I arrived in Utah just before noon and I was already getting a call from the clinic asking how I was feeling and if I needed to be picked up for my blood work. I told them I had slept on the plane and felt fine to drive. I would see them shortly.
I had a tour of the clinic and they shared a lot of info with me. I was very relieved that they expected my brain fog because I was having trouble taking it all in. They keep referring to "Lyme Brain" and telling me not to worry in a few days it will all be second nature. Its nice being around people who get me.
The meeting with the doctor is very encouraging to me. He reiterates what the New York doctor said about why there are so many false negatives in North America and how our testing system has always been failing us, so we need to start diagnosing clinically. He is well aware how backwards Canada is and how it is not only not recognized properly but also could never be treated properly in my country. Canada's statistics say there were 22 cases of chronic lyme in 2014 and 70 in 2015. That makes the experts laugh as they say there is proof of closer to 250,000. Sad to say I can go from running a half ironman to not able to walk more than 5-6 minutes on a treadmill and no one thinks there is an issue.
I want to tell him how the fill in doctor (my doctor happened to be on a year leave when I got really sick) snickered at me when I said I wanted to see a Lyme Specialist in New York. How she told me I needed to wait for more symptoms to develop before she could diagnose it (I guess 51 were not enough). And how she refused to read the info from the Specialist and how she said she would not even prescribe what the American Doctor recommended without a positive test. Thats how it goes in Canada. So a hard working, educated, active, and normally healthy Canadian has to spend all her savings to get any help at all. I have decide to accept that I don't understand the legalities and the challenges enough and let it be. I have to believe that no country or person would let some one suffer for no reason, when an open mind is all that is needed.
I am here in Utah now with people that believe me, supported by family, friends and other medical professionals who believe me and I am going to get better. I am going to make every penny spent on this and any treatment worth it. The people in my community have made me cry more than once in the process. I am blown away by the generosity. I wish there was a way to express what it feels like, but I just can't find it right now. I just cry every time I think about it. I must find a way to describe that feeling. I once felt very rejected by a system, but feel so loved by a community.
One of the staff describe one of the strains of Lyme I have, bartonella, by saying "oh you have that bastard". I didn't really know that one could be worse than the other, but I have decided to call them all bastards. And those bastards have finally met their match. They planted themselves in the wrong girl, who has travelled to the right places and they don't stand a chance.
The doctor tells me that over the next week, I am not going to like them very much. I am going to feel worse and better more times than I can count. I am going to hate the treatments and how they push me. I told him I had already had a few rounds with Lyme, then antibiotics and I am ready for the next opponent. He expects there to be Herxes (detox reactions) as well. He explains that this is not a straight road of improvement, it is full of "hills and valleys". He believes at some point everyone wants to quit. But then he proceeds to tell me that it is possible that I do an Ironman again someday. On that note I say "bring it on"!