One of my very closest friend's daughter (age 4 now) had a lymph node swell so much it was visible on her neck. The area was also reddened. After much go round and various treatments (draining, antibiotics, etc.) it was managed at a big hospital under infectious disease and was found to be a mycobacteria infection. She did the very long course of oral antibiotics and has been given the clear. I stayed away as much as possible during this time. I find myself still not wanting to go near their home but wonder if I'm being overly cautious. The question is now am I safe to be around this household or should I not go there? I will also ask my doctor but curious what you all think/would do?
friend's child had a mycobacteria absess
- Thread starter LouLou
- Start date
We had a similar issue with a child a couple grades behind in DS' school and asked the ID doctor. The children have virtually have no contact with each other, but I was concerned because they both go to the office for enzymes. DS' doctor indicated that the majority of mycobacteria have occurred in the clinic setting. So double check with your doctor, IMO, still be cautious
Krazy4Katie
New member
I'm a parent to a 17yr old girl who has mycobacterium abscessus. Normal CF protocol at Johns Hopkins is that everyone with CF wear a mask to clinic to avoid spreading the germs, they are very strict about disinfecting the rooms before we go in. Im very careful with her to be protective to cover her mouth & nose when sneezing and coughing to not spread to the unknown CF'ers out there. If I were you, I'd still be cautious as well. Once you get it, unfortunately, you can't get rid of it. Good luck to you.
M
MomtoprincesswithCF
Guest
I would stay away..... My daughter is currently going through a long and serious regimen of IV antibiotics and 3oral antibiotics and an inhaled anitibiotic for a year or more for growing mycobacterium abcesses in her sputum culture.. It is a very hard bug to get out once it's in your lungs! She has been on the treatment for 6months and still gets positive sputum cultures for it... I wouldn't take any chances if possible. Hope this helps!
Mom to my CF princess!!
Mom to my CF princess!!
I have mycobacterium abscessus. When I was first diagnosed with it, I was told that it's passed by water or soil. However, more recently my doctor told me about a situation -- I think in Seattle -- where a number of people in the clinic came down with it at the same time. They concluded that it may be easier to pass than previously thought. Since this incident, I am always put in a negative pressure room at the clinic and the staff take extra precautions when coming to see me. I've been undergoing treatment for almost three years -- it's not an infection I would wish on anyone. I would stay away at this point.
ajlindsley
New member
I am going to contradict myself. My daughter has cultured Mycobacterium abscessus. I would suggest staying away if you are able. The bacteria is so difficult to treat with a lot of horrible side effects. That being said, my son (with CF) has not cultured M. abscessus the 2 years that my daughter has had it.
Very interesting...my doctor says it is not transferred person to person (maybe the lymph node specific type?) - BUT everyone's reservation and my own certainly makes me concerned. I think I'll stay away until I can talk to my doctor about the situation and how it is really that different than the possible mycobacteria cross contamination issues in the clinical setting of late. Thanks everyone!
M
m.coteklein
Guest
It's kind of a grey area: it hasn't been confirmed if it is transmissible from person-to-person as of yet but it has been suggested that it can. My CF doctor in Seattle was actually the researcher who investigated this (I go to the CF clinic in Seattle). People with Cf have a particular vulnerability to M. Abscessus (since things get trapped in our lungs and can harbor there indefinitely). With that being said, I would not travel to the house. I'm not sure which biological factors or situations induce the infection or type of reaction as it is everywhere: It's notoriety developed during the Vietnam War as it infected the wounds of many ground personnel. All of that aside though, I'm on year two of i.v. treatments as I still culture for it, and like the posters above have said, it really is not an infection you want to risk getting. PLEASE BE SAFE.
M
MomtoprincesswithCF
Guest
M.coteklein, just wanted to ask you a few questions.... You said you have been in treatment for two years and still culture it....My daughter has cultured it for about 7months.... When they discovered it they said it's about a year treatment.... But know that we are into it it's already been 7 months and her last culture came back positive..an now they are like well this is just a long treatment!!! We had what we thought was an ending point(1year)..... But now seems very discouraging!!!Have you every had negative cultures?? How long can the treatment take??? Have you ever wanted to stop the treatment?? Sorry for all the questions.....
Thanks
MomtoprincesswithCF
Thanks
MomtoprincesswithCF
M
m.coteklein
Guest
MomtoprincesswithCF,
I should have been a little bit more clear on my response, I'm on my second year of treatment at 16 months, I'm sorry for the confusion. What makes M.Abscessus so unique, or in that matter any kind of mycobacteria, is that it can encapsulate itself and make antibiotic penetration difficult at times. This also enables it to lay dormant at times and noninvasive. Everyone varies with treatment with M.Abscessus, and the CF doctors are right at saying treatment usually last a year. This usually eludes to getting rid of the bacterium not the antibiotic duration, which depending on what level of severity of disease one is currently at with CF, can last another 6-12 months to make sure the M.Abscessus is wiped out (at least temporarily). Treatment ranges from about 1-3 years and some people will actually never cease to culture for it, this however, does not mean it is necessarily invasive and cause problems,but it may lead to prophylactics to make sure the infection stays at bay. M. Abscessus is in the same family of bacteria as TB (as TB is a mycobacterium as well) and once one is subject to TB one can never fully get ride of it-it just lies dormant (until something triggers it to flare up again).
To answer your question about my experience with M.abscessus, I have not had any cultures that have not grown it (I know awkward way to say that) since it first showed up. It's an acid fast organism, which contrary to the name, is very slow growing organism. This makes it a double edged sword if you will: Since it's slow growing, it mutates slower, that means that antibiotics it is susceptible to or even drugs that show intermediate susceptibility will do the quite a bit of damage to it (resistance is not a real big concern once a drug is found that kills it) since It can't mutate fast enough to build resistance. Unfortunately on the other hand, slow growing also means lasts longer. Either way, everyone's experience with M.Abscessus is a little bit different, I didn't know I was culturing for it until it made me very sick (a lot of it built up in my lungs;I'm in college and I tried at the time to tough it out for way-way too long). And of course I get frustrated with my antibiotic regiment, It eats up such a big part of the day! But in the end, these antibiotics are what are going to make me better (and compliance of course to all the other therapies we have to do
) and in all honesty, even though the treatment is tedious, I can't remember the last time I ever felt this good or healthy.
So please, if you have any other questions Please Ask! I am so sorry your daughter and you have to go through this. Let me know if there is anything else I can do to be of assistance.
I should have been a little bit more clear on my response, I'm on my second year of treatment at 16 months, I'm sorry for the confusion. What makes M.Abscessus so unique, or in that matter any kind of mycobacteria, is that it can encapsulate itself and make antibiotic penetration difficult at times. This also enables it to lay dormant at times and noninvasive. Everyone varies with treatment with M.Abscessus, and the CF doctors are right at saying treatment usually last a year. This usually eludes to getting rid of the bacterium not the antibiotic duration, which depending on what level of severity of disease one is currently at with CF, can last another 6-12 months to make sure the M.Abscessus is wiped out (at least temporarily). Treatment ranges from about 1-3 years and some people will actually never cease to culture for it, this however, does not mean it is necessarily invasive and cause problems,but it may lead to prophylactics to make sure the infection stays at bay. M. Abscessus is in the same family of bacteria as TB (as TB is a mycobacterium as well) and once one is subject to TB one can never fully get ride of it-it just lies dormant (until something triggers it to flare up again).
To answer your question about my experience with M.abscessus, I have not had any cultures that have not grown it (I know awkward way to say that) since it first showed up. It's an acid fast organism, which contrary to the name, is very slow growing organism. This makes it a double edged sword if you will: Since it's slow growing, it mutates slower, that means that antibiotics it is susceptible to or even drugs that show intermediate susceptibility will do the quite a bit of damage to it (resistance is not a real big concern once a drug is found that kills it) since It can't mutate fast enough to build resistance. Unfortunately on the other hand, slow growing also means lasts longer. Either way, everyone's experience with M.Abscessus is a little bit different, I didn't know I was culturing for it until it made me very sick (a lot of it built up in my lungs;I'm in college and I tried at the time to tough it out for way-way too long). And of course I get frustrated with my antibiotic regiment, It eats up such a big part of the day! But in the end, these antibiotics are what are going to make me better (and compliance of course to all the other therapies we have to do
) and in all honesty, even though the treatment is tedious, I can't remember the last time I ever felt this good or healthy. So please, if you have any other questions Please Ask! I am so sorry your daughter and you have to go through this. Let me know if there is anything else I can do to be of assistance.