Recent content by mep65

Thanks for posting!

Jean Paul, What I read is that the current protocol is one macrolide, one aminoglycoside and one more antibiotic. We were doing Azithromycin (macrolide), Amikacin (aminogycloside), and then either imipenum or cefoxitin. Since we are switching to tigecycline (a macrolide and replacing the...

I am so sorry to hear. My daughter,12, only recently started treatment for Abscessus and she is not able to tolerate cefoxitin or impenum and has been admitted three times in 2 months due to reactions but only for a short time each time. We are just trying tigecycline, but the doctors mention...

Amber, thanks for the info and for sharing your information, it is so helpful...especially as you were around the same age as my daughter is starting this medicine. I am concerned about the hearing loss... but reading your story is so inspirational and its great to read that the cochlear...

Stephen, Thanks so much for the info. Sounds like we are definitely starting with IV Amikacin... so I will make sure to ask her about the sounds that you mention. She will be getting weekly hearing tests, but I agree its best to be proactive and those are great clues that something is not quite...

TreasureGoddess, thanks for the response! I have done some searching and I have found a lot of great information so far -- although overwhelming at this point too. Thanks for the advise on going to the teens/young adult section. I was just doing overall searches. I was not expecting this, as...

We just found out my daughter 11 has mycobacterium Abscesses (not MAC which she has also cultured in past but now apparently clear) and will start the treatment process soon. right now they r recommending IV Amikacin, IV imipenem, and azithromycin for at least 5 weeks (up to 3months) until...

Thanks everyone for your replies, unfortunately I found out today that although my daughter cultured Mac in the past, the past two times she has actually cultured mycobacterium abscessus, so they are going to treat that with two IV (amikacin and imipenem) and oral azithromycin at least 3 weeks...

Mom2Brett... thanks for writing! We were thinking too about asking the CF Team to do a bronch to make sure we know everything that is going on before we start any long term treatment. Its so helpful to know they are treating him, even though he hasn't had any major symptoms -- of course besides...

4hats.. thank you for sharing your experience -- it is so helpful to understanding about MAC and symptoms and treatments. My daughter doesn't have significant symptoms, yet. A little tired here and there, but not recurring fevers or lethargy like you mention. I will look out for those from now...

Mommy w/ cf. Thanks so much for your response and yes it is extremely helpful!! Its helpful to know there are other options besides IVs and what that treatment entails, and that you've had some success with it. Its also very helpful to hear that you recommend not waiting based on your...

Autumn, Thanks so much for the response!! I am trying not to get too concerned, but do like to do my research prior to the doctor's visit --- but great point that the CF Team may have their own thoughts on the best way forward that I am not even thinking of. I also read that National Jewish...

I am a long time viewer, but first time writer on this site. My daughter- age 12, who has CF, just cultured positive for M. Avium complex (MAC) NTM for the third time in 12 months. I was told by the doctor two months ago, that if she cultured positive again that we could have a discussion on a...