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

Liked by ling123

@angiejohnson

@windwalker Thank you! I did see this doctor on the NTM site. I am seeing a Pulmonologist familiar with MAC, but looking for a 2nd opinion on length of treatment. So I was thinking ID doc would be a good second opinion. I will check into this doctor. I’m just surprised there aren’t any listed in Milwaukee.

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@angiejohnson, Like I said, just because they are not listed on that site; doesn't mean they aren't around. They probably are not aware that a site like that exists. If you find a good, mac knowledgeable doctor in Milwaukee, perhaps you can suggest that they register themselves on NTMinfo. Best of luck!

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@unicorn

Hi I wanted to add a few incredible doctors to the discussion. They are at Boston’s Massachusetts General and specialize in this disease. The Pulmonologist is Dr o Donnell. he is the one that turned me on to exercise and the nebulizer, because pills are not tolerated. Dr Hurtado is the infectious disease doctor. She gave me so much info, talked for an hour. I’m such a dingbat i should have recorded it. Anyway, both great docs, they do tons of testing and so far medicare covered almost all of it. xo

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Thank you for those recommendations. I live in RI and am close to Boston.

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@sounder27

Thank you for those recommendations. I live in RI and am close to Boston.

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@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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@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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@bonniewhite56, Hi Bonnie! I am just checking in with you. How are you doing these days?

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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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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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