|Life hasn't been easy for the Holbrook family from Long Island, New York. At the prime of their lives, both Jennifer and Brad Holbrook were struck with crippling cases of Lyme disease. Jennifer was initially diagnosed with Chronic Fatigue Syndrome (CFS) and Fibromyalgia. Her symptoms gradually progressed from profound fatigue to crippling arthritis, joint pain, swelling, and unrelenting neuropathy. After years of trying to eat healthy, weight training, karate classes, and cycling, Jennifer's body gave up on her, and she became bedridden. Her "syndrome" forced Jennifer into a wheelchair and she reluctantly had to go on both Social Security Disability and Supplemental Security Income in her early twenties.
During this horrible time, Jennifer's physicians discovered that she also had endometriosis. Endometriosis results when normal uterine tissue grows outside the boundaries of the female reproductive system and causes pelvic pain, heavy bleeding, and internal scarring. In Jennifer's case, the severity of her endometriosis, and resulting inflammation, caused scar tissue formation, likely making her infertile.
The news that her fertility was in jeopardy dashed all her hopes of ever getting well enough, fast enough, to have children. With her dream of having children seemingly shattered and her painful symptoms intensifying, Jennifer began to question her diagnosis, wondering if her severe neurological symptoms could truly be caused by a "fatigue" syndrome.
When her boyfriend Brad also became ill, they didn't know what to do, or where to turn for help. Brad's symptoms started with a "mystery illness" so severe that he was hospitalized for a week because his tonsils wouldn't stop bleeding. Brad became jaundiced, and increasingly weak. His diagnosis was guessed to be mononucleosis, despite a negative mono test result. His ongoing and progressing symptoms included fatigue, nerve pain and weakness from his neck to his hands, chemical and EMS (electromagnetic sensitivity) along with typical flu-like symptoms. Brad was eventually also diagnosed as having CFS and Fibromyalgia.
Forced to rely on family and small disability payments due to their young age, they sought out CFS "experts." Together they tried many treatments only to end up with empty prescription and supplement bottles. The alternative "immune boosting" therapies prescribed to treat their combined CFS resulted in some minor and temporary improvements in energy. Unfortunately, what the "CFS experts" gave them turned out to be empty wallets and shrunken hopes.
After trying an experimental treatment for CFS that involved six months of antibiotics, which made her feel better, Jennifer started investigating Lyme disease as a potential cause of her illness. Jennifer remembered back ten years earlier to a tick bite she had gotten while camping. As Jennifer began to feel dramatically better on antibiotics, she began to connect the dots, and the chronology of her symptoms, matching up the sequence of events to tick bites.
After researching the symptoms of Lyme disease online, Jennifer made some astounding discoveries. Both Jennifer and Brad's symptoms matched Lyme disease to a tee. They arranged appointments with a top Lyme literate physician. During their appointments, Lyme disease was confirmed to be the cause of both Jennifer and Brad's CFS and Fibromyalgia. It all made sense. They lived in a highly tick infested area on Long Island, New York. Brad, not remembering being bitten by a tick, believed he likely contracted his Lyme disease sexually from Jennifer.
Both of them underwent aggressive Lyme disease treatment protocols for Lyme disease and the co-infections bartonella, babesia, and Ehrlichiosis. Thanks to a brilliant Lyme doctor, both of them showed symptom improvement right away. However, they knew from reading about Lyme treatment that a long road of treatment and recovery lay ahead.
Jennifer and Brad's relationship actually grew stronger under the adversity they faced. Jennifer slowly turned inward and found a peace and spirituality that helped her heal and bravely fight for her right to a normal healthy life. Motivated by the hope of their new diagnosis and the hope of improvement in their lives, Jennifer and Brad were married and began dreaming about having a child. Jennifer knew that it might be too late to have a child. She might be infertile from the endometriosis.
Determined to have a child, Jennifer underwent a third abdominal laparoscopic surgery to clear out scar tissue blocking her fallopian tubes. Facing the difficult surgery, her doctor told her not to get her hopes up. One of Jennifer's fallopian tubes was already destroyed by the endometriosis. Her only chance at fertility was if her other fallopian tube could be saved.
The operation was successful, and her surgeon removed a massive amount of scar tissue and adhesions from her left fallopian tube. After her surgery, her surgeon explained to her that her left fallopian tube "should work for a little while" and to hurry up and try to conceive right away, or else it might never happen.
Still on disability, and worried about passing Lyme disease to a child, Jennifer and Brad wondered what the right decision was. After months of antibiotic treatment together before the surgery, they decided to try to fulfill their dream of becoming parents. After all they both had been through with Lyme disease, they hoped and prayed that they would be able to conceive and have a healthy Lyme-free baby.
Jennifer and Brad got the green light from their LLMD to try to get pregnant. Because she was infected with Lyme disease, Jennifer would have to commit to aggressive antibiotic treatment throughout her pregnancy. She would have to undergo repeated blood testing to measure the antibiotic levels in her blood to keep her baby safe. Jennifer prepared her body for pregnancy with a strong prenatal vitamin regimen as well as educating herself about various prenatal problems and birth issues she might have due to Lyme disease. Nervous, yet excited, Jennifer and Brad began trying to conceive.
On Mother's Day 2004, Jennifer and Brad found out that despite all the odds stacked against them, they were pregnant! Their dream was starting to unfold and the excitement and blessings of parenthood were now becoming a reality. The happy couple celebrated and thanked God for answering their prayers.
After a visit with her LLMD, it was determined that Jennifer was "high risk" and recommended that she get monthly sonograms to make sure the baby was developing normally. The Holbrooks were thrilled to see their dream coming true. Seeing their baby so often while in the womb cemented the parent/child bond quickly, and they discovered they were expecting a baby girl. Jennifer took her antibiotics every 6 hours, day and night, to keep her baby safe and keep her antibiotic blood levels high enough to protect the baby. Higher and higher doses didn't seem to be making the tests change very much. Unable to tolerate Bicillin® shots from past experience, she tried to share her LLMD's confidence that everything would be okay.
Unfortunately, Jennifer's blood antibiotic levels were often too low, and she felt like she had a worsening of her Lyme symptoms during her last trimester. Jennifer was more nervous about the health of her unborn child than the anticipation of the actual birth. After much research, Jennifer decided on natural childbirth using no medication to reduce the risk of needing a C-section. Jennifer's pregnancy continued smoothly and the day after her due date, little Emily was born in January 2005. She was born a beautiful healthy 8 pound baby girl.
At birth, per her LLMD's instruction, Emily's cord blood and a part of the placenta were sent to IgeneX laboratory for Lyme testing.Emily was perfect, and her Mom and Dad took her home from the hospital a perfect precious miracle baby.
After two weeks of patiently waiting, Emily's Lyme disease tests all came back negative. Jennifer and Brad were thrilled and relieved that their miracle daughter was apparently "Lyme free" and could have a normal healthy life.
Although the tests were negative, the Holbrooks knew all too well from personal experience that tests were not 100% reliable and kept close watch on their new baby for signs of illness. They also decided not to vaccinate their daughter in case her immune system needed its full strength to fight gestational Lyme disease. Jennifer had suffered horribly after a vaccine in her past before she knew she had Lyme disease and didn't want the same thing for her daughter.
Very soon after Emily's birth, Jennifer's Lyme relapsed and she experienced nightmarish PPD (Post Partum Depression) with anxiety, which is quite common in Lyme patients. The hormone surges that accompany pregnancy and birth bottom out after the baby is born and can suddenly cause a relapse of all Lyme disease symptoms, as was the case with Jennifer.
The feeling of unfairness was overwhelming for her. To have a new baby and not be able to feel the love anymore was a nightmare. Despite having Brad home, they both struggled to care for their newborn that didn't seem to sleep or eat much. They had expected it to be difficult, but with Jennifer barely functioning, Brad had to become "super Dad".
Emily's first year seemed normal except for some apparent food allergies. Jennifer and Brad worked hard every day to find a balance between recovering from Lyme disease and caring for their baby girl. She was a joy that they had never imagined they would experience. At approximately 18 months of age, Jennifer began to notice that something wasn't quite right with Emily. Jennifer remembers telling her mother "Emily doesn't really look at me." Jennifer dismissed many of her own concerns because she was a first time mom and assumed it was just Emily's personality or her own hyper-vigilance due to the Lyme.
Before the age of two, Emily was having almost continuous emotional meltdowns. Jennifer explains these as "…temper tantrums times 1,000. Her speech didn't really seem to be developing very well and she was even losing words."
Jennifer and Brad took Emily for speech evaluations and a host of other tests. Emily was found to have Sensory Integration Disorder, hypotonia, and speech delay. At the age of 2 years old, Emily was then additionally diagnosed as having (PDD-NOS) Pervasive Developmental Disorder, Not Otherwise Specified by a developmental pediatrician. In other words, Emily was autistic.
Jennifer and Brad were devastated. Like many other Lyme patients, Jennifer had learned to research everything medical because it seemed that most doctors just didn't know what they were doing. By the time Emily had been diagnosed as autistic, Jennifer had already stumbled upon the possibility of autism, had researched it and then dreaded confirmation of her suspicions. The sensory overload, the tantrums, the food sensitivities, the lack of eye contact, the loss of language, the hyperactivity, the repetitive actions, the lack of play skills. It all fit perfectly.
The pediatrician who diagnosed her wasn't sure if, as she got older, she would eventually fit into the classic Autism diagnosis or move to a higher functioning diagnosis of Asperger's Disorder. She started to receive speech therapy, occupational therapy (to work on her Sensory Integration Disorder) and special education therapy to teach her how to play.
All Jennifer could think about was that she had done so much to ensure a healthy baby and now her baby had ended up with a developmental disability. It just seemed too unfair to be real. She mourned the daughter she had been hoping for and wondered whether gestational Lyme disease would have been a better fate. Looking back, what she thought had just been Emily's personality was actually a disorder.
Emily refused to eat from a spoon when her parents tried to start solid foods and this continued as she got older. She had trouble with tasks that required using both hands. Emily had trouble using utensils and holding a sippy cup or bottle. She was extremely rigid with her foods because she had trouble with her oral motor skills. This made chewing difficult so she would mostly suck her food until she could swallow it. The sensory issues made everyday tasks monumental and Jennifer and Brad often felt they were walking on eggshells.
With the new diagnosis, and understanding of the suffering their daughter was enduring, their patience grew and their hearts wept. Jennifer and Brad began to wonder what had caused their daughter's Autism. Many parents blamed vaccinations but Emily was unvaccinated. Friends said infections or immune system problems may be to blame.
During her online research, Jennifer stumbled upon information linking Lyme disease and autism. Maybe Emily had Lyme disease after all? She could be autistic, have Lyme disease, or worse, both! Frustrated with the uncertainty, Emily's parents knew they had to see Dr. Charles Ray Jones, the world's best Lyme literate pediatrician.
Dr. Jones was a true miracle. He carefully and thoroughly evaluated Emily and gave her a full blood workup. Emily's blood was sent to IgeneX to be tested again for Lyme disease. Jennifer checked the mail nervously as she waited for the test results trying to remind herself that no matter what the results were they wouldn't tell the whole story.
Finally, Jennifer had the results in her hand and, to her horror, saw Lyme specific positive bands on the western blot but this time it was her precious daughter's test, not hers. The mix of emotions was both confusing and overwhelming. Should they be relieved? Jennifer knew Lyme wasn't an easy fix. Did this mean that Emily did not really have autism, or just that they were one of the few parents who knew the cause? Did this change anything? Emily's Western Blot came back suggestive of Lyme disease infection and her clinical picture definitely fit with gestational Lyme infection.
Dr. Jones confirmed that she had Lyme disease induced Autism. So, the cause was found, and it was Lyme disease all along. When Jennifer's antibiotic blood levels dropped low during her pregnancy, it could have been enough to allow Emily to contract Lyme disease in Jennifer's womb. Dr. Jones assured the Holbrooks that Emily's prognosis was good because she was so young.
Jennifer and Brad were deeply upset that despite all their aggressive Lyme treatments during pregnancy, their baby still had acquired Lyme disease. Saddened with the frightening truth, they knew that they had to gather their strength and do everything possible to help their daughter.
Emily started antibiotic treatment for gestational Lyme disease and Bartonella infection. It wasn't going to be easy to care for a child with Lyme induced autism, but if anybody had the experience, patience and the heart, it was Jennifer and Brad. To help Emily, Jennifer educated herself enthusiastically about Autism and treatments she could use to help Emily become as functional a child as possible. During this time, Brad's health improved to the point that he was able to return to work fulltime.
Jennifer was working hard at home to organize therapist visits, a new gluten-free, casein-free diet and continuing with her daughter's "homework" from the therapists. Jennifer and Brad worked very hard to help her communicate using sign language, picture cards and to help her feel better so her negative behaviors would lessen.
Over time, as Emily continued her Lyme antibiotics and her Autism therapies, things slowly began to look brighter. Thanks to the expertise of Dr. Jones, Emily's health has improved dramatically. Emily's language, social skills and play skills have bloomed and she now seems just like any other loving, playful and active three year old girl.
Jennifer explains "Lyme disease and Autism are a menace to our world and I will continue to try to help educate others so doctors will pay more attention to Lyme disease and hopefully consider all treatment options available, particularly the possibility of Lyme-induced Autism and the damaging effects of vaccinations."
Jennifer and Brad continue to require treatment for their Lyme disease in order to function in their daily lives. Life is a balance of caring for themselves and their miracle daughter. The future looks bright. One thing is for sure; today the Holbrook house is full of love and laughter, a miracle that one day seemed impossible.