I wasn’t surprised when I eventually found out I had contracted Lyme Disease. I love to hike in the woods and I love dogs. And, to make matters worse, I’m one of those “bad” dog owners who has always let the 4-legged ones share my bed. I have pulled hundreds of ticks off various parts of my body over the years. So, like I said, I wasn’t surprised when I found out I had Lyme Disease. What did surprise me was how little most doctors know about this disease and how little they seem to care.
I wrote this letter to my doctor last week. I think it tells most of my story:
Dear Dr. K:
It’s taken me a long time to write this email to you and I’m sorry it’s long overdue.
I started having weird health problems about 8 years ago. I’ve always been an athlete (heptathalon, basketball, volleyball, and golf) but found I was able to do less and less over time. If I did 10 push-ups, I couldn’t bend my elbows without excruciating pain the next week. I was exhausted all the time, had waves of horrible anxiety and my brain was foggy. During one visit with one of your physician assistants I tried to ask her about my symptoms. She said she didn’t have time to hear my “complaints” and that my appointment was an “emergency” appointment for a sinus infection.
About 2 years ago, I developed a high fever that lasted for 3 days. After my fever broke, I spent the next 3 days sleeping 23 hours per day, getting up long enough to take a shower and eat a little something. I was just starting to feel alive again until I woke up in debilitating, excruciating pain in every joint in my body around midnight. It was then I realized I must have Lyme Disease. I forced myself to go back to sleep knowing I would have to go to the doctor when I got up. That morning, it took me 20 minutes just to pry my hands open, an hour to get to the bathroom and another hour to make it down my stairs. Even though I live only 5 blocks from your office, I had to take a cab because I couldn’t walk.
I went home thinking I would take the medicine and feel better in 3 weeks. That didn’t happen. The pain and exhaustion were unbelievable. Every morning, my husband carried me into the bathroom. It was horrible.
I received the results of my blood test from you that said “You tested negative for Lyme Disease. Your B 12 levels are a bit low, which may be causing joint aches. If your joints still hurt in 2 months, contact a rheumatologist.”
I was disappointed by your reply.
With one day left of the antibiotics, I was still in horrific pain and felt completely drained. I didn’t understand how I could take these strong meds and still be suffering so much. To make matters worse, I was not sleeping well because every time I moved, I screamed out in pain (mostly in my head but sometimes out loud). After reading a little bit about Lyme Disease, I convinced the doctor who treated me to prescribe another 3 weeks of Doxycycline thinking that would do the trick. I was improving, but very, very slowly.
To make a long story short, I finally went to a Lyme Literate Medical Doctror (LLMD) who sent my blood work to two labs that are known as the best for detecting Lyme Disease (the ones I had requested you to send my blood). Both labs showed that I tested positive not only for Lyme Disease, but I was the lucky recipient of 3 other diseases: Bartonella, Anaplasmosis and Ehrlichia. I began treatment for these diseases with a cocktail of antibiotics. The first few weeks were hell, but about 3 months into it I started to feel inklings of what I used to feel like when I was healthy. Plus, I stopped waking up every 20 minutes in pain at night.
It wasn’t until my doctor decided to treat me for Babesia (my 5th tick-bourne disease) that I really started to feel good again. Although I had not tested positive for Babesia, I had a lot of the symptoms associated with it.
During those 2 years, I endured a tremendous amount of pain. But the pain wasn’t the worst part. My energy and will to live diminished to the point of having constant thoughts of suicide (Lyme attacks the brain and causes a mild inflammation which can cause/mimic severe depression). An acupuncturist said to me, “I don’t want to scare you, but your Chi is dead”. It didn’t surprise me because that’s exactly how I felt–dead inside. My mom watched her outgoing daughter who loved to socialize become an introvert who couldn’t muster the energy to go out to dinner with friends. My husband watched the strong, powerful woman he fell in love with turn into a weak, miserable human being.
I tell you all of this not because I’m angry, but I am hoping that you would want to know. I am 90% better. I am getting really strong again. I am enjoying my life and feeling great. And while I’m not completely cured, I am thrilled to know that I can feel good again–mentally and physically.
I look forward to hearing your thoughts.
It is my hopes that my former doctor not only reads my letter and takes the time to respond, but decides to educate herself about this horrible disease. There are a lot of people getting sicker and sicker from it. Isn’t it time they get the help they need?
And you should know that only a small percentage of people get the classic “bulls-eye”rash. Listen to your symptoms and take charge of your health.
If you or anyone you know has suffered from Lyme Disease or any of the other tick-bourne illnesses, please share your story with us.
P.S. I would like to thank Amy Million, MD who graciously offered to help me figure out what was wrong prior to my diagnoses. And thank you to Heidi Wittels, MD who has spent hours working with me through this journey.