I do not want you to feel singled out by this letter. I am hoping you learn something from it and one less person will have to go through what I did to receive a diagnosis. You were only one of seven doctors who told me I did not have Lyme disease when I told you I thought I did. I do not completely fault you on this response because it is clear that the medical community is not getting the proper training on this disease and the inaccuracies of the diagnostic tests.
However, some doctors treated me so poorly, it should be inexcusable. I was told “it was all in my head or I was depressed,” I “just wanted pain killers,” “just because Avril Lavigne gets Lyme everyone thinks they have it,” “there is nothing medically wrong with you” and the list goes on. This was while I was slowly wasting away and deteriorating from this disease as I was bounced from specialist to specialist. I went from riding motorbikes through the Kenyan jungle while working for an NGO, to being unable to get out of bed. I went from getting accepted to Yale for graduate school to struggling to speak and being unable to read and write.
I started having seizures, the joint pain made it excruciating to walk, I struggled to catch my breath, I would black out and collapse when I stood up. My memory faded. I couldn’t drive anymore because I would get disoriented and lost. I couldn’t remember what happened a few days prior or even what I wore the previous day. Several times I felt like I was dying while simultaneously being told by doctors there was nothing wrong with me. I hope that by sharing my story I can prevent someone else from having to go so long without being diagnosed and bring awareness to this disease.
Here are a few things I would like to clear up about this disease that you may not know, according to the International Lyme and Associated Diseases Society (ILADS).
Fewer than 50 percent of patients with Lyme disease recall a tick bite.
Fewer than 50 percent of patients with Lyme disease recall any rash.
The common Elisa test you receive at your doctor’s office misses 35 percent of culture-proven Lyme disease. Some studies indicate up to 50 percent of the patients tested for Lyme disease receive false negative results. Lyme disease can cause an autoimmune response which means patients are not creating antibodies for the infection which is what the test identifies.
Up to 50 percent of ticks in Lyme-endemic areas are infected.
The CDC reports that Lyme disease infects 300,000 people a year, 10 times more Americans than previously reported.
There are more cases of Lyme disease than breast cancer and HIV combined.
The average patient sees five doctors over nearly two years before being diagnosed.
Common symptoms include: fatigue, neck stiffness or pain, jaw discomfort, muscle pain, joint aches like arthritis typically in the knees, swollen glands, memory loss, cognitive confusion, vision problems, digestive issues, headaches and fainting. The earlier a patient gets diagnosis, the easier it is to treat.
I am now a year into treatment and have made major improvements. However, because I was diagnosed so late, the Lyme bacteria were able to infiltrate so many parts of my body including my brain and heart. This makes it very difficult to completely eradicate the disease.
Here is my request. If you or a patient thinks Lyme disease is a possibility and the test comes back negative, please tell them, “These diagnostic tests are known to be inaccurate and if your symptoms persist I would recommend seeking out a Lyme disease specialist. You can find a list of specialists who have gone through specific training to diagnosis and treat Lyme at ILADS.org.”
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.