Just found out I have mycobacterium abscessus!
AM VERY SCARED HAS ANY ELSE HAD THIS STAIN OF THE MYCOBACTERIA. WOULD LOVE TO TALK WITH SOMEONE WHO HAS GONE THROUGH THIS!!!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I just came across a medical article that stated M. abscessus lung disease can actually progress slowly and not always even need treatment.
Here is a paragraph from the article "M. abscessus lung disease may progress very slowly; furthermore, some patients do not require treatment, whereas others require combination antibiotic therapy, including parenteral agents. After discussing this information with the patients, we implemented an observation period of at least 6 to 12 months without antibiotic treatment. When the disease was clearly recognized as being progressive, the patients received a standardized combination antibiotic therapy after hospitalization. In patients with substantial symptoms and/or advanced or progressive radiographic abnormalities, antibiotic therapy was initiated immediately"
The full article can be viewed here https://www.atsjournals.org/doi/full/10.1164/rccm.200905-0704OC
Thank you for reminding us of that article. It is a great reminder of what my ID doc says "Mycobacteria is slow to grow and slow to go" – this is generally true of MAC, abscessus, even TB – which is why, in addition to antibiotic resistance, it is so difficult to treat.
The introduction of Arikayce (inhaled Amikacin) has made some doctors more willing to initiate treatment of M. abscessus, but I think many still watch and wait.
All of these considerations are why it is so important to find a care team be experienced in managing NTM.
NTM M. Abscesses, subspecies abscesses
Does anyone else have this NTM specific bacteria? What are you being treated with? Thank you! Diana
@dolson0730 You are looking to connect with members that have NTM specific bacteria.
You will notice I moved your question to a discussion in the MAC & Bronchiectasis group where members like @judyhodgern @pop55 @pandora24 @rockorobin @128128terry11t are already discussing this topic. I did that so that there is a central location to discuss this topic. I know you have been part of this conversation in the past but you may want to scroll through the previous comments for suggestions, if you haven't done so already.
Below I have linked the direct link to the MAC & Bronchiectasis group. You may wish to subscribe to this lively group so you can get email notifications and updates from members.
– MAC & Bronchiectasis https://connect.mayoclinic.org/group/mac-bronchiectasis/
You asked members what members are being treated with. May I ask what treatment you are receiving?
@dolson..I had C.Abscessus show up in my sputum back in October..my Dr isn’t concerned because it’s common for bacteria to come and go..I have had this happen several times already..probably a contaminant
Hi @erikas, Thank you! NTM is short for Nontuberculous mycobacterial (NTM) lung disease is a general term for a group of disorders characterized by exposure to specific bacterial germs known as mycobacteria. The species of bacteria I have is m. abscessus, sub-species abscessus. Mycobacterium abscessus (also called M. abscessus) is a bacterium distantly related to the ones that cause tuberculosis and Hansen's Disease (Leprosy). It is part of a group of environmental mycobacteria and is found in water, soil, and dust and is a rapidly growing mycobacteria (RGM). Mycobacterium abscessus subsp abscessus is the most common respiratory pathogen among the rapidly growing non-tuberculous mycobacteria (NTM) and is also the most feared due to its well-deserved reputation for being refractory to antibiotic therapy. M. abscessus subsp abscessus has multiple innate antibiotic resistance mechanisms. This maybe more info than you want? Sorry it got long!
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.
@dolson0730 Saying prayers for you. That’s a lot. @ irene5
Thank you! Staying positive! Hope you're doing well!
I also have just been diagnosed with micobacterium abscessus from a recent sputum culture. I was diagnosed with MAC back in 2013 and was on the "Big 3". I have been MAC free for 4 and 1/2 years; however, this has just shown up in my lung from cultures from both NJH and Stanford. I am seeing pulmonologist on Friday to discuss further. Like you, I am anxious as this is described as "rapid growing". My doctor from NJH said since there were so few colonies, she would not put me on any medication at this time. I will let you know what my Stanford pulmonologist recommends when I see him this Friday. Thanks for reaching out, as I , too, do not know anything about this.