Lyme Disease expert, Dr. Kathy Spreen, to speak April 30
By Dorothy Aicher
I often say my children are lucky that I was the first one in our family to become severely ill from Lyme Disease.
Why? Because I’ve experienced firsthand the fatigue, brain fog, depression and aches and pains that come from tick-borne disease. And when you know the symptoms, you probably won’t dismiss those symptoms when you see them in your child. You’ll probably be inclined to get your child the kind of medical evaluation and treatment that saved you from living like a zombie in pain.
Both my children, a son and a daughter, have suffered from tick-borne illnesses. First, I’ll tell you the story of my daughter.
When JJ was 6, she got a high fever and stiff neck. The next few months, once a month, she’d get a fever and illness for a few days. That subsided when she was treated with antibiotics for a strep throat.
However, she later began having some health problems that caused her to drop out of competitive swimming. The chlorine seemed to give her allergies and headaches. I frequently took her temperature, and it was typically was 99 or a little higher. But except for things like colds and sore throats, she didn’t have illnesses that warranted taking her to the doctor.
When she was 12, she got a tick bite. The tick didn’t seem to be a deer tick, and the rash was not a bullseye rash (Lyme Disease is associated with a rash that resembles a bullseye), but she often complained of headaches. While showering one day, she sat down and fell asleep for a while. In the fall of that year at our parent-teacher conferences, JJ’s teachers told us when it comes time to change classes, she just sat there, staring at the wall.
When I resolved to take JJ to a Lyme Disease doctor, my husband protested. “All the kids her age are tired!” he said. But I had talked to many parents and Lyme-experienced doctors by that point — because of my own experience with the disease — and I was convinced.
I took JJ to a Lyme disease doctor. Her blood tests revealed that she was infected with the tick-borne disease Ehrlichiosis. The Ehrlichia microbe infects certain blood cells, which would explain JJ’s fatigue. In a follow-up visit about a year later, she tested positive for babesiosis, and not long afterwards, she also had a positive blood test for Lyme Disease.
In the end, my child had positive blood tests for 4 different tick-borne diseases, any one of which can impact a child’s health severely. Fortunately, after extensive treatment, although she still struggles with occasional headaches, knee pain and fatigue, she went on to have some great high school years, graduated, and is now successfully attending a college that she loves.
My son is reluctant to see his story told in this article. But he, too, has suffered with the disease, and was even treated at the National Institutes of Health at one point.
My own story is one that could happen to any middle-aged or older person in our area. I mention the age aspect only because, I believe, an older person with neurological Lyme Disease runs the risk of being diagnosed, mistakenly, with dementia.
It started around the same time that my son developed the neurological problems that were diagnosed as an autoimmune disease. Around that time I got at least two tick bites, one of which gave me a bullseye rash on the back of my head.
When I began experiencing symptoms like a headache and malaise, I was on vacation in western Massachusetts. This sequence of events resulted in me getting only a very short course of antibiotics and no blood tests for Lyme Disease. The antibiotics appeared to make the illness go away, and I forgot about it for quite a while.
I cannot say with certainty that my first Lyme-like illness was neurological Lyme Disease. What I can say is that about six months after the bullseye rash on my head, I began having frequent headaches and some vision problems. Soon, my headaches became constant, and for the next several years, my life turned into a search for a cure. Lacking the swollen knees that are the hallmark of Lyme Disease, I didn’t particularly suspect that I might have it.
What rescued me from languishing forever with debilitating headaches? A new case of Lyme Disease! This time, it started in California. To help my sister celebrate her 60th birthday, in 2004, we spent a day in Napa Valley, California. A day or 2 later, I noticed an apparent insect bite and skin infection. And then I got a flu and stiff neck, which I thought (mistakenly, it now appears) I caught from a visiting relative who had a fever and flu.
Next came a year of worsening joint and neurological problems. The decisive point came when I realized that, 6 months into the future, I would need a walker to get around: my hips and knees were that bad.
Accepting a neighbor’s advice, I sought out a “Lyme-literate” doctor. At my first appointment, I explained that I got tick bites every year; I had all the symptoms of Lyme Disease; and my blood tests for other diseases were all negative. I hoped she could prescribe a course of antibiotics for me.
After thoroughly testing my stiff and swollen joints and performing other evaluations and blood tests, the doctor diagnosed me as having Lyme Disease, and prescribed antibiotics. Once I started on the antibiotic, I started feeling a little better every day, instead of feeling a little sicker every day.
If my story were a movie, it might show me throwing aside my walker. And the audience might cheer as I walked or ran without it. But I would probably focus on what I see as a climate of care that wants me to apologize for seeing a doctor who diagnosed Lyme Disease based on its symptoms, rather than a Lyme-positive blood test.
I am still astounded that, in the years that my health had been deteriorating from Lyme Disease, I had had negative blood tests for the disease. Some doctors might never have treated me for it. But where would I have been without that diagnosis? In the year preceding, I developed neuropathy and weakness similar to multiple sclerosis, memory deficits so bad that I couldn’t even finish my sentences or know what year it was, and arthritis throughout my body. Without the Lyme Disease diagnosis and treatment, I fear that I would’ve been pronounced as having incurable diseases and allowed to die, in constant pain, within a few years or so.
I wanted to know more, and it’s good that I did, because when my children became similarly affected, I had tools I needed to help them recover. I asked my Lyme doctor how I could find out more about Lyme Disease, and she told me the public could attend the Lyme Disease Association’s 7th Annual Conference: Lyme & Other Tick-Borne Diseases: Seeking Answers Through Science, held Oct. 20, 2006, and that’d be an excellent way to obtain additional scientific information.
If you want to know more, there is also an awesome new book out now called Compendium of Tick-Borne Disease: a Thousand Pearls, by Dr. Kathy Spreen. Our area is fortunate that Dr. Spreen will come talk about the subjects in her book on April 30 at 6 p.m. in the auditorium of the Hopewell Township Municipal Building, 201 Washington Crossing-Pennington Road. (Those interested in attending should call (609) 737-0120, Ext. 638.)
If you are unable to come hear Dr. Spreen, you can buy her book through Amazon. Or consider finding out more at a Lyme Disease Support Group, held on the second Thursday of the month, 6 p.m., at the Washington Crossing Unitarian Universalist Church, located in Titusville.
Dorothy Aicher lives in Titusville.
