Mybobacterium abscessus

[anonymous]

Our 7 yr. old's culture just came back and he tested positive for this. My understanding is this is a nontuberculous mycobacteria that has the potential to greatly impact lung function. We had a chest CT today and have a bronc scheduled for tomorrow.

Does anyone have any experience with this? I understand the antibiotics are harsh with many side-effects and can last for 6-18 months.

Any help would be appreciated.

Mike

 

[luke]

Mike,

I am not well versed in this mycobacterium but I do know a little. The main thing I would like to impress upon you is the possibilty of a contaiminated smear. It is entirely possible that the specimen was tainted in the lab. So until you get the smear back from the bronch you can't be certain. As far as prolonged antibiotic usage, yes that is the normal routine. good luck and keep us updated.


Luke

 

[anonymous]

Hi Mike,
I have this bacteria also, I first cultured it at age 19 back in 1984 when it was resistant to everything. The doctors felt like it wasn't causing too much damage/infection at the time and I lived with it with no treatment for 15 years, when it did become a big problem. The name says it all, abcessus, I had many abcesses in my lungs and was quite ill when they finally started treatment. Luckily new antibiotics have been developed since I first cultured it! I had 2 six-month courses of IV abx and responded very well, although had a few kidney issues and some high frequency hearing loss. The hearing loss is permanent, but thankfully the kidney issues resolved. I'm very sorry to hear your daughter has this complication. There is an article you might want to read and give to your doctors about this bacteria in cf patients:
<a target=new class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/full/161/2/641">http://ajrccm.atsjournals.org/cgi/content/full/161/2/641</a>
I also consulted with Dr Michael Iseman at the National Jewish Center for Respiratory Diseases in Denver who is an expert on this bacteria as many doctors are unfamiliar with it. It is very important to treat it with more than one drug if you do decide to treat to prevent resistance. Good luck, and feel free to ask if you have any further questions.

Kim
40 w/cf

 

[anonymous]

Thanks for the responses. This bug really has us scared but we should know more today after the bronc. and discussion with the pulmonogist.

Our Dr. has been in contact with UNC CHapel Hill who I believe have done alot of research as well as the clinic in Denver. Did you actually go see the Doc's in Denver to help with the treatment or were you treated at you local center?

It is refreshing to hear your story. Reading some links from Cystic-l last night it did not sound too good for our son Luke. He seems to be doing fairly well other than being PO'ed he is getting admitted to the hospital and will likley miss Halloween. As I sit here typing this I am watching him sleep in our hotel room and it is really hard to comprehend that inside there are bugs causing him harm.

 

[anonymous]

Hi Mike,
My doctors in Boston started treating me and I also flew to Denver to be evaluated there, just to be sure my docs were on the right track. Luckily they were. It was reassuring to be seen by someone so familiar with the bacteria, I wanted to be sure I was doing everthing possible to treat it. I have heard that UNC also has done a lot of work in this area, so I would say your son is in good hands if his docs are consulting with them. I hope his bronch goes well. Sorry he has to miss Halloween! That is such a big holiday for kids..... Feel free to get in touch if you have any questions or just want some support: knunnari@comcast.net I'll keep you and your son (sorry, I originally thought he was a she!) in my thoughts, please keep me posted.

Kim
40 w/cf

 

[anonymous]

Iseman worked with me too when I cultured m. aviam and kansasi. I live in CO, so I already went to the cf clinic at Nat'l Jewish. I think your wife started a thread a few days ago, "TB". The drugs are tough, so the decision to treat should be a prudent one. I cultured when I was 21 and postponed treating it for about a year. I'm glad I did it, but it was miserable, and add a full semester or college classes on top of that.

Debbie
24 w/ CF

 

[anonymous]

I was just diagnosed through a sputum culture that I had this. My doctor was not concerned and said that this type of mc was very sensitive to antibiotics and that there were many options. We did not do a scope but I will repeat my sputum culture in a month. I was surprised to hear people's concerns after talking to my doctor. Hope this helps relieve stress. God Bless, Kim 35, cf

 

[anonymous]

Thanks again for everyone's responses.

The bronc and CT went well and looked better than our Dr. had expected them to look. He did admit us to start IV antibiotics hoping this would get rid of whatever is in our son's lungs. Depending on culture results we might be home for halloween and finish our IV's there. My concern is that he has been on inhaled Tobi and Cipro for 5- weeks with no signs of improvement but also no real decline. His PFT's were good yesterday as well.

He said they don't treat the mycobacteria until there are two positive cultures and we have only one. This seems to follow the protocol of research I have read from Colorado and North Carolina. He saw no evidence of disease caused by the NTB yet which is good. The mucus he got on the bronc should give a very accurate culture of what is really causing the problems. We hope and pray this it is not this mycobacteria abscessus but if it is we will deal with that. I understand it can be in the lung and not cause any problems (like psudemonias) but they have to keep a close eye on what is going on.


Sorry for starting multiple threads on this but I wanted to get as many responses as possible.

Mike

 

[anonymous]

Wanted to update everyone on our son's culture results. The cultures came back positive from all three lobes they tested during the bronc for Mycobacteria. We are obviously very concerned based on what we have read.

His only symptoms of this was an increased cough. From what I have read it sounds like other symptoms include night sweats, loss of appetite, loss of energy, etc. and our son had none of these. Is that what you all experienced before being treated? Some of you waited to get treated - what was the determining factor of when to start your treatment?

I hear that the IV's antibiotics are very harsh with potential side effects of liver problems and loss of hearing. Do these IV's make you feel sick? Did you take these IV's at home through a port? How often did you get tested for liver or hearing problems? What determines how long you are on these drugs?

Sorry for so many questions but I thought it might be helpful for others who are dealing with this or mighte have to deal with this.

Mike

 

[anonymous]

Hi Mike,
I was basically asymptomatic with the positive cultures for years, which was the reason my doctors waited to treat me. My PFTs declined very slowly, probably about the 2%/year that is average for CF patients. I had some cough, but not more than my baseline. They decided to treat me when I had abcesses on CT scan, but I had been having night sweats, weight loss, extreme fatigue, fever, increased cough and was feeling really lousy for several months before the CT scan showed anything. In my opinion they waited a tad too long.... but hindsight is 20/20. I'm so sorry to hear your son's bronch cultures were positive. Good luck to you and your son. Happy Halloween!

Kim
40 w/cf