Let me start off by saying—this is MY story. This does not apply to everyone, thankfully. And this article is not meant to call out the medical field in any way. I’m sure you, throughout this article, will feel my frustrations. And I will be frank, I get angry when I talk about this, but I am writing this for the purpose of bringing awareness to these diseases and possibly helping others find a route to getting a correct diagnosis.
My Road to Diagnosis
With all that being said, I titled this “My Fight With Lyme and Other Tick Diseases” because, for the past eight years, I have had to fight for myself when it came to getting a correct diagnosis. On top of the physical pain and slew of other symptoms, the added stress of being written off by the nearly 10, yes 10, different doctors I have seen made this whole journey emotionally painful, as well.
I have FINALLY found a specialist that LISTENS and does not dismiss my symptoms. We have done an array of bloodwork, and it revealed what my husband and I have thought was wrong all along: tick disease. I am positive for the following: Lyme, Relapsing Rocky Mountain Spotted Tick Fever (RMSTF), Anaplasmosis, Bartonella, Babesia, and Rickettsia.
I am an avid outdoorsman, and the majority of my time is spent outside, trekking through the woods and fields, around our home farm and traveling to different areas to hunt. One would think that that last sentence alone would be worth giving a second thought to tick-related illnesses, but unfortunately, that was not my case.
Below is a list of all of my symptoms:
Debilitating muscular, joint, neck, and nerve pain
Frequent skin rashes
Daily headaches that often turn into migraines that put me completely out of commission
Constant low-grade fever
Bruise very easily
Sores in my mouth during flares
Swelling in joints
Difficulty speaking and slurred speech
Short-term memory impairments
Eyes move rapidly/bounce uncontrollably (periodic)
Chest pains/pleurisy (periodic)
Irritability during flares
To say that this has dramatically changed my life is an understatement. I got in a real funk about three years ago due to my health, and it put me into a slight depression. I was having a hard time getting out of bed, and I was just really down. I was not being a functional human and let all the pain overcome me. My husband walked into our room one day and pleaded with me to find answers. We were both in tears about the shell of a person I had become. I was not me anymore. I never had any energy to do anything. I was in so much pain all the time that I never wanted to go anywhere.
Throughout all of this, I birthed four kids, so you can imagine the extra stress that it carried. After our conversation, it really woke me up and made me realize that I couldn’t just shut down. I’m living for more than just myself, and I have people that depend on me. My husband and my babies need me. So, from that point on, I decided to pursue answers. This alone caused major anxiety because of the number of doctors I had already seen and the number of times I have been told, “You’re just depressed,” “Here’s some hydrocodone (and other narcotics),” and even my misdiagnosis of fibromyalgia.
I was emotionally fried and terrified to jump into this mindset again for fear of being let down…again. When I began looking for answers again, I had two different doctors tell me, “We don’t have Lyme here,” which is absolutely asinine, but I will get into that later. I put my foot down with one doctor and demanded a tick panel. It revealed that I had previously had Rocky Mountain Spotted Tick Fever, but it wasn’t a current infection, to which her response was, “You’ve already had this infection, and it will not cause any more issues down the road.” Again, asinine. My Lyme bloodwork came back negative.
About three years later, I was in Sunday School at a church that we had just started attending, where I heard about a specialist in Kansas City. Unfortunately, a guy in our Sunday School class had just been diagnosed with Lyme and was having the same issues as me as far as getting someone to take him seriously. THANKFULLY, his dad is an avid hunter and outdoorsman, like me, and he had a gut feeling it was tick related. They found Jellison Integrative in Kansas City and encouraged me to visit with them. I called and made an appointment promptly and began the process of getting diagnosed. We used IGeneX lab in California, and the bloodwork confirmed what we had been thinking and more.
I have never been SO thankful for answers. I was actually nervous that it wasn’t going to reveal anything and that I would have to start all over. But it was so thorough, and the turnaround time was impressive. I was positive for nearly every tick disease there was (except Alpha-Gal, praise JESUS!!) The Lyme panel was abundantly positive. My doctor called me and went through the results line by line and stayed on the phone with me as I cried both tears of gratitude and disappointment. We set up a game plan to treat each disease and how to nourish my immune system homeopathically in the meantime. I am SO thankful for these people and how they have not budged to the system when it comes to tick diseases.
Why Am I So Frustrated?
I cannot tell you how many people I have spoken to that have told me similar stories. The two resounding statements I hear are, “Well, they said that we don’t have Lyme around here,” or “They said that once the Rocky Mountain Spotted Tick Fever has run its course (or hopefully, in most cases, been treated) I will never have any more issues with it.” RMSTF can relapse. Especially if it wasn’t treated correctly in the first place. Both statements make my skin crawl.
Again, this is my experience, but if I was a betting woman, I’d bet that none of the doctors that people are seeing are asking their patients what they do for hobbies. Do you hunt? Farm? Hike? Live in the country? Have you traveled recently and exposed yourself to the outdoors? HAVE YOU PULLED OFF A TICK? In my case, I was never asked any of these questions, and with it taking so long to get a diagnosis, it wouldn’t have really mattered on a standard tick panel because none of the infections were recent. It took eight years to diagnose because not one of the ten doctors I saw took the time to TRY to find answers. None of them stepped outside of the box. None did any research. The majority of them tried writing me a prescription and sent me on my way.
I know that not all people love the outdoors or are very educated in critters like the people that live this life, so I do try to cut some slack there. But at the end of the day, our “healthcare system” HAS to do better. I truly feel like most doctors believe what they are being told by the powers that be, and I guess that’s fine and all, but when it comes to patient care, let’s put on our thinking caps and TRY to help. Don’t paint yourself into a box, and never step outside those lines. Let’s do some thinking for ourselves.
Even if the statement “We don’t have Lyme around here” were true (it’s absolutely here, and that sentence is one of the most hair-brained and ignorant things I’ve ever heard), let’s just brainstorm some things:
I currently live in Nevada, Missouri, but three years ago, I moved here from South Arkansas and was raised in the Ozark Mountains of Arkansas. That area is a hotspot for ticks carrying Lyme and Rocky Mountain Spotted Tick Fever. Let’s say I go back home to visit and take my two Labradors to our family cabin. I go hunting, and they run around the yard. I get bit by a tick (usually where there’s one, there’s 10+) while out hunting, planting food plots, checking cameras, etc. That tick carries diseases that I become infected with. My dogs also pick up some ticks, and I don’t see them, and they end up falling off whenever we return to Nevada, Missouri. I am now in Missouri (where “we don’t have Lyme”) and have a new tick-born illness, AND my dogs just transported disease-carrying ticks to our area (hypothetical, but I can almost guarantee this has happened).
Have you ever looked into the travel patterns of wildlife? It might surprise you, but there have been deer and coyotes with tracking devices that have been recorded traveling distances up to 200 miles (whitetail deer) and 544 miles (coyote). How many ticks would you guess are picked up and dropped off during those treks?
Have you ever heard the term “as the crow flies” when it comes to measuring distances? Mileage is nothing when it comes to birds. Birds pick up bugs and all sorts of things with their beaks and fly them to a nest. How many times do you think a tick is in a beak that falls?
I could go on and on. People travel. People like to be outside. Pets pick up ticks. Wild animals pick them up and drop them during travel. It’s really not a hard concept to grasp, but for some reason, this issue is just not taken seriously within the medical community, and in case you haven’t noticed by now, it really “ticks” me off.
I didn’t write this article to bash the medical community. I wrote it to spread awareness. These diseases have really thrown a wrench in my life, but they do not define me. And now that I have found professionals that care and listen, I am on the road to recovery.
I can’t stress enough that this article is not meant to call the medical community out. It is, however, a plea for these diseases to get more attention and to be taken seriously. When I say that it has changed my life, I am not exaggerating, and I know I’m not the only one.
The second purpose that I have for this article is to encourage sufferers not to give up when it seems like you’ll never find a diagnosis or get better. In my nearly decade search for answers, I learned a lot. I learned how to stand up for and advocate for myself. It’s so easy to feel defeated and want to give up, but you can’t. Even when it seems like there is no one out there who will take your symptoms seriously, there is. There are professionals all over the country who have made it their life goal to bring awareness to these diseases and help those that are suffering from them.
DON’T. GIVE. UP. Don’t let anyone tell you that Lyme doesn’t exist where you are or that your other tick-related illnesses are a one-and-done thing. Go somewhere else and get the healthcare you deserve. In the meantime, I encourage everyone to read up on tick-related illnesses and be ever-mindful when you are outdoors.
Below are some good resources:
Cajun is part of Team Missouri. Follow her on Instagram at @cajun_questhuntco.