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.

@egayle187

@dolson0730…I'm sure someone who has recovered from M. Absesses will answer. I had M Avian, but my doctors concentrated on meds. I found postural drainage on you tube and it worked for me. My infection was isolated to one lobe and I was able to drain the area with the right position .After that my dr started checking to see if I was using the technique each time I saw him. Drs can learn what works from us. The actions you take on your own will help you overcome the discouragement I have been free of MAC for 6 years now, because I drain every day an catch infections quickly. This group has a lot of help to offer. You are in good hands.

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Hi Diane, I was first diagnosed with NTM in August 2018 it was found to be abscesses With the subspecies abscesses.(This more specific dx )was found at the lab National Jewish health (NJH)in Denver 12/2018. I was diagnosed in Ireland but It (NTM) probably was brewing for several years before. I thought It was a terrible chest cold. An Irish Dr after changing atb (antibiotics) x3 thought it was tuberculosis because of a cavity in my right upper lobe of my lung on cxr(Chest X-ray)and the CDC from Atlanta called me and told me that I was not allowed back in the US until I was treated for it (TB) for at least 10 days. I was started on the big three rifampicin, ethambutol and arithromycin. I lost 15 pounds in 10 days from the Rifampin. Stopped the medication and came back to the USA. Back to USA I got a pulmonologist in Clearwater Florida where I live and he referred me to in NJH. The doctor at NJH is consulted by my pulmonologist although I also went to NJH 12/19 rehab and 12/20-I had surgery because of the cavity in my lung.
From the time I was diagnosed until three months after my surgery I had several IV ‘abts and oral abts. By March 2020 the abscessus was not seen in my sputum specimen’s —-😅however in April 2020 I showed Mac in my sputum. I am on clofazamine,ethambutol and arithromycin, and just started on Arikayce. Now also taking Ventolin per nebulizer Also Arikayce and of course continuing my (AC)with 7% Saline. I ordered my aerobija online from a medical Resp company my doctor sent a prescription for it but at that time it wasn’t covered
In Ireland I was coughing my head off and bringing up sputum every time—So sick and weak. I Learned about airway clearance (AC) with 7% normal saline (strong) & really makes you cough and that’s what you want is to get the stuff out of your lungs. If you have NTM you probably have bronchiectasis—-they go hand-in-hand. AC It’s a must everyday. It’s important to keep all of your medical records /doctor your lab reports , CT scans,everything.
I didn’t go into the medications because your sputum will show the resistance or the susceptibility to the medications that your doctor should put you on. This excellent Website is a series of Very good videos about NTM .
My abscesses hasn’t shown in the last two specimens I had done—So but so now its only Mac. But it’s enough! I’m sorry Diane I know this was a lot but I think that it’ll make sense if you watch that those videos. I’m sorry this is a lot of information I hope it makes sense please let me know if you have any other questions about the abscesses it can be nasty But you kind of get into a habit and routine and it seems to go by OK thank you and take care of yourself. So glad you belong to this connection everyone is so nice!! ——blue skies Judy
The videos are from 2016 but not a whole lot as far as I know has really changed.
http://Www.NationalJewish.org/ntmvideos2016

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@judyhodgern

Hi Diane, I was first diagnosed with NTM in August 2018 it was found to be abscesses With the subspecies abscesses.(This more specific dx )was found at the lab National Jewish health (NJH)in Denver 12/2018. I was diagnosed in Ireland but It (NTM) probably was brewing for several years before. I thought It was a terrible chest cold. An Irish Dr after changing atb (antibiotics) x3 thought it was tuberculosis because of a cavity in my right upper lobe of my lung on cxr(Chest X-ray)and the CDC from Atlanta called me and told me that I was not allowed back in the US until I was treated for it (TB) for at least 10 days. I was started on the big three rifampicin, ethambutol and arithromycin. I lost 15 pounds in 10 days from the Rifampin. Stopped the medication and came back to the USA. Back to USA I got a pulmonologist in Clearwater Florida where I live and he referred me to in NJH. The doctor at NJH is consulted by my pulmonologist although I also went to NJH 12/19 rehab and 12/20-I had surgery because of the cavity in my lung.
From the time I was diagnosed until three months after my surgery I had several IV ‘abts and oral abts. By March 2020 the abscessus was not seen in my sputum specimen’s —-😅however in April 2020 I showed Mac in my sputum. I am on clofazamine,ethambutol and arithromycin, and just started on Arikayce. Now also taking Ventolin per nebulizer Also Arikayce and of course continuing my (AC)with 7% Saline. I ordered my aerobija online from a medical Resp company my doctor sent a prescription for it but at that time it wasn’t covered
In Ireland I was coughing my head off and bringing up sputum every time—So sick and weak. I Learned about airway clearance (AC) with 7% normal saline (strong) & really makes you cough and that’s what you want is to get the stuff out of your lungs. If you have NTM you probably have bronchiectasis—-they go hand-in-hand. AC It’s a must everyday. It’s important to keep all of your medical records /doctor your lab reports , CT scans,everything.
I didn’t go into the medications because your sputum will show the resistance or the susceptibility to the medications that your doctor should put you on. This excellent Website is a series of Very good videos about NTM .
My abscesses hasn’t shown in the last two specimens I had done—So but so now its only Mac. But it’s enough! I’m sorry Diane I know this was a lot but I think that it’ll make sense if you watch that those videos. I’m sorry this is a lot of information I hope it makes sense please let me know if you have any other questions about the abscesses it can be nasty But you kind of get into a habit and routine and it seems to go by OK thank you and take care of yourself. So glad you belong to this connection everyone is so nice!! ——blue skies Judy
The videos are from 2016 but not a whole lot as far as I know has really changed.
http://Www.NationalJewish.org/ntmvideos2016

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Hi Diane this is a little tip —If you get an aerobika try to get one that has a nebulizer built on then you can get your treatment in nebulizer at the same time when using the aerobika.

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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.

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@pop55

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.

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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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@colleenyoung

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.

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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

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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.

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@judyhodgern

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

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Thank you for sharing! So glad to hear you did not have any major side effects. How long were you on the medication?

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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!

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@pop55

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.

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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….

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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
https://youtu.be/Ml5sJJW6cRU
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.

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@pop55

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
https://youtu.be/Ml5sJJW6cRU
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.

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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

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