Betsy W. from California and Alaska
How long do you believe you have had Lyme/tick-borne illness?
I think I was born with it. My mother suffered from many health issues as a kid. In her older age she has a lot of the same symptoms as me, but hasn't been tested for Lyme. She has been diagnosed with fibromyalgia. Her worst symptoms are muscle pain, muscle spasms, and fatigue. I was always tired, even as a little girl, and had issues with my leg muscles that made me feel like I had to kick them.
When I was 7, I got a bad cold/flu. I had a terrible headache and a fever. My mom says I was never the same afterward. I suffered from anxiety and depression and was put on psychiatric medication at the age of 10 for suicidal behavior. (I have now been on antidepressants for 17 years). I began sleeping every day after school in middle school. I was always the last one up at sleepovers. I was always so tired!!
For high school, I went to a boarding school in California (despite being from Alaska) to get away from an abusive home situation. My high school was very rigorous and every minute of my day was planned. I would use my free periods and lunch periods to sleep. I had depression and anxiety. I didn't have any energy to do extracurriculars or sports. In college, I scheduled my classes in the afternoons. By sophomore year I was only a part-time student. I slept constantly and didn't have many friends and no interests outside of school.
After college, I was completely disabled. I was unable to work more than four hours at a time and did several internships but no jobs. I was unable to cook nor grocery shop, so I would order grocery deliveries to my house and order my food for delivery. After several years living like this I was diagnosed with Lyme disease.
How long did it take you to get a diagnosis?
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes! I saw countless doctors, psychiatrists, neurologists, sleep specialists, integrative doctors, naturopaths, acupuncturists, endocrinologists, chronic fatigue specialists, and general practitioners. I'm sure there’s more, but I can't remember.
Were you diagnosed with anything else before Lyme? If so, what?
I was diagnosed with anxiety, depression, PTSD, adrenal fatigue, fibromyalgia, chronic fatigue syndrome, heavy metal toxicity, early onset narcolepsy, Hashimotos thyroiditis, sleep apnea and more. Each time I thought I was finding answers, there was another layer to uncover.
Anything else you would like to share about trying to find a diagnosis:
I actually diagnosed myself! I was told I had heavy metal toxicity and off-the-charts mercury toxicity and that I needed DMPS chelation. After 5 treatments, I was completely unable to care for myself. I couldn't take supplements or bathe and I could barely go to the bathroom. My mother was working full-time as a surgeon in Alaska and I was in California on my own. I started to look into inpatient facilities for chronic fatigue syndrome because I didn't know where else to turn. I ended up finding a certain medical center. I called them and after describing my symptoms, the woman said, "You know, it sure sounds like you have Lyme Disease." I was like, "No, I was tested for Lyme 10 years ago and it was negative." That’s when she told me that the testing for it wasn't accurate. I was floored. No doctor had ever mentioned that to me! I started researching and asked my doctor to order a Western Blot and ELISA test. I was positive on the Western Blot (but not by CDC standards). I found my first LLMD and started my journey with Lyme.
How long have you been treating Lyme for?
A year and a half.
Do you have any coinfections? If so, which ones?
I am going to be taking the DNA connections test in two weeks to see exactly. Based on symptoms my doctor diagnosed me with Bartonella and Babesia. I also tested positive for many viral infections including and an active Epstien-Barr infection.
What types of treatments have you tried?
I have tried Gut healing protocols, herbal protocols, treatment centers, acupuncture, medications, SIBO protocols, Heavy metal Chelation, low dose naltrexone, malerone, infrared saunas and detoxing methods, glutathione and other supplements.
List up to 5 of your biggest (past or current) symptoms:
- Fatigue and lack of motivation (even to stand up and get a glass of water was almost impossible)
- Low blood pressure and POTS symptoms
- Muscle pain in my head, jaw, low back and joint pain
- Neurological issues such as OCD, depression, anxiety and suicidal ideation
- Sweats - both day and night
What is the biggest way that Lyme has affected your life?
Lyme has changed every aspect of my life. Because I have been sick my entire life, I cannot even fathom how my life would be different without it. Maybe relationships? Career? My entire personality?
What do you wish people knew about Lyme Disease?
It;s not just transmitted by ticks. You can look fine, and even act normal at times, and still be really sick. It can be fatal. You have good days and bad days. If you do do something that takes up energy, you have to PAY for it maybe for weeks or even months. There is no cure. It’s lonely and isolating. It’s not just all in my head. Emotions feel permanent, not temporary. It’s ridiculously expensive and insurance doesn't cover any natural treatments or supplements.
Any advice for someone newly diagnosed with Lyme?
DETOX. Be your own personal advocate – doctors, even LLMDs, do not always know best. Lyme is rarely just Lyme - it affects every aspect of your body, from hormones to gut issues. Check all your drugs and supplements for interactions and side effects, especially if you have multiple doctors prescribing.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I really like going for walks now that I am feeling better! I also love the Netflix show Pretty Little Liars!
To find out more about Betsy’s journey:
Her Instagram is @Lymelights and a blog is soon to come!