Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Mar 18, 2020

AM VERY SCARED HAS ANY ELSE HAD THIS STAIN OF THE MYCOBACTERIA. WOULD LOVE TO TALK WITH SOMEONE WHO HAS GONE THROUGH THIS!!!

@thielmann1

I had my lung removed because tests showed that it was only working 23% and Dr. Huitt advised removal as it was filled also with bacteria. I took Rifampin, ethambutol, and azithromycin for 4 years with no change so I went to NJH and had my lung removed and have been doing very well for the last 4 1/2 years with no bacteria. Just this month, the abscesses massilience has shown up. What kind of abscesses do you have? I will be going to see Dr. Huitt on August 16th.

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Nancy I don’t know what kind of Abscessis I have….but I know it’s very serious …requiring oral as well as 3 daily IV antibiotics and surgery. My cavity or hole and massive infection is concerning. I’m trying to be positive and I am grateful for a great care team but I am trembling with subconscious anxiety. Is there a way we may communicate privately? I’d like to know about your condition and management.

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@hydrang3a

Nancy I don’t know what kind of Abscessis I have….but I know it’s very serious …requiring oral as well as 3 daily IV antibiotics and surgery. My cavity or hole and massive infection is concerning. I’m trying to be positive and I am grateful for a great care team but I am trembling with subconscious anxiety. Is there a way we may communicate privately? I’d like to know about your condition and management.

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Hi, I have been a bit absent from the site and comments for a few weeks as I have had other medical issues to take care of daily. I have been diagnosed with Abscessis Massiliense, which is slightly different than abscessis and treatment seems to be different; however, until I meet with Dr. Huitt at NJH I don't have much to share. I will be going there on the 17th and 18th and will connect with you after my visit; meanwhile, I am presently concentrating on some ongoing symptoms with my recent breast cancer surgery. I do hope that you are getting some relief and help with the major stress that you are feeling. I'll check in with you after NJH. Nancy

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