(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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@megan123, Jennifer, question: how did you get diagnosed with MAC? Make SURE your referral to an Infectious Disease doctor is ALSO treating OTHER MAC patients so they know what the heck they are talking about!? ASK them: How many MAC patients have you treated in the past 12 months?! Sorry to be so tough but YOU have to be your own best advocate now in this situation! If you have indeed lost 1/3 of your lung capacity .. YOU have to be your OWN best advocate at this point .. nobody is going to do it for you. Read through the past pages of our Forum ..I promise you .. you will end up knowing more about our shared MAC disease than MANY doctors know! Then do your “due diligence” .. write our a list of questions to ask this new Infectious Disease doctor.

Note what Member @steve1948, said: NEBULIZER WITH ALBUTEROL My doctor prescribed “Sodium Chloride” (which amounts to nothing but a salt solution) to add to my Abuterol in the nebulizer. It definitely makes one cough, and helps a productive sputum for me, not as much as I’d like but every little bit is a blessing. Might you ask your current doctor for this? Definitely the Albuterol would open your airways.

Don’t know if this would help you .. but I found this:
Canadian Citizen
As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq

Jennifer, I do hope some of the above might help you .. know that I am thinking of you .. PLEASE keep us posted! Sending you a hug in this tough time! Katherine

REPLY
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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thank you everyone for the useful info on all the ways to get sputum… I agree with the other member that the cough with pseudemonas is very different from the MAC cough – it is much more “violent”, hurts the ribs, and really productive. I could cough up a good one quarter cup of stuff in 15 minutes – color was off white, gray maybe a bit greenish, but mostly grey – and very thick and mucousy… much worse when I first lay down to sleep and would cough violently. It was my GP doctor who ordered the test as my pulmonologist, even though I told him about how much I was coughing, never thought to order the test. So if anyone out there with MAC is still coughing a lot, it can not hurt to have your sputum tested for pseudemonas, just to rule it out. The drug really targets it and it did clear up within 3 weeks. Thank you Katherine for the info on harmonica therapy! Pamela

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Hi Katherine, thanks for your input. I don’t understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I’ll just stick to the bottled water. Thanks, Gina

REPLY
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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Hi there.  Diagnosed thru bronchioscopy.  Pulmonary Dr has made no referral to infect…Dr, so I will for a second opinion.  Tk u for your help Katherine.  I am scared about all this.  Your system is better in states. Wait lists for specialists is crazy.
 Just wondering if I can afford Mayo ….hopefully it’s reasonable❤️

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@ginak

Hi Katherine, thanks for your input. I don’t understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I’ll just stick to the bottled water. Thanks, Gina

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@ginak, Gina, I know what you mean about hard to understand .. but myself .. I decided that I would just leave it to the experts knowing those darn mycobacterium are nasty little critters anyway so there are probably going to be a lot of things about it I may not understand fully! Hugs! Katherine

REPLY
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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@megan123, Jennifer, I KNOW it is such a scary time .. we ALL have walked this walk before .. that is why we are all here for you. Here are two options .. either one is EXCELLENT .. whichever one you can get into first/easiest .. you go Girl! Just get started .. do your due diligence .. NO one cares about your body as much as YOU DO .. take good care of it so IT can take good care of you for the rest of your lifetime!

A WORD FROM MEMBER @windwalker Terri I will be going out on a limb here by saying this, but I feel compelled to. I have lost precious lung function over the years by seeing ‘the best pulmonologists in the city’, of any city I have lived in. This is lost lung function I will never regain. I have found that many drs (with great references) are not really staying current, nor have the time for delving into specifics. Lungs are the most delicate organs you have, I would not trust them to just anybody. Only go to highly reputable medical centers that are cutting edge. i.e. Mayo, NIH, JNH, John Hopkins, to name a few on the east coast. – I sincerely hope I did not offend anybody. I know there are good drs out there, but they are hit or miss in the ‘for profit’ segment.
This said Jennifer .. GO FOR IT!! Below are two GREAT options! Print it out and DO IT! Good luck!

1. MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
* Minnesota campus for an appointment, here’s the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.

For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s

*FROM COLLEEN: There are few clinics that run at capacity at one Mayo location but perhaps not another. For example the Pain Rehab Clinic isn’t accepting new patient in Rochester at the moment but they are in Arizona and Florida. As you can imagine, the capacity is constantly changing therefore I can’t say for sure when which clinic is at capacity. I would tell members that if they can’t get in at one location that they ask about getting in to another location. And yes, persistence may pay off.

*MEDICARE: Mayo Clinic accepts new Medicare patients. Mayo Clinic is one of the largest Medicare providers in the country. Unfortunately, we can’t honor all requests we receive from Medicare patients who want to come to Mayo Clinic. We accept Medicare patients in all parts of our practice where we have the capacity to accommodate them and most importantly, as the medical needs of these patients require. Again, I would tell members that if they can’t get in at one location that they ask about getting in to another location. And yes, persistence may pay off. MAYO .. AND MEDICARE https://connect.mayoclinic.org/discussion/medicare-and-mayo/

MAYO CONTACT INFO ..NON PROFIT PRICING STRUCTURE
If you seek help at non-profit institutions like the Mayo or John Hopkins, to name a few; their price structure is lower than the for profit medical institutions. Sometimes they will work will you on payment. They will price out the services before you receive them if you ask. I know that people come from all over the world to go to the Mayo. They have a special dept that handles that.

*From Colleen: Here is information about Mayo Clinic’s Billing and Insurance http://www.mayoclinic.org/patient-visitor-guide/billing-insurance which includes information about Charitable Care and Financial Assistance at Mayo Clinic http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

2.
JEWISH NATIONAL HEALTH
https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don’t be afraid to call them and ask that question; they are extremely kind and professional. You will have an excellent experience.

Jennifer, I hope the above helps .. keep us posted .. we have all been on this same MAC journey! Hugs to you at this tough time! Katherine

Liked by wgibbs11

REPLY
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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Tks for all the support.  U guys r amazing.  I’m very scared about all this.  Need to tell my children still.  They r in there late 20’s.  It all seems like a bad dream, but I know what I have to do❤️

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Hi all, I met with Dr. Leventhal MAYO in Jacksonville, on Thursday and after a day of testing to find out the reason for the pain when I breathe on my left lung, the news was positive. He is a great doc. Sraight forward, sense of humor and helps you feel everything will be okay. He spends whatever time you need to spend to get all your questions answered. This is the second time I meet with him. The doc told me it was an infection flare up and because of the location of my broncheictasis and NTM on my left lung, the flare up was most likely causing the pain. He also gave me some good news: my PFT test results showed a slight improvement from the one in May. MAC is dormant. Will have to wait for the sputum results. He doesn’t expect to find anything but MAC. If I can stay at the level I am at now, he doesn’t for see putting me on the MAC treatment. He told me to keep doing what I am doing regarding preventative measures. If everything can stay the same, I don’t have to see him for another year. Fingers crossed this is the case. He told me walking is a must to continue to increase lung strength and function.
On a not so positive note, my blood work is showing my MPV levels are high and when I went back and checked my previous bloodwork the MPV levels have been increasing for the past six months. The past three months the results have spiked considerably. Do any of you had high MPV blood platelet levels in the past or currently? The doctor didn’t get to see the blood work before we met so we didn’t discuss. I am thankful overall for the results and hopefully the doxi antibiotic will take care of this recent flare up. Rosie

REPLY
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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@megan123, Jennifer, remember the mantra “Put my energy into what I can control .. and let go of what I CANNOT control .. the outcome.”. That means for you right now Jennifer .. putting your energy into getting an appointment with the best medical care you possible can .. collecting all the medical records you need (this is VERY important so no extra testing is done plus a good history is established) .. THEN letting go of the outcome .. for it truly IS out of your control. We are all behind you in this our shared journey .. ask any questions that may come up .. keep in mind it truly is NOT a bad dream. When I was diagnosed a very wise lady told me:

“If we all put our troubles in a great big circle .. more than likely EACH OF US would take back OUR OWN troubles!”

Jennifer, my husband and I remind ourselves .. we have NOT lost a child .. we have NOT lost a grandchild .. now THAT would be a TROUBLE. YES, WE WOULD take back our OWN troubles .. including my MAC diagnosis! Just give that wise woman’s story some thought .. I did and it gave me comfort. Hugs to you! Katherine

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Dear All, I don’t think he would mind so I am going to repeat a post from @steve1948, regarding a good way to cough when it begins to be a really HARD cough .. @steve1948 has COPD so has learned how to handle this well! Hope it helps someone! Hugs! Katherine

His post: I have fractured 5 ribs from my violent coughing. I used a pillow where it hurt and braced myself against something solid to try and keep the pressure from pushing on the ribs. Excruciating pain when I coughed. Now the is important to note, a therapist told me to keep my mouth as wide open as possible when I cough which takes a good portion of the pressure off the torso (rib cage). It can be unsightly and sometimes my sputum projects so I just keep tissues with me and hold it in front of my mouth, NOT against it. I haven’t fractured any more ribs since then. That was invaluable information for me as I cough consistently and sometimes quite violently. Doctor’s told me it can take many months for the ribs to heal and there isn’t any treatment for such an injury. They don’t wrap you anymore because of the chance of pneumonia.

REPLY
@ginak

Hi Katherine, thanks for your input. I don’t understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I’ll just stick to the bottled water. Thanks, Gina

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@katemn; While in the mist of 3-antibotic medication, doc told me there is no guarantee I won’t get those nasty mycobacterium critters again. However by the time I’m finished my sprint of those pills, he said I won’t need to collect sputum after I’m through as I’ve already them. Thankfully the last sputum test, mine haven’t grown and I’m glad more specimens are not required. I wanted to ask – did anyone suffer recurrence of MAC? Thanks/Tessie

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@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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Hi Pam, I have copd and IPF cough violently and all day. My doc’s tell me I shouldn’t be coughing like that with my condition. So I ran across the MAC posts and did some research on it. It said it takes 15 to 18 months on three types of meds to cure the MAC although a few weeks to a few months the patient could see results. They said that the patient needs to show no MAC in the sputum samples for 12 months before they consider it cured. They emphasized not to shorten the medication time because if it comes back it becomes somewhat a super bug, and takes the same treatment with additional medication. The side effects of the medication don’t sound pleasant, did you experience any? I’ve brought the MAC subject to the attention of my doc at the Cleveland Clinic, and we”ll see where that goes. Thanks for the info.

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Hello all, I am very curious & I’m wondering if any of you know if you can get repeated MAC infections after treating it??! What are ways to avoid getting MAC again? I read about the water faucet issues on this forum which I’ve never heard or read about elsewhere! I’m learning SO much by reading everybody’s posts! I’m so grateful for being a part of this forum!!! ~Jen

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@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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Hi Katherine. I have used the Aerobika for years now and the top”+” is too strong for me. I use #2. So you may be right that the product should be bought thru the website. It may be more expensive but they seem to hold up very well. I have also spoken with the company when they first came out and they couldnt have been nicer.

On another note just got back from Mayo Florida. Had alot of testing. I return in March for a bronchoscopy. They need to sample a nodule that may be the return of NTM or something else. I was prescribed oxygen when needed and now have to nebulize twice daily with saline/aberterol. That is all for now until after bronchoscopy.
I was so pleased with Mayo- doctors, nurses, receptionists. Should have gone there sooner. Have a great day, y’all!

REPLY
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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Greetings all!
Maryjo’s post brought up a question for me. I have been on nebulizer 7 months. I do albuterol and budesonide meds with it. but it’s getting very tiresome. Does anyone know if a portable inhaler of those drugs would be as effective for my bronchiectasis as the nebulizer is?
Thanks and blessings,
David

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