My Time With Lyme
Today is my 48th birthday. It marks 26 years since I was first affected by Lyme disease. 12 years since my diagnosis and 6 years of good health. When I think about the years I lost to this disease, I am not angry. In fact, I am grateful. I am grateful for my current health and am grateful for the lessons in self-care, compassion and empathy that Lyme has taught me.
I first knew something was wrong when the headaches began. These were not your run-of -the-mill headaches but the powerful knock-you-off-your-feet headaches that drive you a dark quiet room for days at a time. The pounding, the stabbing pain and the nausea so intense that you wonder if this is the moment of your death- and in the back of your mind silently wish that it was. The times in between the headaches were filled with blurred thoughts, confusion and exhaustion.
This became my new normal. I carved out a safe life where I would not be challenged. I did not take jobs that asked a lot of me- not even to be awake before 10am. I convinced myself that was just me- that was a quirk of my personality. As the months turned into years, I learned to act. When you are sick for so long you have to start acting like a normal person for fear of losing friends and jobs and family. So, I acted the part of a well person. There were moments when I would feel so awful, so dizzy, so disoriented I was sure I would just die right there on the spot. I thought I must have a brain tumor that the MRIs haven’t caught. Or my lungs must be damaged and that is why I am always winded. My constant thirst and blurry vision convinced me I had kidney failure. Dr. Google basically told me I had every disease under the sun as I chased my symptoms through symptom checker.
When I saw doctors about these symptoms, they would run tests and tell me that there was nothing wrong with me. One neurologist told me that I was just seeking attention. It was that same doctor who, years later, after my diagnosis, questioned whether I should seek treatment. “You are married with children” he told me “Has your husband ever known you well? You might want to consider that before you pursue treatment” Like my husband likes me sick so I should stay sick for his benefit. The total lack of acknowledgement and understanding of Lyme disease still shocks me to this day.
I was finally diagnosed 9 months after the birth of my first son- 14 years after my first symptoms appeared. I was lying in my bed when I felt this fiery feeling creeping up my body. When it reached my neck, it felt like my body was paralyzed, and temporarily, it was. My husband got me to the doctor who ran a Lyme test. Luckily, I was CDC positive. The doctor told me that I had both new (IgM) antibodies and old (IgG) antibodies. “From the looks of it” she told me “you have had this for a very long time.” She put me on a 3 week course of antibiotics which, within days, cleared my head and put a spring in my step. My joy was short-lived. By the end of the second week on doxycycline all of my symptoms came raging back. I called her to let her know. “Don’t worry” she said, “it can take up to 6 months for your symptoms to clear up”. So, I waited. 6 months came and went with no improvement. 9 months, a year. Finally I contacted an LLMD who put me on high doses of multiple antibiotics. I had more tests done that showed I was positive for co-infections Bartonella and Babesia as well as Borrelia. Then came Epstein Barr and Candida. After nearly 2 years on this antibiotic merry-go-round I cried uncle. “No more antibiotics” I told him “I can’t take it anymore”. I had become allergic to everything and my gut was a mess. I needed to heal.
My doctor put me in touch with a woman who was teaching a group of Lyme patients how to use a Doug Coil Rife. I went to meet with her having no idea what I would find. I am an eternal sceptic, so her telling me this funny looking machine was going to help me with my Lyme disease seemed far-fetched. She put me on it and for the next hour my vision was crystal clear. That was it for me. I bought a Doug Coil Rife, studied with her and other rife-pioneers until I became proficient. I added my nutrition knowledge, detoxification, PEMF and infrared sauna. I continued doing nutritional IVs with my LLMD as well as ozone and chelation. After 6 months I could feel a big difference. After a year I was better. After 18 months I could safely put Lyme behind me.
My path to wellness involved a total body and mind makeover. I changed my diet to a nutrient dense one filled with a variety of vegetables, low sugar fruits and free of sugar, dairy and gluten. I started mediating. I disengaged from the toxic people in my life and found an inner acceptance for those things that I could not change. I stopped fighting the world. I stopped seeking affirmation of my disease. I forgave everyone who told me I was not sick. I forgave the doctors who dismissed me. I forgave my loved ones who simply did not understand my illness. I stopped hoping that people would “get it”. I stopped fighting the world to get them to believe me and instead focused internally on making my body as strong as it could possibly be. With the help and love of my husband, my mother, and my LLMD, I forged ahead. It took me nearly 2 years, but I got well. Gone are the days of not being able to think. I can access parts of my brain that I was not able to for 20+ years. I am able to read and learn again and, and a few years ago went back to school to pursue a Masters in Clinical Nutrition. Most importantly, I am able to feel joy again.
I still have work to do. I expect that I will have to do this work for the rest of my life. My Lyme was a like a canary in a coal mine showing me my immune system’s vulnerability. Anyone who has had a chronic illness cannot return to their pizza-eating tequila-drinking ways and expect to feel well. I still need to perform regular maintenance. I need to keep to my nutrient-dense diet free of inflammatory foods. I need to practice self-care and am committed to those rituals. These are the things that allow me to live a normal life. I need to be especially careful in times of extreme stress. My father’s stroke a few years ago and a break-up with a business partner nearly threw me right back down the hole. I used my tools and was able to pull myself back up, but it was a good lesson in how precious and precarious health is. It can be taken from us at any time if we are not careful.
I know what it is like to be swimming in infection soup. I know what it is like to be sick and confused by all the contradictory information. I found my way out of the rabbit hole. And now, I have devoted my life to helping others find their way out too.
So, as I reflect on this day, I count my blessings. One of them is that I can think clearly enough to count…
By Tapp Francke Ingolia