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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pop55 | @pop55 | Sep 18, 2020

How do you know how many colonies you have? Does your lab tell you? Do you use the Mayo Clinic lab when you give a sputum sample?

REPLY
pandora24 | @pandora24 | Sep 18, 2020
In reply to @pop55 "Hi Pandora, Why did your Dr do a Bronchoscopy? Did you have some symptoms? Abscessus is..." + (show)
@pop55

Hi Pandora, Why did your Dr do a Bronchoscopy? Did you have some symptoms? Abscessus is a scary diagnosis but the more you learn about it the better off you will be. Watch this u tube video by Dr Daley from National Jewish
https://youtu.be/Ml5sJJW6cRU
Do you know what subspecies of Abscessus you have? You want to make sure you have a doctor who is familiar with NTM and Abscessus before you start treatment. There are 3 subspecies of Abscessus and the treatment is different for each one.

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Hi @pop55 - thanks so much for sending that great video! It really explained a lot. No, unfortunately I don't know which type of abscessus I have, because the lab didn't bother to find that out, just as it's stated in the video. So now I'm faced with doing a second bronchoscopy so they can do it right and find out my subculture. What a ridiculous system! I don't think I have any symptoms to speak of, so far.......I'm not coughing, or losing weight, or fatigued, so I really don't know yet if my doctor will say I should treat this or not...........depends on the subculture, I guess.....amongst other things..........how about you? Do you know which subculture you have? Are you being treated?

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1 reply
pop55 | @pop55 | Sep 18, 2020
In reply to @pandora24 "Hi @pop55 - thanks so much for sending that great video! It really explained a lot...." + (show)
@pandora24

Hi @pop55 - thanks so much for sending that great video! It really explained a lot. No, unfortunately I don't know which type of abscessus I have, because the lab didn't bother to find that out, just as it's stated in the video. So now I'm faced with doing a second bronchoscopy so they can do it right and find out my subculture. What a ridiculous system! I don't think I have any symptoms to speak of, so far.......I'm not coughing, or losing weight, or fatigued, so I really don't know yet if my doctor will say I should treat this or not...........depends on the subculture, I guess.....amongst other things..........how about you? Do you know which subculture you have? Are you being treated?

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No I don't know what subspecies yet but I am waiting for the sensitivity testing to come back, hopefully next week. Just praying its not resistant to the Macrolide. Right now my Dr said I am stable so I am not being treated. Can you get up enough sputum for a culture on your own so you won't need a bronchoscopy? Here is another great video of Dr Daley. https://www.youtube.com/watch?v=jHkF-8oqoTo&feature=emb_title. I have learned so much from watching his video's.

REPLY
1 reply
pandora24 | @pandora24 | Sep 19, 2020
In reply to @pop55 "No I don't know what subspecies yet but I am waiting for the sensitivity testing to..." + (show)
@pop55

No I don't know what subspecies yet but I am waiting for the sensitivity testing to come back, hopefully next week. Just praying its not resistant to the Macrolide. Right now my Dr said I am stable so I am not being treated. Can you get up enough sputum for a culture on your own so you won't need a bronchoscopy? Here is another great video of Dr Daley. https://www.youtube.com/watch?v=jHkF-8oqoTo&feature=emb_title. I have learned so much from watching his video's.

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Hi -- So it sounds like we are in the same boat......both waiting to find out which subspecies we have. Apparently, only one of the three subspecies is easily treatable, and that's massiliense. I'm going to cry if I find out I have one of the other two, abscessus or boletii !! However, I'm pretty stable too, feel generally ok so far, and have been told that I've already had this for at least a year, if not longer. Don't know how many colonies I have, I guess maybe a couple, because she showed me two areas on my CT scan... The problem is that I can't cough at all!! (probably a good thing), so in order to find out what I've got, I must do Bronchoscopy #2. My big question is, should I bother doing it if I'm stable? Maybe I'll be one of those people who walk around with this and it never bothers me! But I would still love to get rid of it..................I live in New Haven, CT, so my doctors are at Yale New Haven medical center.....however, they said they will send my next sputum to a state of the art lab in Colorado! Thanks for the new Dr. Daley video. You are right --he is terrific! Keep me posted -- I'm praying that you don't have a "bad" one! (They're all bad...)

REPLY
1 reply
pandora24 | @pandora24 | Sep 19, 2020
In reply to @judyhodgern "Hi Pandora! Welcome!! Learning about your disease to advocate for ourselves with Our doctors that May..." + (show)
@judyhodgern

Hi Pandora! Welcome!! Learning about your disease to advocate for ourselves with Our doctors that May not know all the ins and outs of it. I had abscesses-with sub species “abscesses“ My doctor knew how to treat it specifically.
Abscessus is a tough mycobacterium and I have had several Oral and IV treatments Over last 2 years. I think I may be free of abscesses now—-my doctor knew the treatments For my subspecies and Knowing the culture and its sensitivities ——-that are “so” important to find best antibiotic to use. I was coughing and feeling terrible I feel much better now. The Best to you! Judy

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Thank you, Judy, for that information. It's GREAT to hear that you are recovering from the subspecies "abscessus" because that's supposed to be one of the hardest ones to treat! That's wonderful to hear....best of luck to you!

REPLY
pop55 | @pop55 | Sep 19, 2020
In reply to @pandora24 "Hi -- So it sounds like we are in the same boat......both waiting to find out..." + (show)
@pandora24

Hi -- So it sounds like we are in the same boat......both waiting to find out which subspecies we have. Apparently, only one of the three subspecies is easily treatable, and that's massiliense. I'm going to cry if I find out I have one of the other two, abscessus or boletii !! However, I'm pretty stable too, feel generally ok so far, and have been told that I've already had this for at least a year, if not longer. Don't know how many colonies I have, I guess maybe a couple, because she showed me two areas on my CT scan... The problem is that I can't cough at all!! (probably a good thing), so in order to find out what I've got, I must do Bronchoscopy #2. My big question is, should I bother doing it if I'm stable? Maybe I'll be one of those people who walk around with this and it never bothers me! But I would still love to get rid of it..................I live in New Haven, CT, so my doctors are at Yale New Haven medical center.....however, they said they will send my next sputum to a state of the art lab in Colorado! Thanks for the new Dr. Daley video. You are right --he is terrific! Keep me posted -- I'm praying that you don't have a "bad" one! (They're all bad...)

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Pandora, I am from Fairfield, CT but I moved to NC in 2005. Are you using 7% Saline and/or the Areobika for airway clearance? That can really help bring up what's in your lungs and hopefully keep it tapped down. Maybe it could help bring up enough for you to do a sputum culture. Like you, I am praying I will be in the small % that doesn't need to be treated. My first few cultures also showed MAC but the last 3 only showed Abscessus. This is a good video on airway clearance. https://youtu.be/TKA5IR7ePQo

REPLY
rockorobin | @rockorobin | Sep 22, 2020

I am on three antibiotics For mycobacterium abcessus, specifically massilliense

REPLY
1 reply
pandora24 | @pandora24 | Sep 22, 2020
In reply to @rockorobin "I am on three antibiotics For mycobacterium abcessus, specifically massilliense" + (show)
@rockorobin

I am on three antibiotics For mycobacterium abcessus, specifically massilliense

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Hi, and thanks for your reply. Did you also take any intravenous drugs for massilliense? I'm hoping that's the subspecies I have, because it seems to be the easiest one to treat...

REPLY
1 reply
rockorobin | @rockorobin | Sep 22, 2020
In reply to @pandora24 "Hi, and thanks for your reply. Did you also take any intravenous drugs for massilliense? I'm..." + (show)
@pandora24

Hi, and thanks for your reply. Did you also take any intravenous drugs for massilliense? I'm hoping that's the subspecies I have, because it seems to be the easiest one to treat...

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I take IV omadacycline (nuzyra), nebulized arikayce, azithromycin, and just got approved for chlofazamine

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 23, 2020
In reply to @judyhodgern "Hi Pandora! Welcome!! Learning about your disease to advocate for ourselves with Our doctors that May..." + (show)
@judyhodgern

Hi Pandora! Welcome!! Learning about your disease to advocate for ourselves with Our doctors that May not know all the ins and outs of it. I had abscesses-with sub species “abscesses“ My doctor knew how to treat it specifically.
Abscessus is a tough mycobacterium and I have had several Oral and IV treatments Over last 2 years. I think I may be free of abscesses now—-my doctor knew the treatments For my subspecies and Knowing the culture and its sensitivities ——-that are “so” important to find best antibiotic to use. I was coughing and feeling terrible I feel much better now. The Best to you! Judy

Jump to this post

Thank you Judy for the positive post! You are definitely a beacon of hope for others. I am so glad that you are feeling so much better.

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