Lyme Disease: In a Patient's Own Words


Editor's note: This is the first-person case history of a Lyme disease patient who contacted me online after reading the Lyme disease lecture notes. Her story is worthwhile reading, not only because it illustrates some exemplary features of this elusive disease, but because the patient-author is such an articulate and objective historian. It's too bad all patients cannot communicate their problems so well!
-- Ed Uthman, MD

The way I was diagnosed was a long involved story, so I hope that you have the patience to read it. I will try to make it as concise and interesting as possible.

In August of 1994 I vacationed to Cape Cod, Massachusetts. (I live in Michigan). We also went to Lenox, Mass., for two days to hear the Tanglewood Music Festival. (Had been a life-long dream of mine, the Tanglewood excursion, being the music affectionado that I am). In order to get there, we walked three miles each way at night, through a dark, wooded, grassy area much of the way. Being in excellent physical shape, the hike was no problem for either of us. I did not use any insect repellent, as was three weeks pregnant at the time, and did not want to take any chances. (Also didn't know anything about this being a Lyme endemic area-had hardly heard of Lyme!) I never saw any ticks on me, but then never looked for any. Who knows, I could have been bitten on my neck, and who routinely checks the back of their neck? Interestingly enough, I do have a strange rash on the back of my neck which seems to come and go, but no doctor has ever confirmed that it is from the Lyme infection.

The pregnancy turned out to be a partial molar one, which was then diagnosed as trophoblastic disease. This required me to be on six months of methotrexate IM therapy until my HCG levels were normal. Prior to beginning the chemotherapy, I developed swollen glands in my jaw. (These swollen glands occured eight weeks after my vacation) They disappeared after two days and I thought nothing of it. I read later that one of the early Lyme symptoms can be the onset of swollen glands. In retrospect, a shame that I didn't know that then, and wasn't treated at that point.

While on the chemotherapy I slowly developed strange symptoms which were not thought to be side effects from the chemo (according to the oncologist). It may have been reasonable to conclude that they were an emotional reaction to the trauma of being on chemotherapy, yet I didn't think this was the case. I felt as though I had an infection.

Once off the chemo, I thought that I would start feeling much better. Instead, I started developing more strange symptoms such as face pain, head pain, teeth pain, pressure sensations in my esophageal area, and finally two months later, arthritis in my knees, heart palpitations, dizziness and wooziness, to name just a few. I would see patients each day (am a psychotherapist by training) and they would start to swirl in front of me as though they were upside down! The problem with this disease is that many of these symptoms are difficult to describe, and I consider myself to be a very articulate person. Each day brought more troubling symptoms in addition to those I had. So, I made the round of internists, neurologists, ENTS, etc. Most of whom thought my problems were psychological/emotional, or they just didn't know. I finally asked for a Lyme titre, and it was negative. I put that idea on the back burner for a while, assuming the test was the final word.

I then had a complete medical work-up via a top medical facility and everything was negative, yet I was feeling very ill. Finally, thanks to the Internet, I obtained some information about Lyme symptoms which seemed very similar to mine. My good friend who is a physician here in Michigan then called a doctor in New York who was willing to see me, and recommended that I take a Lyme urine antigen test first. My friend ordered this test for me and the samples came back highly positive. I then went to see a top infectious disease specialist here in town. He ran every test one can think of including the Lyme titers. He ordered the Elisa IgM and Elisa IgG,as well as the Western Blot IgM and IgG. The IgMs came back positive (both Elisa and Western Blot). He said there is no doubt that I have Lyme, and started me immediately on the IV [ceftriaxone] for 42 days followed by doxycycline. No improvement noted, despite the fact that my Lyme titres (while still positive after subsequent testing) are less.

Wondering whether I actually had Lyme since not responding to treatment, I went to seek a second opinion. He concurred with the first doctor's diagnosis, saying that I definitely had the disease. He remarked that different antibiotics work for different patients, and we hadn't found the right one for me yet. So I am now on [penicillin G benzathine] injections and am hoping that I will finally respond to this treatment. In the meantime, I have been unable to work for the past eight months because I am too ill.

One thing I have learned from this is that many physicians treat patients as though they are either hypochondriacs (which I have never been before) or as having an anxiety based set of symptoms, when they don't know what else to call it. I am glad that I was persistent and insistent, to at least get some treatment. Incidentally, I did call the Massachusetts Dept. of Public health and spoke with an epidemiologist there who confirmed that I had visited a Lyme endemic area.


Editor's afterword: Some of the concepts concerning the clinical problems involved with Lyme disease are illuminated by this history: