Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Mar 18, 2020

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 group.

NTM M. Abscesses, subspecies abscesses

Does anyone else have this NTM specific bacteria? What are you being treated with? Thank you! Diana

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@dolson0730

NTM M. Abscesses, subspecies abscesses

Does anyone else have this NTM specific bacteria? What are you being treated with? Thank you! Diana

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@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?

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@dolson0730

NTM M. Abscesses, subspecies abscesses

Does anyone else have this NTM specific bacteria? What are you being treated with? Thank you! Diana

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@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

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@erikas

@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?

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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!

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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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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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@dolson0730 Saying prayers for you. That’s a lot. @ irene5

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@irene5

@dolson0730 Saying prayers for you. That’s a lot. @ irene5

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Thank you! Staying positive! Hope you're doing well!

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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.

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@thielmann1

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.

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Hi @thielmann1 and welcome. Allow me to tag @irene5 @dolson0730 @megan123 @pop55 @windwalker and @alleycatkate and invite them back into this discussion.

Thielman, I can understand the anxiety at reading the description "rapid growing". I also read in another post that you've also just started chemo for recurrent breast cancer. Is your pulmonologist aware of that?

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@thielmann1

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.

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I have had a similiar situation happen to me where a MAC subspecies showed up in my sputum..it’s really nerve wracking when u get bad news..mine showed up last Oct, and is still showing on a recent sputum, but no side effects..this is the third bacteria over the years that come snd go..I’m sure this one will eventually do the same..I’m hoping the same will happen with you❤️🙏🏻

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@thielmann1

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.

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Hello, and welcome – receiving this kind of news is very upsetting, especially when you begin to read about MAC – just remember that you have this community to share your questions and concerns. As Jennifer (@megan123) told you, there has been some change in treatment protocols for MAC over the past few years, especially in looking closely at the number of "colonies" identified in the cultures when deciding whether to start antibiotics.

That said, since you are seeing the pulmonologist today, if the recommendation is the same – watch and see – you may want to ask about using increased airway clearance and hypertonic saline (7% vs the usual .9%) to try to keep the bacteria under control. Here is an article for you, with links to the underlying studies: https://bronchiectasisnewstoday.com/bronchiectasis-experimental-treatments/hypertonic-saline-solution/

Many on this group, including me, have managed to forego the rigorous "Big 3" and stay healthy… I managed to avoid any exacerbations for 18 months, my recent setback has been brought under control within a short time without antibiotics.

Good luck today!
Sue

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I have just recently been diagnosed with MAC. I have a lovely Infectious Diseases doctor but when he told me I think my mind was trying so hard to grasp what he'd said that I didn't really hear anything else he said and I couldn't think of any questions to ask him. Of course I have so many questions now. I'm hoping someone will be kind enough and honest enough to answer my questions, especially the first one.
(1) What does end stage MAC/NTM look like. Do we suffocate to death?
(2) I haven't started my treatment yet because I'm terrified of the side effects. The anti-biotics I have are Azithromycin, Ethambutol and Rifampin. Could anyone please tell me if they have been on these and what being on the treatment is really like.
(3) Does anyone really get completely healed from this disease?
If anyone would answer with anything I would so appreciate it.
Flamelilly7

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