In April 2018, I followed a deer trail that led me into a thick copse of evergreens while hiking near our home just north of Bigfork. I had a passing thought while bushwhacking out of the thicket that ticks might be there, and I tucked my hair into my running cap. I did not give ticks another thought. A few days later I noticed a bump just inside my hairline which eventually went away.
In early May, I developed incredible crushing fatigue unlike anything I’d known. Imagine walking in warm, chest high mud for hours to get an idea of what that might have been like. I also began to have severe pain the entire length of my spine and deep pain in my buttock. Both of my forearms were very painful, and the tips of my fingers felt clubbed and numb. I had always been athletic and healthy and had never experienced anything like this. On May 18, my primary care doctor suggested testing my thyroid and suggested that I try wrist braces for carpal tunnel syndrome. My blood work returned normal. There was no mention of any possibility of Lyme disease.
I felt terrible. I had fatigue, pain, numbness, bad headaches, and the sensation of tiny insects crawling all over my body under my clothes and taking nibbles at random times and places, just to name a few of my symptoms. I attributed the insect issue to no-see-ums and used a lot of insect repellant for the days I worked outside.
A fourth generation local man told me the story of his family’s longstanding tradition of performing a thorough tick check when they came in from any outdoor activity because the ticks in Montana were so bad. A few days later, a neighbor told me the horror story of her daughter’s long term battle with Lyme disease, and the incredible destruction it had done to her daughter’s various body systems. It had attacked her bones, making them soft and unstable. Her daughter also had symptoms that sounded just like mine.
I began to realize that it was highly likely that I had gotten Lyme disease on my hike in late April. My neighbor told me about a naturopath in Whitefish who had been treating her daughter for Lyme disease issues. I called her office in early July and was grateful that she chose to work me in to her over-full schedule – she had no openings for new patient appointments until September 27. My research on Lyme disease had shown me clearly that the longer the disease went untreated, the more difficult successful treatment became.
I was told by my primary care doctor that it was unlikely that I had Lyme disease as Lyme disease is not in northwest Montana. The following map, published in the Boston Globe in May, 2018 seems to say something different.
The naturopath thoroughly examined me and took detailed notes of my many unusual symptoms without being surprised by any of them. When she drew blood to test for Lyme disease, my blood vessels kept collapsing and exploding, a completely new thing for me. She told me that she has seen thousands of people with similar symptom presentations with Lyme disease, and we decided to move forward with treatment for Lyme.
I questioned the naturopath about the likelihood of getting infected with Lyme disease in Bigfork. She directed me to a nationwide veterinarian reporting website for Lyme disease with a map of incidence of Lyme as reported by veterinarians. The particular map I found of the continental U.S. was color coded. Montana and many other states were shown to be moderately high risk for Lyme disease. Ihttps://capcvet.org/maps/#2018/all/lyme-disease/dog/united-states/
Another helpful map, specifically of prevalence of Lyme here in Montana is here: http://www.petsandparasites.org/parasite-prevalence-maps#2018/all/lyme-disease/dog/united-states/montana/
If other red-blooded animals are experiencing high levels of Lyme, then how could it be true that human beings would be exempt from the infection?
Treatment with two antibiotics and an antifungal medicine began after my first appointment with the naturopath. I was warned that it was likely I would experience a reaction to the initial die-off of the Lyme bacteria. Four days after starting treatment, I developed an awful headache and numbness which spread from my hands and feet to encircle my mouth, my front teeth, and the tip of my tongue. The headache continued to get worse. I became confused. On one errand, I needed to write my phone number of many years on a form but had absolutely no recall of my phone number… Scary!
Between the numbness, confusion, terrible headache, and the vision of my blood vessels giving way during my blood draw, I was worried I might be having a stroke. I called the naturopath’s office and was reassured by the nurse that this response was common. I made it home and my symptoms eventually subsided.
The (not so) funny thing about Lyme disease is that the symptoms are always changing and the disease moves to attack different body systems at different times. The bone-numbing fatigue comes and goes. The headaches are sometimes pretty fierce, but thankfully, while they are frequent, they aren’t all of the time. The musculoskeletal pain in my lower arms and in my back frequently would wake me up from a sound sleep. Periodically, I would not be able to walk more than 50 feet without shortness of breath. When I miscalculated my energy on a walk, I frequently found myself struggling for the strength to return home. Lyme disease seemed to be attacking my nervous system, as well as my muscles and my bones. The numbness in my hands and feet and the sensation of having “clubbed” fingertips was one thing. The feeling of insects all over me made me feel like I was going crazy. While some of the symptoms have stopped, others have replaced them.
The prevalence of Lyme disease is on the rise here. I have several local friends and neighbors who have quietly been struggling with this disease for many years, even decades. And I have friends and neighbors who have been recently infected. I was shocked when I learned that Lyme disease can be terminal. The longer I am on this journey, the more people I’ve met here who also suffer from Lyme.
Treatment can be long and tricky, as these bacteria are known to shift from the spirochete form, to biofilm type, to cysts in which the DNA of the bacteria is sequestered in a nearly dormant form. This bacterium has mastered immune evasion. In addition, tick bites are filthy and often victims are infected with several additional pathogens. I was diagnosed with Babesia, a malarial type organism in mid-August, and in mid-December, with Bartonella. This is expected to make my treatment time much longer, since now I am being treated for more than one infection.
Spring is here, and ticks emerge in early spring. It is so important that people take precautions to try to prevent being bitten by a tick. The “nymph” stage of the tick is thought to be the most virulent in passing on diseases. There are ways to protect yourself such as the use of a product by Sawyer for the treatment of outerwear (and hats!) to make your garments insect repellant. The product retains insect repellency for up to 5 washes. Wear tall white socks with your pants tucked into them, and always, always do a strip check for ticks when coming in from being outside. Use Deet or picardin on any exposed areas and at the borders of collars and sleeves.
I hope that this story helps people in our communities in being prepared to take precautions when going outside. I also hope it brings awareness of the prevalence of Lyme disease and other tick borne illnesses in people, and that it encourages those who are infected to seek treatment if they develop symptoms of Lyme disease.
P.S.
Unfortunately, I got bitten by another tick on April 22nd (2019). Lyme symptoms began 8 days later which really, really sent me reeling for a couple of days.
I had an insight as I though about my many years as a student – and about the many, many tests I took during my time in school. I had a couple of good teachers – ones who genuinely cared about the students, and who really wanted their students to fully learn the material being taught. These good teachers would design their exams with the purpose of helping the student (and the teacher) to understand and know what areas of the material the student knew well, and those areas they did not yet fully grasp. The good teacher gave his students opportunities to help them fully learn the material in the areas of weakness through other means.
Last year was brutally hard. My insight about good teachers gave me an insight about The Good Teacher and His tests. My insight helped shift me away from the fear and horror I felt at this setback. It helped me see this particular “test” in the light of growing me up in trusting the LORD and knowing Him as my Sovereign LORD. Trusting God is a mighty challenging thing for me sometimes…
I struggle so much – in trusting Him, and in surrendering everything to Him as my Sovereign. I (in my delusion!) think I can control my circumstances – that I can, by being smart and prepared, protect myself from the bad things in this world that can harm me. My “delusion” says that in my own strength, and by my own devices, I can control (or even influence!) the outcomes of my life. I am coming to see that I cannot… only God is Sovereign AND He IS in control. I also do know that He loves me infinitely, and that His tests are not intended to destroy me or to condemn me, but to prepare me and draw me ever closer to Himself.
An amazing blessing is that I decided a couple of months ago to look for a new primary care doctor. When I went to set the appointment, the first available was 6-7 weeks out, and that appointment just happened to be 11 days after my tick bite. I have learned a bit in my journey with Lyme – if you begin a 6 week course of doxycycline within the first 14 days from the bite, it has been shown that (most of the time) the doxy will knock it out. I saw the doctor and began doxycycline right away. I am hopeful that this treatment will be successful.
God IS good, ALL the time. So grateful that He has sustained me so far, and for His goodness. He has shown me that He will sustain me – now and always.