 breaths in the morning and 20 in the evening. It does help a little. It's no miracle but I use it as I figure it helps somewhat. I think it works better than the acapella. I hope it works for you. <br>Hugs to you too! Tutti  ( Lisa )<br>

REPLY
Lisa Y | @tutti | Nov 20, 2016
In reply to @justjanet "Hi Katherine and all, I don't know if I'm a great one to talk about the..." + (show)
@justjanet

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

Jump to this post

Hi All,<br>My respiratory therapist said the Aerobika has to be used faithfully for 3 weeks before you notice results.<br>Tutti ( Lisa )<br><br>

REPLY
Katherine, Alumni Mentor | @katemn | 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.

Jump to this post

Hi Lisa, I REALLY appreciate your letting me know your experience with the Aerobika because I have really been debating it. Because I seem to do a good job of clearing my lungs with my 2 inhalers am and pm .. I am REALLY contemplating more research and then giving a try to the Expand-A-Lung Breathing Fitness Exerciser because I think right now my bigger issue is lung health ie increasing my lung capacity. And since this product is used a lot by athletes and well reviewed by them .. hmm maybe worth a shot for me. Will definitely update after giving the Exerciser a shot.

It helps that you let me know the Aerobika worked better for you than the Acapella .. that one didn't help me at all .. and that the Aerobika just helps a little. Thanks a heap! Hugs to you! Katherine

REPLY
Lisa Y | @tutti | 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.

Jump to this post

I'm very interested on how the Expand-a-lung fitness exerciser works for you. Good luck with it.<br>Lisa<br>

REPLY
JanetJ | @justjanet | Nov 20, 2016

Katherine, I bought my Aerobika on Amazon but I just looked out there now and it's showing as not available at this time. I've never tried the Acapella so I'm no help there. As for the home remodel? LOTS of fun. But like a vacation - I'll be glad to get home when it's over. 🙂 Hugs back, Janet

REPLY
JanetJ | @justjanet | Nov 20, 2016

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

REPLY
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