About two weeks after the antibiotics started, I was feeling slightly worse. My new symptoms included: headaches multiple times per day, especially when tired, increased weakness and fatigue (including having to sit down half way through lecture and feeling too weak to do my normal daily bike ride to drop my son off at school), light sensitivity, increased fatigue, occasional blurry vision, and additional back pain in new places. Additionally, I had no decrease in other symptoms. Since this did not seem to be a flu-like herxheimer reaction, I became worried about whether the treatment would work in the allotted 6 weeks. So I naturally thought it might be a good time to check in with my doctor, who I assumed would want to monitor the progress of my disease under treatment by the antibiotics, and possibly advise about next steps if I did not improve. I called his office to make an appointment … and was told by the nurse not to bother, he did not need to see me again. Now, he had not suggested that I make a follow up appointment when we last spoke, but I assumed this was an oversight: what doctor would not want to check in on a patient sick with a long-term, involved illness around which there was some medical uncertainty?
I called the office of the other infectious disease doctor I had seen (out of network) and asked to speak with him. Again I was told that I did not need to be seen. This time I pushed a little, explaining that I was getting worse. The nurse called back and told me to expect a call from the first doctor (they new each other). He called back shortly and explained to me that lyme could not possible survive the treatment I was getting (see the tag ‘lyme-wars‘ for more on this and other conflicting view points) and in fact he would have opted for a shorter treatment had it not been for my other doctor. He encouraged me to be patient and strengthen my immune system in case I developed an auto-immune response. However, this being outside his field, he saw no reason for me to come into the office again. This was more in line with what I would expect from a supportive physician, and I am glad that he called back.
This was probably a mild taste of what many lyme patients deal with over and over again as their symptoms wear on and on. For my part, it caused me to seek advice through the extended network of my family and friends, which luckily includes several lyme-literate individuals with medical training. More on that in other posts.