Discussions
Discussions
Micobacterium abscessus cure?
I was diagnosed with this NTM in 2014, and recently my pulmonary doctor has told me he sees progression of growth in my CT's of suspect new activity of the disease. I thought we had beat it back. Now do I start all over? Doing the three tests AFB again. But the first round of treatment nearly killed me. I'm scared. Is this what others face?
Replies
Hello! I feel your angst; I had been there years ago w/ a reoccurrence of MAC after 3 years when I thought I had rid myself of this bug. Unfortunately, the re-occurrence rate for NTM is high. Have hope. There are new drugs in the pipeline and your pulmonologist may be able to modify the drugs you had taken in the past. Below are a few links re: abscessus. They may be technical but hopefully, you will gain some information from them.You are not alone. We are here for you.
https://www.uptodate.com/contents/treatment-of-myc...
https://www.ncbi.nlm.nih.gov/m/pubmed/26890211/
https://www.ncbi.nlm.nih.gov/m/pubmed/26890211/
When I saw my infectious disease specialist a few months ago, he warned me that the reinfection rate for these bugs is pretty high. I certainly feel for you LornaLee. Once I finish treatment I don't want to think about going back on the drugs again.
How often does your Pulmo send you for CTs since your last treatment ended?
Comments
Lorna Lee,
Hello! I am sorry to read your update. Do you have light sensors in/ near your bedroom and bathroom for the night hours? You can look up other fall precautions on line since you are really concerned when you wobble.
I feel that many of us have other underlying auto- immune disorders as well. Docs suspected I had Syro gens as well a few years ago due to extremely dry eyes, no tear production. However, the tests was negative. Some patients have an inflammatory , auto immune process going in within their bodies which cannot be accurately diagnosed.
One day at a time
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