Connect
Looking for info and treatment for Mycobacterium abscessus
Hi Gang!
I have been on this forum for a while, being diagnosed with Bronchiectasis and mycobacterium Avium complex.
(MAC). Have been on treatment for Mac since June 2022 and attained culture conversion in November 2022 with plan of continuing the big three until the end of the year - if still clear at that point. Yesterday I got a curveball on a random sputum test that I did in August. That says I am still clear for Mac but now have mycobacterium abscess. I have an appointment with pulmonologist at UNC on Friday, September 29 luckily. However, I need some experienced advice/truth regarding treatment, success rate, the bottom line of how this is a game changer for me. Quite frankly, I am sick of researching this disease and
It’s effects on my physical health, emotional health, peace…
Thanks
Dee
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@nana43 Oh Dee, how frustrating. There is a new 2023 video from NJH about treating NTM, with two specifics that may interest you.
Particularly, he stresses the need for two cultures showing the bacteria before beginning treatment. And shows graphically how it progresses with and without treatment.
Near the end of the video, he shows the latest specific protocol NJH recommends for M abscessus.
I understand how frustrated you are feeling, and am sending you my very best healing thoughts.
Would you please let me know what the doctor says on the 29th.
Sue
-
Like -
Helpful -
Hug
2 ReactionsHi Dee
I posted earlier with exactly the same problem. Like you my most recent sample was free of mycobacterium intracellulare but showed up abscessus. I’m so disappointed. I’m due to see my respiratory consultant next week and will find out more then. Will let you know.
-
Like -
Helpful -
Hug
3 ReactionsCan someone explain to me what an abscesses is? And how does the sputum test see that? Or know that? Wouldn't that be the same as testing positive again for Mac on the sputumn culture? I'm just asking because I had a large abscessed cavity in my lung. I just had a CT scan done a week ago and it has completely resolved. I'm not really sure what that means yet because I don't see my infectious disease doctor until middle of November. But it said on the CT scan that The abscess/ cavity has completely resolved, there is no nodules and no consolidation. I didn't think that cavity is could go away. And I just thought the abscess was part of the cavitery Mac. I'm really confused! If someone could just explain this in layman's terms, I'd really appreciate it. How can you have mac abscess but be Mac negative? or am I misunderstanding something?! Thanks everyone!
Angela
-
Like -
Helpful -
Hug
2 ReactionsHi Angela!
It is confusing! Non -Tuberculosis Mycobacterium (NTM) is diagnosed in many different forms. Mycobacterium Avium Complex (MAC) is the most common and a slow growing bacteria. Mycobacterium Abscesses is another form but a fast growing bacteria that can cause structural damage to lungs and has less favorable treatment outcomes. There are many others as well. There is a 50-50 chance that if you get one, you will become re-infected with it or another form. Quite frankly, I don’t know much about cavities, except that it is another component of the disease that makes treatment more difficult.
I hope others with more experience will add to this and be helpful.
All the Best,
Dee
-
Like -
Helpful -
Hug
5 ReactionsCavities can heal themselves, they can be surgically removed. It depends on how much scar tissue has formed in and around it from previous infections. Due to scar tissue, mine are permanent. Cavities tend to trap infections over and over.
-
Like -
Helpful -
Hug
4 ReactionsHi Sue!
Doctor wants to take the wait & see approach. He says my Bronchiectasis is mild and that this recent culture showed no detection of MAC. My CT scan from July still looks relatively good. He acknowledges the mycobacterium abscessus and it’s serious nature but feels that I should continue Big 3 until end of year, do another CT scan then, and re access the situation at that time. He has standing orders for Sputum testing every 2 weeks (HA!)) but thinks that since I have been able to produce sputum during exerbation that there is no need for evasive bronchoscopy right now. He thinks when I come off big 3 in December that I should start feeling better physically and he wants my body to have some rest from meds, says absessus treatment is harsh.
What do you think?
Thanks! Dee
HI Dee - I think I would like your doctor - except the part about a culture every 2 weeks? But I guess if you have sputum, you might as well put it to good use - unless your insurance begins to object.
Do you know where they are sending it for the cultures?
Sue
-
Like -
Helpful -
Hug
1 ReactionHi Sue!
Right now he put the orders in locally for me at LabCorp. I did message him and ask that the orders include testing for sub species and colony count, if abscess is detected again. However, he has not responded to that.
Dee
Hi Dee
I replied to you some time ago as I am in the same position as you - clear of myco intracellulare but now testing positive for abscesses. I saw consultant last week and so far the plan in to continue the big 3 and monitor the abscesses with regular ct scans.
Hope you’re doing ok.
Hi!
Thank you for the info!!
Yes, same for me on “watchful waiting”. Hard pill for me to swallows with my Type A personality—LOL!
My daily fever is back and coughing/chest congestion is increased….not to mentioned anxiety through the roof!! I guess I am still processing it all. How are you? How long have you been on big 3?
Dee