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.
Dr. can write a prescription for aerobika. I have the AffloVest. It's portable and I like it. I didn't research the others and it is good to do research to find out which one might be best for you. I would then call that company and ask what are the requirements for your insurance to pay for it (having productive cough; not getting all up when you nebulize, etc.). I would then go the extra mile and ask them what must your doctor write- if they could give you the wording that is acceptable to the company. You are not asking anyone to commit fraud; you just want to know exactly what must be written for reimbursement purposes. If for some reason your pulmonologist or ID doctor doesn't follow through, you could have your primary fill out appropriate forms and put in writing what must be there for your insurance to cover it. Vests are enormously expensive so you must get it covered by insurance.
I ordered my Aerobika on line and saved $40.00. They are normally about $90 and I was able to get one for $52.00. But speak to you doctor about using one
@dolson0730 Hello. How are things going for you? Did you ever get your Aerobika device? I was given a prescription for one, but have yet to get one. If you did get one, did you find that it helped with bringing stuff up?
I just ran across this interesting article on a "new" treatment for Mycobacterium abscessus. Combined doses of three antibiotics – amoxicillin and imipenem-relebactam Supposedly works 100% of the time with minimal side effects. Maybe something in the treatment pipeline that we are all looking for. I would think it should work for resistant MAC as well. http://outbreaknewstoday.com/cystic-fibrosis-new-treatment-found-to-kill-mycobacterium-abscessus-infection-87703/
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!
@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.
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.
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.
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.
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?