(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.

jazzmindavis | @jazzmindavis | Oct 20, 2017

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

Jo Ann K | @jkiemen | Oct 20, 2017

In reply to @jazzmindavis "OMG I was just diagnosed in July of this year. I was terrified. I have started..." + (show)

I get pain off and on since I had the pneumonia when it was first diagnosed 2.5 years ago. I have mentioned it at my appts by it never seems to be addressed. I guess if the CT or CXR is OK they aren't concerned.

Jo Ann K

boomerexpert | @boomerexpert | Oct 20, 2017

In reply to @windwalker "@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I..." + (show)

Let me know when you're here. I live in Palm Harbor.

pamelasc | @pamelasc1 | Oct 21, 2017

In reply to @jazzmindavis "OMG I was just diagnosed in July of this year. I was terrified. I have started..." + (show)

Hello Jo Ann - this is Pam in Boston. For many years, when I am getting pneumonia, I can tell because I have pain in my right lung, just above my breast .. sometimes it even radiates up into my collar bone. If the pneumonia is really bad, the pain is sharp with every breath. No doctor has really explained this to me, but it is my "canary in the mine" that tells me I am getting sick. And when they do an xray, it shows pneumonia. Best to you, Pam

cila | @cila | Oct 21, 2017

In reply to @heathert "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..." + (show)

Hi nick52, I'm doing aspiration when I drink. They told me I have to sip a little bit of liquid instead of drinking. I have bronchiectasis. Cila.

nick52 | @nick52 | Oct 21, 2017

In reply to @jazzmindavis "OMG I was just diagnosed in July of this year. I was terrified. I have started..." + (show)

Does anyone of you had a video deglutition (check on the web) to know if you have some aspiration when you eat or when you drink that goes to your lungs. The radiologist told me the other day it was the cause of my lung disease bronchiectasis. I remember coughing

when swallowing my saliva or drinking liquid. It made sense for my case anyway. I had a real bad pneumonia where I told the doctor that I thought it was cause by aspiring what I had throw up but he ignore me. I describe the reaction to the radiologist and

he said I was right. God was I ever weak! I thought i was going to die. It happen to me twice. He say that x-ray (video deglutition) is not use much to diagnose people with pneumonia or breathing problems. It should be used more often because aspiration

can be the cause of pneumonia but it is under evaluated. I had never heard about that test for lung disease before he recommended to do that test instead of a ctscan. Dr Ublah is now going to practice in Pensylvania. I was so priviledge to talk with him.

We don’t ask enough to speak with Radiologist. We should ask more question.

nick52 | @nick52 | Oct 21, 2017

In reply to @heathert "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..." + (show)

Dear Cila

I just posted a description of what my radiologist said it was the cause of having bronchiectasis. To me it make sense what he said. It is not the MAC that cause bronchiectasis it is the condition of our lungs that makes it easier to get bacteria.

I need to meet with the orthophonist (she was present for the test) to find out about food and drinking. The radiologist said Liquid was my problem not thicker liquid or food. I need to drink thicker liquid liquid he said. I will meet her (orthophonist)

oct. 30 th .

I wish I could have more time with the radiologist. He said he will recommend an MRI because it could also be a neurologic problem. God this was all new stuff for me. Never read that anywhere. Did they have done an MRI to you to eliminate that possibility?

At lease it doesn’t have radiation in an MRI. If you wish I can keep you posted. Thanks for sharing your experience with me? Did you find out after you had a video deglutition?

tdrell | @tdrell | Oct 21, 2017

In reply to @pamelasc1 "To those with (or who have had) MAC/NTM, bronchiectasis, pseudomonas, or limited lung capacity the following..." + (show)

@pamelasc1

To those with (or who have had) MAC/NTM, bronchiectasis, pseudomonas, or limited lung capacity the following is information on:
• Flying with a portable oxygen concentrator (POC)
• Flying with a PAP device (for those who have sleep apnea)
• Using oxygen WITH the PAP machine
• Renting or purchasing a POC
• Different types of portable oxygen concentrators
• Medicare and coverage for renting or purchasing POC
• Difficulty breathing while on long ( 3 hours or more) airplane flights
• Getting a POC through airline security prior to flight
• Taking the high altitude test at the hospital, prescribed by your pulmonologist
• Effects on breathing when travelling to areas of high altitude

As someone who has had to suddenly deal recently with all of the above issues, I wanted to share with you the information I have learned over the last year. I am 68 years old and was diagnosed with MAC almost 2 years ago. I completed the 18 month regimen of the Big 3 meds in May 2017. I was diagnosed with pseudomonas during this time but this was cleared up by taking Levaquin. My coughing has almost vanished, but I have had numerous cases of pneumonia over the last 2 years and each time my lung capacity has deteriorated. To add insult to injury, I was diagnosed with sleep apnea in July 2017. I began using the PAP device in August and use it every night. I live at sea level (Boston) and when home my oxygen levels are around 93 or 94, even with brisk walking. I do get breathless when working in the garden or walking fast, but I do not have to use my rescue inhaler in most instances.
I have been travelling to Idaho for many years where the elevation is almost 6000 feet. For many years I have also been travelling back and forth from Boston to California (6 hour flight) with no issues. In the last two flights I took, using my oximeter, I could see that after one hour in flight when the plane hit 30,000 feet, my oxygen fell into the 70s and low 80s – not good! My pulmonologist then advised me to use a portable oxygen concentrator when I take long flights, so I now take that whenever I fly.

PLEASE NOTE: I took the high altitude test at the hospital and passed it with flying colors. Clearly, if one passes the test, it is not necessarily an indicator that one will NOT have problems flying, or being in high altitudes. When I took a short 45 minute flight of 28,000 feet, my oxygen levels were fine. This for me indicates that the length of time one is in a plane can make a big difference.

I had never had any problems with being at high elevations until the last year. Once I arrive now, my oxygen levels fall into the 80s and the first few days I get breathless with little exertion. I can breathe, but whenever I can, I use my POC with a setting of 2. The longer I am there, the less I have to use the POC during the day, but I now know I can no longer exert myself much at all at this high altitude.
My sleep doctor also did an overnight test for me in Idaho, while using my PAP machine. This is a simple test where he sends you a small device that you put on your finger ( like an oximeter), but it is computerized and measures your oxygen levels all through the night while you have the PAP on. Then you mail it back to him, and he downloads the information. He could see that even on the PAP, my oxygen levels were still too low. So now he has prescribed that I use constant flow oxygen WITH the PAP when I travel to Idaho. I rent that device ( large like a suitcase but on wheels) when I get to Idaho.

There are two kinds of portable oxygen concentrators. One is called a “pulse” POC and sends oxygen to you in pulses, with each breath you take. The other is called a “constant flow” POC, and sends a constant flow of oxygen to you whether you breathe or not. The lightest in weight and smallest to carry around is a pulse POC ( from what I was told, they have not yet come up with the technology for a light weight easy to carry constant flow POC).

Airline rules for flying with a POC:
When flying, one can only take the small pulse POC on the plane, as the constant flow one is too big to put under or by the seat with you. The one I now rent is an Inogen One G2. I put it by my feet so I could turn it on and off when I needed to, and no one told me to put it under the seat, so I didn’t. If you have to take one on the plane with you, check the rules with the airline; each airline has a different set of rules. I have now flown United and Delta, and though one does have to call ahead (48 hours) to get permission, both airlines made it relatively simple to get an ok. The airlines only permit certain brands for flying so be sure you rent or buy one that is listed for flying; there are a lot of options. Some airlines make you fill out a form, email or fax it in, and then once they approve it, will send an email back with permission. This must be printed out and taken with you for security to see. Do all of this at least 48 hours in advance of your flight.

HOW TO TRAVEL by plane with a POC device: It was strongly advised by one of our forum members that I order a wheelchair when first flying with my POC. This was invaluable information. If you try to go through security in the usual fashion, you risk being delayed for very long times; many of the TSA people are not familiar with these devices and you will get pulled out of line while they check it. If you order a wheelchair ahead of time, you sail through security with the device. I was not happy to order a wheelchair as I pride myself on being very self sufficient and I am able to walk. But this advice did serve me well, especially when I arrived in Salt Lake and would have had to walk a very long distance to another terminal to get my next connection to Idaho. Best advice I got: ORDER THE WHEELCHAIR ahead of time!

HOW TO TRAVEL by plane with a PAP (sleep apnea) device: this is very easy. One can either pack it in a suitcase, or take it as carry on. Because it is a medical device, airlines do not count it as carry on and allow you to take it on the plane along with a handbag and carry on suitcase. I have taken mine both as carry on, and in a suitcase.

MEDICARE and coverage of Oxygen concentrators:
Getting Medicare to cover the costs of renting or buying POCs seems to be problematical. I have been told that to buy one, it can take up to a year to get approval. When I called Medicare, they told me that they do cover rentals, but I have not yet turned in all the needed paperwork. Many of the companies that rent these devices will not deal with Medicare at all, leaving it in our hands to do the paperwork. Renting costs vary by states. I am renting a POC (the Inogen One G2) that is 500. for 4 weeks of rental. To buy this particular POC I have seen it cost anywhere from 2900. to 3200.
I hope this long email can be useful to some of you. If I have made any errors, please make corrections! Pamela in Boston

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Pamelasc1...thanks for sharing this invaluable information!,, tdrell

pfists | @pfists | Oct 22, 2017

In reply to @jazzmindavis "OMG I was just diagnosed in July of this year. I was terrified. I have started..." + (show)

Im going to check into getting that test.
How was the test done?

maggiew | @maggiew | Oct 22, 2017

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

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