I got an email this morning as I prepare to travel to Utah for a new treatment alternative for Lyme. I am further encouraged by her response and had worried what she would think. I did not want to take away from what she had done for me...I feel she truly saved me at my most desperate time and I will be forever grateful for the day we met.
At my worst, two good friends picked me up, took me across the border and waited while I met with some very knowledgeable Lyme specialists. The clinic had become mostly Canadian patients travelling to the closest resource that would help them, which meant travelling to another country, as sad as that sounds. After 3 and a half hours of assessment, I was told I had two strains of Lyme, babesia and bartonella. It would require up to 5 antibiotics and double that in supplements, with an incredibly strict diet for up to three years, to battle most of the disease but never fully conquer it.
At the end of my appointment, I sat there not able to speak and the nurse said to me "what are you thinking" to which I responded " I really have no idea, I just feel stunned. And not in a bad way, as if I got bad news, just stunned or numb." She said to me "I know exactly what you are feeling because it is the same thing everyone feels at this point. It is shock, but shock that someone actually listened to you and somebody said I believe you are very sick." I was not able to express it myself, but that was exactly it. For the last three years, I just wanted someone to believe that I wasn't okay, but all people ever told me was how healthy I was. So much so, I didn't even believe myself anymore.
As I headed home that day, I was on a high. I finally had a reason, a solution and a plan. I could start living my life again. I remember very well letting my colleague (who had been treated for Lyme as well) know my diagnosis. I remember thinking how little enthusiasm she had for me and I wondered why. I told work that I may be sick for a bit but I intended on working on my good days. I was prepared for the decline before you get better and the detox reactions they warn you about, called herxes as the bacteria gets killed off in your system. That was no concern for me, I was prepared to take on anything as long as it meant I would get better. Or was I?
The first week seemed fine and into the second week I started to wonder what all the warning were about. Man, do I regret my cocky attitude, because before the second week was over, things declined very rapidly. I have never done well with antibiotics, and as I added new ones to my regime, I had more and more trouble keeping them down. I couldn't eat any sugar (refined or natural), any grains except for brown rice, no root vegetables, only some fruits, and organic meat. I had to protect my liver because it would be in jeopardy with all of the antibiotics and anything that would feed yeast would feed the bacteria. If the antibiotics couldn't get at it for the yeast, it would not be able to kill it off. So I could eat very little, I could keep very little down and my fatigue and pain skyrocketed. And well, I only had three more years to go. Regardless, I still felt very blessed that I had a solution and this time no one would take that away.
A very good medical friend did not quite see it the same way and felt I was putting too much at risk by continuing the treatment I was on. He found a new treatment regime that was being offered in Utah based on years of research and test cases. They had refined a treatment regime down to six key systems. It was three weeks intensive treatment and then three months at home treatments and a cautious regime forever but the potential for full recovery. Full recovery had never been an option till now. So what did I have to lose other than my retirement savings ;-)
When I started to investigate the idea and spoke with the clinic on several occasions, it became clear to me that this was worth trying now and would only help me even if I had to revert back to the antibiotics later. It was a lot of money and I worried what my family would think, but my husband barely hesitated. He didn't think he could watch me do what I was any longer and insisted we had to find another solution.
And as I prepare for my trip and read that email from the doctor in New York, that started this reflection, I am so happy to know she thinks what I am doing is a great opportunity. She was aware of many patients that had benefitted from one of the treatments the clinic was doing. But she knew very little about the other five. She encouraged me to take a pause in my existing course of antibiotics and try it. She also encouraged me to bring back as much info as I could to share, it could only help others. I didn't think I could respect her any more than I already did, but I did.
So I started this blog...