Support Sydney Cox's Lyme Treatment

Sydney is a 16 year old who is grieving for her old life and self after Lyme Disease and multiple co-infections robbed her of them. She experienced years of unexplainable symptoms that worsened over time until she eventually was diagnosed with Lyme Disease and multiple co-infections. While many physical symptoms have improved after over a year of treatment, she continues to suffer from serious neurological issues. She needs additional long term aggressive treatment, but insurance does not cover it.

Sydney used to excel in school, sports and music. But as her symptoms worsened, she had to drop everything, including earned positions on her travel basketball team and in the youth symphony orchestra. She has been unable to attend school with her peers. It has been very difficult for her, as a teenager, losing everything that has helped shape her identity and given her confidence. She wants her life back. She wants to be able to return to school, pursue her passions and live a normal life again. Helping her family pay off the debt they have incurred for treatment so far and to be able to afford her upcoming treatment would be a huge blessing.

Sydney’s father is a Deputy with the Loudoun County Sheriff’s Office in Virginia.  He has been in law enforcement for 27 years, 20 of those years with Loudoun County. He is an active member of the Fraternal Order of Police.

This fundraising initiative is sponsored by the Fraternal Order of Police Loudoun-Dulles (VA), Lodge #69, and all contributions are tax deductible.

Large contributions may be mailed to:
Attention: Sydney Cox Fund
PO BOX 774


Sydney has always been outgoing, funny and intelligent. She excelled at most everything she tried and was among the strongest students in her classes.  She was competitive and driven both as an athlete and a gifted musician.  She dreamed big and often spoke about all the things she wanted to do with her life.

After years of doctor visits for unexplainable symptoms of headaches, leg pain and flu-like symptoms she experienced on and off since Kindergarten, one day, it seemed that the bottom fell out from beneath her.  In the fall of her 8th grade year, she began experiencing debilitating migraine-like headaches, vision loss, profound fatigue that caused her to fall asleep in class, and loss of motion and numbness in her arms and legs. She even lost the ability to ability to read and write. 

During a basketball tournament she became disoriented and confused while on the court in the middle of a game. The gym lights hurt her eyes; she couldn’t recognize her team members or understand what others were saying to her.  At one point during a break, she didn't even know where she was and babbled incoherently. Doctors, including a neurologist, concluded it was not caused by any concussion but yet had no other explanations.

She began struggling with school work daily.  She wasn’t able to focus, recall previously mastered material, spell simple 3 letter words, or comprehend what she had just read.  She struggled to find the right words to use when she communicated. We sometimes found her up until the early morning hours exhausted, tears streaming down her face, staring at a simple written assignment she couldn’t read. "I can’t do this! I see the words on the paper, but they make no sense! What is wrong with me?” Doctors eventually diagnosed her with Lyme disease coupled with multiple related co-infections.

She had to drop out of her travel basketball team after struggling with increased fatigue, anxiety, joint pain and coordination. Then she had to give up her earned position as a violinist in the youth symphony orchestra. There were days when the arthritic pain in her hands and fingers were so bad that she couldn’t hold her violin. Days when the crippling pain subsided enough so that she could play her violin, her mind wouldn’t allow her to read or remember her music, including pieces she had already mastered.

Eventually, she could no longer attend school with her peers as she just couldn’t keep up from the debilitating symptoms. She began taking classes through the Homebound program that the school system provides.  Even with this accommodation, she had to drop classes as she struggled with pain, profound fatigue and cognitive issues.  

Most painful for Sydney is her watching her peers pursue their passions and seize opportunities that she always assumed she would be doing as a teenager. She struggles to find a ‘new’ identity in the midst of this battle.  She has lost all confidence to do the things she used to do.  One by one everything that Sydney ever loved or cared about has been taken away from her.

As time passed, her symptoms worsened.  She struggled daily with symptoms that would last from a few minutes to several hours or even weeks at a time. Some of these symptoms included feeling numbness from the waist down, loss of sensation in just an arm or a foot, throwing up randomly, vision loss, excruciating stomach pain, fevers, debilitating joint pain, circulation issues, nausea, uncontrollable twitching, profound fatigue (even sleeping 20 hours a day for months at a time), crying uncontrollably or lashing out in anger for no apparent reason.  There were many days when she tearfully told us, “I don’t want to be here anymore.”  She suffered from seizures and multiple psychiatric issues, including hallucinations, depersonalization, suicidal ideation, daily panic attacks and severe depression. 

Although over time, some of her physical symptoms improved after treatment by a Lyme literate doctor, her neurological issues remained unchanged.  Some even became worse.  Over many days and months our family functioned in crisis mode while she experienced horribly frightening symptoms.  We feared where this disease was taking us. She would tell us, “It’s not me anymore. I’m not even here anymore.”  It broke our hearts to hear our daughter say these things.  We felt helpless.

We found a specialist who understood her and how to help some of her neurological issues.  He reassured her, “This isn’t you, Sydney. It’s the infection.  It’s basically like the infection is trying to ‘eat’ your brain.  A lot of your symptoms are like what someone experiences with a traumatic brain injury except that what is causing your symptoms is completely different.  Your brain will get better when you get rid of the infection. ” He gave her much needed hope and reassured us that the damage, inflammation and demyelination caused by the infections can heal over time and that she will be able to get her life back on track. He told her, “Don’t get lost in this.”  

We remain optimistic because of the treatment she has received so far.   Her current doctor's recommendations is long term aggressive treatment which has been successful for many patients suffering from central nervous system issues and multiple infections like Sydney.  However, insurance does not cover it.  Partly because of Lyme disease’s elusive symptoms, the CDC does not recognize chronic Lyme.  Most of Sydney’s treatments must be paid out of pocket. There is no insurance reimbursement. While her treatment so far has depleted our savings, Sydney remains our priority. The new aggressive treatment comes highly recommended, but also with what seems an insurmountable price tag.  Yet we have hope for Sydney.  We want our daughter back. She wants her life back. We have the hope that this treatment offers and for her, one day, to be able to realize her life’s full potential. 

For more information about Lyme disease and co-infections, see
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Tim Ortwein 
Purcellville, VA
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