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.
Welcome to Mayo Clinic Connect, @pop55. You'll notice that I moved your message to this existing discussion called "Just found out I have mycobacterium abscessus!" I did this so you can connect with others who have experience with m. abscessus, like @jammer @128128terry11t @nannette @dolson0730 @poodledoc @judyhodgern and others. If you click VIEW & REPLY in the email notification, you can scroll through the past messages, including some great videos.
Pop55, how are you feeling about not going on treatment at this time?
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Thank you! I have found a great DR in my area on NTM..org. Its a very scary diagnosis and the treatment sounds terrible. I am hoping to find someone else who has experience with M abscesses and hear what they did. I am also trying to get a consult at National Jewish before I jump into treatment.
Hi Pop55 welcome to a very informative website for NTM. Everyone is very nice and you will gain lots of info!!It can be overwhelming at first. I was diagnosed 2 yrs ago with a large cavity in my lung—m abscessus. My pulmonologist consults with my Dr at NJH. I have had several iv’s and meds by mouth along the way. No allergies or side effects🙏🏻I had my upper rt lobe removed 12/12/19. I am high anxiety person but find With taking each day and doing the Dr plan—-I have gotten rid of abscessus and now have MAC—but it’s easier to Rx and cure—they say. Don’t cough as much—I push my self to keep active—-hard with SOB and fatigue . Ask any questions—we are here to help and encourage! Judy
Also pop55—I had damage to my lung when first dx—cavity in lung, and I was coughing all the time and productively—-it was awful—couldn’t sleep so my docs and I felt I had to do something.
Thank you for sharing! So glad to hear you did not have any major side effects. How long were you on the medication?
Hi – I've just found out the same thing (August 12)….I'm still trying to figure out what it really means! It came as a total shock to me because I was feeling fine until I had a bronchoscopy. After the bronchoscopy and diagnosis, I started feeling physically ill: tightness in my chest, overall lethargy and fatigue, and just a general "sick" feeling that never goes away. So, I'm wondering if it's possible that a bronchoscopy can actually activate colonized bacteria by "stirring things up" in the lungs somehow…..has this happened to anyone else? I'm depressed and scared, too!
I have had 3 recent positive cultures for M abscesses. My Dr is holding off on treatment for now as I am stable and have no real symptoms yet. I have had bronchiectasis since 2007 but had not had a sputum culture until March this year. Looking to see if anyone else in the group has M abscesses and if you had treatment.
Hi pop55! I'm new on this forum as well, and have also been diagnosed in August with M. Abscessus. My doctor has initially indicated holding off on treatment, but strangely, since I had a bronchoscopy, I've started feeling quite sick–deeply fatigued, and with a weird general overall "sick" feeling, with chest tightness. I'm beginning to think I want to do the treatment, no matter how bad it is, because currently I have no energy to enjoy life, and I figure it's better to get it done sooner rather than later….
Hi Pandora, Why did your Dr do a Bronchoscopy? Did you have some symptoms? Abscessus is a scary diagnosis but the more you learn about it the better off you will be. Watch this u tube video by Dr Daley from National Jewish
Do you know what subspecies of Abscessus you have? You want to make sure you have a doctor who is familiar with NTM and Abscessus before you start treatment. There are 3 subspecies of Abscessus and the treatment is different for each one.
Hi Pandora! Welcome!! Learning about your disease to advocate for ourselves with Our doctors that May not know all the ins and outs of it. I had abscesses-with sub species “abscesses“ My doctor knew how to treat it specifically.
Abscessus is a tough mycobacterium and I have had several Oral and IV treatments Over last 2 years. I think I may be free of abscesses now—-my doctor knew the treatments For my subspecies and Knowing the culture and its sensitivities ——-that are “so” important to find best antibiotic to use. I was coughing and feeling terrible I feel much better now. The Best to you! Judy
I have not gotten an Aerobika device yet. I am overwhelmed by all this and not sure how I get one, or if I need one. I ask my Int Med Dr, Pulmonologist and ID Dr about airway clearance and they do not recommend that, but say I can do airway clearance if I want. I get so confused when professionals seem wishy washy about treatment. I have M Abbscessus. Anyone else care to share their treatment of M. ascessus? I started out on Linezolid 2x daily, Amicacin IV infusions 2x daily, and Tigecycline IV Infusions 2x daily. After 1 month on Linezolid I lost 14#, couldn't eat, drink & all I could do was sleep between infusions. My ID DR took me off Linezolid after 30 days. I was on Amicacyn IV's for 5 months then lost hearing permanently so was taken off of that. I am now only on Tigecyline IV Infusions 2x daily, and ID Dr says 4+ more months which will make it 1 year. Has anyone else been cured of Abscessus by just 1 antibiotic? Tigecycline? I am so discouraged. Thank you!
I do airway clearance twice daily & an extra when I have an exacerbation…. it definitely works when done correctly.
I think there are a lot of patients who don't do it because it's time consuming and messy so patients like my mom give up…..and so some doctors may have become frustrated & given up on suggesting it.
Ive got MAC, and after my Super D Navigation Broncho9scopy. which confirmed it, I had test which showed low gamma globulin (low natural immunity) and also CT shows some but not a lot of bronchiectasis. I had a really dry cough for years. When I got on the MAC investigation in 2018, I could not even get a sputum sample, and then when I finally did I had like 3 colonies, but then had 60 colonies a year ago out of blue, when I was feeling fine, after doing a lot of airway clearance for the preceding week. Sometimes I would go through a couple months of chills, and increased coughing and then that would resolve on its own. I've pretty much quit doing airway clearance because I hate it, but also I switched doctors and the new one does not particularly encourage it. Reading about all of you doing the airway clearance has motivated me and I am going to start again, but Im in wildfire smoke right now and I really do not know if Huff coughing is good in this environment. I also have used a Respirtech vest 2 years ago, but shortly after starting it (and it really did produce mucous after my cough being totally dry) I got a concussion (about 20 months ago) and couldn't use the vest afterwards, it because it jiggled my necking triggered the concussion symptoms — but that sensitivity is over I think now. So I think I will go back to it. My daughter in law suggested I find a TV program I like and watch it when I use the vest to encourage me. Im not a TV watcher so this would be a treat, I could binge watch some ridiculous program. I travel a lot. and I cannot haul that the vest apparatus with me. But— I am very conscientious to do my infusions weekly with Hizentra, which is subcutaneous gamma globulin from pooled blood supply ( I use two needles in abdomen with tubing to syringe with pump for 1 hour 15 min– 6ml). For last 6 months Ive had a very different cough– I got the flu in January, and symptoms are a lot like I read about COVID so I end up getting tested for COVID. Also, the infusions trigger flu-like symptoms sometimes, but not others. So that's my story. I have one infectious disease doctor who is convinced a lot of my problem is GI reflux– the gastro doc says no.
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