|Several years ago, Allie Brinks was a dramatically different person than the one she is today. Locked up in a psychiatric ward, against her will, Allies world had fallen completely apart. Cut off from her family and friends, and abandoned by the healthcare system, Allie Brinks was simply known as patient number 962 at the local psychiatric hospital.
Allie was a vibrant redhead, who loved her job as a wedding photographer. A single mother to Alan, her 4 year old son, Allie was a dynamo, always multi-tasking and a real go-getter. She ran her own photography business from her home, doing all her own printmaking and spending many late nights bringing images to life in her darkroom studio. Allie’s life was pretty normal and comfortable back then. Unfortunately, thanks to a tiny tick, her life did not stay normal and comfortable much longer.
The word summer usually garners up dreamy images of fun in the sun. We often think of green grass, lying in the sand at the beach, barbeques with friends and family, and sipping lemonade under a backyard tree. Allie used to feel that way about summertime, but now, she has far different feelings and images about summer. “I really fear the warm weather now, because I know the ticks are everywhere.” Allie remarks.
Allie’s life took an alarming turn for the worse in the summer of 1999. A few days after photographing a wedding on a grassy lawn, Allie started feeling sick. She assumed she had the flu, and decided she better start sleeping more at night. The next day she awoke with a horrible sinus infection, stiff neck, fever, and what she described to me as “pain and tingling all over my body.”
Her family doctor prescribed a Z-pack which is 7 days of the macrolide antibiotic Zithromax®. Much to her relief, Allie’s sinus infection and fever went away in 4 days and she felt much better and went on with her busy life.
Everything seemed to be perfectly normal until the autumn leaves began to fall in October. Allie’s sinus infection returned, and with it, the aches and pains, fever and neck pain. She figured she had the flu again, one she figured she contracted from her young son or his play dates full of children’s germs. She grew tired, and irritable, moody and increasingly anxious.
She started sleeping all the time, and was eventually diagnosed with Chronic Fatigue Syndrome (CFS) and Fibromyalgia. She grew too exhausted to care for her little boy, so he had to go stay with his Aunt. Allie’s life was changing for the worse, as her body weakened. Looking back, Allie remembers the exact date of what she calls “the beginning of the end” of her life.
One evening while she was trying to fold laundry, Allie was suddenly struck with a migraine headache, and felt tingling sensations down her arms and legs. “It was scary,” Allie remarked as I interviewed her. “I never had a migraine in my life, and I felt numb all over my body. The light in the kitchen became so bright it shot right through me like a knife in my head.” Allie collapsed onto the floor in pain. From that night on, Allie’s life took an alarming turn for the worse.
Her best friend Cora drove her to the emergency room. When Allie arrived at the ER, she became mentally and emotionally unstable. Allie started screaming, throwing objects at the nurses, and was full of rage. She quickly went from having a migraine to becoming a raving lunatic.
Allie’s best friend Cora remembers the frightening transformation she witnessed that terrifying night. “I didn’t know what to do to help her. She was screaming and crying and throwing things. The doctor gave her some tranquilizers, and it made her even worse. She went from my sweet best friend, to a crazy person, seemingly overnight.” Cora explains. Allie then began threatening the hospital staff and smacking herself in the face. When the nurses tried to get an IV needle in Allie’s arm, she went ballistic. “She tried to strangle one of the nurses, and then she started choking herself with the IV tubing.” Cora remembered. “It was just awful, and they had to sedate her and put restraints on her arms and legs. The police came in and she had to have a guard by her bed.”
Allie was admitted to the mental health floor of the hospital against her will, as she was a danger to herself and those around her. Allie’s behavior problems became the focus of her diagnosis. The doctors diagnosed her as a manic depressive, along with bipolar and anxiety disorder. Allie was paranoid of the medical staff, delusional (she believed her son was dying of cancer when he was healthy), and she had visual hallucinations. In addition to her multiple psychiatric diagnosis, Allie also had severe pain in her head, behind her eyes, and light sensitivity. She had blurry vision, and slurred her speech.
Allie’s psychotic behavior continued to worsen. The doctors offered no explanation for her sudden change other than it could have been hereditary. Looking back, Allie remembers feeling very angry at everything and everyone, for no apparent reason. She remembers feeling very moody, irritable, and crying for no reason in the weeks leading up to her eventual breakdown. With the exception of Cora, Allie’s friends and family took her outbursts and verbal abuse personally, and abandoned her.
What Allie did not realize was that a deer tick had bitten her earlier that summer. Unnoticed, the tick had infected Allie with Lyme disease, babesiosis, and bartonella. What began as a sinus infection was really an onslaught of dangerous bacteria that slowly caused Allie’s devastating neurological condition. Lyme disease can cause neuropsychiatric illness, but psychiatrists are not routinely trained to diagnose and treat tick borne disease. Talk about a dangerous oversight!
Patients infected with Lyme and associated diseases can experience symptoms which include depression, memory loss, behavioral changes, rage (Lyme-rage), delirium, homicidal and suicidal thoughts. Lyme encephalitis (inflammation of the brain) can cause symptoms to develop including disorientation, panic attacks, confusion, irritability, and seizures.
Misdiagnosed and untreated for her tick borne diseases, Allie lay curled up in a fetal position on the floor of her locked room, crying in pain, and praying to God to let her die. Allie was medicated with Tegretol® to control her seizures. She was also given Klonopin® to control her rage and anxiety, and Prozac® for depression. Instead of antibiotics to treat her Lyme disease, Allie was forced to take Lithium, Phenobarbital, and Xanax® to treat her behavioral problems. Allie’s brain was full of a psychiatric drug cocktail to control her symptoms, not her illness.
Allie was locked up in the psychiatric hospital for over a year. Thanks to the mindnumbing cocktail of psychiatric drugs she was given, she remembers very little detail of her hospitalization. “It’s all a blur to me, I had no control over my own life, and I was like an animal in a cage. I couldn’t see my son, and I was called an un-fit mother because I was crazy and locked in the loony bin. I just wanted to die.” Allie remembers.
“I had pain all over my body, my muscles and joints were swollen, my skin felt like I had sunburn and I had tingling and numbness all over.” Allie continued. Despite her numerous physical examinations and her daily pain killers, the possibility of Lyme disease was never questioned. Instead, Allie was told her Fibromyalgia was flaring up, and that her psychosis was likely hereditary, even though nobody in her family was mentally ill.
Allie suffered needlessly for another 4 months before fate stepped in to help guide her towards the truth. Allie’s friend Cora got bit by a tick while gardening, and began researching Lyme disease online. The more she read, the more she realized that her best friend Allie may have the same thing! Cora contacted me at wildcondor.com, and I referred her to research articles explaining neuropsychiatric Lyme disease. After several long e-mail conversations with Cora, she had enough information to investigate Allie’s situation deeper.
Cora visited Allie at the psychiatric hospital and asked her if she ever had any tick bites. Allie remembered her sinus infection a year and a half earlier, when her health began to deteriorate. After talking with Cora, and researching the medical information, it seemed all too coincidental to Allie that this had all started after photographing a wedding on a rolling green lawn, in a tick infested area. “Everything just clicked…” Allie exclaimed. “…even with all the drugs in my system, I had a moment of lucidity and clearly connected the timing, and how I hadn’t felt healthy since then. I didn’t remember a tick bite, or a rash, but those ticks are so tiny, I could easily have never seen it.” Allie said. She also used to walk her dog in the fields behind her house, so she could have been bitten and never noticed the ticks.
Acting as her mentor and health advocate, Cora met with the head of the psychiatric hospital, and presented the clinical picture, along with the Lyme and associated diseases information. A neurologist was called in to examine Allie, and he agreed to perform a spinal tap (spinal taps miss over 80% of Lyme cases) to determine if Allie had Lyme disease. He also ordered an ELISA test (also an unreliable test), both of which were negative, so they told Allie that she did not have Lyme. (Negative test results do not mean the patient does not have active infection!) Convinced the neurologist and hospital staff was wrong, Allie remained determined to get herself out of there and get a second opinion.
After a long struggle, and a myriad of legal woes, Allie was downgraded to an outpatient of the psychiatric hospital, pending consultation with a prominent Lyme literate MD. Based on her clinical presentation, Allie’s Lyme doctor had little doubt that she had latestage neuroboreliosis. To help support her clinical diagnosis, Allie’s LLMD ordered a SPECT scan, a brain MRI, neuropsychiatric testing, and a bounty of blood work.
When the tests were completed, the results supported the clinical diagnosis fully. Allie was infected with Lyme disease, bartonella, babesiosis, and mycoplasma. She had hypoperfusion on her brain SPECT scan which correlated to the areas of her brain that were damaged by Lyme disease. Allie’s neuropsychiatric testing showed severe cognitive dysfunction. Allie needed aggressive antibiotic treatment, and her prognosis was hard to determine.
The link between Lyme disease and its effect on Allie’s brain was extremely complex in nature. The Lyme bacteria release poisonous neurotoxins into the brain of infected victims like Allie. The mixing of these toxins with brain chemicals caused her to become unstable. Some of her symptoms were extreme fatigue, crying spells, laughing fits, rages, depression, panic attacks, and dissociative episodes in which she was unaware of her actions.
Normally quiet and shy reserved persons have been known to go totally crazy, as Allie did, and become violent and hysterical. Most people (who are ignorant of the truth) describe Lyme disease patients as depressed because they are sick, as if they are bummed out and sad because they cannot do anything fun anymore. These people do not realize that the brain of a Lyme patient is being attacked, and the immune system is being damaged by a complex array of tick borne pathogens. Personality changes can be a direct result of chemical changes occurring in the brain, and warrant an intense treatment protocol.
Allie received both IV and oral antibiotic treatment for her Lyme disease. She was treated for babesia with Mepron®, Zithromax®, and the herb Artemisia. Allie experienced strong Herxheimer reactions in the beginning of her treatment, which decreased in severity and time went on. On treatment, Allie began to show signs of improvement almost immediately. Her panic attacks stopped abruptly, and her memory began to return. Allie gradually returned to herself again. Her joint swelling and pain disappeared. Her rages stopped, her mind felt clear and focused again. In time, Allie experienced a near full recovery thanks to the determination of her LLMD and her best friend’s support.
It took 3 long years of treatment for Allie to regain her health, and return to work. She was reunited with her son Alan, and has since gotten married and is currently doing very well. Allie’s story has a happy ending. Unfortunately, many other victims, just like Allie are at this moment locked up in a psychiatric hospital, or suffering psychiatric symptoms with no escape or relief. Many of these patients could possibly be infected with tick borne illness, and are being misdiagnosed and untreated. Psychiatrists should be trained to recognize the signs and complex symptoms of tick borne illnesses, especially in tick infested areas.
My thoughts were filled with darkness, and now they are filled with hope.” Allie reflects.” Something went terribly wrong that summer. I turned into somebody else, somebody I hope I never have to be again. The doctors should have been, and should be educated about what ticks can do to our brains. If Cora had not been bitten, researched Lyme, and gotten me out of there, who knows what would have happened to me and my son. The thought is too awful to imagine. I'm just thankful now for each day I have.
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