Darcie Spence, MA, JD

Psychotherapy, Consultation & Coaching in San Francisco       415-820-3250

 


Lyme Disease is the most common vector born illness in the United States today. It is known to be transmitted to humans by several species of ticks. The West Coast, particularly Northern California, is one of the endemic areas, according to the Centers for Disease Control. Because the ticks involved are so small and inject an anesthetic when they bite you, most people do not recall seeing a tick or being bitten. As well, the Bull’s Eye rash that is associated with Lyme Disease may be present in as few as 35% of the cases.  The rash may look more like a spider or insect bite or some fairly common skin infections. People typically experience flu like symptoms within days or weeks of being bitten. Symptoms can include fatigue, stiffness, fever, headaches and body pain, all of which can easily be dismissed as a minor illness.


Here lies the problem. If Lyme Disease is diagnosed and treated right away, it can be relatively easy to overcome. If it is not diagnosed and treated initially, it can become a very serious multi-systemic illness that manifests debilitating physical, cognitive, neurological and psychiatric symptoms. As well, Lyme Disease can be passed from mother to fetus during pregnancy and result in stillbirth. And, though uncommon, people do die from complications of Lyme Disease. Lyme Disease bankrupts individuals and families and is having huge societal costs.


So why is more not generally known about this illness? Why are the public, physicians and other health care professionals still so misinformed about Lyme Disease? It’s complicated. For a myriad of reasons, Lyme Disease has been a very controversial illness. As Robert Bransfield, MD (a psychiatrist and the author of “the Neuropsychiatric Assessment of Lyme Disease”) says, “to know Lyme Disease is to not only know medicine, but also neurology, psychiatry, politics, economics and law.” 1


Lyme Disease first received significant national attention in 1975, after an outbreak of what was thought to be “pediatric arthritis” in Old Lyme, Connecticut.  Initially called Lyme arthritis, the name was changed to Lyme Disease when it became clear the illness “had more systemic manifestations.”  2 The causative agent, borrelia burgdorferi, was identified in 1982, and named after Willy Burgdorfer, PhD, one of the scientists involved in its discovery.


The organism is a spirochete like Treponema pallidum, the causative agent of syphilis. Unlike T pallidum, however, borrelia burgdorferi is a stealth pathogen and by design can evade the immune system. Dr. Bransfield describes it as, “one of the most complex organisms known to man.” 3 The borrelia bacteria can change forms, go dormant, and express new surface DNA to defeat and confuse the human immune system. It penetrates deep into the body over time and can be difficult to find, let alone eradicate. As well, Lyme Disease almost always includes a number of co-infections which complicate the clinical picture. Some of the more significant co-infections include Mycoplasma, Babesia, Bartonella, Chlamydia and Erlichia. 



Because the borrelia organism can evade the immune system, confirmatory lab testing has been challenging.  There has been significant controversy around the reliability of lab testing, the persistence of infections long term, and thus, about treatment itself.  It is important to know that Lyme Disease is a clinical diagnosis and confirmatory lab tests, though helpful, are not required. Because of the complexity of the organism, how the immune system responds over time, and the existing state of lab testing (very high percentage of false negatives), confirmatory lab results may not be possible. The lack of a positive lab test, viewed in isolation, is NOT a reason to tell someone they do not have Lyme Disease. Unfortunately, this still happens routinely with quite devastating results.


If Lyme Disease is not caught early and treated, the organism is disseminated throughout the body and can start impacting almost any organ system and producing a multitude of confusing seemingly unrelated symptoms.  It is common for the symptoms to come on slowly and build up over time. Some of the frequently reported symptoms are:


Physical: debilitating fatigue, muscle, joint, bone and nerve pain, migratory pain, disrupted sleep, weight gain, weight loss, change in bowel function, hormone imbalance (sex, adrenal, thyroid), severe headaches, bladder dysfunction, heart palpitations, shortness of breath, night sweats, low libido, exercise intolerance, sensitivities to food, alcohol and pharmaceuticals;


Cognitive: “brain fog”, inability to multi-task, concentration and attention issues, inability to plan and organize, “acquired dyslexia”, learning disabilities, word finding problems, difficulty reading and comprehending, memory problems, slow recall, slow speech, difficulty with math calculations and abstract reasoning. Simple tasks become impossible;


Neurological: twitching, numbness, facial paralysis (Bell’s Palsy), poor balance, left-right problems, confusion, getting lost, double or blurry vision, spatial disorganization, vertigo, sensitivity to light and sound, ringing in ears, seizures, tremor, dizziness; and


Psychiatric: decrease in frustration tolerance, depression, high anxiety, extended panic attacks, mood swings, irritability, overreacting, personality changes, OCD, paranoia, hallucinations, crying spells, rage, ADHD.


If there is a trauma or other highly stressful experience (e.g. childbirth, operation, accident, professional exam, death of a loved one, loss of home or job), the illness is often brought to the forefront. Often there is a major exacerbation in symptoms and a precipitous decline in functioning. It can be like “the straw that broke the camel’s back.”


It is important to know that the illness impacts people very differently and can mimic many other illnesses. Certain symptoms may be more prevalent depending on the co-infections. The predominant symptoms may change over the course of the illness. “Late in the progression of this disease neurological, cognitive and psychiatric symptoms predominate.” 4


It has been the norm for people to go years without being diagnosed, despite visits to a multitude of health care practitioners. Symptoms are routinely viewed as unrelated and thus treated one by one until someone finally sees that it is a systemic issue.  It has also been the norm for people to be misdiagnosed multiple times. Some of the common misdiagnoses are Chronic Fatigue Syndrome, Lupus, Fibromyalgia, Multiple Sclerosis, ALS, IBS, Early Alzheimer’s and a multitude of psychiatric disorders. Though a psychiatric disorder may be appropriate, such as Bipolar Disorder, OCD, Panic Disorder, Major Depression or a Psychotic Disorder, the primary cause of the disorder may be completely overlooked.


Finally, the experience of “living through” Lyme Disease itself is stressful and for some traumatic. The treatments are challenging and costly. An array of mood symptoms can arise simply in response to the experience. As well, because the illness is so challenging, it often brings unresolved emotional issues to the surface because of the need to depend on others and ask for help to get through the experience.


Footnotes, Other Source Material & Informative Websites (Including information about Prevention)


1Bransfield RC, The Neuropsychiatric Assessment of Lyme Disease

      http://www.mentalhealthandillness.com/

2Fallon, BA ,  Nields JA, Burrascano JJ,et al. The Neuropsychiatric Manifestations of Lyme Borreliosis, Psychiatric Quarterly, Vol. 63, No 1, Spring 1992.

3Bransfield RC, Lyme Disease, Comorbid Tick-Borne Diseases, and Neuropsychiatric Disorders, Psychiatric Times, Vol. 24, No. 14, 2007.

4Bransfield RC, The Neuropsychiatric Assessment of Lyme Disease.



Lyme Disease Association (formerly CALDA)

Publisher of The Lyme Times

http://lymedisease.org/


International Lyme and Associated Diseases Society

http://www.ilads.org/


Lyme Disease Association, Inc.

http://www.lymediseaseassociation.org/


Columbia University ~ Lyme and Tick-Borne Diseases Research Center

http://www.cumc.columbia.edu/dept/pi/nyspi/LymeDisease/index.html


Lyme Practice and Research ~ Dr. Daniel Cameron

http://www.lymeproject.com/index.html


International Lyme and Associated Diseases

Psychiatric Lyme Disease Brochure

What Psychiatrists Should Know About Lyme/Tick-Borne Disease

http://www.ilads.org/lyme/Psychiatric_Brochure_08_08.pdf



© 2013 Darcie Spence, MA, MFT, all rights reserved. (A somewhat shorter, slightly edited version of this article is scheduled to appear in the NAMI Marin 2013 June/July/August Newsletter.)

Darcie Spence, MA, MFT
, is a psychotherapist in private practice in San Francisco.    She has longstanding interests in both the transformative power of illness and the connection between emotional health and physical well-being. She provides individual and group psychotherapy, coaching and consultation to individuals and families struggling with Lyme Disease and other Difficult to Diagnose Health Issues. She also provides consultation and education about Lyme Disease to therapists, other health care professionals and caregivers. Other focus areas of her psychotherapy practice, which are often implicated in illness, include: developing healthy self-esteem and assertiveness, working through speaking fears, managing anxiety and stress, addressing work addictions and overachieving, and trauma resolution. For more information, please call Darcie at 415-820-3250 or e-mail her at darciespence@me.com. California Licensed Marriage and Family Therapist (MFC40060).
 

Lyme Disease ~ One Intersection of Infectious Disease and Mental Illness

by Darcie Spence, MFT