Everyone can look back and realize how different life would be if one minor detail changed.
Sometimes it’s as dramatic as when another vehicle pulls into your lane and comes within an inch of crashing into you.
Or it might be as simple as a decision to attend a social function where you end up meeting your future spouse.
These “what would have happened if...” experiences have a knack for keeping us awake at night.
One such moment that comes to mind began about 11 years ago in the back room of an area retail store where I worked after high school and during my first year of college. I hadn’t been feeling well all day, and my flu-like symptoms worsened as I worked. Eventually I grew too fatigued to continue, and I went home early.
The mysterious illness persisted over the next few days, undiagnosed until a telltale rash developed. It was shaped like a “bulls eye” with rings surrounding a center dot.
A visit to my doctor’s office confirmed my suspicion: Lyme disease.
A couple weeks and a round of antibiotics later, I was fine.
Even though I no longer have Lyme disease, I am acutely aware of what might have been, had the rash not appeared and the infection continued, undiagnosed, into the next stage.
Many people are not so fortunate.
May is Lyme Disease Awareness Month and I’d like to introduce someone who has “been there, done that.” This is a question and answer interview I conducted via email with Beka Waters, 22, of Clarks Summit. The responses are her own, but due to cognitive dysfunction (a symptom of the disease), she had some help forming the sentences.
It is my desire (and hers) that her story will bring awareness to people who know little or nothing about Lyme disease and hope to those who may be on the same or similar paths in life.
Can you tell a little about your journey with Lyme disease, how it first started and when it was diagnosed?
My journey with Lyme disease began in the summer of 2010, when I was thirteen years old.
My symptoms started as a high fever that left me bedridden for a week. Then in the weeks and months that followed, I developed more than 20 symptoms as it invaded multiple body systems. I was seen by my pediatrician many times, referred for testing and scans, and sent to specialists and children’s hospitals. I received four different diagnoses, based on some of my symptoms, but the rest were not addressed and the root cause not sought.
After much prayer, the prompting of caring people looking in and our own research, we were pointed to the possibility that this could be Lyme disease. I was seen by a local Lyme literate physician, more than a year after the onset of my illness, and I was clinically diagnosed with Lyme disease, Babesia and Bartonella. Blood tests were done, and I began treatment. A year later, my Lyme physician sent me for a second opinion and confirmation of treatment course, which I received from a leading specialist in the field.
How has Lyme changed your life?
Right now it’s too hard for me to share what my existence looked like during the years living on a couch in constant and continual illness.
What I can say is I was unable to graduate high school (even with modified home education), unable to learn to drive and get my license, unable to get a job or go to college, unable to see my sister graduate in the Marine Corps.
I missed out on being a teenager in nearly every aspect. I’ve missed out on vacations and family gatherings, unable to travel these past nine years. I missed so many opportunities to develop relationships and have fun times with friends and my sister.
There are many things I can’t do; and the things I can do, take a lot of time, effort and courage. Sometimes I reach out for more, only to find I must settle for less – whether it be just for the particular day or for this time in my life.
What are some struggles you’ve had to deal with in association with the disease?
Living with and treating chronic Lyme disease has been a challenging process for us.
Due to the fact that many who contract Lyme disease are easily treated, those who don’t get well from short term treatment are often misunderstood and don’t receive the support and help they need.
There are multiple tick-borne illnesses that are often referred to under the umbrella term of “Lyme disease,” and, as with my case, they greatly complicate treatment and recovery. The lack of education among many in the medical field regarding tick-borne illness was and continues to be an obstacle my family and I face.
Although my family has insurance, many leading and long-term treatments for Lyme disease are not covered. My parents have struggled to pay the many thousands of dollars needed for my care. Because there is no universal cure, it has been difficult for us to find a treatment course with a promising overall success rate.
What has helped you in your journey with Lyme?
My family has been present and borne alongside me every minute, hour, day, month and year that has passed during which I’ve lived with this debilitating illness.
I could have never gotten this far without them.
My faith has grown closer to God, as I’ve witnessed Him see my needs and meet me in some very dark and trying times. His strength has provided the hope and courage I’ve so often needed.
A friend started writing me letters when I could no longer get out. Relatives visited from out of state when I could no longer travel to see them. People – both whom I knew and didn’t know – began faithfully praying for me and started sending me little notes of love and care. Wonderful new friends entered my life after periods of desperate loneliness. Christian music artists released songs that spoke comfort, truth and life to my spirit. Friendships developed with other Lyme patients in which it was easy relating to one another’s struggles. And I have been encouraged through the times I’ve been able to go out.
In all these ways and others, I’ve been so blessed.
What do you wish more people understood about Lyme disease?
I wish every person knew that anybody can get Lyme disease and other tick-borne illnesses, because ticks can be found in most any outdoor environment.
Not everyone notices the tick or gets a rash. The tests are not always accurate since they are based on the immune system’s antibody response, and tick borne illnesses often interrupt this response.
Lyme disease is often misdiagnosed, and the use of steroids can cause further damage.
Lyme disease can be serious and debilitating in both its acute and chronic stages. Some people die from this disease. It can affect multiple systems of the body. It has been proven to cause mental illness.
Not all cases of Lyme look the same.
Because the Lyme bacteria in its chronic stages can exist in three different forms, morphing from one form to another to escape treatments, it is difficult to eradicate.
My experience has opened my eyes to the pain and suffering of so many people who have been affected by this disease. I hope that this story is seen as being more than just about my journey, but that it is a voice for all those who suffer.
To those who are fighting, I hope that you press on until you find your cure.
Signs and symptoms of Lyme disease
Common symptoms of early Lyme disease include:
■ Rash - most are solid pink to red; uncommon: “bull’s-eye” or other appearance
■ Muscle and joint pain
■ The non-rash symptoms are often described as a “summertime flu.” Some people may notice areas of numbness or tingling.
Once the infection spreads beyond the skin, it can affect any system of the body, causing many symptoms including:
■ Debilitating fatigue
■ Muscle pain
■ Nerve pain and
■ Heart problems
■ Psychiatric symptoms: anxiety, depression, irritability, psychosis and more
■ Difficulty with thinking, memory, language and math skills
■ Sleep disturbance
■ Problems with vision and hearing.
What is Lyme disease?
Lyme disease is a bacterial infection caused by a spiral-shaped bacterium (spirochete) called Borrelia burgdorferi. There are roughly two dozen species in the Borrelia burgdorferi sensu lato complex, not all are human pathogens. The worldwide distribution of the various species is not uniform. In the United States, almost all reported cases of Lyme disease appear to be the result of Borrelia burgdorferi sensu stricto (Bbss) infections. In Europe, 3 species - B. garinii, B. afzelii, and Bbss, are responsible for most cases of Lyme disease. The various species are further divided into strains and there are hundreds of strains worldwide.
In its early stages, Lyme disease commonly results in a rash, joint pain and headaches. Later-stage Lyme disease is characterized by arthritic pain, cognitive difficulties, fatigue and other symptoms that can have an enormous effect on a patient’s life. The Centers for Disease Control estimates that more than 300,000 new cases of Lyme disease occur each year in the US.