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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Does anyone know of a doctor’s name or names that you might refer me ? I have been going to MD Anderson and they just refuse to follow up or give any treatment options. I was put in the Big 3 in 2009 and did well but they never even did a CT scan or any sputum cultures when i finished the drugs and they never even explained any side effects regarding eyes or hearing so I have been pretty much in my own . I am so fatigued that I am considering myself to be an invalid and did not know what to do. I found your blog and I am so thankful to all of you and now I realize how shabbily I have been treated at MDA . I was so ignorant I didn’t even know you should have a C.T. scan or sputum cultures . I will go anywhere to see someone who might treat me will a little dignity and caring. I am in Houston . Thank you!
Replies to "Does anyone know of a doctor’s name or names that you might refer me ? I..."
@prelle1 I am going to suggest you google pulmonologist in your area. The majority of their staff will talk to you without you first making an appointment. If you can’t find someone, PM me and I will help you...
@prelle You can go the the website http://www.ntminfo.org for a list of doctors in your area that are certified in the care of MAC and Bronchiectasis.
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@prelle1 I agree completely with @egayle187 -- you and all of us deserve dignity and caring, and treatment from doctors with knowledge and expertise in NTMs including MAC. Diagnoses with NTMs have increased and are set to overtake diagnoses of Tuberculosis in the future, so it's about time there was more awareness and knowledge in the medical profession. And we need them to be kind and thorough as well.
I wish you luck with getting much better medical care soon.
This is a long-shot, and I don't know what he is like, but there's an international medical expert on NTMs and MAC at the University of Texas in Austin -- Dr Richard J Wallace. Have a look at this link: https://www.maclungdisease.org/richard-j-wallace-jr-m-d/ . He doesn't take patients at the moment, but I'm pretty sure that contacting his clinic at the University of Texas Health Science Center would help you get referred to a doctor with the right expertise. (Address: 11937 US HWY 271, Tyler, TX 75708, USA, (903) 877-8953 ). There's also a web page on how to become a patient at UT Health: https://www.maclungdisease.org/how-to-become-a-patient-at-uthsct/ . It sounds like you don't have all the test history they normally need but explain that to them, explain what has been happening to you, and take all the information on your medical history and treatment that you can get hold of.
Please let us know how you are going. Good luck! Annie