Lyme disease has become epidemic in many area of the United States and other countries. While rigorous courses of antibiotics may eradicate Lyme organisms, patients are often left with significant impairments due to neuronal damage. Complementary Alternative Medicine (CAM) treatments that enhance neuronal repair by increasing cellular energy, neuroplasticity and antioxidant defense, are critical for recovery.
What is Lyme Disease?
Lyme disease is caused by a bacteria called Borrelia burgdorferi, which is carried by deer ticks. Infected ticks transmit this bacteria to humans and animals that they bite. When left untreated, the bacteria travels through the bloodstream to lodge in the body’s organs and tissues, creating serious and severe symptoms.
While ticks transmitting Lyme used to be confined to deer, they are now found on squirrels, birds and other small rodents. They appear to be spreading throughout this country and they are problematic in Europe.
A red bull’s eye rash is one of the earliest visible symptom, but this tell-tale rash only occurs in about 40% of cases. Along with it come other symptoms such as chill, fever, joint pain and fatigue —similar to a severe cold or flu. The course is highly variable. Some people get a swollen joint, usually a knee or an ankle. Others can have excruciating headaches, severe pain in muscles and tendons, heart damage, digestive disturbances, mental slowing, confusion, memory problems, loss of balance, mood swings, and more.
Early diagnosis is crucial to successful resolution of this disease. Standard medical treatment includes antibiotic care. If Lyme disease is recognized within a two days, then in most cases, a 3-week course of antibiotics is sufficient. However, any delay in diagnosis allows time for the organisms to multiply and may require weeks or months of continuous antibiotics. When the diagnosis is delayed for more than a few months, it can be very difficult to eradicate the organisms and may entail oral or intravenous antibiotic treatments in rounds for a year or more. While antibiotics may eradicate Lyme, they do not actually heal tissues. Complementary and Alternative treatments (CAM), mind-body practices, physical rehabilitation, and Neurotherapy offer methods to help heal and repair body and mind, for better recovery. Following prolonged or severe Lyme infections, many people never recover 100%. However, by pursuing a broader range of CAM treatments, many Lyme survivors significantly reduce their symptoms and increase their ability to work, fulfill their responsibilities, and enjoy their lives.
In the Lyme-Light II
Portraits of Illness and Healing
Emily Bracale is an artist who expressed her experiences as a survivor of severe Lyme Disease through her art work. Into the Lyme-Light II contains many of these intimate paintings that express the inner experience that many patients find hard to describe.
Read the introduction below, to this remarkable book by Dr. Patricia Gerbarg, who also survived neurolyme disease.
My first reactions to In the Lyme-Light were surprise, recognition, and gratitude. I was surprised by the eloquence of Emily’s visual images and the beauty in her description of the devastating effects of Lyme disease on her mind, body, and spirit. Those of us who have lived with Lyme disease, who have struggled to understand and express what we experience, recognize exactly what Emily portrays in words and colors. And with that recognition comes a sense of gratitude that someone has found a way to tell our story, to convey the many nuances of denying, resisting, hiding, self-doubting, trying, loving, learning, adapting, and eventually coping with a mysterious and widely misunderstood illness.
As a physician, my concerns about Lyme disease began as I saw the number of deer increase every year in our neighborhood. Like many families, we had a little dog, Rocky. Like many pets Rocky wore a pest repellent collar and still brought deer ticks into our house. Being a conscientious mother, I meticulously removed Rocky’s ticks and scoured the house for any that might have fallen off, never thinking that I might be the one to get bitten.
As with Emily, Lyme took its time creeping into my system causing a little soreness here, a little stiffness there and gradually over about five years, more and more pain, weakness, exhaustion, and mental clouding. Emily’s painting, “Rock Bottom,” says it all. When you are curled up in bed for hours waiting for the pain to stop, unable to think clearly, fighting off fears that you might never get your life back, fending off doubts that this could all be in your head, feeling guilty about being sick…you are just a rock at the bottom of an endless dark sea.
Although Lyme devastated my life during the last two years of my illness, I consider myself lucky because an infectious disease specialist finally diagnosed the condition based on a SPECT scan of my brain, that is a special scan that showed where the narrowing of blood vessels (from Lyme organisms invading the inner lining) was reducing blood flow to critical brain areas. After nine months of antibiotic treatment I began what is now about 15 years of post-Lyme gradual recovery. Although the antibiotics were necessary to eradicate the infection, they did not repair the damage it had done to the cells of my brain, muscles and tendons. Antibiotics did not stop the inflammatory process that is much quieter now, but that still smolders in my tendons and that is too easily evoked by any strenuous activity. Fortunately, my husband, Dr. Richard Brown, had developed considerable expertise in complementary treatments. One of the herbs he tried, Rhodiola rosea, restored my balance, memory, and other cognitive functions. Some of the medicinal compounds in the roots of this herb enhance cellular energy production and repair. Discovering the benefits of this herb was the genesis of my interest in complementary and alternative medicine. This led to an entirely new direction in my career and the many rewards of being able to heal people who could not respond to other treatments. With Rhodiola rosea, other supplements, and mind-body practices, I am still not able to do everything I used to do, but I can do anything that is really important for me, my family, and my work.
One of my favorite pictures is Emily’s “Pillows.” It reminded me of the nine pillows I used to need in order to sleep during the worst of times. It made me laugh and feel good about the fact that now I only need two.
When Lyme infection is recognized quickly, a three-week course of antibiotics is usually all that is needed. However, only about 40% of people bitten by ticks develop the tell-tale bull’s-eye rash and only about 70% show positive results on standard blood tests for Lyme. That leaves thousands who may not know they were bitten or whose cases were untreated due to false negative tests. Many of these people are at risk for developing long term complications including chronic pain, inflammation, fatigue, insomnia, cognitive slowing, memory loss, incoordination, loss of balance, brain damage, heart damage, paralysis of nerves, digestive problems, rashes, and more. Lyme disease is the Great Pretender. Since the microorganisms can invade any tissues anywhere in the body, the damage they cause can mimic many other illnesses. When a patient has odd symptoms that don’t fit into a standard pattern, doctors may assume that the problem is psychological.
Now that I have become a “Lyme literate” psychiatrist, many Lyme patients are sent to me because their medical doctors believe that their symptoms are psychosomatic, that is “all in the patient’s head.” Well, some of the symptoms may be in the patient’s head because that is one of the favorite locations for Lyme spirochetes. For example, an infectious disease doctor treated a college student with Lyme disease for one month with antibiotics. After stopping the antibiotics, the doctor sent this student to see me because he was having mood swings and acting strangely. A brain scan showed a long, thin cavity in the brain tissue in the right cerebral hemisphere. The other doctor thought it might have been caused by an unknown brain injury. However, there was no history of brain injury and the cavity was nowhere near any of the brain areas that are damaged during most kinds of head trauma. By reminding my colleague that infections in brain cavities are highly resistant to antibiotics, I was able to persuade him to resume and maintain the antibiotics. Within a week, the patient began to recover.
Two of the most essential ingredients for Lyme recovery are to develop a fighting spirit and a way to transform the experience, to make it part of your pattern of personal growth so that it enriches your life. As with anything that is an unwanted part of us, the more we avoid, deny, reject, and hate it, the more it drains our spirit. Seeing Lyme for what it is, accepting that it is an integral part of our existence, and using all of our awareness, insight, and creative energy to learn from it and to ultimately transform the experience and ourselves is the deeper message within this book. This is the “Letting Go,” the letting go of one’s natural fearful, defensive reaction to pain and suffering in order to explore the possibilities of creating an existence you never envisioned for yourself. By sharing her story, Emily the teacher leads us to the question, “Can we find a way through our disease to live a better life and nurture the spirit of love within ourselves and those who are dear to us?”
I hope that readers will share this book with as many people as possible, not only to heighten awareness and understanding for those who live with Lyme, but also because prevention is one of the best weapons we have in fighting what is currently a losing battle against the growing epidemic of Lyme. For example, in places where vigorous public education about Lyme prevention was implemented the number of new Lyme cases dropped by as much as 70%.
Medical debates, battles over insurance coverage for antibiotics, absence of serious public health initiatives, attacks on doctors who recognize and treat chronic Lyme, and lack of accurate tests and effective treatments all contribute to the private and public burden of this disease. Many Lyme patients are left with no doctor, no insurance coverage, and no treatment as their illness relentlessly progresses. Sometimes families who cannot understand the illness or who cannot bear to be around the person who is ill, abandon their loved one, leaving him or her without financial, physical, or emotional support. I believe that this book will contribute to the growing literature on Lyme disease, not only as an artistic statement, but also as a medium that may open peoples’ eyes and hearts to the inner world of those who are experiencing a life-changing illness.
My hope is that as more people come to understand the impact of Lyme on all of our lives, the tide will turn in the direction of more enlightened education, treatment, and prevention. I just want to thank Emily for sharing her extraordinary book with me.
Patricia L. Gerbarg, MD
Assistant Professor of Clinical Psychiatry
New York Medical College
Co-author of “How to Use Herbs, Nutrients and Yoga in Mental Health Care” (W.W. Norton, 2009)
Co-author of “The Healing Power of the Breath” (Shambhala, 2012)
Dr. Patricia Gerbarg discusses Signs and Symptoms of Lyme Disease, as well as treatment and prevention. She tells her own story of a 7 year battle with neuro-Lyme disease.
Powossan Virus Emerges
In many parts of the country blacklegged ticks, or deer ticks, have a fearsome reputation for spreading Lyme disease. Commonly transmitted to humans, tick-borne diseases are reported by the Centers for Disease Control and Prevention (CDC) to be on the rise. Now scientists believe they have discovered a new threat from the blacklegged ticks called the Lineage II Powassan virus.
According to the Cary Institute for Ecosystem Studies, the virus can cause nervous system disruption, encephalitis, and meningitis in humans. There is a 10 to 15 percent fatality rate in documented cases and some survivors are left with permanent neurological damage.
Unlike many of the common illnesses transmitted by ticks, the virus transmission can take as little as 15 minutes. There is no vaccine or specific antiviral therapy; the best strategy remains prevention. Research on the virus is ongoing.
Researchers suggest that the Powassan virus is responsible for a number of human infections throughout the Hudson Valley in New York state. Other states in the region have also recorded cases of Powassan virus-related disease in recent years.
According to the Minnesota Department of Health (MDH), common symptoms involve fever, headache, vomiting, weakness, confusion, loss of coordination, speech difficulties, and memory loss.
Lyme Disease Association, Inc.
The Lyme Disease Association is a nonprofit organization dedicated to patient support. Their site contains a wealth of educational information covering all aspects of Lyme disease, including pictures of Lyme rash, treatment guidelines, photos of ticks, disease prevention, professional articles and more.
Lyme Disease Network
Nonprofit foundation providing information about Lyme-related legislation, international support groups, and links to other resources for information about Lyme disease.
American Lyme Disease Foundation
Contains information about prevention, diagnosis and treatment of Lyme disease and other tick-borne infections. They provide many educational materials and programs, including one for Hispanic communities.
Center for Disease Control
Find information about tick-borne diseases and how to reduce your chance of getting them.