Sarah (age 20) and Deanna (age 17) have been sick their entire lives. They both have congenital Lyme, contracting it in utero. I did not know I had Lyme disease when I became pregnant with each of our girls. I was also not aware that their father had Lyme too. Our girls have lost their entire lives thus far to this horrible “thing” we have been dealing with, but didn’t know what to call it or where to get help.
The absolute hardest part of having Lyme disease is that it is an unseen disability. People think our girls look normal, so they expect them to act normally. They sometimes come across as quirky and antisocial when they are actually none of these things. They just feel bad all the time! Sadly, even we, their parents and family, have misunderstood them terribly in our efforts to unravel this medical mystery. Life so far has not been that enjoyable for Sarah and Deanna. Lyme not only affects them physically, but mentally and emotionally as well.
Our daughters’ main disability is the debilitating fatigue from which they suffer. It takes every ounce of energy they have to make it through a normal day. They constantly feel bad– like they have the flu, or on some days, much worse. This leaves no energy at all for homework, chores, friendships, and personal interests—a life! Many days upon arriving home from school they would have a complete meltdown! In addition to school and homework, they now both work part-time jobs to pay for college and to have a little spending money, which only worsens the situation.
It is inconceivable to us that over the years, not one of the doctors, specialists, counselors or therapists we saw were able to provide us with any real help, or that no one had any knowledge about Lyme disease. It was not until we saw an integrative medical doctor that we were finally on the right track to getting to the root cause of all our symptoms. By this time, Sarah was 17, and the integrative doctor tested her thyroid levels and said they were the lowest of any patient she had ever seen, young or old. She told us if Sarah’s levels were this low as a young child, that she would be developmentally disabled.
We eventually saw a doctor who tested us for Lyme. The tests came back negative. I had done extensive research and monitoring of all of our symptoms. I called the doctor and told him I was convinced the test was a false negative. He agreed, and referred us to our current Lyme doctor who is a Godsend to us.
Our entire family was finally diagnosed with Lyme disease and many co-infections in March of 2015. This is after 19 years of our children being misdiagnosed or treated like our symptoms were either exaggerated or all in our heads. Lyme disease is financially devastating to a family who has only one ill person; but to our family with all four of us in treatment, it is highly unlikely that we will ever be financially stable.
After 19 years of trying to get diagnosed, we had no savings, no retirement set aside, high credit card balances, and no discretionary income. I work a full-time job plus 2 part-time jobs and manage my husband’s freelance business. My husband works full-time plus all the overtime he can get and does freelance jobs on the side. We have worked this way for many years. Even though we worked constantly, and still continue to do so, we were forced to claim bankruptcy in 2013. Sarah managed to obtain a few scholarships, and is working and paying her own way through college, as we are not able to help her financially. Deanna also works for her own spending money and will be working her way through college too.
Since finally getting diagnosed, our expenses for actual treatment are even higher. We have to work longer hours, set up payment plans, or borrow money for each additional medical bill. We are not only physically sick, but mentally and emotionally exhausted. This makes the treatment we are able to get not as effective. It is a never-ending uphill battle. This struggle has literally drained the life out of us. We want our daughters to experience what life is supposed to like—to have hope and to experience joy. This grant offers us that ray of hope. It will help us to continue their treatment. It helps relieve our family’s stress and anxiety, which will help us all to heal.
We cannot express enough our appreciation and gratitude for the life changing hope you have given us. Sarah and Deanna are very special girls. They have immense courage and strength and many wonderful God-given gifts to offer to this world. Thanks to your generous grant, they will be able to share their gifts and pay the kindness forward.
Recent Update: I am happy to report that our entire family has been cured of Lyme and all of our co-infections! Sarah and Deanna are full of hope and optimism for the future. They continue to work on building their immunity and concentrate on living a healthy lifestyle. Sarah just completed her Associate Degree in Visual Communications and works as a restaurant shift manager. Deanna is beginning college majoring in Marketing and already has a job in her chosen field. We are so grateful to the LymeLight Foundation for the huge part you played in our recovery!
Days after Sarah was born, life became a never-ending nightmare for our family. Sarah started out with feeding and digestive issues; followed closely by blood curdling, “I’m in pain” screams much of the time. As she grew, she also experienced multiple food intolerances, fine and gross motor delays, terrible night terrors, speech difficulties, and cognition issues. She contracted coxsackievirus and had strep throat multiple times. She began having issues with toenail fungus and athlete’s foot. Around age 7, Sarah was diagnosed with Hashimoto’s Thyroiditis. Her symptoms were extreme lethargy, weight gain, hair falling out, dry skin, keratosis pilaris, cold hands and feet. We were unable to get her thyroid levels regulated with medication. As Sarah grew, we noticed she had issues with sensory processing disorder, self-control, drama, being unable to express herself, and executive functioning. She had difficulty staying awake, OCD, anxiety, irritability, depression, and constant brain fog.
We started to see our pleasant, extroverted little girl turn into a sullen, irritable little girl who did not want to socialize with friends. She did not want to play with her sister. She spent most of her time indoors with her cat. She became extremely introverted. In the fourth grade, she was mistakenly diagnosed with ADD (inattentive type) and placed on an IEP in school. We tried several ADD medications, which gave no improvement. We also went to family psychotherapy with little improvements. We spent much time fighting with the school for proper IEP accommodations. As a teenager, Sarah became so introverted that we suspected she might have Asperger’s Syndrome. The entire family attended family counseling to help us deal with communication and emotional issues that were later attributed to the effects of Lyme disease.
When Deanna was born, we assumed taking care of her was going to be a breeze, compared to her older sister. Sadly, she seemed to be much worse off. Her blood curdling screams went on 24/7, and she was not able to sleep. We put her to bed at night in a pumpkin seat next to our bed, because we were afraid she would aspirate while we were trying to squeeze in some sleep, of which there was very little. Deanna was finally placed on a heart monitor and began to sleep in a reflux sling. We couldn’t even rock our baby to sleep!
As she grew, she experienced the same multiple difficulties as Sarah. In addition, she experienced severe speech delays, attended a special preschool for children with difficulties, suffered from severe short-term memory deficit, was diagnosed with a heart murmur, and misdiagnosed with ADHD (hyperactive type). She also tested as gifted, and while she was definitely not living up to her potential, the schools told us that gifted children were not permitted to have IEPs, and she was not given any accommodations. Deanna was eventually diagnosed with primary features of Nonverbal Learning Disorder and Sensory Processing Disorder. None of the therapies or medications she received for each of these diagnoses helped.
Our usually bubbly, bouncy, happy little girl was becoming more lethargic and just feeling bad all the time, her wellness slowly deteriorating just the way her sister’s had previously. She had no energy to do all the things she wanted to do, and would often get into trouble for “forgetting” things. She also had red itchy hives on the majority of her body. These were later found to be caused by Morgellon’s disease, which is another co-infection of Lyme.