Jackie had always led a very active life. She made time for running, Yoga and gardening, and maintained the busy life of a mom and business owner. She’d experienced three fairly normal pregnancies and successful births as well. There were no “red flags” to speak of. Later, she discovered that her “healthy” immune system had actually worked to her disadvantage, disguising a disease that had unknowingly intensified through the years. Because her immune system was in overdrive, she had successfully kept the symptoms at bay.
Shortly after Luke was born, she began having fairly frequent bouts of what she identified as the flu, resulting in two to three days of severe “earth pulling” fatigue. Up and about, living life, she would suddenly have the intense need to sleep, up to 20 hours a day. Trying her hardest to awaken and attend to the needs of her family, she’d end up struggling back to bed. Over the years, Jackie and Mark came to the conclusion that these bouts were definitely more than the flu. The episodes intensified, originally occurring every six months or so, eventually increasing to every 2-3 months. She began calling it her “sleeping sickness”. She communicated this, along with her symptoms, to her physician for the next ten years, but no one was familiar with this type of condition. Jackie had regular blood tests and additional testing, the results always coming back “normal” and she attributed it to being the mother of four boys and leading a very full life. But in the back of her mind, she knew something wasn’t right and decided to consult an array of naturopathic doctors, seeking some answers. She was worried, but kept it to herself and carried on, maintaining an energetic lifestyle in between her sleeping sickness episodes. When the sickness took over, however, she became less interested in the career she once loved, feeling overwhelmed and unable to juggle all that she once managed. She would intimate to Mark that it was hard for her to “think”, that her brain felt like it was being “squeezed.”
During the summer of 2007, she could no longer dismiss the overwhelming, increasingly fatigue. She noticed a difference while running, and she would be exhausted by day’s end, regularly in bed by 9:00, joking to friends that she had a “bedtime”. She could no longer keep up with her social life- evenings with friends, weekly date nights with Mark, and entertaining at her home (which she so loved to do). It all ceased…she was simply too tired.
In September of 2007, Jackie experienced a sleeping sickness, two weeks in duration (her longest episode ever). This episode carried a new symptom: numbness in her extremities. The persistent and unrelenting numbness would start at her ankles, alternating, back and forth, throughout her hands, wrists, legs and feet. Jackie was passed from specialist to specialist, including a neurologist, rheumatologist, and endocrinologist. After extensive testing, all were unable to give her a diagnosis. (On average, a lyme patient sees 5 doctors over a 2 year span before being accurately diagnosed). Additional symptoms began to emerge: severe tooth decay for no apparent reason, sores turning to scabs on her scalp, and shooting electric pains in her legs, so severe that on one occasion she had to be taken to the emergency room. The numbness in her extremities turned to squeezing-like pain and spread to her buttocks and quadriceps.
In January of 2008, Jackie caught a lingering cold and was prescribed antibiotics, slipping into a sleeping sickness that never subsided. She felt so awful, her symptoms so overwhelming, she was convinced that she was dying. She’d received no answers and had no one to turn to. The doctors in Bellingham referred her to the Chronic Fatigue center at the University of Washington, even though they were doubtful of the diagnosis. Doctors there were able to rule out Chronic Fatigue, but, by this point, feeling like she’d exhausted all her options, facing a six month waiting period until her next appointment, she decided to try her own avenue. After a search on Google, she found a MD in Seattle specializing in autoimmune disorders and chronic illness/fatigue. Following an initial 20 minute phone interview and a list of questions, given to her by the office manager, Jackie was astounded to hear her say: “I think you have Lyme disease.”
Jackie was skeptical and could not imagine that after years of being ill, an office manager/nurse could make such an assumption and produce a diagnosis over the phone. Like so many of us, Jackie had never heard of Lyme disease, but in the days that followed, she and Mark began their investigation in to this unpredictable, complicated illness. They discovered that Lyme disease is caused by the bite from an infected tick. Jackie recalls coming in to contact with ticks at only time in her life, and subsequently developing, what is referred to, as a “bulls eye rash” (50% of those infected DO NOT develop a rash). She and Mark, newly married, pre-children, along with their dog Copper, had gone camping in the Salmon La Sac area, located on the west side of the upper Cascade Mountain range, off Interstate 90, in Washington State. Upon their return home, they noticed that Copper had several ticks imbedded in her skin and Mark proceeded to pick them off with a pair of tweezers. Reflecting back on the incident, they believe the ticks (whose babies are the size of a poppy seed) could have infested their home by jumping off their dog and laying their eggs. Jackie believes this encounter must have been when she became infected. A week or so afterwards, she remembers maybe developing flu-like symptoms, common in infected individuals, but she carried on as usual, not familiar with the signs or symptoms of Lyme disease. Without immediate treatment, a standard 2 week course of antibiotics, the bacteria can cause debilitating symptoms, becoming extremely difficult to treat. For a basic review of the facts and myths about Lyme disease, go to http://www.ilads.org/lyme_disease/about_lyme.html.
Lyme disease is the fastest growing vector borne illness in the world, prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient’s county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel.
One week later Jackie was in the doctor’s Seattle office. Clinical observation was clear to this well-known physician and his diagnosis was that Jackie had most likely been infected with the Lyme bacteria and perhaps some of it’s co-infections. A few weeks later, after a sensitive and specific blood test, called the Western Blot study (a specific test, unlike the ELSA, that looks for antibodies in the blood- see http://en.wikipedia.org/wiki/Western_blot), she was formally diagnosed with Lyme disease, Ehrlichiosis (ehrlichia: http://en.wikipedia.org/wiki/Ehrlichiosis_http://) and Bartonella (http://en.wikipedia.org/wiki/Bartonella). These co-infections can actually be more difficult to treat than Lyme, resulting in a combination of devastating symptoms, each having different stages of reproduction, different forms and requiring a multitude of antibiotics.
At the time of her diagnosis, the family was thrilled… finally an answer! Jackie would be on her way, back to enjoying her life. They had no idea that she was just beginning her journey, nor did they imagine what was to transpire during the next two years. Jackie’s illness is known as late stage, neurological Lyme disease. She has had to endure over two years of treatment, seeing little or no improvement. Apparently, Jackie’s ability to handle antibiotics is limited (Researchers think some individuals have a DNA related “glitch” that interferes with the body to effectively process the medication), having actually created a flare of symptoms as the bacteria “die-off” in her system, and resulting in her body having a difficult time handling the enormous amount of toxins left to process. This is known as a Herxheimer reaction: http://en.wikipedia.org/wiki/Herxheimer_reaction.
Throughout this time, the boys and Mark were doing their best without the constant presence of a healthy mother and wife. When first diagnosed, Jackie immediately thought of Luke, understanding that Lyme, like other forms of bacteria, can pass through the placenta wall and breast milk. Luke had consistently complained of headaches and stomach aches during his short lifetime. He was having difficulty concentrating in school, acting crabby and had generally not been feeling well for some time. In hindsight, it was obvious, and Jackie’s instincts were proven correct. Much to her and Mark’s horror, Luke was tested and proven positive. Shortly thereafter, the three remaining boys were diagnosed with Lyme disease.
The boys were immediately treated by the same Seattle specialist as Jackie and started on a regime similar: antibiotics, several naturopathic/homeopathic supplements, probiotics and immune support. The boys did well on the antibiotics, not exhibiting any real change but keeping pretty much status quo. Besides Luke, the other boys did not display many physical symptoms, although, reflecting back, there may have shown several cognitive/ neurological issues. At this point, Jackie and Mark thought they were in preventative-mode, keeping the illness at bay, keeping the boys’ immune systems strong. They were wary of the infection’s multitude of symptoms and it’s ability to “blow up” or progress.
After working with the family for two years, the specialist in Seattle decided their cases were too formidable and complicated to remain in his care and he referred them to one of a handful of leading pediatric Lyme specialists in the world. This spring Jackie, Colin and Luke (the three hit the hardest at this point) flew to San Francisco to meet with Dr. Steven Harris. Dr. Harris has hope for this family, in short, claiming “We’ve got a lot of work to do.” Dr. Harris will now be caring and treating Jackie and her family, long distance. They will be taking many necessary trips back and forth to San Francisco in order to get back to wellness. The process could take years. It is the family’s mission in life is to get everyone back to the quality of life they once knew. It is a full-time job for both Mark and Jackie but one they have accepted and will fight for, until it proves a reality.
A glimpse into their daily lives: Mark is working from home, running their business. He has taken over the majority of “mom” duties which limits his time at work. Needless to say he is more than overwhelmed. The family employs a nanny in the morning hours to help administer the boy’s meds, keep the house tidy, run errands, get the kids that are able to make it, off to school….she is a God send and she has helped to lift their burden.
Jackie’s overwhelming fatigue and pain keep her bedridden most of the day, evenings being a bit more functional for the family. When she is up, Jackie tends to the needs of her sick children, making appointments, organizing hundreds of medications and schedules for the five of them, trying to keep up with what seems to be a never-ending list of “to do’s”. Her limited energy is spent mothering four children who are dealing with the physical and emotional demands and disappointments placed upon them, that accompany Lyme disease, and of which, Jackie is very familiar.
Luke’s symptoms began as mostly cognitive, and physically manageable, but after contracting the swine flu in October 2009, he has become completely stricken by the disease. (A physical or emotional trauma is very often the trigger for Lyme, encouraging it’s spread throughout the body). Luke suffers from extreme headaches, fatigue, numbness, severe leg pain, electrical shooting pains (very intense and shocking in nature), and constant stomach aches. His symptoms are relentless. Rarely does Luke have a “good” day. He has missed most of his 4th grade year of school thus far. He attempts an hour a day when he feels well enough and he’s proud of himself when he does. His time at school is difficult, due to his “sound-sensitivity overload”, yet another, of his many symptoms. On the days he can’t make it to school, both he and Colin have a tutor who comes to the house. His neurological system is taxed; it is difficult for him to read a single page in a book. It will be a long time before Luke catches up to his peers at school. He has also missed out on his gymnastics (advanced student of 3 years), soccer, basketball, baseball, and his joy of running (just like dad). All of which are very difficult on his self-esteem. Combined with feeling sick everyday, it is just plain tough on him.
Colin a sixth grader. As of late, he has missed out on the second half of his first year of middle school. He, too, caught a regular cold, which “tripped” his immune system. The physical Lyme symptoms hit him immediately and hit him hard. His symptoms, to name a few, are: severe headaches (migraine in intensity), eye pressure/pain, muscle weakness and pain, brain-fog, and continued cognitive/ neurological issues (feeling like he has “holes in his brain”). His fatigue leaves him housebound and bored. He experiences a lot of anxiety due to his missing school. He LOVED being there, with his friends and all the new experiences middle school has to offer. As a pre-teen, he has been hit the hardest emotionally, feeling awkward, due to his pronounced absences and erratic attendance. Colin loves basketball and baseball, and is obviously disappointed to be missing out, not able to play alongside his teammates. He prays daily to return back to the healthy young man he was.
Joe and Zach, the twins, have begun to share the same debilitating symptoms as their older brothers these past couple months. Joe contracted the flu at the same time as Colin, tripping his immune system, which was actually fighting the Lyme on it’s own. Zach became ill once he started his antibiotic treatment. The medication prescribed to them actually brings out the bacteria from the body’s tissues and organs, drawing it into the blood stream, causing an increase in symptoms and eventually, “die-off”. Both natural athletes, Joe and Zach have slowly had to decrease their much-loved sports activities in order to take a break and focus on getting well. Initially, they were missing school once a week or showing up a little later in the morning. In the last few weeks, however, their attendance has been spotty. The two study at home when they feel well enough, trying to stay caught up. Both are on high doses of antibiotics and a regime which helps support their immune systems and curbs the antibiotic’s side effects. Zach and Joe were born good natured. They are loving boys and thus far have been able to keep in fairly good spirits, regardless of the situation. They, much to Jackie’s dismay, have only a few memories of their mom being well: playing baseball and soccer in the yard with them, being at preschool and kindergarten as a volunteer. They talk of it often and are probably the most worried about their mom.
It has been a long, grueling journey. The daily medical regime is overwhelming and times 5! Everyone is suffering- Jackie, the boys, and Mark in the sole care-giver/provider role. More than anything the Loreen family needs your prayers, unceasing, to nurse them back to health. Please follow their story, educate yourself and your community about Lyme disease, learn how to prevent it’s rapid spread, and pray for those suffering with this terrible illness.
The family wants to thank their friends who have so graciously helped them. Your kindness and giving are so appreciated. Words cannot express their gratitude.
Written by Anne Salley, friend of 30 years!
