A Little Girl’s Rocky Road to Recovery
Nicole was nine years old when the nightmare began. Although her precious life was slipping away, physicians at some of the nations most well known hospitals were unable to determine the cause of her ongoing illness.
Nicole had a history of a tick bite and lived in a Lyme endemic area in Maryland. She had multiple Lyme symptoms and a positive blood test for Lyme, yet doctors refused to explore tick borne diseases as the cause of her deteriorating condition.
They not only dismissed her mothers concerns about Lyme disease, they emphatically stated it absolutely was NOT Lyme disease causing the child’s complaints and symptoms.
Unsure of the source of Nicole’s problems and how to treat her, doctors eventually suggested electrical shock treatments. Nicole’s mother, Anne, refused to consider the shock treatments for her child and went on a search for answers.
Thankfully, it all came together with the help of a dedicated doctor, an Internet support group, and the strength of a loving mother. Together they saved this little girls life.
This is Nicole’s story.
Approximately six years ago Nicole began complaining about flu like symptoms after a tick was removed from her ear. The many doctors visits, endless tests, and thousands of dollars in medical expenses provided no explanation and no relief from her recurring symptoms.
Nicole suffered with severe headaches, sore throats, fevers, stomach aches, fatigue, eye pain, and ringing in her ears. She developed a balance problem and constant dizziness.
Nicole’s pediatrician in Maryland eventually dismissed her complaints and indicated her problems were all in her head.
Doctor after doctor proved to be no help. Nicole’s physical symptoms continued to worsen and soon spiraled out of control. Her hands and arms began to jerk involuntarily. She was pale, ran a low grade fever and eventually became malnourished and dehydrated. She stopped communicating with her family and no longer socialized. She was too sick to attend school and became extremely depressed, developed anxiety problems and was unable to eat.
After a year of searching for answers another Maryland doctor diagnosed Nicole with “school phobia”. He insisted Nicole just return to school and “get over it”.
Frustrated by the doctors attitudes and lack of care, Anne requested her daughter be admitted to a well known hospital in a search for answers. After twelve hours of waiting in the lobby and arguing with insurance companies, the little girl was finally admitted to the psychiatric ward. Her physical condition had deteriorated to the point that she had to be placed on a feeding tube for nourishment. She was diagnosed with depression and was given several antidepressant medications in an attempt to force her to be “normal” again.
Nicole’s physical condition continued to go down hill during the six weeks in the hospital and her mother grew even more concerned. To make matters worse, Nicole began hallucinating and had bruises from falling out of her bed at night.
Although she pressed the issue, Anne was repeatedly told by the many so-called specialists at the hospital that Nicole couldn’t possibly have Lyme disease because she didn’t have a rash or swollen joints. The doctors couldn’t pinpoint the cause of Nicole’s problems, but they were POSITIVE it couldn’t be Lyme disease.
Chronic fatigue syndrome was finally offered as an explanation for Nicole’s physical complaints, but Anne was not willing to accept another unsupported diagnosis. She decided she had to take matters into her own hands and began researching Lyme disease on her computer at night, after spending her days in the hospital with her daughter.
During her search, Anne discovered the Lyme Net site which had an active online support group. There were over 3,000 members at Lyme Net, many who had been dealing with the same type of attitudes from doctors that Anne was experiencing.
Anne posted Nicole’s history and said of her current hospital stay, “She states she does not feel any better at all. They (the hospital) continue to tell me definitely not Lyme. I am so very scared. I live in Maryland and will travel anywhere for my daughter to figure this out. Please help me, the hospital continues to say it is not LYME. Is there anybody out there to assist me before it is too late? Thanks for taking time for me and HER!”
The responses Anne received were overwhelming. Lyme Net members had kind words for both Anne and her daughter. Their personal experiences with infectious disease specialists, neurologists and other physicians over the years taught them that the medical community all too often overlooks or rejects the possibility of Lyme and they warned Anne not to give up.
The volunteers at Lyme Net suggested that she learn all she could about Lyme and tick borne diseases and provided her with literature and medical abstracts. They also suggested Nicole see the world’s leading tick borne disease pediatrician who has treated thousands of children, Dr. Charles R. Jones in Connecticut.
Anne made one last ditch effort to get her daughter help at the hospital in Maryland. Once she learned more about Lyme and tick borne diseases she approached the doctors again with her new found knowledge.
Returning home disappointed, she told the online group, “The Dr. I saw at the hospital was horrible! He told me my daughter positively does not have Lyme before he even looked at her! He guaranteed that Lyme is rare. When his assistant came in I mentioned running the Babesia and Ehrichlia tests. They looked at each other and didn't even know what I was talking about.”
Anne took her daughter out of the hospital and went straight to Dr. Jones office in Connecticut. The trip paid off. After nearly three hours of examining Nicole, Dr. Jones suspected it was Lyme disease that was causing the problems. He tested her for other tick borne infections while she was there and ruled out other possibilities.
Totally exhausted from the trip, Anne returned home and posted this message to her new friends who were waiting to hear the news, “It was the longest ride up and back with a child that is that miserable and sullen.” She went on to say, “I thank everybody out there. I couldn't have done any of this without you all! My love and thanks to all!”
As it turned out, Nicole actually had three tick borne diseases- Lyme, Bartonella and Babesiosis. When the test results came in, Anne posted:
“Dr. Jones, I love him! He is so sweet. The results show that she does have Lyme, is positive to the HLA-DR4, which means she will have the symptoms worse, and she does not have Ehrichlia but does have Babesia and Bartonella. He (Dr. Jones) is the sweetest, dearest man, and smart. He takes his time, you don't feel rushed. I just can't say enough good stuff about him. He also told me to tell Nicole AGAIN that she IS "fixable"!!!!”
Nicole immediately started treatment for the multiple infections. With Dr. Jones skillful guidance and a mothers love and determination Nicole began to improve.
It has been a rough road to recovery with expected ups and downs but this beautiful young lady is now back in school and is smiling once again. She was recently voted student of the month and is on the honor roll. Anne wants others to know they are not alone in the fight to get diagnosed and treated for Lyme and other tick borne diseases. She recently shared some of her feelings:
“I want everyone to know that I was pretty much on my own except for the Lyme friends I made and the Lyme doctors who stood by me. My family found it very hard to support me because when two of the worlds leading hospitals insist she doesn’t have Lyme, how can you not believe them? My instincts told me different. I believe a mother knows her child and knows what is best for them.
Doctors need to be more open minded and listen to parents. They judged me so wrong, I only wanted the best for Nicole and now she is on her way to recovery. I am so thankful for the out of state doctors and the few doctors here in Maryland that believed in me and followed through. I thank everyone who has helped and supported me and been there when I needed help.
My message to anyone with chronic Lyme is don't ever give up! It may take a long time but never never give up. There is hope for everyone, you just have to find the right doctors. And a special thanks to all the doctors out of state that put up with my persistence. I drove them crazy. I don't know how they stuck with me, but I thank God they did.”
By Lucy Barnes