<span style="font-size: small;">I am new to this forum,but have learned a lot from reading the other posts. My daughter, Jessica, is 15 with CF and has been culturing atypical mycobacterium abscessus, in her lungs, for about 2 years now. She has been on IV antibiotics for almost a year,to hopefully eradicate it, with no success. Does anyone else culture this bacteria and have you had any success in treating it?
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Atypical mycobacterium abscessus
- Thread starter jessconn
- Start date
T
TonyaH
Guest
My son has been dealing with mycobacterium abcessus for about two years as well. He has never done a year's worth of treatment, but has had 6 to 8 week courses of ivs periodically in the past two years. He is currently on week 6 of an 8 week treatment.
He does not go longer than three months without a clear culture. I have decided that we are never really eradicating the abcessus with treatment, but just knocking it back some, much like we do with pseudomonas. It is a very tricky, scary bacteria.
I wish I had answers for you. I know some who have consulted with NIH in Bethesda and National Jewish in Denver as they are the gurus on NTMs. We have not taken that step yet, as my son is seen at UNC and his CF doc worked with one of the doctor's at NIH when he was doing his fellowship. The two of them maintain a good working relationship an our doc has consulted with NIH on our behalf to come up with treatment plans.
I don't know where you live, but perhaps a visit to one of those centers would be of benefit. May I ask what treatments you have tried so far?Through the yearsAndrew has tried tigicyclene, amikacin, meropenem, zyvox, clarithromycin, azithromycin, inhaled amikacin, cefoxitin, and ceftaz. He had allergic reactions to both the cefoxitin and ceftaz, so we are now staying clear of any cef meds. He is resistant to everything else, so we just try different combos of these medications. Are you treating with triple ABX? Protocol for m. Abcessus does recommend triple anx treatment.
He does not go longer than three months without a clear culture. I have decided that we are never really eradicating the abcessus with treatment, but just knocking it back some, much like we do with pseudomonas. It is a very tricky, scary bacteria.
I wish I had answers for you. I know some who have consulted with NIH in Bethesda and National Jewish in Denver as they are the gurus on NTMs. We have not taken that step yet, as my son is seen at UNC and his CF doc worked with one of the doctor's at NIH when he was doing his fellowship. The two of them maintain a good working relationship an our doc has consulted with NIH on our behalf to come up with treatment plans.
I don't know where you live, but perhaps a visit to one of those centers would be of benefit. May I ask what treatments you have tried so far?Through the yearsAndrew has tried tigicyclene, amikacin, meropenem, zyvox, clarithromycin, azithromycin, inhaled amikacin, cefoxitin, and ceftaz. He had allergic reactions to both the cefoxitin and ceftaz, so we are now staying clear of any cef meds. He is resistant to everything else, so we just try different combos of these medications. Are you treating with triple ABX? Protocol for m. Abcessus does recommend triple anx treatment.
Hi Tonya, thanks for replying to my post. Like your son, Jess has been on all of the same meds. She has had reactions or problems with, cefoxitine, tigecycline, zyvox and amikacin. She has been on a variety of combinations and is currently on; Amikacin, clarithromyacin and zyvox. I just hate all of these anti's and to think about what it is doing to her body.
Jess has not had a negative culture/smear of this bacteria for at least a year. Is your son smear positive or just culture positive? Our CF doc has also been in touch with Dr. Olivier from the NIH. We are probably going to be taking a trip up there soon, to see if a second opinion can help. We live in St. Louis and have great docs, but they are also encouraging us to do what we need to do, to help get control of this nasty bacteria. They say that our kids can be doing pretty good and then all of a sudden, this bacteria, takes control and causes them to go downhill quickly.
I know each kid is different, but what mostly scares me is that we had a CF friend, who was only 12, and fought NTM abscessus for a couple of years and then passed away unexpectedly. This broke my heart! I don't mean to scare you, but this is a horrible bacteria, on top of there CF.
If you don't mind me asking, has your son ever cultured stenotrophomonous(sp?) or aspergillus? I just read an article about how these 2 bugs have had some corallation to CF people having this NTM abscessus.
Thanks again for your thoughts, I hope your son does well and kicks some NTM abscessus butt!!
Jess has not had a negative culture/smear of this bacteria for at least a year. Is your son smear positive or just culture positive? Our CF doc has also been in touch with Dr. Olivier from the NIH. We are probably going to be taking a trip up there soon, to see if a second opinion can help. We live in St. Louis and have great docs, but they are also encouraging us to do what we need to do, to help get control of this nasty bacteria. They say that our kids can be doing pretty good and then all of a sudden, this bacteria, takes control and causes them to go downhill quickly.
I know each kid is different, but what mostly scares me is that we had a CF friend, who was only 12, and fought NTM abscessus for a couple of years and then passed away unexpectedly. This broke my heart! I don't mean to scare you, but this is a horrible bacteria, on top of there CF.
If you don't mind me asking, has your son ever cultured stenotrophomonous(sp?) or aspergillus? I just read an article about how these 2 bugs have had some corallation to CF people having this NTM abscessus.
Thanks again for your thoughts, I hope your son does well and kicks some NTM abscessus butt!!
T
TonyaH
Guest
Hi Missy,
Dr. Olivier is the NIH doctor our primary CF doc works with as well <img src="i/expressions/face-icon-small-smile.gif" border="0">
Andrew's AFB smears have come back positive every time but once since his diagnosis with NTM. All of them have grown out to be identified as m abcessus except one, which happened to be damaged in the lab and could not finish growing. He just can't seem to kick it.
I also wanted to clarify that Andrew is now 14. I know my signature says he is 11...I really need to change that!
You are right about the possible correlation between steno/aspergillus/ntms. And yes, Andrew has from time to time cultured steno. Aspergillus is a bigger issue for him than steno. He has cultured positive for aspergillus for at least 6 years now and also has ABPA, so his aspergillus does not help matters any.
I'm sure you've also read about maintenance azithromycin and prednisone being no-no meds for those with m abcessus.
Try to remember that for every patient you hear of with poor outcomes with NTMs, cepacia, etc..you can find someone else who is managing quiet well. Education is our best defense. I look forward to sharing information with you! The more I can learn the better it is for Andrew and I'm sure you feel the same way!
Dr. Olivier is the NIH doctor our primary CF doc works with as well <img src="i/expressions/face-icon-small-smile.gif" border="0">
Andrew's AFB smears have come back positive every time but once since his diagnosis with NTM. All of them have grown out to be identified as m abcessus except one, which happened to be damaged in the lab and could not finish growing. He just can't seem to kick it.
I also wanted to clarify that Andrew is now 14. I know my signature says he is 11...I really need to change that!
You are right about the possible correlation between steno/aspergillus/ntms. And yes, Andrew has from time to time cultured steno. Aspergillus is a bigger issue for him than steno. He has cultured positive for aspergillus for at least 6 years now and also has ABPA, so his aspergillus does not help matters any.
I'm sure you've also read about maintenance azithromycin and prednisone being no-no meds for those with m abcessus.
Try to remember that for every patient you hear of with poor outcomes with NTMs, cepacia, etc..you can find someone else who is managing quiet well. Education is our best defense. I look forward to sharing information with you! The more I can learn the better it is for Andrew and I'm sure you feel the same way!
ajlindsley
New member
Hi Jarron: My daughter had her first culture of m. abcessus last June. She had her 2nd positive culture 8 weeks later. They have not started treating her yet. Like your son her PFTs were stable and actually even improving. The treatment can be hard on their system so they were waiting for her to show symptoms. Since the M. abcessus culture, she is now culturing pseudomonas and they are treating that. Did they find it during a bronch? Have you checked out the National Jewish Hospital's (in Denver) website. They are one of the leading hospitals for treating NTMs. They have some good information on there.
D
Deb
Guest
I grew abcessus after aspirating into my lung. I was on IV treatment for 6 months and have not cultured this since. I highly recommend the Infectious Disease Department at National Jewish in Denver. They will work with your local physician.
Since I first wrote this blog, many things have happened. In regards to starting treatment for the abscessus, you have to have at least 2-3 positive cultures. At first, we were only able to get the positive cultures from a bronch, but now they are from sputum cultures and have become smear positive. It probably is a good idea to wait until there is evidence that it is causing problems to start treatment. The treatment is very aggressive and hard on the body. They started treatment on Jess because she was having lots of exacerbations and decrease in PFT's.
We were unable to see Dr. Olivier at NIH, due to his busy schedule and not starting new pt's for 6 months and our docs did not want to wait that long. They had been in contact with him, for any thoughts he had on treatment.
Our docs then recommended National Jewish in Colorado. We had our first consultation back in September. It is a wonderful program! Very comprehensive and included all the different docs from all the diagnoses that my daughter has. Infectious disease, CF, allergy, Immunology and even a therapist to see how she was doing psychologically. We were there for about a week, she had several tests completed and they went over everything with us. They have made recommendations and been in contact with our docs since then. We are going back for a follow-up in February. They have very specialized labs and were the ones who got the positive culture from sputum. We were basically told that it won't be eradicated at this point, and we have to treat to suppress. She is always on at least 3 IV or oral/inhaled antibiotics.
We were unable to see Dr. Olivier at NIH, due to his busy schedule and not starting new pt's for 6 months and our docs did not want to wait that long. They had been in contact with him, for any thoughts he had on treatment.
Our docs then recommended National Jewish in Colorado. We had our first consultation back in September. It is a wonderful program! Very comprehensive and included all the different docs from all the diagnoses that my daughter has. Infectious disease, CF, allergy, Immunology and even a therapist to see how she was doing psychologically. We were there for about a week, she had several tests completed and they went over everything with us. They have made recommendations and been in contact with our docs since then. We are going back for a follow-up in February. They have very specialized labs and were the ones who got the positive culture from sputum. We were basically told that it won't be eradicated at this point, and we have to treat to suppress. She is always on at least 3 IV or oral/inhaled antibiotics.