Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Wed, 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!!!

@128128terry11t

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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@terryb1 One, M gordonae, continues to be present in small numbers and the ID doc, in consultation with NJH, says they are not significant. 2 others (I forget which) each only appeared once, in small numbers, then disappeared. One was though to be a contaminated specimen because of 3 taken and tested the same week, it only appeared in one.
I like that you have a plan for retesting – and that you are dealing with the best experts.
Do you nebulize and use an airway clearance device regularly? I feel that really helps keep my sputum thin & clear.
Sue

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Thanks, Sue. Do airway clearance twice a day. I am trying!

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@128128terry11t

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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I spent two weeks in January at NJH after testing positive at home for MAC and finding local doctors each had their own opinion on treatment plans for me. After an extremely thorough work up at NJH it was determined I don’t have MAC at all! My wonderful doctor at NJH is Dr. Kasperbauer. I loved their team approach. I have complete faith in their methods and conclusions. Best decision I ever made was to consult with them before going forward with a treatment plan! Best wishes!

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@sueinmn

@terryb1 One, M gordonae, continues to be present in small numbers and the ID doc, in consultation with NJH, says they are not significant. 2 others (I forget which) each only appeared once, in small numbers, then disappeared. One was though to be a contaminated specimen because of 3 taken and tested the same week, it only appeared in one.
I like that you have a plan for retesting – and that you are dealing with the best experts.
Do you nebulize and use an airway clearance device regularly? I feel that really helps keep my sputum thin & clear.
Sue

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@sueinmn @terryb1 I have just had gordonae show up also, but as sue says my Dr thinks it will just go as small amount probs contaminated specimen.

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@128128terry11t

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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@128128terry11t Wow. You are so lucky to have Dr. Huitt. I understand she is one of the best in the country. Nan

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I am very grateful to have Dr. Huitt BUT she is retiring in a little under 2 years. She is irreplaceable.

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@sueinmn

@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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I too have been diagnosed with Mycrobacterium Abscessus. I am currently being treated by U of MN Infectious Disease Dr. started on Iv infusions of Amikacyn once a day, Tigecycline 2 infusions daily & Linezolid orally twice a day. Linezolid made me very, very sick. Dr finally took me off it and I continue with the infusions everyday. It’s been 2&1/2 months so far of twice daily infusions. I Nebulizer 3% saline, which doesn’t produce for me in airway clearance, am waiting for a prescription for 7% & hoping I can be more productive with this. I Nebulize once a day. I’ve not seen a respiratory therapist to help me with this & hope I’m doing it right. Maybe when Covid is over I can receive this assistance. Any advice is appreciated.

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Hi @dolson0730 …Here is a basic video by National Jewish Health on nebulizing. After I nebulize, I bend at the waist over the sink and huff, huff, huff to bring up what sputum that I am able to "evict". Hope this helps. Kate

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@dolson0730

I too have been diagnosed with Mycrobacterium Abscessus. I am currently being treated by U of MN Infectious Disease Dr. started on Iv infusions of Amikacyn once a day, Tigecycline 2 infusions daily & Linezolid orally twice a day. Linezolid made me very, very sick. Dr finally took me off it and I continue with the infusions everyday. It’s been 2&1/2 months so far of twice daily infusions. I Nebulizer 3% saline, which doesn’t produce for me in airway clearance, am waiting for a prescription for 7% & hoping I can be more productive with this. I Nebulize once a day. I’ve not seen a respiratory therapist to help me with this & hope I’m doing it right. Maybe when Covid is over I can receive this assistance. Any advice is appreciated.

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You do so much already. Would it be possible for you to nebulize twice a day instead of once; I realize that you don't get up much when you do so it may not be worth the time (but things may improve if you use the 7%)? Dr. Huitt advised me to do it twice a day because more mucous plugs showed on my CT. When you do see a respiratory therapist, please ask him or her about using a fluttering device like an aerobika when you nebulize. Might you be eligible for a vest? Dr. Huitt suggested that I could use the vest when I nebulize. I appreciate your sharing your experience; thank you. Wishing you good luck and success.

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@alleycatkate

Hi @dolson0730 …Here is a basic video by National Jewish Health on nebulizing. After I nebulize, I bend at the waist over the sink and huff, huff, huff to bring up what sputum that I am able to "evict". Hope this helps. Kate

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Thank you! I appreciate your advice!

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@128128terry11t

You do so much already. Would it be possible for you to nebulize twice a day instead of once; I realize that you don't get up much when you do so it may not be worth the time (but things may improve if you use the 7%)? Dr. Huitt advised me to do it twice a day because more mucous plugs showed on my CT. When you do see a respiratory therapist, please ask him or her about using a fluttering device like an aerobika when you nebulize. Might you be eligible for a vest? Dr. Huitt suggested that I could use the vest when I nebulize. I appreciate your sharing your experience; thank you. Wishing you good luck and success.

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Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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@dolson0730

Thank you! I appreciate your advice!

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Do you happen to have a video to share regarding the actual breathing techniques? or huffing? Thank you!

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@dolson0730

Do you happen to have a video to share regarding the actual breathing techniques? or huffing? Thank you!

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@dolson0730 …Wow! I learned watching these too!!

or

another:

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@dolson0730

Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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@dolson0730 I ordered my Aerobika on line. Although my Dr told me to use it, he never gave me a Rx for it. But it would be wise to have a respiratory therapist instruct you how to use it. I originally Googled how to use it, but my resp. ther. showed me a different way than what I saw on line. I do a total of 50 breaths twice per day with huff coughing in between. A Huff cough is like trying to fog a mirror. First take a deep breath and then Expel as much air as you can. 10 breaths sitting upright then huff, huff. 10 breaths laying on my right side with left arm over head. Then 10 on my back. Then 10 on my left side with right arm overhead and then 10 on my back. Hope this helps. Others may do it differently.
Gina

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@dolson0730

Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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I honestly don't know? I just thought you probably would need a prescription for the aerobika & vest, and that was the route to follow?

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