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!!!

@dolson0730

I have not gotten an Aerobika device yet. I am overwhelmed by all this and not sure how I get one, or if I need one. I ask my Int Med Dr, Pulmonologist and ID Dr about airway clearance and they do not recommend that, but say I can do airway clearance if I want. I get so confused when professionals seem wishy washy about treatment. I have M Abbscessus. Anyone else care to share their treatment of M. ascessus? I started out on Linezolid 2x daily, Amicacin IV infusions 2x daily, and Tigecycline IV Infusions 2x daily. After 1 month on Linezolid I lost 14#, couldn't eat, drink & all I could do was sleep between infusions. My ID DR took me off Linezolid after 30 days. I was on Amicacyn IV's for 5 months then lost hearing permanently so was taken off of that. I am now only on Tigecyline IV Infusions 2x daily, and ID Dr says 4+ more months which will make it 1 year. Has anyone else been cured of Abscessus by just 1 antibiotic? Tigecycline? I am so discouraged. Thank you!
Diana

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I do airway clearance twice daily & an extra when I have an exacerbation…. it definitely works when done correctly.
I think there are a lot of patients who don't do it because it's time consuming and messy so patients like my mom give up…..and so some doctors may have become frustrated & given up on suggesting it.

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@painter2

I do airway clearance twice daily & an extra when I have an exacerbation…. it definitely works when done correctly.
I think there are a lot of patients who don't do it because it's time consuming and messy so patients like my mom give up…..and so some doctors may have become frustrated & given up on suggesting it.

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Ive got MAC, and after my Super D Navigation Broncho9scopy. which confirmed it, I had test which showed low gamma globulin (low natural immunity) and also CT shows some but not a lot of bronchiectasis. I had a really dry cough for years. When I got on the MAC investigation in 2018, I could not even get a sputum sample, and then when I finally did I had like 3 colonies, but then had 60 colonies a year ago out of blue, when I was feeling fine, after doing a lot of airway clearance for the preceding week. Sometimes I would go through a couple months of chills, and increased coughing and then that would resolve on its own. I've pretty much quit doing airway clearance because I hate it, but also I switched doctors and the new one does not particularly encourage it. Reading about all of you doing the airway clearance has motivated me and I am going to start again, but Im in wildfire smoke right now and I really do not know if Huff coughing is good in this environment. I also have used a Respirtech vest 2 years ago, but shortly after starting it (and it really did produce mucous after my cough being totally dry) I got a concussion (about 20 months ago) and couldn't use the vest afterwards, it because it jiggled my necking triggered the concussion symptoms — but that sensitivity is over I think now. So I think I will go back to it. My daughter in law suggested I find a TV program I like and watch it when I use the vest to encourage me. Im not a TV watcher so this would be a treat, I could binge watch some ridiculous program. I travel a lot. and I cannot haul that the vest apparatus with me. But— I am very conscientious to do my infusions weekly with Hizentra, which is subcutaneous gamma globulin from pooled blood supply ( I use two needles in abdomen with tubing to syringe with pump for 1 hour 15 min– 6ml). For last 6 months Ive had a very different cough– I got the flu in January, and symptoms are a lot like I read about COVID so I end up getting tested for COVID. Also, the infusions trigger flu-like symptoms sometimes, but not others. So that's my story. I have one infectious disease doctor who is convinced a lot of my problem is GI reflux– the gastro doc says no.

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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?

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@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

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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@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.

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@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…)

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@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!

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@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

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I am on three antibiotics For mycobacterium abcessus, specifically massilliense

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@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…

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@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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@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 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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