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Update On Treatment of MAC
Hello All! I had a vist to the Mayo this past Tues. I was first diagnosed with MAC in 2005. I refused the three drug standard treatment. Several weeks on antibiotics knocked it out. It came back in 2013, was treated with one antibiotic for 10 days a month on a monthly basis. It cleared up. Then in 2016, had pseudomonas infection. It was treated with bi-monthly tobramysin & cipro. It too cleared up.I asked my Dr why in the four yrs I have been going to the Mayo; that he never put me on the BIG THREE antibiotics. His reply, and I quote with his permission: The BIG THREE treatment is 'old school' and it is OVER-TREATING most patients. He said he gets new patients in seeking second opinions and that he takes no less than three people a week OFF of the BIG THREE. I asked what he prescribes instead. He said it varies depending on colony size, specie, patient history, etc. He stated that most drs prescribe the BIG THREE because it was the norm years ago, and they honestly do not know much about the disease. He only uses the BIG THREE when a patient does not respond to single antibiotic treatments, or is SEVERE and CHRONIC. I would guess Katherine may fall into that catagory. He also said that he sometimes doesn't recommend treatment at all because 90% of the time, the MAC clears up on it's own. That may be why someone recently posted she was confused as to why her dr did not want to treat it yet and wait and see. I found this info VERY interesting.
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I live in the Wake Forest/Raleigh area and go to Dr Mary Leigh Ann Daniels at UNC in Durham. She specializes in Bronchiectasis and NTM. I would highly recommend Dr Daniels. She has a great Video on Airway Clearance (see link) https://www.youtube.com/watch?v=TKA5IR7ePQo. I also went to National Jewish and saw Dr Huitt. I prefer the lab at National Jewish as they can tell you exactly what bacteria and how many colonies. Previously I had gone to Duke Pulmonary but did not find a DR there that would be qualified to treat Bronchiectasis or Mac.
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3 ReactionsThanks for the update. Will check unc out.
Thanks so much for the guidelines. Will be checking them out. You all so good in giving us information. Miriam
I live in Wilmington,NC and I have an appointment at UNC-CH Wed. 12/8. This is my 2nd visit. I am seeing Dr. Despotes. I don't think she has the knowledge or experience with bronchiectasis as Dr. Daniels from what I am reading. I will ask Wed. if she is conferring with Dr. Daniels. She has to work in Peds. about half the time and looking at the web site, she is not listed in the lineup of staff in the Pulmonary Specialty Clinic. She has been very responsive to my messages on MyChart and has. been very careful about the meds that she prescribes for me and tells me the reason she is doing it. I like that she communicates. Refreshing change!!
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1 ReactionThank you. That is good info to have.
I was at UNC this past Wed. and had sleep study Wed. night. I was very please with the care and knowledge of all except for the Respiratory Therapist. I think has limited knowledge of treatment for bronchiectasis
Hi Raney, I am not sure who you saw at UNC but Dr. Daniels is the Director of the UNC Center for Bronchiectasis Care and she has a lot of experience with both MAC and Bronchiectasis. The center is located in Durham.
I went to UNc Pulmonary Specialty Clinic in Chapel Hill.. Dr Leigh Anne Daniels name is asso board with that clinic.. is that the same Dr Daniels at Durham? Duke??
Yes, she is excellent and very knowledgeable. See her experience below: I don't know any of the other Dr's, who did you see there?
Dr. Daniels is the Director of the UNC Center for Bronchiectasis Care. She gained her MD from Rutgers New Jersey Medical School in NJ in 2006, including an MPH in Biostatistics & Epidemiology. She trained in internal medicine and pediatrics in Rochester, NY (2010), followed by a fellowship in diseases of the lung at the University of North Carolina, Chapel Hill, NC (2013). Since her appointment to the faculty at UNC, she focuses on the diagnosis and management of patients with all causes of bronchiectasis, including cystic fibrosis and primary ciliary dyskinesia (PCD). Extending from her clinical experience with these patients, her research particularly focuses on discovering the genetic variations that contribute to the development of idiopathic bronchiectasis (bronchiectasis without a known cause). These people are frequently infected with non-tuberculous mycobacterium (NTM), and many have family members with bronchiectasis. She is part of the research endeavors of the national Genetic Disorders of Mucociliary Clearance Consortium, the PCD Foundation, and the Bronchiectasis Research Registry. She is a co-investigator for several clinical trials for PCD and idiopathic bronchiectasis. She gave the prestigious “Grand Rounds” lecture at the UNC School of Medicine on the State of the Art, diagnosis, and management of NTM. She enjoys working with patients of all ages to improve their quality of life with bronchiectasis through optimal management of their lung disease.
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2 Reactionsthank you for that Info. I saw Dr. Katherine Despotes. She works in Peds lot of the time. I asked to see Dr. Daniels but I was told that Dr. Despotes consults with and works closely with Dr. Daniels. I have been pleased with Dr. Dispotes. She is working to get my meds straight. It is trial and error for now....