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

@windwalker

@sounder27 Good morning, and Happy Memorial Day. Are you doing anything special today? Just wanted to let you know that @pamela37890 sees a good pulmonologist in Boston. Hopefully, she will jump in and share what she knows. Meanwhile, I will dig around and see what I can find for you.

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UMass in Worcester has great ID doctors and pulmonologists ( in my opinion).

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@windwalker

@sounder27 Good morning, and Happy Memorial Day. Are you doing anything special today? Just wanted to let you know that @pamela37890 sees a good pulmonologist in Boston. Hopefully, she will jump in and share what she knows. Meanwhile, I will dig around and see what I can find for you.

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Windwalker. Thanks. I appreciate it.

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I want to go to mayo Jax for an depth evaluation of my bronchiectasis
/ Mac. I live in Florida. Does anyone have a personal experience with this clinic and the doctors? Or a recommendation for a doctor?

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@chattey2

I want to go to mayo Jax for an depth evaluation of my bronchiectasis
/ Mac. I live in Florida. Does anyone have a personal experience with this clinic and the doctors? Or a recommendation for a doctor?

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Hi @chattey2, I moved your message to this discussion about recommendations of good MAC doctors. @windwalker can tell you about getting treatment for bronchiectasis and MAC at Mayo Clinic, Jacksonville, Florida.

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@chattey2

I want to go to mayo Jax for an depth evaluation of my bronchiectasis
/ Mac. I live in Florida. Does anyone have a personal experience with this clinic and the doctors? Or a recommendation for a doctor?

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@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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@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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@chattey2 Here is the link with the phone numbers for making an appointment at Mayo Clinic http://mayocl.in/1mtmR63

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@colleenyoung

@chattey2 Here is the link with the phone numbers for making an appointment at Mayo Clinic http://mayocl.in/1mtmR63

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Thank you for the number, but I already have an appointment. Just trying to get info on the doctor they gave me with and some info on what to expect when I go for first appointment at 6 am.

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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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Thank you for info. I live in Orlando. How about you

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I have just moved to Chicago and am searching for a pulmonary physician who is knowledgeable of mac lung disease. I appreciate any assistance in my search.

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@londonritt

I have just moved to Chicago and am searching for a pulmonary physician who is knowledgeable of mac lung disease. I appreciate any assistance in my search.

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Have you found a primary care physician yet?
I am fortunate to have a primary provider who is part of a large network of clinics and hospitals. When I needed a pulmonologist, I took her referral to someone, but after I saw him for a while I realized he was not expert in bronchiectasis, nor was he interested in collaboration with others. So I went to our physician-finder site and found a pulmonologist who listed bronchiectasis as a sub-specialty, and whose bio included collaborative medicine. Now I am a happy patient, even though she is quite a few miles away.
If you have such an option with your insurance, I suggest you look into being part of a multi-specialty network. Do you have choices with your insurance?
Sue

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@sueinmn

Have you found a primary care physician yet?
I am fortunate to have a primary provider who is part of a large network of clinics and hospitals. When I needed a pulmonologist, I took her referral to someone, but after I saw him for a while I realized he was not expert in bronchiectasis, nor was he interested in collaboration with others. So I went to our physician-finder site and found a pulmonologist who listed bronchiectasis as a sub-specialty, and whose bio included collaborative medicine. Now I am a happy patient, even though she is quite a few miles away.
If you have such an option with your insurance, I suggest you look into being part of a multi-specialty network. Do you have choices with your insurance?
Sue

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Thanks for your reply. What is a multi specialty network?

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@londonritt

I have just moved to Chicago and am searching for a pulmonary physician who is knowledgeable of mac lung disease. I appreciate any assistance in my search.

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Since Dr McShane went to Tyler, I believe there is only one MAC specialist here and he is at Loyola in Maywood west of the city. I can't remember his name but you can probably find it on their website. If not let me know and I will try to find it. I'm sure other physicians are familiar with it but don't specialize in it.

Dr McShane continues to treat my bacteria from Texas and I see Dr Strek at the University of Chicago for my other lung diseases including bronchiectasis. She is familiar with MAC.

Welcome to Chicago!

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