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Sun, Jun 28 9:27am · Tests show Mycobacterium Chimaera in MAC & Bronchiectasis

Thank you very much; your responses are very helpful. Dr. Huitt (National Jewish) wants to wait and see what my next culture may or may not reveal. I will keep you informed of the outcome. I permitted an ENT to put a scope down my throat to check on whether there was a lot of mucous. I am wondering if this caused it. I will never know. Bottom line: We need to say "no" to non-essential scoping. Wishing you all safety during these difficult times.

Sun, Jun 28 8:05am · Tests show Mycobacterium Chimaera in MAC & Bronchiectasis

Few years ago sputum culture showed MAI. Was on Big 3 for a couple of years (at end clofazamine substituted for ethambutol due to vision problems). Last culture showed 50 colonies of chimaera. Wondering how many of you had chimaera show up; were you treated; if so, what and for how long? Anyone simply have it go away with just airway clearance techniques? Had 5 colonies of m.abscessus show on another culture. Anyone with that type of experience as well?

Sat, Apr 11 2:51pm · Just found out I have mycobacterium abscessus! in MAC & Bronchiectasis

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.

Sat, Apr 11 9:40am · Just found out I have mycobacterium abscessus! in MAC & Bronchiectasis

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.

Fri, Apr 10 10:01pm · Just found out I have mycobacterium abscessus! in MAC & Bronchiectasis

I am very grateful to have Dr. Huitt BUT she is retiring in a little under 2 years. She is irreplaceable.

Fri, Apr 10 10:49am · Just found out I have mycobacterium abscessus! in MAC & Bronchiectasis

Thanks, Sue. Do airway clearance twice a day. I am trying!

Thu, Apr 9 10:37pm · Just found out I have mycobacterium abscessus! in MAC & Bronchiectasis

I am so grateful for this helpful compilation. I remember Kathryn but did not remember that she had abscessus. Every time I say "phooey" I think of her. These replies have lessened my fear and anxiety significantly. Reading that I grew out abscessus other than MAI had me in quite a tailspin. Thank you.
Forgot to ask @sueinmn: did the different mycobacteria's numbers stay small; did they disappear completely, or grow larger? Did the doctor say what some of the reasons for the positive cultures were? Thank you both again.

Thu, Apr 9 10:03pm · Just found out I have mycobacterium abscessus! in MAC & Bronchiectasis

I am feeling ok. Sputum a little more yellow than usual but that could mean a million things. The doctor said for me to send another sputum sample 3-4 months after I had sent this one. I was alarmed because it was abscessus. Thank you for sharing that you had different mycobacteria cultures in the past. By the way, doctor is Dr. Huitt from National Jewish. Better known as the "Queen of Mac". I see a local doctor as well.