Atypical Mycobacterium Abscessus Advice

K

Krazy4Katie

New member
My daughter is 16 with atypical mycobacterium abscessus. We recently have been told by our doctors, they no longer are not sure how to treat due to her multiple drug allergies, drug resistance, and the hearing loss she's acquired from multiples antibiotics. They haven't given up, but yet just juggling meds and treatments around to see what works. Her PFT's remain at 44%. We've been referred to Dr. Ken Olivier at NIH and anxiously waiting for that appt. Just wondered if anyone else out there has the same similiar problems my daughter has. She's on Azithromycin, Zyvox, and starting on inhaled Amikacin. She's been on the combo before Doxy, Azith, and Zyvox before. I just feel like we've hit a brick wall and running out of options. Any input would greatly be appreciated.
 
M

momofcfprincess

New member
Hi
Im sorry your daughter is having so much trouble with the myco abscesses. In 2007 my daughter also cultured myco found during a bronchoscopy. She was referred to a infectious disease doctor and treated with IV meds for 6 weeks.The doctor took her off zithromycin because he said you shouldn't take it with myco? My daughter has not cultured it since but I always wonder if it is still lurking.... my daughter has had sooo much trouble too like yours, requiring about 12 hospitalizations in the last 4 years. Her lung function is 51% and when ill it is very low 30's. Like your daughter she is becoming resistant to a lot of antibiotics. She is constantly on oral antibiotics and when she finishes them about 2 weeks later she gets sick again. Just a repeating cycle. My daughter also cultures PA, MRSA. Please let me know how the upcoming appointment goes. Feel free to message me!
 
K

Krazy4Katie

New member
Thanks for responding. I'm sorry to hear about your daughter's battle, it sounds very similar to mine. The first myco culture's been negative (meaning not an active infection), but still always comes back positive after the longer wait. Our CF doc and our inf disease docs are always in constant communication, juggling back and forth between meds. In our case our docs recommended the azith, zyvox & doxy for longterm course for the myco. But just recently dropped the doxy & starting Amikacin by neb. Our CF team is at Johns Hopkins and we love them, but in reality it seems like we are just stuck. She also cultures plenty of PA as well, and constantly on oral meds, just like your daughter. Take care and wishing your daughter a healthy winter.
 
D

Diana Blue

New member
My son, 17 now, cultured m. Abscessus for first time last year. He went ftom being relatively healthy, onlyhospitalized once, to mnths of ivs and over yer orals. He had - smears for awhile, and just got the news Sat heis smear + again. Docs plan to put him on iv amekacin, cefoxitin, he just started oral levofaxacin, been n larithromycin and mnocycline. The list is so long.

we are going to try colloidal silver whch has some very promosing results. Has anybody tried? Success or negative reponse?

diana
 
G

Guest

Guest
Diana, how did your son do with the IV amikacin and cefoxitin?
 
You must log in or register to reply here.
Top