A Little Girl’s Rocky Road to Recovery
Lucy Barnes
Nicole's Story
Nicole was nine years old when the nightmare began. Although her precious life was slipping away, numerous 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 of Maryland. Although she had multiple Lyme symptoms and a positive blood test for Lyme, doctors refused to explore tick borne diseases as the cause of her deteriorating condition and refused to treat her for the infections.
They emphatically stated it was NOT Lyme disease causing her symptoms and went so far as to order electric shock treatments when heavy doses of several drugs did not produce the results they desired. This is Nicole’s story.
Approximately six years ago, young Nicole began complaining about flu like symptoms after a tick was removed from her ear. Many doctors visits, endless tests, and thousands of dollars in medical expenses provided no explanation for the cause of Nicole’s illness and no relief.
The little girl suffered with severe headaches, sore throats, fevers, stomach aches, fatigue, eye pain, and ringing in her ears. She was constantly dizzy and unbalanced. Her pediatrician in Maryland eventually dismissed her multiple complaints and determined the child’s problems were “all in her head”.
Unable to get a doctor who would listen, 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 friends.
She was too sick to attend school, became extremely depressed, developed anxiety problems, and was unable to eat. Another Maryland doctor who followed Nicole for over a year eventually diagnosed her with “school phobia”. He insisted Nicole was just malingering and that she “return to school and get over it”.
Frustrated by the doctors attitudes, Anne requested her daughter be admitted to a well known hospital for answers. After twelve hours of waiting in the lobby and arguing with insurance companies, Nicole 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. After an evaluation by several doctors, it was determined she was simply “depressed”.
Instead of seeing improvement, Nicole continued to decline mentally and physically during the six weeks in the hospital. She began hallucinating and was bruised from falling out of her bed at night.
Her mother was repeatedly told by the “specialists” that Nicole couldn’t possibly have Lyme disease because she didn’t have the “typical rash” or any “swollen joints”. To explain the little girls worsening physical condition she was given an additional diagnosis of chronic fatigue syndrome. Unwilling to accept her child had CFS, Anne began researching her child’s symptoms.
Lyme Net, an Internet support group with over 3,000 members was contacted. Anne posted a brief history and pleaded with members for assistance. “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!”
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 tick borne diseases as the cause of ongoing symptoms.
They encouraged Anne to not give up. They told her to learn all she could about tick borne diseases and provided her with medical abstracts to share with the doctors. They also suggested she make an appointment with Dr. Charles Ray Jones, a world’s leading tick borne disease specialist who has successfully treated thousands of children.
Anne once again approached the Maryland physicians and hospitals to request tick borne disease testing for her daughter. Consults with leading Infectious Disease doctors proved unsuccessful.
Anne reported to the 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.”
Concerned for her daughters life, Anne immediately took her daughter from the hospital and drove her to Dr. Jones office in Connecticut. After nearly three hours of examining the frail little girl, Dr. Jones tested her for several tick borne infections and systematically ruled out other possibilities.
Once back in Maryland, Anne posted to her new friends, “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!”
Nicole tested positive for three different tick borne diseases- Lyme, Bartonella, and Babesiosis. The worlds’s leading so -called specialists had been wrong. Dead wrong. It nearly cost a young girl her life. It also delayed treatment, causing the infections to become chronic and severely debilitating.
Anne was relieved to finally know what was causing her child to deteriorate and what was needed to help her gain back some of her previous health.
After their visit to Connecticut she wrote, “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 began treatment for the multiple infections. With Dr. Jones skillful guidance and a mothers love and determination, Nicole began to improve. The little girl is now a beautiful young lady. She has recovered to the point that she could finally return to school. She was recently voted student of the month and is once again 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... 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.”
Lucy Barnes