We just found out today that our 4 year old daughter has this bacteria so we are quite scared. We were told that it might go away on its own, but if not, she could end up on very strong IV treatments. Our last hospital stay with IV didn't go very well and we are pretty scared about this. Her last IV treatment were for pseudemonis and from what I heard, these antibiotics are much stronger. Can anyone offer some insight on the bacteria and how it progressed for them or their child? Also, if your child ended up in the hospital on IV, how did it go? We are thankful for any information you can provide. <img src="i/expressions/rose.gif" border="0">
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mycobacterium chelonae
- Thread starter anonymous
- Start date
Thank you Carey, my name is Keri too <img src="i/expressions/face-icon-small-smile.gif" border="0"> It is not common, like other bacterias, in fact, they don't even know how she got it. CF patients do get it, but not by human contact. It is a very mysterious bacteria. From what I have read, patients with low immune systems, like AIDS, or lung problems, like CF that are harmed from it if they get it. You can also get it through skin infections...there is more to it, but that is another form of it. Thank you for keeping her in your prayers, it means a lot to us! We will keep you posted.
rachelsmom
New member
I am not sure if my daughter Rachel who is 8 yo had the same type, but a couple of years ago she also had mycobacterium. It was very scary and at first they thought she had TB. We were isolated at the hospital and I was very overwhelmed. I have no idea how she picked this up.
She took three oral meds for one year. They were Rifampin, Biaxin and Myambuthol. She did great for the year she was on them. They did a bronch after the year and she did not grow it! We are getting ready to do another Bronch this Friday and I am praying she doesnt have it again.
She is very healthy for the most part and the doctors told me that it doesnt mean the mycobacterium will be there forever or cause her a ton of problems. I hope this helps.
Teri
She took three oral meds for one year. They were Rifampin, Biaxin and Myambuthol. She did great for the year she was on them. They did a bronch after the year and she did not grow it! We are getting ready to do another Bronch this Friday and I am praying she doesnt have it again.
She is very healthy for the most part and the doctors told me that it doesnt mean the mycobacterium will be there forever or cause her a ton of problems. I hope this helps.
Teri
Hi Keri,
Have you heard any more yet? Thanks for the info - I'll have to learn more about this bacteria. Do you know if IV antibiotics work effectively with this or is it something you'll have to monitor for the long haul (kind of like P.A.?). I'm anxious to hear what you find out and how your daughter is doing. Hang in there!
Carey
Have you heard any more yet? Thanks for the info - I'll have to learn more about this bacteria. Do you know if IV antibiotics work effectively with this or is it something you'll have to monitor for the long haul (kind of like P.A.?). I'm anxious to hear what you find out and how your daughter is doing. Hang in there!
Carey
I haven't found out anything else yet. I think the IV treatment is effective, but I don't know how often you have to monitor it. Right now, they want her cultured once a month until it hopefully goes away on its own. I will let you know if I find out anything else...thanks for keeping her in your thoughts and prayers!
Hello,
I have this bacteria as well. I start treatment option #2 tonight for it.... i will be on IVs at home for a minimum of 6 months. I am on 3 meds for it. Amikacin(IV), Zithromax(oral), and another IV one that starts with a C and is very long and hard to pronounce. I was told it won't go away but that it could be dormant, and not doing anything/damage. However they don't seem to know if mine is doing damage right now they are just assuming that it is because i am not getting better whenever they treat the other "typical" bacterias.
Will let everyone know if the IV meds help.
Julie
I have this bacteria as well. I start treatment option #2 tonight for it.... i will be on IVs at home for a minimum of 6 months. I am on 3 meds for it. Amikacin(IV), Zithromax(oral), and another IV one that starts with a C and is very long and hard to pronounce. I was told it won't go away but that it could be dormant, and not doing anything/damage. However they don't seem to know if mine is doing damage right now they are just assuming that it is because i am not getting better whenever they treat the other "typical" bacterias.
Will let everyone know if the IV meds help.
Julie
Hi Julie - are you going to be on IV for a constant 6 months or is it on and off. Just curious, that kind of scares me. How old are you? I can't imagine putting my 4 year old on IV for 6 months. She was on home IV for 12 days when she was a little over 1 and that was really hard.
Thanks for any info. and please let us know how you are doing <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for any info. and please let us know how you are doing <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Julie - are you going to be on IV for a constant 6 months or is it on and off. Just curious, that kind of scares me. How old are you? I can't imagine putting my 4 year old on IV for 6 months. She was on home IV for 12 days when she was a little over 1 and that was really hard.
Thanks for any info. and please let us know how you are doing <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for any info. and please let us know how you are doing <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi,
I'm 39 and have had mycobacterium abcessus, originally the docs thought it was m. chelonae. I was diagnosed with cf at 19 after having been sick for a long time. At that time I was found to have the m. chelonae. The docs didn't think it was causing any problems for me so decided not to treat it and just kept an eye on it. Finally, when I was 32 I started getting pretty sick, fevers, fatigue, weight loss and increased cough. They did a bronch and found tons of the m. abcessus so had to treat it. I was on IVs for 6 months, Amikacin, Biaxin and also Ceftazadime. It was a challenge to be on them for 6 months! I had a port put in but tolerated it ok, except for a little hearing damage. After a year went by I had a recurrence of the infection, and was treated for another 6 months. This was when I was 33 years old. After that 6 month treatment my doctors put me on inhaled amikacin and Biaxin every other month prophylactically (sp?) and I have been well since. I'm now 39. My cultures have been negative (altho' I know that doesn't mean it is truly gone..) I am continuing on the every other month regime of Amikacin/Biaxin and I really think that has made a huge difference. The National Jewish Center in Denver has a lot of information on mycobacterial infections, they specialize in respiratory diseases. Mycobacteria are typically very slow growing and require long treatments with multiple antibiotics. For that reason they are usually only treated if causing a problem. Seems as though they can be 'dormant' for a long time- 13 years in my case. Hope this helps! Good luck to you and your daughter. Kim
I'm 39 and have had mycobacterium abcessus, originally the docs thought it was m. chelonae. I was diagnosed with cf at 19 after having been sick for a long time. At that time I was found to have the m. chelonae. The docs didn't think it was causing any problems for me so decided not to treat it and just kept an eye on it. Finally, when I was 32 I started getting pretty sick, fevers, fatigue, weight loss and increased cough. They did a bronch and found tons of the m. abcessus so had to treat it. I was on IVs for 6 months, Amikacin, Biaxin and also Ceftazadime. It was a challenge to be on them for 6 months! I had a port put in but tolerated it ok, except for a little hearing damage. After a year went by I had a recurrence of the infection, and was treated for another 6 months. This was when I was 33 years old. After that 6 month treatment my doctors put me on inhaled amikacin and Biaxin every other month prophylactically (sp?) and I have been well since. I'm now 39. My cultures have been negative (altho' I know that doesn't mean it is truly gone..) I am continuing on the every other month regime of Amikacin/Biaxin and I really think that has made a huge difference. The National Jewish Center in Denver has a lot of information on mycobacterial infections, they specialize in respiratory diseases. Mycobacteria are typically very slow growing and require long treatments with multiple antibiotics. For that reason they are usually only treated if causing a problem. Seems as though they can be 'dormant' for a long time- 13 years in my case. Hope this helps! Good luck to you and your daughter. Kim
Hi,
I'm 39 and have had mycobacterium abcessus, originally the docs thought it was m. chelonae. I was diagnosed with cf at 19 after having been sick for a long time. At that time I was found to have the m. chelonae. The docs didn't think it was causing any problems for me so decided not to treat it and just kept an eye on it. Finally, when I was 32 I started getting pretty sick, fevers, fatigue, weight loss and increased cough. They did a bronch and found tons of the m. abcessus so had to treat it. I was on IVs for 6 months, Amikacin, Biaxin and also Ceftazadime. It was a challenge to be on them for 6 months! I had a port put in but tolerated it ok, except for a little hearing damage. After a year went by I had a recurrence of the infection, and was treated for another 6 months. This was when I was 33 years old. After that 6 month treatment my doctors put me on inhaled amikacin and Biaxin every other month prophylactically (sp?) and I have been well since. I'm now 39. My cultures have been negative (altho' I know that doesn't mean it is truly gone..) I am continuing on the every other month regime of Amikacin/Biaxin and I really think that has made a huge difference. The National Jewish Center in Denver has a lot of information on mycobacterial infections, they specialize in respiratory diseases. Mycobacteria are typically very slow growing and require long treatments with multiple antibiotics. For that reason they are usually only treated if causing a problem. Seems as though they can be 'dormant' for a long time- 13 years in my case. Hope this helps! Good luck to you and your daughter. Kim
I'm 39 and have had mycobacterium abcessus, originally the docs thought it was m. chelonae. I was diagnosed with cf at 19 after having been sick for a long time. At that time I was found to have the m. chelonae. The docs didn't think it was causing any problems for me so decided not to treat it and just kept an eye on it. Finally, when I was 32 I started getting pretty sick, fevers, fatigue, weight loss and increased cough. They did a bronch and found tons of the m. abcessus so had to treat it. I was on IVs for 6 months, Amikacin, Biaxin and also Ceftazadime. It was a challenge to be on them for 6 months! I had a port put in but tolerated it ok, except for a little hearing damage. After a year went by I had a recurrence of the infection, and was treated for another 6 months. This was when I was 33 years old. After that 6 month treatment my doctors put me on inhaled amikacin and Biaxin every other month prophylactically (sp?) and I have been well since. I'm now 39. My cultures have been negative (altho' I know that doesn't mean it is truly gone..) I am continuing on the every other month regime of Amikacin/Biaxin and I really think that has made a huge difference. The National Jewish Center in Denver has a lot of information on mycobacterial infections, they specialize in respiratory diseases. Mycobacteria are typically very slow growing and require long treatments with multiple antibiotics. For that reason they are usually only treated if causing a problem. Seems as though they can be 'dormant' for a long time- 13 years in my case. Hope this helps! Good luck to you and your daughter. Kim
hi my name is marisol i am a 23yr old female with cf and this stupid mycobacterium chelonae. i have had it since 1995 and havent gotten rid of it. i had my problems back than not wanting to take my meds and just didnt care but i got over that now and i m fianlly off iv antbiotics and on oral now. the iv meds were amikacin and cefoxitin. the oral meds i m on now is biaxin and the inhaled amikacin. when i first got this bacteria they also thought it was TB but through further testing found out it was the bacteria. i was isolated for 48hrs because they were not sure it really sucked but hey i am getting through it.
hi my name is marisol i am a 23yr old female with cf and this stupid mycobacterium chelonae. i have had it since 1995 and havent gotten rid of it. i had my problems back than not wanting to take my meds and just didnt care but i got over that now and i m fianlly off iv antbiotics and on oral now. the iv meds were amikacin and cefoxitin. the oral meds i m on now is biaxin and the inhaled amikacin. when i first got this bacteria they also thought it was TB but through further testing found out it was the bacteria. i was isolated for 48hrs because they were not sure it really sucked but hey i am getting through it.
I put pseudemonis in the search engine of my computer and ended up here. My daughter (4 years old) does not have CF, but she had some strange looking puss jewels on her head this week and I took her to the pediatrician. They cultered them and the culture came back saying pseudemonis. They are telling me it's no big deal. Does anyone have any other info on this stuff?
Thanks-
Vicky
Thanks-
Vicky
Emily65Roses
New member
If she's a healthy little girl, the pseudomonas is likely not to affect her hardly at all. It's in the air, in people's lungs, in sponges and loofas. It's everywhere. It just happens to really beat on CFers. But if she's healthy, she'll probably be fine. *shrug*