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Just found out I have mycobacterium abscessus!

MAC & Bronchiectasis | Last Active: Apr 12, 2023 | Replies (118)

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@thielmann1

After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford, I decided to take myself to National Jewish Health and ask to be seen by Dr. Huitt, on the recommendation of a few infectious disease doctors. I called them, they interviewed me extensively, and then set up a 10 day visit at NJH in Denver. My time there was well spent as they gave my an extensive battery of tests and sent me to classes. I have been MAC free for 4 1/2 years now; however, this abscessus has just shown up in my sputum sample, which has been quite discouraging for me. Since Gwen Huitt only focuses on MAC, I found her to be much more knowledgeable than my 2 pulmonologists that treat a variety of diseases, of which MAC is one. I will let you know how visit goes with her. Nancy

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Replies to "After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford,..."

Hi Nancy. Yes! Please do check back and let us know what you learn. Good luck with everything. -Terri

Hi Nancy and others reading this….I have had a similar experience . Treated for MAC three years ago at NJH IVs and 18 months on big 3….negative for over a year…now very sick….broncoscopy and grown cultures positive for Abscesses…my doctor at NJH is putting me on a daily IV regime of four active drugs 3 months before surgery and 3 months after Devastating news….my husband will administer my daily IVs thank God he is a wonderful caretaker a d as familiar and disruptive to my body interventions antibiotics are and as uncomfortable/painful 6 months of wearing a pic line is I welcome anything doctors can do to treat this awful disease. I feel horrible.