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!!!

@alleycatkate

Hi @dolson0730 …Here is a basic video by National Jewish Health on nebulizing. After I nebulize, I bend at the waist over the sink and huff, huff, huff to bring up what sputum that I am able to "evict". Hope this helps. Kate

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Thank you! I appreciate your advice!

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@128128terry11t

You do so much already. Would it be possible for you to nebulize twice a day instead of once; I realize that you don't get up much when you do so it may not be worth the time (but things may improve if you use the 7%)? Dr. Huitt advised me to do it twice a day because more mucous plugs showed on my CT. When you do see a respiratory therapist, please ask him or her about using a fluttering device like an aerobika when you nebulize. Might you be eligible for a vest? Dr. Huitt suggested that I could use the vest when I nebulize. I appreciate your sharing your experience; thank you. Wishing you good luck and success.

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Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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@dolson0730

Thank you! I appreciate your advice!

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Do you happen to have a video to share regarding the actual breathing techniques? or huffing? Thank you!

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@dolson0730

Do you happen to have a video to share regarding the actual breathing techniques? or huffing? Thank you!

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@dolson0730 …Wow! I learned watching these too!!

or

another:

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@dolson0730

Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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@dolson0730 I ordered my Aerobika on line. Although my Dr told me to use it, he never gave me a Rx for it. But it would be wise to have a respiratory therapist instruct you how to use it. I originally Googled how to use it, but my resp. ther. showed me a different way than what I saw on line. I do a total of 50 breaths twice per day with huff coughing in between. A Huff cough is like trying to fog a mirror. First take a deep breath and then Expel as much air as you can. 10 breaths sitting upright then huff, huff. 10 breaths laying on my right side with left arm over head. Then 10 on my back. Then 10 on my left side with right arm overhead and then 10 on my back. Hope this helps. Others may do it differently.
Gina

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@dolson0730

Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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I honestly don't know? I just thought you probably would need a prescription for the aerobika & vest, and that was the route to follow?

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@dolson0730

Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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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.

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@dolson0730

Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!

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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

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@dolson0730

I honestly don't know? I just thought you probably would need a prescription for the aerobika & vest, and that was the route to follow?

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@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?

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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/

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@windwalker

@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?

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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!
Diana

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@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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