The Beginning of Being MissUnderstood...A Condensed Version

It was a typical day in October of 2007. Delaney headed out the door to her  fifth grade classroom with her friends. At this point in her life she was learning piano, playing soccer, reading every book she could get her hands on, being a beautiful ballerina, showing some real possibilities of being a competitive runner, really getting good at double dutch jump roping and just having fun with friends. She was a very well adjusted, happy and healthy kid. Until that afternoon, when she called me from school with a bad headache. She didn't make it back to school the rest of the year. This headache started us down a road of endless doctors. We started at her pediatrician, thinking she had a sinus infection. 

Her pediatrician did an X-ray to check for a sinus infection.  There wasn't any - it was normal.  All looked fine.  We didn't realize at the time that we would hear these same words from 40 different doctors and hundreds of more exams and tests....MRIs, blood test, EKGs, EEGs, heart monitors, ultrasounds, and spinal taps.  All came back negative.  She even had a Lyme test through Labcorp.  Of course it was normal, too.  And followed up with the explanation from an Infectious Disease Doctor that Lyme hardly exist in California, so of course it would be negative.   Almost all of these doctors suggested she see a Psychiatrist or Psychologist.  They couldn't come up with any answers so they turned to psychology.  Most of the time after only a few minutes in their office.

From the headache things progressed quickly.  By November we had our first run to the ER.  I thought she was having an aneurysm because she was having such intense head pain.  By Christmas she was so fatigued she was having a hard time doing anything.  By January her fingers and toes started turning purple and her blood pressure dropped extremely low.  By February she was having a difficult time walking, often looking like a Parkinson's patient as she shuffled and struggled to put one foot in front of the other.  By March we were having to carry her to the bathroom and some days spoon feed her, and she ended up in the hospital for the first time.  By April her whole body ached and hurt constantly and she was so nauseous that she became anorexic from not eating. 
It was an entire year of progressively getting worse and no doctors to help.  We felt like we were living out a very bad nightmare.  Our trust in our great medical system was crushed.  We kept searching.  We Kept trying everything we could, including things such as biofeedback, physical therapy, relaxation therapy, hyperbarics, craniosacral therapy, chiropractic, many medications, and acupuncture.  Nothing helped.  Delaney just kept sinking further and further into sickness.

Finally, in October of 2008, someone directed me to the Igenex Lab and told me about the controversy surrounding Lyme Disease.  I did research on it and we got Delaney tested.  She was CDC positive and had 2 co-infections; ehrlichia and babesia.  I was so angry.  If only we would have known the controversy surrounding Lyme earlier.  If only one of the 40 doctors we saw would have been aware of Lyme and recognized it in Delaney.  Delaney's symptoms were classic for Lyme.  And, yes, Lyme is very prevalent in California!

Once diagnosed we found an LLMD (Lyme literate medical doctor) and began treatment. Unfortunately, the longer you have undiagnosed Lyme the harder it is to treat.  Delaney was started on a quarter dose of three medications.  Her body responded quickly with such intense pain that she couldn't handle it.  This is called a herx, it is a reaction to all of the toxins as the bacteria is killed off.  We ended up in the hospital on an IV drip of intense pain medication that didn't even touch her pain.  Despite very physical symptoms, such as the purple toes and fingers, the very low blood pressure, the lack of food digestion and absorption, the throwing up with nausea, the EXTREME pain....they still went to Psychological issues.  They totally denied the positive Lyme test, stating that she had been on antibiotics for over a month and if it was Lyme she would have been well by then. This was the worst experience of my life.  Delaney's, too, but thankfully, she doesn't really remember much of it.

I knew at that point that Delaney's body could not handle the antibiotics and that I wasn't going to get any help from the medical community.  I began searching for some other form of treatment.  I found Bodihealth.  It is an electrical treatment.  It is not just for Lyme.  It actually does not even treat the Lyme.  It treats your body so that the body can take care of the Lyme.  Amazingly, Delaney began to respond to it fairly quickly.  She started treatment in January, when she was at her sickest.  By August she was back in school.  She was far from well, but was active in life again.  Unfortunately, bodihealth only took her body so far.  We rode it out, hoping it would continue to help.  However, after a total of 17 months we decided to turn to another LLMD.

This started us down the path of antibiotics again....and again, not having any success.  We tried oral antibiotics, injections and IVs.  Over all, Delaney was on antibiotics for a total of 19 months with absolutely no improvement.  At this point, we decided we had to try something else....yet again.  That something else took us to the Hansa Center in Wichita, Kansas.  Here we are four and a half years after that initial headache.  We have cried often, been angry, frustrated and overwhelmed.  Delaney has been misunderstood through it all....not one doctor truly understanding her.  However, I know through all of the misunderstandings, we are understanding great things we never understood before.  It is because of this, I am blogging about my little Miss Understood.  A place I can blog about the things I am learning and struggling with as I seek understanding.  Hopefully, you will share on this journey with me.