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chinasmom
@chinasmom

Posts: 91
Joined: Sep 11, 2016

Good MAC Doctor Recommendations

Posted by @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

REPLY

Becky, why are you searching for infectious disease doctors if you have been diagnosed with MAC?

I’m glad to have found this group. My husband has just recently been diagnosed with having MAC, and started antibiotic treatment. We are looking to consult with another doctor in the San Jose, CA area who has experience treating this disease.

@joan912

I’m glad to have found this group. My husband has just recently been diagnosed with having MAC, and started antibiotic treatment. We are looking to consult with another doctor in the San Jose, CA area who has experience treating this disease.

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Hi @joan912, Welcome to the MAC group on Connect.
I moved your message to a discussion that @chinasmom recently started, so that the group can start a list of recommend doctors across the nation (and internationally even). I understand you’re looking for a doctor in the San Jose area.

See great info that @boomerexpert and @128128terry11t offered http://mayocl.in/2og8RBc
Boomer says:
“Use this link: https://www.ntminfo.org/patients/physician-referral-list

Terry suggests:
“If you called Mayo or National Jewish, might they be willing to give you a name if there is no liability issue? When I went to National Jewish, they gave me names of experienced clinicians in my area.”

@joan912, Joan even though it is your husband who has MAC .. YOU will more than likely end up being his advocate. My husband has health issues and I tease him that I am his “unpaid medical secretary”! He retorts that I am “well paid” .. hmmm! Well, as such I would strongly suggest you start reading the pages at our Main MAC Forum https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=34

where you will find more knowledge than MANY Pulmonologists have on MAC! Don’t forget .. in being your husband’s best advocate “KNOWLEGE IS POWER!” .. you will see at the top of each page help on keeping notes as you read the pages. Then feel free to come back to the Main MAC pages to get help .. support .. answers from our wonderfully supportive members. We have all walked the walk you are on right now .. AND we will be there for you every step of the way. We know how scary it is in the beginning .. BUT there really is light at the end of the tunnel! I have been off antibiotics .. “stable” since May 2014 .. things DO get better! Sending both of you a hug in this tough time! Katherine

@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.

Liked by chinasmom

From my File Cabinet .. hope it helps! Hugs to all! Katherine
From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card……no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests….especially as they were added.
Member @beatitnow ..my doctor is Dr. Castro at Barnes Jewish Hospital. The phone number is 314-454-8917
3. DOCTORS-NYC From membe @ehliny: outstanding pulmonary doctor in NYC: Dr. Louis de Palo at Mt. Sinai Respiratory Clinic: (212) 241-5656. I also have a first-rate GERD doctor in Dr. Jonathan Aviv, 210 East 86th St: 212-722-5570. Dr. de Palo is not quick to prescribe antibiotics if you don’t show full range of MAC symptoms. Dr Aviv (and I) believe there is a strong association between gastric reflux and lung disorders. I have a lot of confidence in both these physicians. Dr. Timothy Aksamit at MAYO Rochester had also recommended a NYC doctor for MAC, Dr. Doreen Adrizzo Harris, at NYU Pulmonary Medicine.
4. D0CTOR-ATLANTA GA
From Membeer @janovr .. Dr. Colin Swenson Emory/St. Joseph’s Hospital Atlanta, GA

Liked by tdrell, chinasmom

@joan912

I’m glad to have found this group. My husband has just recently been diagnosed with having MAC, and started antibiotic treatment. We are looking to consult with another doctor in the San Jose, CA area who has experience treating this disease.

Jump to this post

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

@joan912

I’m glad to have found this group. My husband has just recently been diagnosed with having MAC, and started antibiotic treatment. We are looking to consult with another doctor in the San Jose, CA area who has experience treating this disease.

Jump to this post

Hi Colleen, I think I did it? but I see the comment here so not sure. xo

@joan912

I’m glad to have found this group. My husband has just recently been diagnosed with having MAC, and started antibiotic treatment. We are looking to consult with another doctor in the San Jose, CA area who has experience treating this disease.

Jump to this post

Thanks @unicorn. You did it. I see your post with the doctor recommendations.

@joan912

I’m glad to have found this group. My husband has just recently been diagnosed with having MAC, and started antibiotic treatment. We are looking to consult with another doctor in the San Jose, CA area who has experience treating this disease.

Jump to this post

@unicorn .. Christa you are NOT a “dingbat” .. you are one smart cookie .. AND have contributed wonderfully to our community .. I am grateful you are a part of us! Hugs to you! Katherine

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

@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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Hi @bonniewhite56 and welcome to the MAC group.
You’ll notice that I moved your message to the discussion thread called “Good MAC Doctor Recommendations” where the members share their experiences and recommendations with good MAC docs.

@windwalker @decosmo @pal131 and @maryjo2sell are all patients of Dr. Leventhal at Mayo Clinic, Jacksonville, FL. I’m confident that they share their experiences with you and answer any questions you may have to help you prepare for your appointment and get the most out of it.

@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 Hello Bonnie and welcome to our forum! I
understand that you will be going to the Mayo Clinic in Jacksonville; and seeing
Dr. Leventhal? I am a patient of his and I just adore him. Since I have been
under his care, my quality of life has increased significantly. After many years
of misdiagnosis', I finally got proper care and treatment through him. Please
feel free to ask any questions (none are too small or stupid) or share your
illness experiences with us. This is a wonderful forum with a wealth of
information and support. I am glad you are being seen at Mayo. You will be in
very good hands. When is your appointment?  – Terri M.
 

@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

Jump to this post

Welcome!

@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

Jump to this post

Thank you. I knew in my reading thru all these posts someone recommended him. Now I know who! I see him on august 15.

Connecting to this site has helped me to take matters in my hands about my health. I appreciate all the sharing of medical info so much. My doctor now actually was angry when I suggested I wanted a second opinion. It was shocking and scary. I feel hopeful just having made the appointment.

I will be making my notes to take to the doctor! Thank you so so much.

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