Dear Doctor, I do not want you to feel singled out by this letter. I am actually hoping you learn something from it and one less person will have to go through the torture I went through just to receive a diagnosis. You were only one of seven doctors who told me I did not have Lyme Disease, even when I said I thought I did. I don’t think you’re completely at fault because it is clear that the medical community is not receiving the proper training or current research on this disease, along side the inaccurate diagnostic tests. However, some of you treated me so poorly, there should be no excuse.
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”, and that “there was nothing medically wrong with you.” The list goes on. Meanwhile, 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 with others I can prevent someone else from having to go so long without being diagnosed and bring awareness to this disease that has been silenced for so long.
Here are a few things I would like to clear a few things up about this disease that you may not know.
- Fewer than 50% of patients with Lyme Disease recall a tick bite
- Fewer than 50% of patients with Lyme Disease recall any rash
- The ELISA screening test is unreliable.
- The common Elisa test you receive at your doctor’s office misses 35% of culture proven Lyme disease. Some studies indicate up to 50% 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% of ticks in Lyme-endemic areas are infected.
- CDC reports: 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 5 doctors over nearly 2 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 diagnosed 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 had already infiltrated 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 from ILADS. Click here for more info.
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One Response
Your story sounds just like mine. No doctor listens. Treated badly. And finally a picc line only for four weeks. Then doxycycline again for three months. This infectious disease doctor tells me there will be no need to retest after this treatment or to see him again.