It is amazing how having a diagnosis lit a fire under me. I suddenly felt justified–this was not just in my head, it was real. Also, I suddenly knew what to do next, a novel feeling after a year of being lost in a catalogue of endless symptoms that I had the guilty feeling I probably should just grit my teeth and ignore. First, I did research online. I read about lyme and confirmed that it matched my symptoms. By Nov 2nd, I had begun a diary that included a history of everything I could remember to date and a daily cataloging of my symptoms (based on a list of possible symptoms I found online). I knew this would be invaluable when I faced the next skeptical doctor. Next I talked with a friend of the family who answered some of my questions. This, combined with my online research, was my first introduction to the lyme wars, as I like to call them — he was so strongly in one camp that I felt unable to even ask many of the questions bouncing around my head. Last, I began looking for the right doctor… not nearly as straightforward a process as finding a good Massage Therapist.
My MD/homeopath, who ordered the tests that led to the diagnosis was smart enough to know that she should not treat me without the consultation of an expert. For this I am very grateful, as it is very important that any expert know his or her limits. She also apologized for not catching this sooner for me. Although I dismissed the need for an apology at the time, I have since come to be very grateful that she could say that to me. In reality, I am very lucky, as many people with the sorts of symptoms I have are misdiagnosed for years before, if they are lucky, they find out what is wrong. Also, her approach to treatment of my symptoms up until that time ensured that I had not been treated with remedies such as steroids that might have harmed my chances of healing.
I made appointments with three doctors, after getting recommendations:
The first, who’s office was 1.5 hours outside of Pittsburgh, was recommended to me by a staff person in my MD/homeopath’s office. This doctor falls into the controversial side of the lyme wars, and my MD/homeopath was quite upset that I was considering seeing him when she heard his name had been given to me. His nurse spent 45 minutes on the phone answering my questions about lyme when I called her at home to ask about making an appointment. She was compassionate, willing to answer any question, and absolutely wonderful. At the appointment itself, we spent about 3 hours speaking either with the nurse or the doctor, and again they were extremely compassionate and full of information. Also, they were very experienced, since their office specialized in Lyme patients. Unfortunately, they were not covered by my insurance and far away. Worse yet, the doctor had been on antibiotics for 18 years and seemed upset when I did not wish to begin a course of antibiotics that would last 2-4 months or longer. He fell squarely into the controversial camp, and was almost as inflexible as the doctors I encountered in the other camp. Even so, my husband and I left this office believing that we had probably found the people who would help us navigate this illness.
I next called every infectious disease specialist who any one recommended to me as having experience with lyme in Pittsburgh to try to get an appointment. I felt experience was important for obvious reasons, but especially important since there was disagreement about how lyme should be handled, but no question that someone who had been ill as long as I was more likely to be a complex case. One measure of experience was whether their office would be willing to see me right away, and this eliminated all but one office. Even that office could not get me an appointment with the doctor I wanted to see, but at least let me see another who was also highly experienced. Unfortunately, this office was not covered by my insurance. This doctor was also compassionate and willing to answer questions, though the appointment was much more typical in length. He was definitely in the other camp, but willing to discuss my questions in a more balanced fashion than the other two doctors. Also, he took certain symptoms I experienced seriously enough to recommend a more aggressive treatment than the previous doctor, and we believed that this was warranted.
The third appointment was with a “standard” infectious disease office covered by my insurance. He knew the doctor from the second appointment, and agreed to prescribe what that doctor suggested (thus ensuring that it would be covered by my insurance). His attitude was a little condescending, and he did not seem to like my questions. We had no urge to continue seeing him aside from financial need.
The best doctor of all is one I encountered a month later in an attempt to find someone truly willing to answer questions. I have only met him by email and by phone, but his willingness to talk, to discuss both camps in a balanced fashion, and to even discuss specific research papers has been tremendously helpful. More on my conversations with him and with the microbiologist who introduced me to him in a different post. Suffice it to say that stepping out of the doctor patient relationship and approaching a lyme researcher as an informed citizen asking their help made a big difference for me.