May is Lyme Disease Awareness Month. Minnesota and Wisconsin are known hot beds for Lyme disease, otherwise known as the great imitator. It mimics other diseases, which is what can complicate getting proper treatment and the correct diagnoses. Add to that, the knowledge that current tests for Lyme are horribly inaccurate. They test for antibodies, not the bacteria itself. Not everyone produces enough antibodies for a positive result. That leads to an incredibly large number of people who go misdiagnosed and without needed treatment, resulting in devastating effects. It can cause permanent systemic damage to a person’s nervous system, heart, joints and more.
I’m one of those people. For years, I’ve had severe fatigue that would come and go, sinus issues, random pain and more. I saw multiple doctors who questioned my mental health more than anything. You would be upset, too, if not one doctor could explain what was wrong with you. I’d go months without a flare up, then they started to come closer and closer together. The best explanation I got was it was probably caused by my autoimmune issues, for which there was no treatment.
Last fall, everything came to a head. I started having numbness on the tip of my nose, my toes and fingers. It would come and go, traveling up into my limbs. My fatigue was so bad, I could hardly get up the stairs. The pain was keeping me awake at night — and I have high pain tolerance.
My doctor screened me for Lyme disease and that first test was positive. The second test they use is the current standard in the medical community for diagnosing Lyme disease, called the western blot test. There are five bands that need to come back positive. Mine came back with three of the five. Not enough to meet the arbitrary standard. Watch the documentary “Under Our Skin” on Amazon Prime and you will quickly learn why that test does more harm than good, yet it is our current standard for diagnosing Lyme.
Once again, my doctors could not explain what was going on. I felt like they weren’t listening. What I came to learn was that unless a physician is what they call a “Lyme-literate medical doctor”, in most cases a physician can’t treat you for Lyme without a positive western blot test result, regardless of your symptoms. A 2007 study by Raphael Stricker found 56 percent of people with Lyme disease test negative using the two-tiered testing system that is recommended by the Centers for Disease Control and Prevention. A Lyme-literate doctor or integrative medicine doctor will do a clinical diagnosis, where the test has less influence. In other words, they will treat you based on your symptoms. If they treat you for Lyme and you get better, you have Lyme no matter what the western blot test says. Of course, this means none of it is covered by insurance. Like others before me, I have to pay out of pocket for effective Lyme treatment. Determining whether someone has chronic Lyme disease is one of the biggest controversies surrounding the disease.
Within several weeks, my neurological symptoms became severe. I couldn’t remember conversations that happened seconds ago. It was hard for me to remember how to do things I’d done a million times or recall the names of items or people. I thought cars were coming at me on the road and shadows outside my house were giant raccoons charging at me. My brain was not communicating with my nervous system. I couldn’t drive for a period of time. My eyes couldn’t handle the sun or bright lights. High-pitched noises caused me to have something similar to a seizure. My sense of taste disappeared. I woke up one morning with Bell's palsy, and the next day I couldn’t walk.
After a visit to my clinic, they sent me straight to the ER, fearing I was having a stroke. No one would entertain the idea that it was Lyme disease because the rules say you had to have a positive western blot test to be treated. MRIs ruled out a stroke, MS and other ailments. Not one doctor or neurologist could find anything to explain what was happening and they refused to even talk about Lyme disease with a negative western blot test. I was discharged from the hospital with a cane and told to follow up with a neurologist.
Thankfully I had two women in my life who knew more than I, and frankly more than my primary physician about Lyme disease. They directed me to doctors and resources that specialize in Lyme treatment. Without these two women sharing their stories and pushing me to see a Lyme specialist, I might be in a wheelchair today. Those two women are Jennifer Cermak and Joeleen Kielkucki. They encouraged me, listened to me and got me through one of the most difficult periods of my life. Other than my immediate family, not many people knew how bad off I was.
An integrative medical doctor who treats Lyme disease spent two and a half hours with me at my first appointment. We started my treatment for Lyme disease and completely changed my diet. Within three weeks, my neurological symptoms improved drastically. Keep in mind all of my treatment was herbal and dietary. Later, I started on one prescription medicine to help with my recovery.
The treatment that worked — the treatment that I and countless others need — is not covered by insurance. Without a positive western blot test, I could not be treated by a physician covered by insurance. Their hands were literally tied, while I was deteriorating in front of them.
Five months after finding the right doctor, I’m doing leaps and bounds better. She suspects that I contracted Lyme and co-infections not long after I moved to Minnesota 25 years ago. I don’t recall a tick bite and I never had the bullseye rash. This means I have years of treatment ahead of me, because I’ve had it for so long. The risk of having a flare up, as I did last fall, will always be there. I’ve probably had Lyme for most of my adult life. The best I can shoot for is getting to where we can coexist and minimize the impact it has on my health. It’s like getting it into remission.
I protect my sleep and diet like my life depends on it, and it does. My diet isn’t so hard to follow. Friends often ask me how I live without sugar. My response is always, “I love sugar, but I love walking more.”
Had I not had two women share their stories with me, push me to seek another opinion, to see a doctor who specializes in Lyme, to educate myself on this disease, my life would be dramatically different today. Dr. Neil Spector, a top Duke University oncologist, calls Lyme disease the “infectious disease equivalent of cancer.” Lyme disease brought me to my knees, but it also made me realize that if I can fight this and win most days, I can do just about anything. It started as a curse, but I’m going to turn it into my superpower. I could use your help to spread the word. Learn more yourself. Start with www.twincitieslyme.org. Your knowledge could mean life or death for someone you care about.
You can learn more about Natalie Webster and her adventures in the Lake Minnetonka area at WebsterEffect.com.