Lyme Disease, huh?
That’s one of the illnesses I have. You may be reading this because you have Lyme Disease or you think you might have Lyme Disease.
Lyme Disease can be difficult to diagnose but will affect every area of your life.
It’s utterly miserable. If you have Lyme or think you have it, then I am deeply sorry. I wish you weren’t going through this. I wish none of us had to deal with this pain. (I’d also love to join you in finding hope in this rough season!)
My Lyme Disease story is not uncommon.
I cannot recall a specific tick bite that spurred on all of these problems, however, growing up, my family went camping regularly and I was bitten by ticks. I never knew much about Lyme Disease. Now that I’m older and have learned more, I found out that a place my family would regularly camp produces a lot of Lyme Disease cases.
When putting the pieces together with my Lyme Literate Medical Doctor (LLMD), we have come to the conclusion that I likely contracted Lyme Disease and co-infections as a teenager.
In high school, I struggled with fatigue, mood swings, rage, weight fluctuations, depression, suicidal thoughts, and problems with concentration. I began to act out in ways like never before. My grades began to slip a little and overall I had a harder time focusing in school. My driven personality ended up carrying me through to graduation and college, but it was not without a lot of anger and heartache. I didn’t know what was happening to me. I often felt like I couldn’t control myself. (For a lot of high school I was also on Clindamycin for acne, which I now know also treats Lyme!)
In college, I did everything in my power to have a good schedule and routine so that I’d be more stable than I was in high school. Even with my best intentions, I ended up being faced with crippling fatigue and Mono-like symptoms in my first semester (I now know that I had a past infection of Ebstein-Barr Virus so this was likely Mono). Later on in college, I struggled with insomnia, depression, anxiety, suicidal thoughts, poor concentration, mood swings, and an overall uneasy feeling. I would call my mom crying in the middle of the night when I couldn’t sleep and didn’t think I could handle finishing the semester.
The hardest thing was that I wasn’t lazy, but always felt like I couldn’t handle doing classes, work, Bible study activities, etc. like the rest of my friends. The summer before my final year of college, I went back on antibiotics for acne (antibiotics I now know also treat Lyme!) and a few months later ended up with a horrible C-Diff infection and reactive arthritis. Because of C-Diff, I had to go off of those antibiotics and treat that infection with something different. The pain in my body was still bad, and just a short time later I was back in a season of fatigue, depression, anxiety, suicidal thoughts, rage, mood swings, and poor concentration.
After graduating from college, I went off to China to teach English. The change of scenery and slower paced lifestyle was helpful for me. I did have pain, numbness, and tingling in my hands while I was there, but honestly brushed it off. Fatigue was another big issue and I felt achy a lot, but I wanted to enjoy the experience so I coped the best I could.
I came home from China for several months with intentions of working and going a different route with my career, but found myself in deep depression once again. I was still tired all the time and dealt with many of the same issues I had experienced while in college.
Because China had been a place of thriving and a place I felt God wanted me to be, I decided to return to my old teaching job abroad. Looking back, I don’t think I realized how sick I was already getting while in China. I know that I was tired a lot, but my students and friends have reminded me of how I was sick a lot while I was there.
Back Home to Work
Interestingly enough, the very day I moved back from China I was faced with TMJ issues for the first time. Over the next year and a half, I tried to work hard, but still found myself regularly overwhelmed and exhausted. I had this feeling that something was “off.” Periods of depression would come and go, but I always thought I was taking care of it with healthier eating, a better sleep schedule, and other productivity systems.
In February 2016, I went on a week-long trip to visit a friend who is a missionary in Cambodia. Cambodia was the tipping point for my health’s decline. While I was there, I got really sick. I either contracted a parasite, an amoeba, or even got a reinfection of Lyme or a co-infection (according to my LLMD, Babesia is common there). We had to miss a trip to an island and instead stay in a guest house in Sihanoukville while I battled with pain, headaches, fevers, chills, and digestive issues.
When I returned from Cambodia, I expected to recover after a couple weeks and be back to my “normal self.” Little did I know that I would never recover. I immediately went to my general practitioner as soon as I was back in the States for a checkup. She said that all was okay and I should start feeling better soon.
After a few more weeks of not feeling well, I went in for another appointment and this time requested blood work to be done. I had a list of things that I thought may be wrong. From Vitamin D deficiency, to iron deficiency, to Hashimoto’s Thyroiditis. Once the blood work was done, it turned out that everything I thought was wrong was actually wrong. So, we began treating with supplements for the deficiencies and waited on the thyroid.
In the meantime, my health began to get worse. I started making a list of symptoms and then did more research to see if I could figure out some possible causes for being so sick.
- Insomnia – either unable to fall asleep or waking up around 2 or 3 a.m.
- Brain fog
- Memory loss
- Tingling hands and feet – pain in hands
- Panic attacks
- Suicidal thoughts
- Mood swings
- Lack of concentration
- Inability to multi-task
- Crying very easily
- Light sensitivity
- Stuttering/problems with talking
- Extremely painful periods
- Muscle weakness
- Muscle pain
- Joint pain
- Swollen joints
- Swollen lymph nodes
- Leg weakness to the point of not being able to stand or walk at times
- Tingling/numbness and then losing mobility of body
- Handwriting getting worse
- Vision issues – floaters, cloudiness, seeing flashing lights/stars when closing eyes
- Night sweats
- Pain in heart upon waking
- Worse effects from alcohol and caffeine
- Being too cold or too hot (usually too cold!)
- Weight fluctuations
- Hair loss
- Hearing buzzing sounds
While I had experienced stuttering here and there, after catching myself being tongue tied and unable to speak clearly in meetings, I started thinking more about what caused stuttering. It contributed to enough embarrassment that I felt it was a significant issue!
So, one day, as I sat in a work meeting after once again stuttering, I took out my phone and Googled, “What causes stuttering?”
The search result came up with Lyme Disease, but I brushed it off thinking I didn’t have that because I didn’t have the bulls eye rash typically associated with Lyme.
Then, about a week later, I was on Facebook and saw a post in my feed that was written by a friend of a friend. She had written about her journey with Lyme Disease. Upon reading her post, I realized that there was a good chance all of my symptoms actually pointed to Lyme Disease and co-infections.
So, I got serious with my general practitioner and asked her to run a Lyme test.
By that time I had researched Lyme Disease enough to know that the tests can be extremely inaccurate, so even if I got a negative result, I knew that I couldn’t rule it out. I knew that the best course of action would be to eventually find a Lyme Literate Medical Doctor.
When my test came back negative, I cried right there in my doctor’s office as she told me. I told her that I didn’t know what else it could be and just wanted to feel better. By that point, the illness had completely taken over my life.
She then went on to tell me that my symptoms were likely psychosomatic.
That sure made me feel good. Not.
She did prescribe me with Doxycycline upon my asking and told me she would prescribe it “if I thought it would make me feel better” as if it would just have a placebo effect.
I was also referred on to several other specialists for some of the various symptoms.
During the time period between that and actually getting help, my health continued to decline and I ended up in the emergency room.
Seeing a Lyme Literate Medical Doctor
I made an appointment with a Lyme Literate Medical Doctor (LLMD) for June 2016. It was at this doctor that I received a full evaluation. She reviewed my medical history, asked a lot of questions, and took blood to send off to labs.
From the testing and evaluation, I found out that I have or had (if it’s a past infection):
- Lyme Disease
- Ebstein-Barr Virus
- Chlamydia Pneumoniae – it’s not what you think! It’s a type of bacteria that can infect the lungs.
- Mycoplasma Pneumoniae
- Food Intolerances to gluten, dairy, soy, eggs, and peanuts
- MTHFR Genetic Mutation
- Pyroluria chemical imbalance
- Hashimoto’s Thyroiditis (which, I already knew from past testing)
Journey to Healing
Once I knew all that was wrong, I was able to start treating. Lyme and co-infections were the biggest challenges, but knowing the other issues has been helpful for being able to use the right supplements that will work well with my body. I have been treating with a combination of antibiotics and herbals. The two approaches seem to work well together.
I have seen some improvement, especially in the areas of depression and anxiety, but I still have a long way to go.
It was a long journey to find out what was wrong and get a diagnosis, so it will be a long journey to healing as well.
It would be easy for me to look at my illnesses, with the chronic pain and other symptoms I am faced with each day, and be discouraged. However, in the darkest season of my life as my health completely declined this year, I was able to more tightly cling to the only place that offers true, abundant hope. God has never left my side through any of this.
My Lyme Disease journey is nowhere near over, but I look forward to continually pressing into the Lord as I walk through this season of life. It’s been a rough journey, but I have grown in significant ways as a result of this hardship.
I am thankful.
The information on this website has not been evaluated by the FDA and is not intended to diagnose, treat, prevent, or cure any disease. I am not a doctor and am not offering medical advice. This website is available for informational purposes only and should not be used for treatment. Medical treatment should always be supervised by a doctor.
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- The story of my battle with chronic Lyme Disease
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Emily Lofgren’s heart beats for authenticity. She craves true connection where we can be real about our struggles and find hope together. Emily became a Christian in college and since then has had a passion for writing in a way that helps others encounter life. Grab your free copy of her eBook Finding Hope Through the Fog.