Good MAC Doctor Recommendations

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.

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.

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

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

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

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

@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