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Are you considering antibiotics for a MAC lung infection??
Are you considering antibiotics for a MAC infection? If so, I want to share with you that for the last year I have been on the patient advisory committee for the MAC2v3 study.
The study is designed to test whether two drugs (azithromycin and ethambutol) are as effective in treating MAC as the “big three” (azithromycin, ethambutol, and rifampin).
The trial is for 12 months. To participate, you need to be able to produce a sputum sample.
They currently have an amazing network of 30+ physicians (including mine!) at 22 sites from Hawaii to New York to Texas to Toronto.
And, great news!!!
Patients can stay with their doctor and be referred virtually for this study without the need to travel to test sites.
If you would like more information, they have a website https://mac2v3study.org/ and I have found them to be excellent to work with. Currently there are about 300 enrollees and they need another 200 to complete the study. Take a look at their website and email them with your questions.
Do you prefer to ask me questions or have me e-introduce you to the team? Can do! Just message me and let’s start the conversation.
Warm regards,
Linda Esposito, MPH
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Thank you, Linda. I just sent over an email. I am not sure if I want to go that route. But, as my symptoms are getting quite annoying, I've been thinking about it.
Thanks, again!
Always good to gather as much information as possible. Then you can make a well-informed decision. All the best to you, Linda
Hi Linda,
I want to thank you for your encouragement and suggestions when I posted that I was going to see Dr. Winthrop. I had my appointment last week and he is wonderful! Definitely a human to (much more knowledgeable) human connection. He really showed me exactly where my BE is and how it has changed since CT scan in 2017, including a new spot. He has me pretty convinced to go from watching a waiting (with ACT etc.) to treatment and I will most likely opt to participate in one of the studies he mentioned, possibly this one. Next step is review of the CT scan from last week and culturing the sputum samples. OHSU is an amazing place! Thanks for your advise and support.
Anna
Hi Anna,
It makes a world of difference when you have a doctor like Dr Winthrop or my doctor Dr Addrizzo-Harris at NYU. I want that for everyone!! All the best, Linda
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1 ReactionDo you have to already be diagnosed with MAC, or is it ok for your Dr to say “it’s probably MAC?”
You need to have your sputum analyzed. It is important to know.
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2 ReactionsI have not heard back from them and am wondering if I can take you up on the offer to provide e-intro? I have learned much more from this site and your book than from my Kaiser dr.
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2 ReactionsCan I please have the name of them book your reference and I too would like a e-intro. Thank you.
Yes, I would be happy to make an introduction to a study coordinator. Please email me your name at becleartoday@gmail.com. I believe the moderators of this forum prefer that we not post our email addresses, but mine is already available online. Furthermore, I am sure we want people to access the best care. The clinical trial could potentially impact the protocol for the treatment of MAC. Linda Esposito
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3 ReactionsPlease see my reply to @equanimous. Thank you, Linda Esposito