Totally Agree! Dr. Thomas Borody in Australia cannot be trusted. I communicated with this man directly and ask him if he would consider treating me. He told me what he needed and I sent him everything within a day or 2. He agreed that he would treat me after looking over my pathology reports w/ the additional info I sent him.
Long story short, his assistant, Vic and the people that work to do the international coordinating are terrible. I would wait to hear from them so I could start to plan my trip and never hear anything from them. Even the simple information that I asked for, nothing. 2 weeks would pass and I'd get a response like "you haven't gotten an appointment yet?" I finally wrote the doctor, as I was getting nowhere with the staff there and he must not have liked my message. The next day Vic, his assistant wrote the most cruel and dismissing letter that said something like this "sorry, the doctor doesn't think he can help you". THEN adds this jab to the mix "Maybe you should go back to the Mayo Clinic since they provide such excellent care" (I went there a long time ago and they recommended the same thing all the other doctors did... humira).
The Mayo Clinic at least has the patient planning and coordination down.. I mean it's easy breezy. I can't even remember having to plan for it. I had sent Vic a link of the info I needed that was all laid out on the Mayo Clinic Site.. the link provided an example of everything I needed from them to plan. It was an example. Well, that was it for me after that. They basically wiped their hands of me and never communicated to me after that. Not even consideration for a referral I requested (it's also an ethical responsibility that the doctor has to the patient in the event that a doctor cannot provide the agreed treatment. It's against the law there to not provide the patient with the info/resources needed to get help elsewhere)
I was led on for months that he would be treating me. It was a devastating experience.
I would not recommend that anyone chance it with the CDD in Sydney. Their agreement means nothing. No loyalty to the commitment they make to people that are putting their hope in them. I don't understand how they can do that to anyone super ill. (They had categorized me as severe and that meant the doctor wanted to get me there a year earlier due to how bad the disease was/is, despite the waiting list that pushed far into the summer of 2015.)
Just wanted to share my experience with that place and Borody.