I had a mysterious illness that included two hospital stays, countless diagnostic tests, and seemingly endless blood draws.
I was misdiagnosed by two PCPs. I was misdiagnosed by two infectious disease experts.
I almost had my gallbladder ripped out.
I cannot tell you how many times I heard, “something is wrong, but we just don’t know what” or “you’re an anomaly.” It was six months before I received a diagnosis. It took only six months, because I kept pushing for answers. Something was making me sick, and there had to be a cause.
In June 2020, between Zoom meetings, I was playing in the backyard with my son. I was outside for no more than 20 minutes. About 10 minutes after returning to work, I saw the tick on my leg. My husband promptly removed it. I messaged my doctor, but there was no bullseye rash. No fever. Therefore, no antibiotics prescribed.
Within weeks, my hair was falling out. I noticed my eyes, lips, and skin were constantly dry. In a few months I started to develop more severe symptoms. I was in pain in places I have never felt pain. I was experiencing shivers, night sweats, radiating discomforts and I never felt hydrated – no matter how much water I consumed. I was yellow with jaundice and losing weight. The fatigue was crushing. I was withering away at 38 years old.
I was tested for Lyme on three occasions.
The first test in August 2020 was negative. The second test in October 2020 showed some indication of infection, but not enough to treat. The third test in January 2021 met the criteria outline by the CDC. When I finally received the positive test results, I did not know how to feel about the news – angry/relieved? Both.
For some, it takes years. Years of being dismissed. Years of being untreated/mistreated.
Delayed treatment can lead to chronic illness. Chronic illness might include autoimmune diseases, tissue and cellular damage, organ failure, and neurological issues.
You know your body best. Do not back down if you suspect something is wrong with your health. If you are not feeling heard, change your doctors, get second opinions. Move forward and do not let anyone dismiss your concerns. Surround yourself with a support team of doctors, healers, family, friends, and colleagues. And for the love of all that is good, if you know you were bitten by a deer tick, consider asking for (insisting on) antibiotics right away.
My journey with Lyme is not over. I have months of antibiotics, healing herbs and vitamins, diet changes, and lifestyle adjustments to navigate. Lyme likes to persist. It likes to hide in the body. If I am fortunate, I can defeat the hidden bacteria, rebuild my immune system, and move forward from this without relapse. Here’s hoping.
Your health and wellness are primary. Advocate, advocate, advocate.
If you have Lyme or suspect you might, here are some resources that helped me:
International Lyme and Associated Disease Society
Kristin Reihman, MD
Red Hill Medical + Wellness
How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease By Richard Horowitz