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National Jewish Health NTM Patient Conf Recording available!
MAC & Bronchiectasis | Last Active: Jun 2, 2023 | Replies (16)Comment receiving replies
I saw Dr. Kevin Winthrop there on May 10, and liked him very much as well as the whole set up at OHSU. Everyone involved was compassionate and efficient. It's a 5-6 hour drive for me so they managed to get at CT scan and blood work done within hours, and I dropped off a sputum sample before leaving the next morning. I asked for a referral after seeing Dr. Winthrop on a video discussing when it's appropriate to watch and wait and I questioned my pulmonologist's recommendation that I start the big 3 immediately. Turns out Dr. Winthrop concurs with my pulmonologist, but he was able to show me the hows and whys. Waiting on the sputum cultures now, but I'll likely participate in one the trials he is doing.
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Thank you. I am waiting to see if I should re-start the Big 3 + take Clotermizine. It would be a new med for me as it was discovered 8 months after taking Ariykace I am resistant. I am also a Lung Transplant Candidate and waiting to start a work up to be placed on the list. In the interim I am trying to decide if I obtain a 2nd opinion or just start the new medication along with the Big 3. I am feeling overwhelmed with trying to make the right decisions and scared.
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Hi, I am interested in what trials are available at NJH.
UC at San Diego has a bacteriophage department that may have phage viruses specifically targeting MAC. I am waiting for speciated results to my robotic bronchoscopy biopsies. I believe there are bacteriophage repositories at a few universities around the country.
Does anyone know of a working AI tool for matching MAC bacteria to bacteriophage strains? If there is not such a tool already in existence, there is a need, since phage therapy may be viable for a multitude of bacterial infections.