Hello.I am wondering if anyone else has this mycobacterium chelonae and how it is/was being treated. I have had it for years now and was being treated for it at children's hospital and now that i have switched to the adult clinic they want to do some other treatments that have harsh side effects, such as HIGH chance of losing my hearing. I need my hearing i have a 3 year old that i spend my days with, imagine the trouble he could get into if i couldn't hear. I would be paranoid of people breaking in or him hurting himself and me not knowing. Well anywho, i am hoping someone else has this. I just want to know of different treatments for it.Love Julie
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mycobacterium chelonae
- Thread starter anonymous
- Start date
Julie, i am not familiar with Chelonae, but i did have a strain of mycobacterium when i was younger that was pretty bad for a while and i had to be on some tough antibiotics. I was wondering what kind of "harsh" treatments the hospital wants to do. I know when i was on my meds i had to have my hearing tested every three months because of the risk, but nothing ever happened and i never showed any signs of hearing loss. Are the treatments you are talking about oral or IV?did you mean children's hospital boston?-Caitlin
Maddy-I cultured it when I was 11 and had surgery. I was then on a combination of 4 drugs- Rifampin, Ethambutol, Biaxin, and the third switched from Cipro and Bactrim. I was on these drugs for 4 1/2 years. I gave cultures in to test for mycobacetria every 2 months, and one time, when i was 14, the culture came back positive, although my pft's were fine and my CT scans showed no sign of change. I immediately did 6 weeks of Amikacin, and it went away, never to come back (knock on wood, i am 20 now but i still am superstitious !!!) Anyway, Agression i beleive is best for this awful type of bacteria, which is not even cf related technically (because anyone with respiratory problems is succeptable to it). Also since then i do not get xrays anymore, only cat scans, since significant change with mycobacteria can only be seen on a catscan. -caitlin
Caitlin,Thanks for the information. So glad to hear you managed to beat the bug!The side effects of the drugs seem pretty scary. Did you ever have any and have you had any long term problems? Do you have any scarring on your lungs or do your CAT scans come up clear? What did the surgery entail and can you remeber why they did it?I am hoping we can get away without any surgery. My son will have to have IV treatment to begin with followed by long term oral treatment. We have sent in several sputum samples and are waiting for a confirmed diagnosis.If anyone else has anything to add I would be grateful to hear.Thanks,Maddy.
Hi Maddy, Well I had to be tested for hearing and sight loss about every two months to make sure that the medicine wasnt effecting those areas, because that can happen. However, there was never any damage and my sight is still 20/20 and my hearing perfect. The rifampin turns (all) your bodily fluids orange, so that is a little strange, i mean even your tears turn orange! But no big deal. I had surgery because the mycobacteria infection had rapidly gotten out of control, due to the fact that we did not catch it in time, merely because the doctors simply were not looking for it or expecting it. This is often the case w/ mycobacteria...doctors might see a slight decline in PFT's, and prescribe meds, or inhaled meds...something that targets the usual CF bugs. However, this doesnt work obviously against the mycobacteria, and because of the nature of the bacteria, it spreads really rapidly and quickly. This is what happened with me...I went to the hospital and my pft's were down JUST a little tiny bit, and my doctor said to give it a month and prescribed inhaled tobi. About three weeks lateri was getting a lot a lot worse with coughing, --the kicker was that i went on a hike with my parents somewhere around new hampshire at higher altitudes, and it spurred a horrible horrible coughing fit that i can still remember vividly. I went to the doctor, had a cat scan and then went home and they called me 2 hours later and said that i needed to come in for surgery on monday. The infection had destroyed my lower left lobe beyond repair so it had to be removed. However, when i cultured positive for mycobacteria again in 8th grade, we caught it in time and treated it so it never had a chance to destroy lung tissue. I have virtually no scarring from mycobacteria, besides the fact i gues that i am missing a part of my lung (!) I have slight slight scarring otherwise in parts of my lungs from other infections. I guess that is the key, making sure that scarring doesnt get to take place, because that is what is ultimately the downfall...when there is such little lung tissue left. And once it is scarred you can never get it back- sad. Anyway, i wish you the best of luck and ask me any more questions if you like, it is interesting remembering it all.-Caitlin
Hi Caitlin,Thanks for all the information. My son will start treatment next week for Mycobacterium chelonae. This is a diifferent form of bacillus from your infection not so? He does not have CF but has Kartageners syndrome so I'm not too familiar with the treatment CF patients normally receive.He will have tienam and amikacin (think this is the one that can damage the hearing) intravenously for the first 2 to 6 weeks and then go onto leovfloxacin and azithromycin for a minimum of 6 months or until his sputum is free of the bug. I feel so sorry for him and wish it could be different. Anyhow the news that you have recovered and are well now makes me feel much better and if we can avoid surgery so much the better.We live in Hong Kong - hope they are on the ball here - language is sometimes a problem!Keep well!Maddy.
Hello, Julie sorry to hear about you catching that bug,my name is Diana and I have cystic fibrosis and diabetes,I was hoping you could give me more information about the bug,how you can catch it,what does it cause,how you can prevent it and other things that concern this bug or a site who tells about these things. The reason I write to you it is because I am from Romania and information sources are limited,hope I dont ofend you by asking all these things. Wish you the best and hope you get well soon.
Thanks Caitlin,So far so good. He is on the tienam intravenously for 6 weeks. Also azithromycin orally. After the tienam he will start on the levofloxacin as well for 6 months. The specialist decided not to give him the amikacin. Not sure why.You reassurance is encouraging. Hope you continue to do well.All the best,Maddy.
mycobacterium chelonae is similar to mycobacterium abcessus and kansii. All three of these organisms are difficult to treat and require long term antibiotic (ABX). A minimum of 3 months and usually 2-3 agents.The agent that potentially may cause "hearing loss" is amikacin. This agent an aminoglycoside similar to gentamicin and tobramycin. You may have already have received these for the treatment of pseudomonas infections.Toxicity of these agents are associated with serum drug levels (concentrations) especially troughs and duration of therapy or repeated exposure to aminoglycosides.Your MD should monitor serum levels while you are on any aminoglycoside (especially IV), your Creatinine and BUN (estimates of kidney function) as well as hearing tests.By having close patient monitoring, the risks of toxicities are kept to a minimum
Julie I have microbacterium chelonae in my lung. I am on 2 antibotics all the time. When I get sick they put me in the hosp & run 4 antibotics IV for 6 to 8 weeks. I just found this site today. They have given me that antibotic that messes with your hearing also. If you are still on this site you can contac me @ mickymom@itlnet.net my name is Barb C
My daughter has mycobacterium as well. She is resistant to all antibiotics and is also on two all the time. She keeps running these low grade fevers. Sometimes they spike up to 102+. Is this common for this bug?I keep on looking for alternative nutrients and herbs that may help. Does anyone have any suggestions or experience in alternative therapies??Paul M.
My daughter was diagnosed with mycobacterium chelonae roughly in early 1999 (with skin lesions) at age 16. She was on antibiotics for 3-1/2 years before told she no longer needed the medication. She was not tested at this point was was no longer "breaking out" with the lesions. At no time were we told this could go to the lungs.Early March, 2004 she began suffering respitatory problems and has not responded to standard antibiotics. Current symtoms are fatigue, bloody sputum and night time fever. She will be having bronchoscopy tomorrow, but I am now wondering if these symtoms are similiar to your son's. Sputum has been cultured but no results as of yet.If anyone has any information they could share about their experiences and if anyone has had both the skin lesions that went to the lungs, I would love to hear from you.Suzanne
I've been receiving treatment for a mycobacterium for just under a year now. My symptoms were weightloss, slow decline of pft's, and night time fevers. I am taking three different kinds of ab's, but it's not too bad. Mycobacteriums actually spread slowly, but they are hard to catch and can do severe irreparable damage.Before the mycobacterium my baseline pfts were in the high nineties, now they are generally in the high seventies. I will have a cat scan at the end of this month to see how my lungs are doing. Mycobacteriums aren't fun, but I don't think they are quite as scary as they are made out to be.-nichole
HI all,Lots of you have asked me questions so here are the answers.The treatment i am on now is normally used for tuberculosis, as this is a form of it (can't spread it though). I am on 3 different oral antibiotics. They want to switch me to IV antibiotics. Amikacin and some other one that would be oral. THe amikacin breaks down the little hairs in your ears that vibrate, the same way that Tobramycin and some others do. Thus making it so you lose your hearing and it cannot be brought back, as far as i have been told anyway. This does not happen in all cases there is just a serious risk of it happening. I am at higher risk because i have already lost some of my hearing from Tobramycin. As far as how you get it, i was told that most CFers have it in them it just doesn't cause problems. Thats what the Children's Hospital told me when i was 14, i have had this for a long time, my new docs just thought it had become inactive and took me off my meds for it and then it came rushing back in. There have not been many people who needed to be treated for it here, in fact i am person #2 in my clinic and the other one was treated unsuccessfully, they passed away. This is why i have asked about other treatments that are out there. The treatment i am currently on is the same as what the other person was on, i guess my new docs don't learn from thier mistakes. If you have any other questions please post them in a new thread <img src="i/expressions/face-icon-small-smile.gif" border="0">Julie