Just got second CT Scan says probably MAC. I am a K teacher

Posted by aima1234 @aima1234, Aug 24, 2021

Hello all,
I am new to this sight as of reviewing CT scan that read probably MAC. Wow! I am 56 years old. I went to the ER two weeks ago because I was experiencing chest pains and since I had hip surgery a few months back wanted to make sure it wasn't a blood clot. Turns out they think I have this. I can't do. anything until I get this all tested from a pulmonologist and it seems like it will be a wait. Though, I am very assertive so I am going to try to figure this out.

I am a K. public school teacher. When can I go back to work? Are folks able to do all of that stuff. I also teach dance. How will this affect it. I have had other health issues before, including low grade breast cancer. I know things could always be worse.

What are some best things I can do to help myself now while I wait.

THANK YOU.

This is what my radiologist Summaary said: Redemonstration of clustered pulmonary nodules in the lingula (stable from 8/8/2021) and middle lobe (slightly increased). Given the distribution, consider mycobacterial infection such as Mycobacterium avium-intracellulare (MAI), but a wide variety of alternative airways-related infectious or inflammatory processes are also possible.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

First, I want to welcome you to Mayo Connect, a community of people living with a wide variety of conditions and diseases who try to help one another. We are not medical professionals and don't give medical advice but we share our successes and failures in an effort to help one another along the way.

If you have MAC or a similar infection in your lungs, unless it is TB, it is not contagious to others. It is an opportunistic infection that takes up residence in the lungs of some people,usually with an underlying conditions like Bronchiectasis, COPD or Cystic Fibrosis. Has anyone mentioned these to you? That means, if you feel well enough, it is probably OK to work. However with one probable infection in your lungs, you may be more susceptible to other illnesses, so take extra precautions to stay safe.

One possible thing you can do to hasten getting an exact diagnosis is to ask your primary provider to order a sputum culture – these can take weeks or longer for the bacteria to grow out and show the specific bacteria in your lungs. That way part of the diagnostic will already be done by the time you see a pulmonologist. An alternative is to see an infectious disease specialist if that is faster than seeing pulmonology.

If you look at some of the other discussions in this group, you will find many references to sputum cultures and treatment options.
Use the search box at the top of any discussion to narrow down the list.

You can find more info here: https://www.lung.org/lung-health-diseases/lung-disease-lookup/mac-lung-disease

Feel free to do some reading and come back with more questions.
Sue

REPLY
@sueinmn

First, I want to welcome you to Mayo Connect, a community of people living with a wide variety of conditions and diseases who try to help one another. We are not medical professionals and don't give medical advice but we share our successes and failures in an effort to help one another along the way.

If you have MAC or a similar infection in your lungs, unless it is TB, it is not contagious to others. It is an opportunistic infection that takes up residence in the lungs of some people,usually with an underlying conditions like Bronchiectasis, COPD or Cystic Fibrosis. Has anyone mentioned these to you? That means, if you feel well enough, it is probably OK to work. However with one probable infection in your lungs, you may be more susceptible to other illnesses, so take extra precautions to stay safe.

One possible thing you can do to hasten getting an exact diagnosis is to ask your primary provider to order a sputum culture – these can take weeks or longer for the bacteria to grow out and show the specific bacteria in your lungs. That way part of the diagnostic will already be done by the time you see a pulmonologist. An alternative is to see an infectious disease specialist if that is faster than seeing pulmonology.

If you look at some of the other discussions in this group, you will find many references to sputum cultures and treatment options.
Use the search box at the top of any discussion to narrow down the list.

You can find more info here: https://www.lung.org/lung-health-diseases/lung-disease-lookup/mac-lung-disease

Feel free to do some reading and come back with more questions.
Sue

Jump to this post

Thank you!
I definitely do have an active infection now. I'm very weak, have difficulty breathing, horrible feeling in my chest and total body discomfort. I was scared to go to sleep at night because of my breathing. My doc asst. gave me zanax to take last night because I didn't sleep for 2 days. Most scary is I can't get an appt. with a pulmonologist and I feel like I am dying. Of course, I will get on the phone tomorrow and continue to try to get an appt. ASAP. I am a single mother of a fourteen year old girl and this is feeling scary right now.
Question… any idea what I can do for comfort. Do you all take IB or Tylenol? Does that help.
I drink tea with honey as much as possible. Do active infection ever subside on their own? Any input would be appreciated.

REPLY
@aima1234

Thank you!
I definitely do have an active infection now. I'm very weak, have difficulty breathing, horrible feeling in my chest and total body discomfort. I was scared to go to sleep at night because of my breathing. My doc asst. gave me zanax to take last night because I didn't sleep for 2 days. Most scary is I can't get an appt. with a pulmonologist and I feel like I am dying. Of course, I will get on the phone tomorrow and continue to try to get an appt. ASAP. I am a single mother of a fourteen year old girl and this is feeling scary right now.
Question… any idea what I can do for comfort. Do you all take IB or Tylenol? Does that help.
I drink tea with honey as much as possible. Do active infection ever subside on their own? Any input would be appreciated.

Jump to this post

Wow, this sounds like when I was diagnosed! Again, in my experience, this severe an infection is only going to get worse.
I understand the ER reluctance to give you an antibiotic when you need the exact infection diagnosed, but it sounds like this cannot wait – your primary might need give you something to knock this down while you wait for an appointment. Relieve pain and any coughing with OTC meds – run by doc first.
As for staying comfortable – do you have an inhaler to help with shortness of breath? If not, call your primary and ask for one. And possibly a nebulizer.
Again, also talk to doc about getting a sputum sample to speed up learning what is making you so sick.
Some of us (including me) have found some comfort in a product called "Breathe Easy Tea" by Traditional Medicinals – widely available in many supermarkets, health food stores, on-line and even larger WalMarts.
In the meantime, get copies of the CTs and any tests so far to expedite getting treated when you can get an appointment, and don't discount trying to get at least a phone appointment with Mayo (https://www.mayoclinic.org/appointment-request) or National Jewish Health in Denver (https://www.nationaljewish.org/doctors-departments)
Can you share what area you are in? Maybe another member can offer a suggestion for a doc.
Please stay in touch with me and let me know what kind of help you can find.
Sue

REPLY
@sueinmn

Wow, this sounds like when I was diagnosed! Again, in my experience, this severe an infection is only going to get worse.
I understand the ER reluctance to give you an antibiotic when you need the exact infection diagnosed, but it sounds like this cannot wait – your primary might need give you something to knock this down while you wait for an appointment. Relieve pain and any coughing with OTC meds – run by doc first.
As for staying comfortable – do you have an inhaler to help with shortness of breath? If not, call your primary and ask for one. And possibly a nebulizer.
Again, also talk to doc about getting a sputum sample to speed up learning what is making you so sick.
Some of us (including me) have found some comfort in a product called "Breathe Easy Tea" by Traditional Medicinals – widely available in many supermarkets, health food stores, on-line and even larger WalMarts.
In the meantime, get copies of the CTs and any tests so far to expedite getting treated when you can get an appointment, and don't discount trying to get at least a phone appointment with Mayo (https://www.mayoclinic.org/appointment-request) or National Jewish Health in Denver (https://www.nationaljewish.org/doctors-departments)
Can you share what area you are in? Maybe another member can offer a suggestion for a doc.
Please stay in touch with me and let me know what kind of help you can find.
Sue

Jump to this post

Thanks for the mention of the tea. I had not heard of that and just placed my Amazon order.

REPLY

Hey there Aima, you asked "What are some best things I can do to help myself now while I wait." For the immediate future you'll do no better than suck in a deep breath, brew a cup of your fave libation and chill. The momentary wall-to-wall "sturm un drang" in your head will soon pass and, low and behold: the orb we call home will still be rotating on its axis. Now ain't that just amazing? You've already discovered this treasure trove of Nickle and Dollar knowledge provided through the good offices of the famed Mayo Clinic. Read a few more posts responding to your situation and enjoy the rest of Thursday. Don

REPLY
@thumperguy

Hey there Aima, you asked "What are some best things I can do to help myself now while I wait." For the immediate future you'll do no better than suck in a deep breath, brew a cup of your fave libation and chill. The momentary wall-to-wall "sturm un drang" in your head will soon pass and, low and behold: the orb we call home will still be rotating on its axis. Now ain't that just amazing? You've already discovered this treasure trove of Nickle and Dollar knowledge provided through the good offices of the famed Mayo Clinic. Read a few more posts responding to your situation and enjoy the rest of Thursday. Don

Jump to this post

Thank you!

REPLY
@sueinmn

Wow, this sounds like when I was diagnosed! Again, in my experience, this severe an infection is only going to get worse.
I understand the ER reluctance to give you an antibiotic when you need the exact infection diagnosed, but it sounds like this cannot wait – your primary might need give you something to knock this down while you wait for an appointment. Relieve pain and any coughing with OTC meds – run by doc first.
As for staying comfortable – do you have an inhaler to help with shortness of breath? If not, call your primary and ask for one. And possibly a nebulizer.
Again, also talk to doc about getting a sputum sample to speed up learning what is making you so sick.
Some of us (including me) have found some comfort in a product called "Breathe Easy Tea" by Traditional Medicinals – widely available in many supermarkets, health food stores, on-line and even larger WalMarts.
In the meantime, get copies of the CTs and any tests so far to expedite getting treated when you can get an appointment, and don't discount trying to get at least a phone appointment with Mayo (https://www.mayoclinic.org/appointment-request) or National Jewish Health in Denver (https://www.nationaljewish.org/doctors-departments)
Can you share what area you are in? Maybe another member can offer a suggestion for a doc.
Please stay in touch with me and let me know what kind of help you can find.
Sue

Jump to this post

Thank you! I just ordered breath easy and after many phone calls and pleas I was able to get a virtual appt. with one pulmonologist today and then just just got a call to go to a breathing clinic tomorrow am. I am a teacher so I am always advocating for my students and families. I am good at that and yet it took me hours and hours of work to set up appt.

REPLY
@aima1234

Thank you! I just ordered breath easy and after many phone calls and pleas I was able to get a virtual appt. with one pulmonologist today and then just just got a call to go to a breathing clinic tomorrow am. I am a teacher so I am always advocating for my students and families. I am good at that and yet it took me hours and hours of work to set up appt.

Jump to this post

So glad you got an appointment! Yes, in medical care it is too often necessary to be persistent or insistent. We who have that experience are fortunate.
I will be interested to hear what you learn.

REPLY
@vfparker

Thanks for the mention of the tea. I had not heard of that and just placed my Amazon order.

Jump to this post

I hope it helps you. Some people find the taste unpleasant – others like me come to savor it. My husband drinks his with a little honey. In cool weather it is my mid-morning and mid-afternoon hot beverage.
Sue

REPLY
@sueinmn

I hope it helps you. Some people find the taste unpleasant – others like me come to savor it. My husband drinks his with a little honey. In cool weather it is my mid-morning and mid-afternoon hot beverage.
Sue

Jump to this post

Hi there again,
don't know if I do a new post or just continue this one. However, I have some questions to folks out there. I had my bronchoscopy about almost a week ago. I also got a phone call from my primary that I tested positive for C anca a test for vasculitis but my doc said nothing showed up on my blood work. Has anyone out there got a positive on an anca test out there? I was able to get an appt. with aa rheumatologist for Friday.

I also have a general question regarding MAC lung. I had an anterior hip replacement in May and am concerned about the infection going to the replacement. Anyone out there have familiarity with this stuff?

I. am still waiting for whatever will show up from the bronchoscopy. I am also back to teaching but just 4 hours this week. wearing an N95 mask and surgical mask over that. Trying to sleep 9 hours.

REPLY
@aima1234

Hi there again,
don't know if I do a new post or just continue this one. However, I have some questions to folks out there. I had my bronchoscopy about almost a week ago. I also got a phone call from my primary that I tested positive for C anca a test for vasculitis but my doc said nothing showed up on my blood work. Has anyone out there got a positive on an anca test out there? I was able to get an appt. with aa rheumatologist for Friday.

I also have a general question regarding MAC lung. I had an anterior hip replacement in May and am concerned about the infection going to the replacement. Anyone out there have familiarity with this stuff?

I. am still waiting for whatever will show up from the bronchoscopy. I am also back to teaching but just 4 hours this week. wearing an N95 mask and surgical mask over that. Trying to sleep 9 hours.

Jump to this post

Welcome back – you hit the right spot to continue your discussion.
Let's break this down…
When the bronchoscopy was done, mucus was collected and sent to be cultured. This takes 2-8 weeks to grow & determine which antibiotics your particular infection will respond to, so it will be a while before you have answers.

This confused me tested "positive for C anca a test for vasculitis but my doc said nothing showed up on my blood work" – definitely a question for the rheumatologist, and a whole different topic for consideration if vasculitis is diagnosed. May I ask if you know why this test was done?

As for the MAC infection migrating to your surgical site, if your lung problem is determined to be MAC, your pulmonologist should bring an infectious disease specialist into the discussion. In general, MAC confined to the lungs is not considered a high risk. I had two ortho surgeries on my hands while I had MAC, and the surgeon was not concerned at all that it would affect the site (and it did not.)

I am sorry you are going through this difficult waiting game – it just adds to anxiety, doesn't it? Please let me know what you learn from the rheumatologist.
In the meantime, be kind to yourself.
Sue

REPLY
@sueinmn

Welcome back – you hit the right spot to continue your discussion.
Let's break this down…
When the bronchoscopy was done, mucus was collected and sent to be cultured. This takes 2-8 weeks to grow & determine which antibiotics your particular infection will respond to, so it will be a while before you have answers.

This confused me tested "positive for C anca a test for vasculitis but my doc said nothing showed up on my blood work" – definitely a question for the rheumatologist, and a whole different topic for consideration if vasculitis is diagnosed. May I ask if you know why this test was done?

As for the MAC infection migrating to your surgical site, if your lung problem is determined to be MAC, your pulmonologist should bring an infectious disease specialist into the discussion. In general, MAC confined to the lungs is not considered a high risk. I had two ortho surgeries on my hands while I had MAC, and the surgeon was not concerned at all that it would affect the site (and it did not.)

I am sorry you are going through this difficult waiting game – it just adds to anxiety, doesn't it? Please let me know what you learn from the rheumatologist.
In the meantime, be kind to yourself.
Sue

Jump to this post

My pulmonologist called me last Friday and said that I tested positive for the Anca test. I think the speciman from the Bronchoscopy showed this but not sure, she said it was odd because it didn't show up on any bloodwork.

Anca is for vasculitis and my pulmonologist said I should see a rheumatologist and I have an appt. for Friday to do further tests

I had also had a lung function test at Stanford last week that came back normal. My primary doc has been out for the past two weeks and all I have is her nurse who keeps sadly saying that primary doc was worried because she thought it might be MAC. Here I am, hustling in these covid days to get appt. sooner than later.

I appreciate this site. Thank you!

REPLY
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