Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Mar 18 3:29pm

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

Hi @jammer, that must be so frightening as you said. Are you referring to mycobacterium abscessus?

If so here is some more information: https://www.cdc.gov/hai/organisms/mycobacterium.html

Are you experiencing any symptoms?

Liked by Brenda R.

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@jammer These diagnoses can be really frightening at first. In my journey with bronchiectasis, MAC & pseudomonas, I have found that my best friend is more information. There are a few on this group who have had an M abscessus diagnosis in the past, but I can't seem to locate them just now. I will keep looking as time permits.
Here are some other resources for learning about M abscessus – Nation Jewish Health, along with Mayo, are two of the premier institutions making progress against this condition.
https://www.nationaljewish.org/conditions/ntm-nontuberculous-mycobacteria/ntm-nontuberculous-mycobacteria-overview/treatment
https://www.nationaljewish.org/search?searchtext=M%20abscessus
What symptoms led you to learn about the new infection? What are your providers telling you about a care plan?
Finally, realize this places you in a high risk category for Covid-19, and do everything you can to protect yourself from the virus.
Sue

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@sueinmn

@jammer These diagnoses can be really frightening at first. In my journey with bronchiectasis, MAC & pseudomonas, I have found that my best friend is more information. There are a few on this group who have had an M abscessus diagnosis in the past, but I can't seem to locate them just now. I will keep looking as time permits.
Here are some other resources for learning about M abscessus – Nation Jewish Health, along with Mayo, are two of the premier institutions making progress against this condition.
https://www.nationaljewish.org/conditions/ntm-nontuberculous-mycobacteria/ntm-nontuberculous-mycobacteria-overview/treatment
https://www.nationaljewish.org/search?searchtext=M%20abscessus
What symptoms led you to learn about the new infection? What are your providers telling you about a care plan?
Finally, realize this places you in a high risk category for Covid-19, and do everything you can to protect yourself from the virus.
Sue

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thank you so much for the info

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@jammer Hi there. I read back through some of your older posts and see that you have been battling mac prior to this latest diagnosis of the abscessus variety. Was the original diagnosis avium bacterium? Have you been on the 'Big 3' continuously since your first diagnosis? Did you ever get rid of the gordonae infection you had?

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@jammer here are a few members that had abscessus: @Cathln, @dfleener, @brigby and I think @heathert, and maybe @irene5. I will look for more.

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Thank you so much, talking to others really helps

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@windwalker

@jammer Hi there. I read back through some of your older posts and see that you have been battling mac prior to this latest diagnosis of the abscessus variety. Was the original diagnosis avium bacterium? Have you been on the 'Big 3' continuously since your first diagnosis? Did you ever get rid of the gordonae infection you had?

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Original diagnosis was Gordonae that was 18 months ago, now the new diagnosis of adscessus. I am reading that adscessus is a lot more fast growing. I was on the "big 3" for the 18 months, my dr. took me off 6 weeks ago. I did not agree with my local dr. so I went back to Mayo and found out about the new diagnosis. I will not find out what treatment they will have me on until April 3rd when I return back to Mayo.

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@jammer

Original diagnosis was Gordonae that was 18 months ago, now the new diagnosis of adscessus. I am reading that adscessus is a lot more fast growing. I was on the "big 3" for the 18 months, my dr. took me off 6 weeks ago. I did not agree with my local dr. so I went back to Mayo and found out about the new diagnosis. I will not find out what treatment they will have me on until April 3rd when I return back to Mayo.

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@jammer I am glad you have an appointment soon. I think you should try to keep it, because in addition to the M abscessus, the anxiety of the situation can be very trying. Are you having symptoms? Are you currently using any nebs or lung clearance techniques?
Sue

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@windwalker

@jammer here are a few members that had abscessus: @Cathln, @dfleener, @brigby and I think @heathert, and maybe @irene5. I will look for more.

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Hiya all I have never had absessus so I am unable to help sorry. I know that Kathryn that started this site had it and got rid of it with the big 3 and Amikacin, and it diddnt come back to her. All the best Heather

Liked by alleycatkate

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@jammer

Original diagnosis was Gordonae that was 18 months ago, now the new diagnosis of adscessus. I am reading that adscessus is a lot more fast growing. I was on the "big 3" for the 18 months, my dr. took me off 6 weeks ago. I did not agree with my local dr. so I went back to Mayo and found out about the new diagnosis. I will not find out what treatment they will have me on until April 3rd when I return back to Mayo.

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@jammer May I ask which dr you are seeing at Mayo on your upcoming visit?

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Just got the results back re: sputum sample that I sent to National Jewish. Sputum grew mycobacterium abscessus (5 colonies-small amount) and they will not be treating at this time. Diagnosed with MAI so was surprised at these results. Anyone else have this experience and/or can help me not to be alarmed.

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@terryb1 Frustrating! I had three different cultures that grew out mycobacteria other than MAI, and each time the docs said not to be alarmed, the numbers were small. Right now, I had positive cultures for MAC in December but have been off meds anyway – the ID doc says we'll retest sputum only if symptoms return, or if CT after one year off meds shows increasing problems in my lungs. He says there are many reasons for positive cultures, especially with small numbers of colonies, and unless you are feeling ill or showing lung deterioration, the cure may be worse than the infection. So, for now I neb 7% saline, levalbuterol if needed, and go on with life. At 4 months, so far, so good. Sounds like your doc is recommending a similar conservative approach.
Have you been scheduled for any followup cultures? Are you feeling okay?
Sue

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@128128terry11t

Just got the results back re: sputum sample that I sent to National Jewish. Sputum grew mycobacterium abscessus (5 colonies-small amount) and they will not be treating at this time. Diagnosed with MAI so was surprised at these results. Anyone else have this experience and/or can help me not to be alarmed.

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Hi @128128terry11t, I moved your new post to this existing discussion where others have received advice from members after getting a new diagnosis of mycobacterium abscessus. Click VIEW & REPLY to scroll through past posts in addition to the reply from @sueinmn.

Liked by Chloe Liu

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@sueinmn

@terryb1 Frustrating! I had three different cultures that grew out mycobacteria other than MAI, and each time the docs said not to be alarmed, the numbers were small. Right now, I had positive cultures for MAC in December but have been off meds anyway – the ID doc says we'll retest sputum only if symptoms return, or if CT after one year off meds shows increasing problems in my lungs. He says there are many reasons for positive cultures, especially with small numbers of colonies, and unless you are feeling ill or showing lung deterioration, the cure may be worse than the infection. So, for now I neb 7% saline, levalbuterol if needed, and go on with life. At 4 months, so far, so good. Sounds like your doc is recommending a similar conservative approach.
Have you been scheduled for any followup cultures? Are you feeling okay?
Sue

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I am feeling ok. Sputum a little more yellow than usual but that could mean a million things. The doctor said for me to send another sputum sample 3-4 months after I had sent this one. I was alarmed because it was abscessus. Thank you for sharing that you had different mycobacteria cultures in the past. By the way, doctor is Dr. Huitt from National Jewish. Better known as the "Queen of Mac". I see a local doctor as well.

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@colleenyoung

Hi @128128terry11t, I moved your new post to this existing discussion where others have received advice from members after getting a new diagnosis of mycobacterium abscessus. Click VIEW & REPLY to scroll through past posts in addition to the reply from @sueinmn.

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I am so grateful for this helpful compilation. I remember Kathryn but did not remember that she had abscessus. Every time I say "phooey" I think of her. These replies have lessened my fear and anxiety significantly. Reading that I grew out abscessus other than MAI had me in quite a tailspin. Thank you.
Forgot to ask @sueinmn: did the different mycobacteria's numbers stay small; did they disappear completely, or grow larger? Did the doctor say what some of the reasons for the positive cultures were? Thank you both again.

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