Update On Treatment of MAC

Posted by Terri Martin, Volunteer Mentor @windwalker, Jun 22, 2017

Hello All! I had a vist to the Mayo this past Tues. I was first diagnosed with MAC in 2005. I refused the three drug standard treatment. Several weeks on antibiotics knocked it out. It came back in 2013, was treated with one antibiotic for 10 days a month on a monthly basis. It cleared up. Then in 2016, had pseudomonas infection. It was treated with bi-monthly tobramysin & cipro. It too cleared up.I asked my Dr why in the four yrs I have been going to the Mayo; that he never put me on the BIG THREE antibiotics. His reply, and I quote with his permission: The BIG THREE treatment is 'old school' and it is OVER-TREATING most patients. He said he gets new patients in seeking second opinions and that he takes no less than three people a week OFF of the BIG THREE. I asked what he prescribes instead. He said it varies depending on colony size, specie, patient history, etc. He stated that most drs prescribe the BIG THREE because it was the norm years ago, and they honestly do not know much about the disease. He only uses the BIG THREE when a patient does not respond to single antibiotic treatments, or is SEVERE and CHRONIC. I would guess Katherine may fall into that catagory. He also said that he sometimes doesn't recommend treatment at all because 90% of the time, the MAC clears up on it's own. That may be why someone recently posted she was confused as to why her dr did not want to treat it yet and wait and see. I found this info VERY interesting.

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

Colleen Young, Connect Director | @colleenyoung | Nov 17, 2021

In reply to @almap "I am new to this site but desperate to get help for my mother. She was..." + (show)

Hi @almap, I'd like to add my welcome. Should you wish to consider a second opinion at Mayo Clinic, here is the information to request an appointment at the location of your choice: http://mayocl.in/1mtmR63

They will review your mom's records and tell you if they would offer the same treatment as you are receiving locally. Mayo Clinic doesn't want you to incur costs and travel unnecessarily. Top MAC experts can review options that may be different that your current infectious diseases doctor is aware of.

mc2019 | @mc2019 | Nov 17, 2021

In reply to @colleenyoung "Hi @almap, I'd like to add my welcome. Should you wish to consider a second opinion..." + (show)

Hello Colleen, I have a question regarding second opinion at Mayo Clinic, I am from abroad and would very much like to get my son´s cardiologic results evaluated by a cardiac EP, would you please tell me if that is possible and be that the case how to proceed? Thank you and congratulacions for the valuable contributions you and everybody else make in Connnect.

almap | @almap | Nov 18, 2021

In reply to @colleenyoung "Hi @almap, I'd like to add my welcome. Should you wish to consider a second opinion..." + (show)

Thank you, I think that might be a very good idea. The Doctors here seem to work very slowly.

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2021

In reply to @mc2019 "Hello Colleen, I have a question regarding second opinion at Mayo Clinic, I am from abroad..." + (show)

@mc2019, I might recommend that you call Mayo Clinic's international patient appointment office to find out what options may be available to you to consult with a Mayo Clinic specialty team. There are several options, like coming to a Mayo Clinic location in the US or in London UK, or a virtual consult or a location closer to home that is part of the Mayo Clinic Care Network (https://www.mayoclinic.org/about-mayo-clinic/care-network)

Here's is more information and contact numbers http://mayocl.in/1mtmR63
More info for international patients https://www.mayoclinic.org/departments-centers/international

msk | @msk | Dec 3, 2021

In reply to @windwalker "@cld120 Keep trying to get an appt at Mayo. Ask to be put on their cancellation..." + (show)

Hello to all. I am like carolyn who has just been told that i have Mac. My pulmonologists sent me yo an infectious disease doctor who informed me of what treatment they use and how bad the side effects are. She left me with information to study and gave me a doctor name at duke for a second opinion. I live in North Carolina so duke is close to me.
Biggest question do i wait for treatment or not. My fear that it will get worse. I will meet with her in January to discuss what to do.
I have bronchiectasis-tree in bud nodules in right lung and left
I get ct every 6 mo bec i have nodules that show up and then they disappear. My lung doctor has been telling i have mac but sputum and bronchoscopy would not show up but now 2 sputum have shown positive for mac.
I just found this forum and the more i read i just don’t know what to do.
I had neck cancer 5 yrs ago stage 4 had chemo/radiation. I believe this created environment for mac. I also am very concerned with infection in my lungs creating possibility for cancer.
I am going today call duke to get an appt.
I have been researching this mac for days and i just keep praying i get guidance on what to do.
If you could point me to more research I would appreciate your comments.
Miriam

Sue, Volunteer Mentor | @sueinmn | Dec 3, 2021

In reply to @msk "Hello to all. I am like carolyn who has just been told that i have Mac...." + (show)

Hello Miriam, Welcome to Mayo Connect. I see that you have been a member for a few days, even though this is your first post. When I was first diagnosed, it was by a pulmonologist who didn't have the best skills in explaining. He basically said "This is what you have, you're intelligent - Google it". He handed me a handful of prescriptions and an Acapella device it its wrapper and left the room. At the time I was very ill with pneumonia, pseudomonas & MAC, so treatment was mandatory and immediate. I was weak, fatigued, coughing non-stop.

Wow, everything I read was dire and scary - I didn't know what to do! Then I found this forum - the MAC & Bronchiectasis group - and learned that when properly managed, this is a condition I can live with. I learned about airway clearance, nebulizing. I learned that mycobacteria is everywhere, that everyone has their own comfort level in dealing with it, and that I needed to develop my own routine to stay healthy.

You are taking all the right steps at this point - getting a clear picture of your current status and the exact infection, consulting both an ID doc and a pulmonologist. If you diagnosis is any Mycobacteria other than M. abscessus, a few weeks of waiting is not necessarily bad. MAC is known as an infection that is "slow to grow and slow to go".

Does your lung doctor have you doing any kind of airway clearance to help move the mucus out of your lungs? Or any inhalers?

Good luck as you move forward on this journey - feel free to come back here and ask questions as you read and learn.
Sue

raney | @raney | Dec 4, 2021

In reply to @msk "Hello to all. I am like carolyn who has just been told that i have Mac...." + (show)

Miriam, I live in Wilmington, NC and my doctor referred me to UNC-CH. I am going for my 2nd visit on 12/8. The 1st one was in June. At this poi t the pulmo that I am seeing in CH is but gathering info. However she did start me on airway clearance as the inhalers caused chest tightness.
I would like to know about your treatment at Duke. Do they have a Pulmonary Specialty Clinic? A previous Dr had mentioned Duke to me. I want to go to the best. Would like to discuss with you after your appointment. Duke is about 3o mins closer to me..

msk | @msk | Dec 4, 2021

In reply to @sueinmn "Hello Miriam, Welcome to Mayo Connect. I see that you have been a member for a..." + (show)

Thank you for your thoughts. I am in inhalers…flovent/albuterol which i use on a nebulizer. At this point I am researching and learning. Will be getting a second opinion at Duke. Will then decide what is my best option.
Thanks miriam

msk | @msk | Dec 4, 2021

In reply to @raney "Miriam, I live in Wilmington, NC and my doctor referred me to UNC-CH. I am going..." + (show)

Hi the infectious disease doctor i just saw this week gave me the name of the doctor at duke who specializes in Mac. She suggested going there for a second opinion. Currently i am researching and learning which she recommended. I have an appt with her in January to discuss my situation.
I hope i get an appt at Duke before going back to the infectious doctor. I am like you i want to go to the best or at least a hospital that sees many cases and has more data. I just spoke to the office yesterday and i need a referral to get an appt. I have to wait until Monday to call the inf disease dr to get my referral.
His name dr jason stout at duke
Would like to hear what the doctor tells you on the 8th about treatments. I know we are all different situations. Right now i have no idea what to do. Hope this helps. Miriam

lora jo | @ljfoo | Dec 4, 2021

In reply to @msk "Hello to all. I am like carolyn who has just been told that i have Mac...." + (show)

Miriam,
Attached is the guidelines of the America Thoracic Society and others on diagnostic criteria for whether or not to treat MAC patients with the Big 3. Just because your sputum tests positive for MAC does not mean you need to get on the Big 3. What's important to look at also is the colony count. Make sure the lab you use does colony counts because if the count is low enough, your doctor probably won't put you on the antibiotics.
lora jo

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