Maddy, Would you mind giving a little of your son's history? Like when he was diagnosed, symptoms, treatments, etc? My ds will be tested for primary ciliary dyskinesia when they do his next sinus surgery. His first was 1-1/2 yrs ago at 3-1/2 yrs. His drs (pulmonolgist, ENT) all thought he had cf due to his symptoms (and what they found when they did his sinus surgery) but his sweat tests were negative and they didn't find any genes for it. Now they think it may be pcd. We know he doesn't have kartageners. I lurk here just because there are a lot of similiarities in his symptoms/treatment with cf. Is your son small for his age? My son is in the 10% for ht/wt down from 95%. He's been gradually losing ground every year. Thank you!!!
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mycobacterium chelonae
- Thread starter anonymous
- Start date
Maddy, Would you mind giving a little of your son's history? Like when he was diagnosed, symptoms, treatments, etc? My ds will be tested for primary ciliary dyskinesia when they do his next sinus surgery. His first was 1-1/2 yrs ago at 3-1/2 yrs. His drs (pulmonolgist, ENT) all thought he had cf due to his symptoms (and what they found when they did his sinus surgery) but his sweat tests were negative and they didn't find any genes for it. Now they think it may be pcd. We know he doesn't have kartageners. I lurk here just because there are a lot of similiarities in his symptoms/treatment with cf. Is your son small for his age? My son is in the 10% for ht/wt down from 95%. He's been gradually losing ground every year. Thank you!!!
Hello EveryoneMy name is Lynn. And I finally got the test results back yesterday from a right hand tissue fungus culture and smear. The result turned out to be <b>mycobacterium chelonae</b>. I had gone to Mexico from Texas for a week's vacation. The day after I returned I had to go see my doctor because my right middle finger had swelled to almost 4 times its normal size. Well, he diagnosed it as cellulitis (tendon sprain, I think). And sent me to see a orthopaepic surgeon. He put me in the hospital that night (this was four days after I saw my doctor).He put a drain in my finger for two AB. He then put me on oral AB's until I could see an Infectious dieseases doctor. At this time, I had a large nodule developing right above the middle knuckle and could not bend my finger. Both doctors saw me during the week and the ID doctor put me on Rifampin, Doxycycl, and Ethambutol. I’ve been on them since around 5/18/04. I then went in the hospital again for the surgeon to drain my finger. They took another smear because the found out from the first one that it was a acid fast bacterium. Which meant it was a Mycobacterium. A non-turbuculous slow growing bacterium. Now, I have two more nodule growing. So, I don’t know what will happen from here. That’s why I was researching the internet for mycobacterium chelonae. I’ll let you know more as I learn more. God bless you all and I hope the best for you.LYNN
There are many people in the San Jose,CA area who are developing lesions on their legs.
The local paper says that these infections have been traced to pedicure shops. People that go to businesses offering pedicures apparently soak their feet in a solution and the
bacteria is passed on. Of course the shop owners all say they disinfect their equipment
between appointments, but the infections continue. The paper said the bacteria is
mycobacterium chelonae. I started developing lesions on my lower legs although I have never been in a pedicure shop. They started out as places on my lower legs that itched and after scratching, these lesions have developed. There also is a very slight "oozing" of the wound. The only relief from the itching for me has been a scrubbing of the area with soap and rough clensing cloth. Have you experienced this itching and what medicine were you on? Please give me any info you can. Thanks...John
The local paper says that these infections have been traced to pedicure shops. People that go to businesses offering pedicures apparently soak their feet in a solution and the
bacteria is passed on. Of course the shop owners all say they disinfect their equipment
between appointments, but the infections continue. The paper said the bacteria is
mycobacterium chelonae. I started developing lesions on my lower legs although I have never been in a pedicure shop. They started out as places on my lower legs that itched and after scratching, these lesions have developed. There also is a very slight "oozing" of the wound. The only relief from the itching for me has been a scrubbing of the area with soap and rough clensing cloth. Have you experienced this itching and what medicine were you on? Please give me any info you can. Thanks...John
NoDayButToday
New member
John,
You seem to be talking about a skin infection caused by mycobacterium. I think the majority of people on this form are talking about a respiratory infection caused by the MAC; it is a forum for people with cystic fibrosis, which is a genetic disease, which among other things, causes thick sticky mucus in which infections can thrive (take a look around the site for more info). You may have more luck getting information on skin infections caused by mycobacterium somewhere else.
Your story is interesting though, and kind of gross. When you think about, nail salons are very unclean environments. Good luck
You seem to be talking about a skin infection caused by mycobacterium. I think the majority of people on this form are talking about a respiratory infection caused by the MAC; it is a forum for people with cystic fibrosis, which is a genetic disease, which among other things, causes thick sticky mucus in which infections can thrive (take a look around the site for more info). You may have more luck getting information on skin infections caused by mycobacterium somewhere else.
Your story is interesting though, and kind of gross. When you think about, nail salons are very unclean environments. Good luck
In response to John from San Jose RE: “There are many people in the San Jose, CA area who are developing lesions on their legs. “ If you do search on the Internet under “Images (Yahoo, Google, etc)” they show picture of these lesions on peoples legs.
I live in the Bay Area, I got lesions on my legs recently. I think I either got it from digging in the dirt, I had a Rose bush prick my about a week before I noticed any thing, and/or just from taking a shower (the bacteria, mycobacterium chelonae, is found in the water too). Or a combinations of the above.
Mine had scabbed over… after I had been taken antibiotics prescribed by my doctor, then I started applying the following ointment…
I’m using TARO brand Diaper Rash Ointment Skin Protector with Zinc-Oxide and cod liver oil. I applied it nice & thick.
Be sure to read the warning label: “Not to be applied over deep or puncture wounds, infections, or lacerations. Etc…”
Don’t scratch or puncture any new red spots in the area. I punctured a red spot and it suddenly turned into a second lesion.
<img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/moon.gif" border="0">
I live in the Bay Area, I got lesions on my legs recently. I think I either got it from digging in the dirt, I had a Rose bush prick my about a week before I noticed any thing, and/or just from taking a shower (the bacteria, mycobacterium chelonae, is found in the water too). Or a combinations of the above.
Mine had scabbed over… after I had been taken antibiotics prescribed by my doctor, then I started applying the following ointment…
I’m using TARO brand Diaper Rash Ointment Skin Protector with Zinc-Oxide and cod liver oil. I applied it nice & thick.
Be sure to read the warning label: “Not to be applied over deep or puncture wounds, infections, or lacerations. Etc…”
Don’t scratch or puncture any new red spots in the area. I punctured a red spot and it suddenly turned into a second lesion.
<img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/moon.gif" border="0">
I’m the one who has been putting Diaper Rash Ointment on (the EXTERNAL wound) their leg (Which works to a point- it keeps it from getting bigger & make it a bit better and not itch so much), but you can not put it on the actual scab area. I thought I had MYCOBACTERIUM CHELONAE lesion on my leg. But I had it tested. It turns out that I actually have “MRSA” (i.e. methicillin resistant staphylococcus aureus). I've been taken Ciprofloxacin @ 500 MG twice a day for it over the last two weeks - without satifactury results. So I did a web search on it (MRSA staphylococcus). I found a web page that says that a simple cure is to put “natural honey” on it. I put two applications of honey and now 12 hours later it looks like a normal “cut” not a 4 inch bright red ball of intense burning pain. The artical said that “synthetic honey” would not work – too bad for the big drug companies, nature beats you out this time! So old time remedies do work just fine...
Hi,
I am not sure who wrote on the 19th June asking about my son. Sorry I haven't replied - he has been doing reasonably well so I haven't checked this forum for a while (as you mention he is not a CF sufferer!) However his latest CT scan has showed some deterioration so we are faced with going back on IV tienam. He has been on azithromycin and levofloxacin for nearly a year now, after an intial 3 week treament of IV tienam (feb 2004).So far we have avoided amikacyin.
He was diagnosed as a dextrocardia (Kartageners syndome) at birth. He has always suffered from excess mucous production (hence the smililaity to CF) which has resulted in numerous recurrent upper respiratory infections during his life. (Wish I had shares in the company that makes augmentin!) He also had grommets inserted several times when small as his ears could not cope! He has been on flixotide and flixonase as long as I can remember! When he was very small we would use a nebuliser with ventolin, but I am not sure if that really made any difference.
He has just turned 18 and height wise in OK (5' 10" - my husband is 6'4'' but my side of the family are quite short) but he is painfully thin but I think is maintaining his weight at the moment. He was only really diagnosed with psd in his teens and the MAC infection was detected when his chest X-rays started to show increased areas of bronchiectasis - end of Dec 2002.
We have lived in Hong Kong for 11 years now and the air quality has definitely deteriorated substantially over that time and I have dreadful bouts of guilt, thinking we should not have subjected him to this. I have learnt that a warm DRY climate is the best. I am hoping he will go to college in Australia in October and am praying that the clean air there will help him.
Keeping the chest as clear as possible is really important - thus not allowing these bugs to take hold! Physiotherapy is really important _ you can do it yourself easily. We are looking at buying him an inversion table so he can hang upside down - gravity is one of his biggest enemies. So when playing with your son, hold him upside down as often as possible, lie him facing downwards across you lap and play drums on his back and get that awful mucous out!!! Our kids just don't have the cilia to do it for them!
Best of luck and let me know how things go. (Nicole - I hope you are right about MAC not being too serious)
Any one have any further comments - encouraging remarks - I'd love to hear.
Maddy.
I am not sure who wrote on the 19th June asking about my son. Sorry I haven't replied - he has been doing reasonably well so I haven't checked this forum for a while (as you mention he is not a CF sufferer!) However his latest CT scan has showed some deterioration so we are faced with going back on IV tienam. He has been on azithromycin and levofloxacin for nearly a year now, after an intial 3 week treament of IV tienam (feb 2004).So far we have avoided amikacyin.
He was diagnosed as a dextrocardia (Kartageners syndome) at birth. He has always suffered from excess mucous production (hence the smililaity to CF) which has resulted in numerous recurrent upper respiratory infections during his life. (Wish I had shares in the company that makes augmentin!) He also had grommets inserted several times when small as his ears could not cope! He has been on flixotide and flixonase as long as I can remember! When he was very small we would use a nebuliser with ventolin, but I am not sure if that really made any difference.
He has just turned 18 and height wise in OK (5' 10" - my husband is 6'4'' but my side of the family are quite short) but he is painfully thin but I think is maintaining his weight at the moment. He was only really diagnosed with psd in his teens and the MAC infection was detected when his chest X-rays started to show increased areas of bronchiectasis - end of Dec 2002.
We have lived in Hong Kong for 11 years now and the air quality has definitely deteriorated substantially over that time and I have dreadful bouts of guilt, thinking we should not have subjected him to this. I have learnt that a warm DRY climate is the best. I am hoping he will go to college in Australia in October and am praying that the clean air there will help him.
Keeping the chest as clear as possible is really important - thus not allowing these bugs to take hold! Physiotherapy is really important _ you can do it yourself easily. We are looking at buying him an inversion table so he can hang upside down - gravity is one of his biggest enemies. So when playing with your son, hold him upside down as often as possible, lie him facing downwards across you lap and play drums on his back and get that awful mucous out!!! Our kids just don't have the cilia to do it for them!
Best of luck and let me know how things go. (Nicole - I hope you are right about MAC not being too serious)
Any one have any further comments - encouraging remarks - I'd love to hear.
Maddy.
sorry but I do no speak English very good, so I wiil tell you in Español i live in Venezuela.
Con un tratamiento dietetico me pusieron uns inyecciones subcutaneas y adquri esta microbacteria, que me formó unos nodulos en el estomago y actualmente mucha gente esta padeciendo de esta enfermedad en latinoamerica por los tratamientos para bajar de peso. Al parecer debes ir a un infectologo el cual debe conocer bien de esta bacteria, al parecer se debe tratar oralmente con claritomicina de 1 a 2 mg/dia por 3 a 4 meses o introvenoso con un medicamento que se llama trobamicina, pero debe ser con un especialista.
el medico me explicó que si estaba encapsulado como es mi caso no podia desrrollarse más, pero que debia ser sacado con cirucia local.
Saludos Faustino Gómez
faustinogomezr@hotmail.com
Con un tratamiento dietetico me pusieron uns inyecciones subcutaneas y adquri esta microbacteria, que me formó unos nodulos en el estomago y actualmente mucha gente esta padeciendo de esta enfermedad en latinoamerica por los tratamientos para bajar de peso. Al parecer debes ir a un infectologo el cual debe conocer bien de esta bacteria, al parecer se debe tratar oralmente con claritomicina de 1 a 2 mg/dia por 3 a 4 meses o introvenoso con un medicamento que se llama trobamicina, pero debe ser con un especialista.
el medico me explicó que si estaba encapsulado como es mi caso no podia desrrollarse más, pero que debia ser sacado con cirucia local.
Saludos Faustino Gómez
faustinogomezr@hotmail.com
Hi, my daughter aged 20 (cf and diabetes) has just been told that she has mycobacterium chelonae, it was found on her last stay in hospital, we have no idea what it is or how she got it or what effect it will have on her health can anyone tell me what we can expect?
thank you
thank you
Hi, my daughter aged 20 (cf and diabetes) has just been told that she has mycobacterium chelonae, it was found on her last stay in hospital, we have no idea what it is or how she got it or what effect it will have on her health can anyone tell me what we can expect?
thank you
thank you
theLostMiler
New member
Ellied, did you find anything? Look up all threads on mycobacteriums, I started culturing M. Chelonae in 2006. There are other strains of NTM that will give you info. Let me know of you find what you need.
theLostMiler
New member
Ellied, did you find anything? Look up all threads on mycobacteriums, I started culturing M. Chelonae in 2006. There are other strains of NTM that will give you info. Let me know of you find what you need.
Hi, Tanya was also diagnosed with mycobacterium abscessus and she has been told that she will now be on oral antibiotics and nebulised antibiotics, the nebulised antibiotics she has to take every other month as she cannot take it at the same time as colomycin, she has also been told to make sure that her son is not near her when she has the nebulised antibiotics as it could make it difficult to treat if ever he got the illness as his body would build up an immunity to the antibiotic. so she is having to leave her son (who is 9 months old) in his playpen whilst she has the antibiotics.
We have been told that she will never fully get rid of the infection and that the antibiotics will just keep it at bay.
We have been told that she will never fully get rid of the infection and that the antibiotics will just keep it at bay.
Hi, Tanya was also diagnosed with mycobacterium abscessus and she has been told that she will now be on oral antibiotics and nebulised antibiotics, the nebulised antibiotics she has to take every other month as she cannot take it at the same time as colomycin, she has also been told to make sure that her son is not near her when she has the nebulised antibiotics as it could make it difficult to treat if ever he got the illness as his body would build up an immunity to the antibiotic. so she is having to leave her son (who is 9 months old) in his playpen whilst she has the antibiotics.
We have been told that she will never fully get rid of the infection and that the antibiotics will just keep it at bay.
We have been told that she will never fully get rid of the infection and that the antibiotics will just keep it at bay.