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I am new to this site but desperate to get help for my mother. She was a very young 83 year old when first diagnosed. Now 88 and doing progressively worse since being treated by a pulmonologist in Milwaukee where she lives. Currently she is on the ethambutol 400 mg , 2 tab daily, and azithromycin 250mg/ daily. She was on rifampin but had a very bad reaction as she is also on Coumadin. She also tried Aricayse for 4 months but could not tolerate it. We saw an ID doctor last week in Milwaukee as well. He just ordered another CT and culture. She also just started albuterol via nebulizer twice a day and it’s not helping much. We are wondering if going to Mayo would help. The pulmonologist says they wouldn’t do anything different. Any advice. She sees Dr. Gronski at St. Luke’s Hospital
Replies to "I am new to this site but desperate to get help for my mother. She was..."
Hi @almap, I'd like to add my welcome. Should you wish to consider a second opinion at Mayo Clinic, here is the information to request an appointment at the location of your choice: http://mayocl.in/1mtmR63
They will review your mom's records and tell you if they would offer the same treatment as you are receiving locally. Mayo Clinic doesn't want you to incur costs and travel unnecessarily. Top MAC experts can review options that may be different that your current infectious diseases doctor is aware of.
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When I was suffering as much or more from the treatment as from the infection, the ID doc was my salvation - after culture, he consulted by phone with National Jewish Health. Mayo, NJH, and a few other places are different - they are more willing to try the latest treatment models, and to treat the whole patient not just the lungs or infection.
In your place, I would try first to lean on the ID doc doing a phone consult with NJH about treatment choices for your Mom. (It might be easier on her than a winter trek to Mayo.) Failing that, it would sure be appropriate to seek another opinion.
How did the 2 of you feel about her ID doc?
Sue