Sometime in 2004 or 2005, I awoke with a tick the size of a poppy seed embedded in my neck. It was not the first tick I’d ever had, but it was the most embedded. I looked in the bathroom mirror and wondered when I’d developed a new beauty mark. I turned on the bright lights and ran my finger lightly over the mark with the tip of a finger. I could barely feel it. I grabbed the close-up mirror I used to put on mascara, as well as my reading glasses, and got as close as I could. What I saw was a very determined little creature, so deeply embedded in my neck that merely scratching it would do nothing. If I were going to remove this tick, I would have to use the sharpest tweezers in the house. Removing it felt like I was ripping off a piece of myself.
Three weeks later, I was in the kitchen making coffee and letting my very frisky 2-year-old cats out to play, when I sat down, and could not get up again. It was as if my legs were paralyzed. It was a frightening moment. My internal dialogue went something like this, “Grab a hold of yourself, girl. Breathe. Drink your coffee, read the paper, and then try again.”
I did as instructed and 15 minutes later I was able to get up—but I had intense pain in my right knee which made going up and down the stairs, of which there were many, extremely challenging.
I immediately got on the internet to scope out the possibilities. My gut told me it was related to the tick bite. I phoned the doctor and arranged to go in and see him immediately. I pleaded with him to put me on antibiotics. Since I did not have a bullseye or a rash, he refused to give me a prescription for doxycycline. He believed it was arthritis. But I was adamant. And determined. And somewhat outraged. I knew my body better than anyone and he was not paying attention. In the end, he gave in and agreed to put me on antibiotics—but only for a week.
A week later, my body was filled with water to the tune of 20 pounds. I decided to try a massage. My masseuse took one look at me and asked what the hell was going on? I told her I had no idea. My body was freaking me out.
I had chills interspersed with sweating episodes, had pain in all my joints, and had gained 20 pounds in one week without changing a single eating habit.
The rounds of doctors began. One doctor said he thought I had psoriatic arthritis, another said it was a torn meniscus. My allergies to trees, flowers, grasses and dust got worse. I was told to take Prednisone to keep the inflammation in check. Prednisone made me feel like Supergirl, until I experienced the crash, post feeling high and powerful.
The one constant in all my blood work became inflammation. When I asked why I had all that inflammation, no one seemed to have any answers.
As time went on, I had episodes. Then, more ticks bit me. Never again did I actually see them or have to remove them. I might discover a bruising bullseye while drying myself off after a shower, or suddenly feel as if I was having the worst flu in the world, in the middle of summer. Antibiotics would follow, for as long as four to six weeks.
My white blood cell count plummeted along with my magnesium and potassium levels. Doctors dealt with the symptoms and I tried to stay afloat.
In 2010, I replaced the left knee, then in 2015 the right. Last September, I dropped a glass while doing the dishes and realized I’d lost all strength in my left hand while experiencing terrible wrist pain. Subsequently, I had wrist surgery to fuse two bones together. We caught it just in time. Had I waited any longer I would have needed a joint replacement in the wrist.
In 2013, I discovered I’d been living in a mold-infested apartment since 2011. My environment was conspiring to kill me. I moved out, and have been living in a mold-free environment since October 2013. But it all took a huge toll. I became very, very ill.
I could not remember the names of people closest to me. I could not remember the correct words to describe what I was thinking, and I could not write.
I awoke each morning in excruciating physical pain. There was not a bone, a joint or a muscle that did not hurt. I had headaches that began upon waking and sometimes did not go away for three or four days. I slept with a giant bottle of Excedrin Migraine by my bedside. I felt nauseated most of the time and vomited occasionally.
It is amazing how used to pain one can get. My social schedule shrank as my allergies expanded. I no longer tolerated wheat, dairy, sugar or alcohol. Pasta, pizza, beer, rice, noodles and breads and cakes of all kinds, as well as French and Italian cheeses, cream, ice cream, yogurt and the occasional glass of red wine were now poison to me. I saw myself in a wheelchair looking like Stephen Hawking minus the intelligence. But I was not ready to stop living! I had things to do, and places to go!
One evening last summer, I was invited to a dinner party. Our hostess was French and cooked with all the ingredients we love—butter, cream, flour, cheese, sugar—in short, everything I was allergic to. I ate the salad and tried not to be too much of a pain. I sat next to the author Linda Francke, who asked me whether I had always been allergic to so many foods, to which I said “no” and I missed being able to eat them. Being the insightful woman she is, she asked whether I could pinpoint an incident, something that might have triggered these food allergies? I thought for a moment, and realized the allergies and the pain began after my first tick bite. To which Linda said, “You need to talk to my daughter Tapp. She’s cured herself of Lyme. Maybe she can help you?”
Two days later, I contacted Tapp Francke, and have been going to her for nutritional counseling and advice ever since. Her advice has given me my life back.
I take herbs to combat the many strains of Lyme and its co-infections, eat a diet of green vegetables, fish and chicken, drink Green juice every morning, and take supplements. I felt a lot worse before I felt better, but this past July I turned a corner. At this time last summer, I could not swim an inch without going to the pain doctor for steroidal epidurals for intense spinal pain. I simply wanted to walk pain-free for a few days.
This summer, I have gone back to swimming laps. Yesterday I managed 30. It’s not the 80 laps a day of my previously healthy self, but it is miraculous progress.
The best part is the brain fog clearing in my mind. If pride comes before a fall, I was guilty. I prided myself on a sharp and critical mind that never seemed to stop questioning. Until Lyme disease did all but shut me down.
I am grateful, grateful, and grateful. My Lyme therapy is not done, far from it, but for the first time in 12 years, I know I am on the way back to myself.
So if you are out there with Lyme disease and desperate because nothing you have tried has worked, please don’t stop looking to get better.
Doctors are working on new and conclusive tests as well as new vaccines. Dr. Patricia Coyle at Stony Brook Hospital is doing revolutionary work with neurological Lyme disease. She and a panel of distinguished doctors associated with the Tick Borne Disease Center of Southampton Hospital will be at Baystreet Theater this Saturday afternoon, August 20, where recent Lyme related breakthroughs will be discussed and your many questions can be addressed. I’ll be there, and hope you will be as well.