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Not treating mycobacterium Abscessus ?

Posted by farfalina @farfalina, Jun 28 8:07pm

I was diagnosed with mycobacterium Abscessus in Feb. I did a round of IV infusions of Amikacin, tigecycline and oral linezolid. Unfortunately I had an allergic reaction to that therapy about 4 weeks in so I had to stop that therapy. Now the doc wants to start me on orals of inhaled Aricayce , Nuzyra and eventually Clofazamine will be added. I am very hesitant to start on more meds when there’s no guarantee these will do anything to get rid of it and the risk of so many side effects. Is there anyone who decided to just stop the meds and monitor it my CT scans.

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AnnK | @annwk | Jun 30 1:33pm
In reply to @sueinmn "@annwk Will you let us know what the followup shows?" + (show)
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@annwk Will you let us know what the followup shows?

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@sueinmn Yes, I will share the results. This group has been very helpful to me.

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melinda561 | @melinda561 | Jul 1 5:29am
In reply to @roisin11 "Hello Farfalina, I have been colonized with M. Abscessus since 2018. Almost all of my cultures..." + (show)
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Hello Farfalina, I have been colonized with M. Abscessus since 2018. Almost all of my cultures have shown it. But I've never been sick enough to warrant treatment, or another way to put it, colonization has not progressed to infection. That's not to say I haven't had symptoms. I have, including insidious weight loss, fatigue, digestive issues and generally feeling unwell. But I think I'm very fortunate with my pulmonologist, who I've been with since 2012, so he knows me well enough to know when I'm BS'ing about how well I am.

In my opinion, treatment comes down to how sick you are, and how you feel about being ill to that degree, and how proactive you can be in managing your symptoms and strengthening your immune system. After struggling for a few years, I've managed to gain weight and strength, reducing fatigue and digestive issues and am feeling quite well now. Even the bronchiectasis is not a problem. For context, I've been treated for an M. Avium infection once and Mac complex twice since 2005. I hope this helps.

Best,
Roisin

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@roisin11 How have you gained and maintained your weight? Thank you.

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farfalina | @farfalina | Jul 1 10:29am
In reply to @roisin11 "Hello Farfalina, I have been colonized with M. Abscessus since 2018. Almost all of my cultures..." + (show)
Profile picture for roisin11 @roisin11

Hello Farfalina, I have been colonized with M. Abscessus since 2018. Almost all of my cultures have shown it. But I've never been sick enough to warrant treatment, or another way to put it, colonization has not progressed to infection. That's not to say I haven't had symptoms. I have, including insidious weight loss, fatigue, digestive issues and generally feeling unwell. But I think I'm very fortunate with my pulmonologist, who I've been with since 2012, so he knows me well enough to know when I'm BS'ing about how well I am.

In my opinion, treatment comes down to how sick you are, and how you feel about being ill to that degree, and how proactive you can be in managing your symptoms and strengthening your immune system. After struggling for a few years, I've managed to gain weight and strength, reducing fatigue and digestive issues and am feeling quite well now. Even the bronchiectasis is not a problem. For context, I've been treated for an M. Avium infection once and Mac complex twice since 2005. I hope this helps.

Best,
Roisin

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@roisin11 thank you for your response. This seems a good approach. I’m going to discuss with my ID docs in 2 weeks. I

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ingrid1947 | @ingrid1947 | Jul 2 9:06am

Re untreated Absessus. I also have and weight loss fatigue and digestive issues. I wd also like to know what you've done to restore. Thx

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jglennel | @jglennel | Jul 2 10:58am

At least 8 years ago I started out with Avium Complex, then Abesesses and then added BX to it. I did the Big 3, allergic to one of them. When Arikayce was being tested I was okayed to start it. The side effects were so terrible and I was like 82, 83 years old and I said no way. The ID doctor told me not to waste her time then. I went strictly to the vest, albuterol and 7% hypertonic saline and follow ACTS and at 88 years old they want me to see the ID again to be tested if I can tolerate the drugs....I will go listen to the ID but not sure I will do the meds again at my age. I am tired and cough alot with the Bx but I also take Tussin with Guaifenesin and manage to take care of myself. Good days and bad but I am blessed.

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kathyjjb | @kathyjjb | Jul 2 12:43pm

Yes! I was diagnosed with M.Abscessus subspecies abscessus in November 2024. In May of 2025, my local ID put me on Arikayce, Nuzyra, and Linzolid. Fortunately, I had a previously scheduled trip just 2 weeks later, to National Jewish Health (NJH) in Denver. The first week there was spent getting numerous tests. After that, the NJH ID DR told me I could go off the antibiotics since my immune system was suppressing further growth. My CT's were stable from Setember 2024 to May of 2025 and my culture count was 32 , I had sent in a sputum sample to NJH 3 months prior to arrival. I am now just being monitored. I am getting LOW E CT's every 6 months and sending in cultures to NJH lab 1/3 months. NJH labs monitor "culture colony counts" which is very important. I had also learned the dosage of my Linzolid and Arikayce was higher than needed-which is good to know.

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hcs | @hcs | Jul 14 11:28am
In reply to @sueinmn "@farfalina - Have you had a new sputum culture since the original diagnosis? Like @bamaqueen, one..." + (show)
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@farfalina - Have you had a new sputum culture since the original diagnosis? Like @bamaqueen, one mine grew M Abscessus, but my pulmonologist requires 2 consecutive positives, at least 4 weeks apart, to initiate treatment. The next 3 were negative, so we just did watch-and-wait. It never showed again.

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@sueinmn 7 positive sam0les out of 7 in 12 months. Commented on another of your threads with all the info but new to site to not sure who will see it. What should I expect next?

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Sue, Volunteer Mentor | @sueinmn | Jul 14 11:52am
In reply to @hcs "@sueinmn 7 positive sam0les out of 7 in 12 months. Commented on another of your threads..." + (show)
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@sueinmn 7 positive sam0les out of 7 in 12 months. Commented on another of your threads with all the info but new to site to not sure who will see it. What should I expect next?

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@hcs Welcome to Mayo Connect. I see from both of your posts that you are positive for M Abscessus, but not being treated.
Are you seeing a pulmonologist and Infectious Disease doc who are both experienced in treating this very rare infection?

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hcs | @hcs | Jul 14 2:41pm
In reply to @sueinmn "@hcs Welcome to Mayo Connect. I see from both of your posts that you are positive..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@hcs Welcome to Mayo Connect. I see from both of your posts that you are positive for M Abscessus, but not being treated.
Are you seeing a pulmonologist and Infectious Disease doc who are both experienced in treating this very rare infection?

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@sueinmn yes I have both and immunology, gastro and endocrinology for addisons. Docs tell me im not sick enough to risk treatment side effects.

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hcs | @hcs | Jul 14 10:12pm
In reply to @hcs "@sueinmn yes I have both and immunology, gastro and endocrinology for addisons. Docs tell me im..." + (show)
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@sueinmn yes I have both and immunology, gastro and endocrinology for addisons. Docs tell me im not sick enough to risk treatment side effects.

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@hcs for context I really am scared of treatment but scared as to how much my chest has changed. I knew afb in may would be pisitive.....which says it all. Im really looking to get a reasoned experienced view as to should i sit tight and just keep trying to be well.
My atelaxis extended from linguia and upper lobe to band atelaxis in lower lobe. On expiration ct id excess ground glass opacities and mosiacism. I've asthma and mild focal bronchiactiasis. So if immunocompromised does this change trigger to start treatment?
Thank you for taking time to read!

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