The Long Road to a Lyme Diagnosis

In August 2012, my daughter became critically ill. What we thought was the flu, progressed to a point where she could no longer function physically or mentally.

At the time of her illness my daughter was a straight "A" honors student and playing Water Polo. She was doing 360 sit-ups, 20 pushups and swimming for 2-4 hours every day. One day she came home from school with a flu like symptoms and a fever. After a week of her progressively getting worse, I started taking her to the doctor on a Bi-weekly basis. By the second month of her illness she could barely walk. She'd gone from Geometry/Algebra to not being able to do simple addition/subtraction. She had a laundry list of symptoms: Constant migraine type headache, extreme insomnia, extreme light sensitivity, sound sensitivity, neck/back pain, muscle/joint pain, jaw pain, extreme foot pain, extreme fatigue, shortness of breath, nausea, abdominal pain, low blood pressure, lightheadedness, as well as a recurring low grade fever that was accompanied by a diffuse rash. Later she developed reddish/purple striated marks on her back, her legs/feet would remain bluish & cold most of the time and her blood pressure would hover in the 70:50 range making her completely intolerant of any activity.  Her memory which was once sharp as a tac had disappeared. She wasn't able to walk more than ten feet without starting to black-out. School had become virtually impossible.


Initially, her doctors started running all the normal blood tests including mono and strep which all came back negative. One weekend she was particularly bad so I took her to Urgent Care. The doctor was stumped but because she had a rash he tested her for human Parvo-B19 (which came back positive) and Coccicioides-Valley Fever (which came back equivocal).  There is no treatment for the Parvo Virus, so we let it ride while they repeated the test for Valley Fever two more times which both came back equivocal. After 3 months, because her symptoms weren't getting better, her Pediatrician referred us to a large children's hospital (which will remain nameless for now).  Six more months, three Hospitals, countless Board Certified Specialists (Infectious Disease, Neurology, Cardiology, Rheumatology…) and $20 thousand dollars later she was living in constant pain and mostly bed ridden. Along the line, she was diagnosed with viral encephalitis, neutropenia, vasculitis, dysautonomia & POTS and referred to a Pediatric Pain Management Clinic. Here she was given an anti-depressant and a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue/Fibromyalgia -vs- Somatoform Disorder and referred for Psychotherapy and Physical Therapy. She was 14.




I am a physical therapist, and while I could see the value of physical therapy for her, I did not believe antidepressants were the answer to her problems, and I knew her symptoms were not in her head! I was determined to find the source of her illness and cure for my child -- Hence the nickname "Tenacious"  I started studying infectious diseases and felt her symptoms matched that of Lyme Disease. I was repeatedly told by her Doctors "we don't have Lyme in California." I didn't stop until I found a Doctor willing to test her for Lyme and several other potential illnesses that she had not already been tested for.

Long story short, she came back positive for Lyme & Ehrlichia Chaffeensis; equivocal for Valley Fever & Bartonella, and her Pavo-B19 titter had increased nearly 10 times from the baseline.

This led me down a long road of studying Lyme Disease and other co-infections that are associated with tick bites. Vector borne illnesses are extremely complex and difficult to treat. There are two basic schools of thought in the treatment of Lyme disease: The Infectious Diseases Society of America (IDSA) and The International Lyme and Associated Diseases Society (ILADS). My broad education and background have taught me to always look at both sides of every situation and I see the value in both schools of thought. I have read numerous books and medical journals on infectious diseases and Lyme.

I will be using my blog to share with you some of the information that I have learned in the hopes that: 

1) I can spare Someone from the pain & suffering my daughter has endured;
2) At least one medical professional will learn and grow from my experience;
3) The Medical Community will develop better standards for diagnosing and treating Lyme and other vector borne illnesses.

Update: Summer 2014. My daughter is now a year into treatment. I'm not going into precise detail of her treatment because co-infections necessitate different treatment for every situation. I will tell you this: Two weeks of one antibiotic are not enough to kill a spirochete that has had a year to burrow into one's body; and her first course of antibiotics caused a Herxheimer reaction so bad it landed her in the hospital with a right-bundle-branch incomplete heart block. Over the course of this past year her energy level has gone from 0% to 40% and she has started back to a modified school program where she only goes to school 2-3 hours a week to get her assignments and I tutor her at home the rest of the week. I'm happy to say she's doing Algebra again and getting A's in most of her classes. The difference is that school was once a breeze for her. Now every day is like a monumental task. Everything is a chore--showering, dressing, eating, walking, thinking, writing--nothing is easy anymore. I am thankful she was in such good physical and mental shape before the onset of her illness. I believe the body and mind have great resiliency. I believe we are on the right path. I promise I will not stop until she has her life back.

Update: Winter 2015-16. On a good day she says she feels like she is 75% of her old self. She tells me she has resigned herself to the fact that she may never be 100% again. She continues to suffer from a low white count which makes her more susceptible to opportunistic infections. It requires friends and family to be extra diligent in cleanliness and infection prevention. Especially during flu season. My daughter has been powering through her High School classes and thankfully her math skills and excellent memory have returned. She has completed all the course work from her Freshman school year which she missed, and with the help of some amazing teachers at our Independent High School, it is looking like she may even complete her senior year early.  We had a big surprise last month when we found out her photographer was chosen as one of the Top 100 best Senior Photographers in the US and our daughters picture was chosen to be published in the Senior Style Magazine.  She is proof that Lyme and co-infections are an invisible illness.

Update: Summer 2016. This year has been full of ups and downs. My daughter caught the flu and had a major set back with her white count and her weight both dropping to dangerously low levels. She has had 4 allergic reactions and been in the hospital 4 times since February, each time with primary complaint of abdominal and chest pain. The last reaction was an anaphylactic reaction and much more severe. Her EKG still shows an incomplete right bundle-branch-block and this last time she went into SV-Tach which made her feel like she was dying. We have gone back to the drawing board and are reevaluating everything. Her doctor suspects "Mast Cell Activation Syndrome" so right now we are looking into that possibility.

The good news is she graduated from High School with straight A's and was Valedictorian of her class. You can watch her amazing speech [here].

The cool thing is the Superintendent of Schools was moved to tears by her speech and never forgot about it. So last month we got a call from the School District asking her to be the motivational speaker for the "Back-to-School" Assembly for the entire School District. There were between 600-700 teachers there that morning and I can tell you there was not a dry eye in the house. You can read her speech [here]. (I will post a video as soon as we get it formatted.) These are some pictures during her speech.

Note: I am a licensed Health Professional, but I AM NOT A DOCTOR. I cannot diagnose nor can I prescribe treatment. While I will attempt to provide citations the basic information contained in this blog is simply my opinion.