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jammer (@jammer)

Just found out I have mycobacterium abscessus!

MAC & Bronchiectasis | Last Active: Aug 7 9:31pm | Replies (110)

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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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Replies to "@jammer These diagnoses can be really frightening at first. In my journey with bronchiectasis, MAC &..."

thank you so much for the info

I too was diagnosed with m. Abscessus, sub species abscessus 2 years ago. Last year I had 11 month treatment started with 2x day oral Linezolid, 2x day iv infusions of amikacyn, & tigecycline. Linezolid made me very sick and was stopped after 1 month. After 5&1/2-6 months amikacyn caused 20% hearing loss and was stopped. Tigecycline continued for 11 months alone, until I got a 2nd opinion at Mayo. Infection had worsened after 11 month treatment. Mayo dr took me off iv Tigecycline for 3 months to allow my body to heal, lab work to improve & gain wt. just started Recarbrio iv infusions 4x daily & 875 mg amoxicillin 2x daily. In 1 week starting Nuzyra, next week Arikayce & another wk clofaximine. Hoping I can tolerate this treatment resulting in a better outcome.

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