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Does anyone have abscessus?

MAC & Bronchiectasis | Last Active: Aug 1 6:29pm | Replies (26)

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@robinzemp

I had two positive cultures for abscessus last summer while hospitalized for an exacerbation of interstitial lung fibrosis and was referred to an ID doctor. He gave little information other than abscessus is faster growing and harder to treat. He said I could treat it with antibiotics, wait to treat it, or not treat it. I was to make a decision based on those parameters. I chose to treat and was started on Azithromycin 500 mg, 1 daily; Omadacycline (Nuzyra) 150 mg 2 once daily (no food 4 hrs before or 2 hrs after); and Arakayce inhaled. I was told to begin all at the same time. I took Omadacycline at 6:00 am because of the food requirement and Arakayce at 5:00 pm because it was a convenient time. With those two times, I decided to take the azithromycin with lunch. Almost immediately I had loose, frequent stools. While not pleasant, I can deal with it. Arakayce caused hoarseness for a while, but that improved. All of my monthly cultures have been negative since I began treatment. I do not have any cavities, and one doctor told me that he did not see any evidence of abscessus on my CTs. My guess is that this was found at an early stage and that Arakayce was very effective. After the first month, however, I ended up in the hospital and it was believed that my symptoms were side effects of Arakayce. So it was stopped, and in its place I now receive the IV Cefoxitin 4 gm q 12 hours through a picc line at home. I don’t know if I have symptoms as mine I think are from the fibrosis: SOB, fatigue. I require 15L of oxygen on exertion. I produce very little sputum. I am trying to be qualified for transplant. Some centers will not consider me because of the abscessus; others seem willing to work around it.

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Replies to "I had two positive cultures for abscessus last summer while hospitalized for an exacerbation of interstitial..."

robinzemp. You have sure gone through a lot. One doctor (not a pulmonary doctor) told me recently told me, "You're a fighter." Keep fighting.