We found my son has mycobacterium absessus since June 2012 and he has cystic fibrosis. My question is how long before the myco will start to give him problems enough to go forward with treatment? His pft's are 130% but his weight is low and he's going to have a gtube put in June 3rd to help with his weight. He's had two CT scans in the last year and the first showed multiple nodules and some with "tree in bud" and the second CT 6 months later showed improvement in the myco process. The CF center said amakacion thru pic line with other PO antibotics will be the plan when he starts to decline. Could he has this for months or years before it affects him enough to need to start treatment?
National Jewish Health (Medical Center) in Denver was founded in 1898 as a sanctuary for the diagnosis and treatment of tuberculosis. To this day, National Jewish continues to be the premier institution in the United States, if not the world, for the care of persons infected with mycobacteria. I posed your question to one of my tuberculosis-specialist colleagues and the following is his response to your question regarding disease caused by M. Abscessus, one of a class of bacteria named Non-tuberculous Mycobacteria (also referred to as Atypical Mycobacteria) I strongly suggest that you share and discuss his response with the doctor(s) primarily responsible for the care of his CF.
You might also find it useful to visit the Center for Disease Control (CDC) website: http://www.cdc.gov/hai/organisms/mycobacterium.html
Good luck to you and your son.
Philip Corsello, MD
Here is Dr. Nichols succinct, yet comprehensive response.
“Unfortunately, there is no straightforward answer. Few things to keep in mind:
1. The radiographic abnormalities for CF lung disease and mycobacterial disease can overlap significantly.
2. NTM can be cultured from the airway in CF patients without causing clinical decline.
3. It is not currently possible to predict if/when NTM in the CF airway will contribute to clinical decline.
4. NTM cannot be overlooked and should be considered for treatment if there is clinical decline without other clear cause.
5. Defining that "clinical decline" is also tricky and depends heavily on local CF doctors following closely. Loss of FEV1, increase in daily respiratory symptoms, increased frequency in lung exacerbations are all more common signs that NTM may be contributing to the underlying lung disease.
6. When deciding to treat NTM, care must be taken to do so properly and not to forget about other CF airway pathogens altogether.
7. Some would advocate for trying to eradicate NTM from the airway in patents otherwise doing well. This is controversial, given the widespread environmental exposure, etc.
Hope that helps a little.”
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