Jill Justiss and two of her children have been making their way back from years of devastating chronic illness through hard work, personal research and dogged perseverance.
They were the last family you would expect something like this to happen to. She and her husband Mike Stanley live with their three children Jake, Carter and Aaryn in Katy, a suburb of Houston, Texas.
At first glance, they would have seemed like a normal American family, two blonde young people and their three fair-haired children.
Jill had been living the normal life of many young mothers of two small children. At 31 years of age, she was very active and healthy. She hit the gym five or six days a week and would spend hours in the cycling room.
All that changed in 2002.
Instead of moving energetically through her day, Jill now found herself crawling up the stairs.
Jill’s Nightmare Begins
Jill and daughter Aaryn
"I felt as if all the energy had drained out of every muscle in my body. It was so extreme I was unable to hold my arm up long enough to blow-dry my hair, standing in the shower was painful and it felt like running a marathon to get through the grocery store," said Jill.
Several doctors put Jill through dozens of blood tests. They asked her about her husband, her children, and whether she had help at home, and gave her a prescription for antidepressants.
Jill took them for a few months but she didn't like how they made her feel, and they did nothing for her pain and intense muscle fatigue. She stopped taking them.
After about six months, Jill's energy began to return, but things didn't go back to normal. She was having shorter relapses of the muscle fatigue. A relapse could last for a few days, or up to several weeks.
When she'd have a setback she'd go to see her doctor. But these visits brought no relief and left her with an increasing sense of humiliation as the doctor continued to misdiagnose her and offered her only antidepressants.
She eventually had a relapse from which she did not recover.
"My symptoms continued to multiply until I was not only having pain in my joints, muscle fatigue and inflamed lymph nodes, but also twitching muscles, flu-like symptoms, burning skin, rashes, blurry vision, dizziness, vomiting, chemical sensitivity, chest pains, migraines, arthritis, numbness and pain and weakness in the back of my neck so severe that I had to support it with a pillow most of the time," Jill said.
CFS, EBV and Mycoplasma Bacteria
Jill in hat and scarf
A rheumatologist later helped bring her pain under control, but he could not uncover the cause for her symptoms. After a year, he told Jill he couldn't do any more for her than refer her to a specialist in chronic illnesses, including chronic fatigue syndrome.
Jill went to this specialist, who sent her for her first MRI, meant to rule out multiple sclerosis.
She was tested for several conditions, including Lyme disease. The test for Lyme came back negative but she discovered that she was positive for Epstein–Barr virus and a mycoplasma bacteria.
Her doctor told Jill that her symptoms and test results could indicate chronic fatigue syndrome. She put Jill on pain medication, glutathione injections, and antibiotics for the mycoplasma.
"I was thrilled to finally have a diagnosis but soon realized that this carried with it a stigma and there was little support from family and friends," Jill said. "I think CFS is difficult for people to understand. They hear the words chronic fatigue syndrome and think, ‘I am tired too.’ But it is so much more than that."
The routine that followed was miserable and taxing. Jill saw the doctor every three months for blood work. She was tested with a western blot for Lyme disease, but her results were always negative. Yet Jill was bothered by the fact that though she was taking antibiotics the numbers for her mycoplasma didn't get any better, and in fact they got worse.
Having some improvement while on the antibiotics made her wonder about the possibility of Lyme disease, and whether an undiagnosed infection was also being inadvertently treated.
Jill’s Sister Jennifer Gets Sick
Jill's identical twin Jennifer Justiss lived in Missouri City, another Houston suburb. She had started experiencing health problems that were similar to Jill's. Jill encouraged her to see her specialist.
When Jennifer went in, the doctor ordered blood work which included a western blot test for Lyme disease. Jennifer's results were positive for Lyme. This also convinced Jill that what she was dealing with was also Lyme, and that her negative test results had all been false negatives.
"What were the odds of my identical twin sister and I having the same symptoms, but a different disease? I thought they were slim," Jill said.
Lyme Disease and Other Tick-borne Infections
Nine years after Jill's first symptoms had appeared, she asked for a test from a private lab that specializes in tests for Lyme disease. Her results were positive.
She began seeing a specialist in tick-borne diseases whose office was a four-hour drive away. She was diagnosed with two other tick-borne infections.
Jill estimates that a year of treatment brought approximately 80 percent improvement, but she suspects that she may never be completely 100 percent cured because she went without proper treatment for such a long time.
Jill's Son Jake Gets Sick
Jake, Mike, Aaryn and Carter Stanley
At age five, Jill's first-born son Jake's behavior had changed dramatically overnight. He began to have angry meltdowns at school regularly. He had terrible difficulty adapting to changes in his life. He'd gone from being a boy who was generally happy to one was very depressed.
Jake's teachers suggested that Jill and Mike take him to Texas Children’s Hospital for evaluation, where he was diagnosed with Asperger's syndrome, an autism spectrum disorder.
"This was the beginning of the most difficult years of our life," Jill said. "Although we did everything we could to help him through social skills, behavioral therapy, special education and medication, it seemed he only got worse."
OCD, ADHD and Tourette's Syndrome
Jake was also diagnosed with obsessive-compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD).
When he was 10 years old, he experienced another dramatic change — once again overnight.
First he had what seemed like some kind of seizure, then tics began to appear. He started to stutter, his face began to twitch and he had arm tics that were quite noticeable. Holding a spoon, writing, or playing his games became difficult for the first time.
Jill and Mike took Jake to his psychiatrist again, where he was diagnosed as having Tourette's syndrome, and placed on psychiatric medication. They were told that he would have to be on this medication for the rest of his life.
Jill was not prepared to take this as the final word.
Jill Begins Her Own Research
Jill moving on up
"I never accepted this conclusion or my diagnosis of CFS," Jill said. "I read everything I could find."
In Jill's ongoing research of CFS, she found something written by Richard A. Van Konynenburg, Ph.D. on CFS and glutathione depletion. Van Konynenburg had uncovered what he said were similarities in the biochemistry of people with autism and people with CFS.
Jill felt renewed hope for her son.
She networked online, in forums and on Facebook, and accumulated information from other mothers that might be helpful. She discovered a doctor in Port Aransas who was having success in treating children with symptoms similar to her son's.
PANDAS and Sydenham’s Chorea
Jake Stanley is finally able to enjoy gluten
The doctor diagnosed Jake with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS). He thought that Jake's tics might have resulted from a case of Sydenham’s chorea when he was 10 years old.
Both PANDAS and Sydenham’s chorea are thought to be neurologic autoimmune diseases.
According to Susan Swedo, a researcher from the National Institute of Mental Health, “PANDAS can be thought of as ‘rheumatic fever’ of the brain, and just as Sydenham’s chorea gives you abnormal movements, PANDAS gives you abnormal thoughts and behaviors.”
Jake has been treated for PANDAS for the past five years, which has necessitated traveling for three and a half hours to the doctor, every two to three months.
It has been grueling, but it has paid off big-time. Jill said that Jake's doctors told her he is no longer diagnosed with ADHD, Asperger’s syndrome, OCD and Tourette’s syndrome.
He is in mainstream school. He needs no medications or other additional help, and is in the process of planning for college.
Jill's Daughter Aaryn Gets Sick
Aaryn in better times
When Aaryn was three years old, she became quite ill after being given a flu mist.
Symptoms of OCD appeared overnight. She no longer wanted to eat and had gastrointestinal difficulties. Her fatigue was such that Jill had to carry her around much of the time.
Her doctor diagnosed Aaryn as having mononucleosis and fifth disease (erythema infectiosum). Fifth disease is a viral infection resembling rubella and scarlet fever. Its odd name comes from the fact that it was fifth on the list of childhood rashes.
Aaryn’s fatigue lasted for about five months, but while that improved, the OCD and GI issues did not and intense anxiety began to emerge.
When Aarayn was about six years old, Jill took her to Jake's doctor where she was also diagnosed with PANDAS. Over these past four years, treatment has caused Aaryn's symptoms to improve greatly. A full recovery is hoped for and expected.
Being Sick with Two Sick Children
Jake and Aaryn
Before Jill became ill, she says she was always on the go. Her house was spotless and she made dinner every night for her family.
But when she became sick, all that stopped. With only a small amount of energy, Jill had to prioritize what was most important, and had to let everything else go.
She spent most of her worst days in bed to conserve enough energy for her kids when they came home from school. She sat in a chair and helped them with schoolwork, and dinner was as quick and simple as she could manage.
Jill had to learn to ask for help from her husband Mike and her children. She said that Mike was always there for her, taking over when she needed him to do so.
But learning to ask for help wasn't the only hard lesson.
"One of the most difficult things I have had to accept is that we will never be like other families. We have missed out on a lot due to illness,” Jill said. “Instead of going on vacations every year and having fun experiences together, we were always going to doctors and dealing with the challenges of new medications."
Life, for years, was filled with one crisis after another. Her sick son, Jake, looks back on unpleasant memories of misery at school, as Jill tried to convince the school that he was doing the best he could.
Jill's healthy son, Carter, missed out on so much, and was confused by the chaos of their lives from all the illness. Jill said that she felt horrible guilt over this as she was helpless to change it for Carter.
"As a family we were robbed of those 'Enjoy them while they’re young, it goes by so fast’ moments. Forever replaced by memories of pain and turmoil. Chronic illness can be very isolating, especially one that is very often misunderstood," Jill said.
Aaryn with flowers
It has been 14 years since their bleak odyssey began for this family. Jill, Jake and Aaryn have dealt with multiple severe health conditions for too many years. Their personal research, willingness to travel great distances for care, and their stubborn tenacity have led them all to better health.
There is a greater sense of normalcy to their lives, which has been hard-won. Jill and her family stubbornly persevered through a time marked by low stamina, debilitating symptoms and frightening glimpses of a grim future.
They wanted something more, something better. The odds were stacked against them but they went for it anyway. More power to them all.
Visit Jody's website at http://www.ncubator.ca
Understanding Fifth Disease -- the Basics. WebMD.com.
PANDAS Network. Pandasnetwork.org.
Moleculera Labs Is an Autoimmune Neurobiology Company. Moleculeralabs.com
International Lyme and Associated Diseases Society. ILADS.org.