1. < MAC & Bronchiectasis

Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Mar 18, 2020

AM VERY SCARED HAS ANY ELSE HAD THIS STAIN OF THE MYCOBACTERIA. WOULD LOVE TO TALK WITH SOMEONE WHO HAS GONE THROUGH THIS!!!

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patsolstad | @patsolstad | Jul 5, 2021

Thanks again, Sue. This is very helpful.

REPLY
thielmann1 | @thielmann1 | Jul 10, 2021

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

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4 replies
Brenda R. | @brigby | Jul 11, 2021
In reply to @thielmann1 "I too have just recently been diagnosed with abscesses after being MAC free for last 4..." + (show)
@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

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@thielmann1 Who is your Pulmo @ Stanford? I see Dr. Sung.

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1 reply
janrn1 | @janrn1 | Jul 11, 2021
In reply to @thielmann1 "I too have just recently been diagnosed with abscesses after being MAC free for last 4..." + (show)
@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

Jump to this post

Please let me know how your visit turns out. I have untreated MAC and my Dr.s are not recommending treatment. I would love to know how you met Dr Huitt and would you recommend him to others. Thank you, and bless you as you go forward.

REPLY
2 replies
migizii | @migizii | Jul 11, 2021
In reply to @thielmann1 "I too have just recently been diagnosed with abscesses after being MAC free for last 4..." + (show)
@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

Jump to this post

In reply to @thielman…. I have had bronchiectasis since 2017 (diagnosed) but have never had MAC/NTM’s…I feel for you so much! Take care and keep us posted.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 12, 2021
In reply to @janrn1 "Please let me know how your visit turns out. I have untreated MAC and my Dr.s..." + (show)
@janrn1

Please let me know how your visit turns out. I have untreated MAC and my Dr.s are not recommending treatment. I would love to know how you met Dr Huitt and would you recommend him to others. Thank you, and bless you as you go forward.

Jump to this post

Hi Jan,
I thought I would answer your question sent by the Contact a Moderator form here in this discussion.

Here is a list of pulmonary specialists practising at Mayo Clinic at all 3 locations:
https://www.mayoclinic.org/departments-centers/pulmonary-medicine/sections/doctors/drc-20397851

You can filter by location
- Rochester, MN
- Jacksonville, FL
- Phoenix/Scottsdale, AZ

REPLY
thielmann1 | @thielmann1 | Jul 12, 2021
In reply to @brigby "@thielmann1 Who is your Pulmo @ Stanford? I see Dr. Sung." + (show)
@brigby

@thielmann1 Who is your Pulmo @ Stanford? I see Dr. Sung.

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I have been seeing Dr. Ruoss. How do you like Dr. Sung?

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thielmann1 | @thielmann1 | Jul 12, 2021
In reply to @janrn1 "Please let me know how your visit turns out. I have untreated MAC and my Dr.s..." + (show)
@janrn1

Please let me know how your visit turns out. I have untreated MAC and my Dr.s are not recommending treatment. I would love to know how you met Dr Huitt and would you recommend him to others. Thank you, and bless you as you go forward.

Jump to this post

After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford, I decided to take myself to National Jewish Health and ask to be seen by Dr. Huitt, on the recommendation of a few infectious disease doctors. I called them, they interviewed me extensively, and then set up a 10 day visit at NJH in Denver. My time there was well spent as they gave my an extensive battery of tests and sent me to classes. I have been MAC free for 4 1/2 years now; however, this abscessus has just shown up in my sputum sample, which has been quite discouraging for me. Since Gwen Huitt only focuses on MAC, I found her to be much more knowledgeable than my 2 pulmonologists that treat a variety of diseases, of which MAC is one. I will let you know how visit goes with her. Nancy

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 12, 2021
In reply to @thielmann1 "After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford,..." + (show)
@thielmann1

After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford, I decided to take myself to National Jewish Health and ask to be seen by Dr. Huitt, on the recommendation of a few infectious disease doctors. I called them, they interviewed me extensively, and then set up a 10 day visit at NJH in Denver. My time there was well spent as they gave my an extensive battery of tests and sent me to classes. I have been MAC free for 4 1/2 years now; however, this abscessus has just shown up in my sputum sample, which has been quite discouraging for me. Since Gwen Huitt only focuses on MAC, I found her to be much more knowledgeable than my 2 pulmonologists that treat a variety of diseases, of which MAC is one. I will let you know how visit goes with her. Nancy

Jump to this post

Hi Nancy. Yes! Please do check back and let us know what you learn. Good luck with everything. -Terri

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 12, 2021
In reply to @thielmann1 "I too have just recently been diagnosed with abscesses after being MAC free for last 4..." + (show)
@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

Jump to this post

Nancy, are you doing any nebulized saline now to at least try to thwart the infection for now? You may want to question the taking of azithromycin just yet as many mac experienced doctors prefer to use that drug as a last resort. It is considered a 'big gun' so to speak, and the fear is that your abscessus could become resistant to it and then you won't have many options. Mayo drs like to try other antibiotics first.

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