Good MAC Doctor Recommendations

Posted by chinasmom @chinasmom, Apr 7, 2017

I have been searching for either an infectious disease doctor or a pulmonary doctor in the St .Louis Missouri area to treat MAC. It’s exhausting work. I currently have pulmonary doctor with a prescription pad and an infectious disease student.
Please help if you know of a good one.
Becky

@sueinmn

Hello, if you don't get a recommendation here, another thing to try is their internal "Request an Appointment" feature. Search for pulmonologists, click on the "Request a Call…", fill it out, specifically explaining all of your lung issues & leave the physician name blank. When you get the call back, press for someone with bronchiectasis experience. The caller may need to go back to the department to find out exactly the right doc(s) for you.

This has worked for me in finding a new hand surgeon and finding the right rheumatologist for my husband's rare type of arthritis.
Sue

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Thanks @sueinmn

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@colleenyoung

@rmason and @thielmann1, I've added your request for MAC doctor recommendations at NJH and Barnes to this discussion.

Good MAC Doctor Recommendations https://connect.mayoclinic.org/discussion/good-mac-doctor/

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@rmason

I was wondering if anyone can recommend a pulmonologist affiliated with Barnes hospital in St Louis who has expertise in treating MAC and bronchiectasis…

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You can also check here for people with MAC/Bronch experience in your area: https://ntminfo.org/united-states-of-america/
Sue

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Does anyone have knowledge of Dr Michelle Jones at Piedmont Hospital in Atlanta? Says she specializes in MTM. Recommended by my pulmonologist, but they are same hospital system. I’d like to hear from a patient, please.

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Need ID Dr in Atlanta/Chattanooga area.
I was diagnosed with Mac and Bronchiectasis in Jan of 2020. My pulmonologist recommended seeing an ID doctor. However, I’ve chosen to work with a Holistic doctor. I’m really doing well – feel good. Appreciate the progress working with her. My cough goes and comes and was at it’s best in June. I had a sputum test in June that came back negative. However, a CT in May showed new nodules.
I would like to consult with an ID doctor. From this site I think I need a nebulizer. My Pulmonologist recommended someone local until I said I wanted someone with experience and knowledge. Then, she recommended someone from her hospital/health care system that says she specializes in Bronc and Mac. I think I earlier saw someone recommend a doctor from Emory University. Either of these doctors are about and hour and a half away so that doesn’t make a difference. I just want the best to consult. I’ve considered Jacksonville, but one of my heart doctors said if I was going to Mayo to go to Rochester. They were the only place working together between specialties.
Is there anyone on this forum that has knowledge and experience in this area? I am also about an hour from Chattanooga so that area is an option also. Thanks for your expertise.

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@marianm44

Need ID Dr in Atlanta/Chattanooga area.
I was diagnosed with Mac and Bronchiectasis in Jan of 2020. My pulmonologist recommended seeing an ID doctor. However, I’ve chosen to work with a Holistic doctor. I’m really doing well – feel good. Appreciate the progress working with her. My cough goes and comes and was at it’s best in June. I had a sputum test in June that came back negative. However, a CT in May showed new nodules.
I would like to consult with an ID doctor. From this site I think I need a nebulizer. My Pulmonologist recommended someone local until I said I wanted someone with experience and knowledge. Then, she recommended someone from her hospital/health care system that says she specializes in Bronc and Mac. I think I earlier saw someone recommend a doctor from Emory University. Either of these doctors are about and hour and a half away so that doesn’t make a difference. I just want the best to consult. I’ve considered Jacksonville, but one of my heart doctors said if I was going to Mayo to go to Rochester. They were the only place working together between specialties.
Is there anyone on this forum that has knowledge and experience in this area? I am also about an hour from Chattanooga so that area is an option also. Thanks for your expertise.

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@marianm44 I did see a pulmonologist at Mayo Rochester about my asthma. I kept getting lung infections from having trouble clearing my lungs and I was concerned about MAC. It turned out, I only had asthma, but here is the profile for the Mayo pulmonologist that I saw.
https://www.mayoclinic.org/biographies/skalski-joseph-h-m-d/bio-20382463
There is a Mac & Bronchietasis discussion group, so you can connect with other patients there. I see you have already posted there, but did you see this discussion about doctor recommendations?
https://connect.mayoclinic.org/discussion/good-mac-doctor/

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@marianm44

Need ID Dr in Atlanta/Chattanooga area.
I was diagnosed with Mac and Bronchiectasis in Jan of 2020. My pulmonologist recommended seeing an ID doctor. However, I’ve chosen to work with a Holistic doctor. I’m really doing well – feel good. Appreciate the progress working with her. My cough goes and comes and was at it’s best in June. I had a sputum test in June that came back negative. However, a CT in May showed new nodules.
I would like to consult with an ID doctor. From this site I think I need a nebulizer. My Pulmonologist recommended someone local until I said I wanted someone with experience and knowledge. Then, she recommended someone from her hospital/health care system that says she specializes in Bronc and Mac. I think I earlier saw someone recommend a doctor from Emory University. Either of these doctors are about and hour and a half away so that doesn’t make a difference. I just want the best to consult. I’ve considered Jacksonville, but one of my heart doctors said if I was going to Mayo to go to Rochester. They were the only place working together between specialties.
Is there anyone on this forum that has knowledge and experience in this area? I am also about an hour from Chattanooga so that area is an option also. Thanks for your expertise.

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I was diagnosed with MAC & bronchiectasis in Nov. 2017. Originally I went to Mayo Clinic in Jacksonville for a consult with Pulmonologist Dr. Margaret Johnson. I am now her patient & recently was referred internally to an ID Dr. to discuss possible treatment with the “big 3”. Based on that consult, I did not start treatment. I would suggest that you contact Mayo in Jax for an appt. Take care.

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@bee1950

I was diagnosed with MAC & bronchiectasis in Nov. 2017. Originally I went to Mayo Clinic in Jacksonville for a consult with Pulmonologist Dr. Margaret Johnson. I am now her patient & recently was referred internally to an ID Dr. to discuss possible treatment with the “big 3”. Based on that consult, I did not start treatment. I would suggest that you contact Mayo in Jax for an appt. Take care.

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Thank you. That’s high on my list of options.

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My 88 year old mother has been treated by a pulmonologist in the Milwaukee are for MAI and Bronchiectasis for the last several years. She is currently on Ethambutol 400mg/2 tablet daily and Azithromycin 250 3x/ daily. Rifampin was attempted and lead to horrible consequences because she is on Coumadin. They tried Aricayse nebulizer for 4 months and she could not tolerate it. She is losing weight and increasingly short of breath. Before this she was an active , strong woman always looking much younger than her age. I’m reading about saline treatments etc and wondering what else can be done. Does anyone know of a specialist in the Milwaukee area. Or Chicago?

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@almap

My 88 year old mother has been treated by a pulmonologist in the Milwaukee are for MAI and Bronchiectasis for the last several years. She is currently on Ethambutol 400mg/2 tablet daily and Azithromycin 250 3x/ daily. Rifampin was attempted and lead to horrible consequences because she is on Coumadin. They tried Aricayse nebulizer for 4 months and she could not tolerate it. She is losing weight and increasingly short of breath. Before this she was an active , strong woman always looking much younger than her age. I’m reading about saline treatments etc and wondering what else can be done. Does anyone know of a specialist in the Milwaukee area. Or Chicago?

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Almap, You'll notice that I moved your question about search for a MAC specialist to this existing discussion called "Good MAC Doctor Recommendations."

Fellow members @jkiemen @sophie1019 @Paula_MAC2007 @tdrell from the Milwaukee area may be able to provide some specialist recommendations.

@londonritt was just asking about a specialist in Chicago. See recommendations they got starting here: https://connect.mayoclinic.org/comment/619422/

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@katemn

@becky33 Becky, I’ve moved your Post to: FINDING A GOOD MAC DOCTOR .. because we are trying to start a File Cabinet for newcomers trying to find good MAC doctors who know what the heck they are doing! Becky thank you so much for jumping to help .. it will help newcomers in the future! Hugs! Katherine
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Posted by @becky33, 2 minutes ago
Dr. Adam Anderson M>D. Assistant Prof of Medicine, Division of Pulmonary and Critical Care Medicine at Washington University in St. Louis School of Medicine is my MAI Dr. His phone is 314 454 8763 and address is 4523 Clayton Ave. St. Louis, Mo. 63110. To schedule an appointment use 314 454 38917. His nurse is Anna Ellis at 314 273 1457. I was just diagnosed in Jan and been on the 3 meds since Jan 20th 2017. Also, Dr. Anderson ordered me a Smart Vest which I believe has helped a lot. Go back to him on April 28th to start all the routine testing MAI patients get. Will post what all he orders after I see him. If he doesn’t order vision/hearing etc I will be asking him for them. Know he’s doing kidney and liver as he told me that.

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Has anyone been to a MAC doctor in Tyler, Texas?

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@windwalker

@chattey2 Hello. I would highly recommend going to the Mayo Clinic in JAX. I started going there in 2013. I have been mac free since 2014. I had been sick as a dog for the ten yrs prior to 2013. I had been misdiagnosed, and was never put on antibiotics long enough for them to make a difference. I was seeing Dr. Leventhal, but he is retiring next month. His replacement is Dr. Johnson. She has won several awards for being an outstanding physician. Her specialty is mac and bronchiectasis. Mayo only hires the best, and they run that place like a well oiled machine. All tests are run in the same day, you get the results at the end of the day when you meet with the treating physician. A treatment plan is then set forth. There is no waiting weeks for test results (except for growing mac at the lab), and the Mayo has pull for getting insurance to pay for meds they would not normally cover. Mayo got my tobramycin covered. That is the drug that ultimately cleared me of mac and pseudomonas. You do not need a referral, just call and make an appointment. Please keep me posted on what you decide. Where in Florida do you live?

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What other antibiotics do you take along with Tobramycin?

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