Lyme Disease and Mental Health
I have collaborated with a college student who wrote her thesis on Lyme disease in the development of this monologue:
Lyme disease And Mental Health: Is There a Connection?
By Jillian Cote in collaboration with Cynthia M Chase, MSW, LCSW
Lyme disease is a very controversial and complex disease. Many people believe it originated in the United States in Lyme, Connecticut. It was thought to be a rare disease that was endemic only to the Northeastern United States. It was believed to be transmitted through the bite of a deer tick. Initially it was also believed to be a disease that caused mainly arthritic symptoms and was not considered to be very serious.
Over the years many people become infected and it has virtually become an epidemic; the disease has spread and has now been identified in Canada, England, Scotland, Sweden, Norway, Russia, Poland, Portugal, Croatia, Switzerland, Italy, Africa, Mexico and many South American countries. As a result of study and research all of the “early” beliefs are now being questioned or built upon.
The more research that is done, the more questions arise. One of the most frustrating and challenging aspects of Lyme disease is the possibility that the disease affects the brain, cognition and feelings. What effect does Lyme disease have on mental and emotional functioning? Does is cause mental illness? Can Lyme disease cause an exacerbation of existing mental disorders?
Why I Chose This Subject (this is Jillian speaking)
This subject matter that is very close to home for me: I personally struggle with this debilitating disease.
• I was bitten by a tick at the age of 15; it was not considered significant at all; after all, it was just a “bug bite” without a rash.
I became ill over the next few years. I made no connection with the range of symptoms and the bite of a tick at age 15. My symptoms were perceived as “odd”; I would get sinus infections at least once a month, migraine headaches at least once a week. I was diagnosed with mononucleosis two times. Extreme fatigue hit, joint pain developed, and I developed double vision. I experienced more serious symptoms at around age 18, including tingling in my hands and feet, shooting pains in my legs, and by age 20 I could barely get out of bed. We had no idea what was going on! I was tested extensively and all tests proved negative.
During this same period of time I also began to experience other symptoms that were not physical, but rather were psychological and cognitive in nature. My memory deteriorated dramatically, I experienced a heavy and unremitting depression, and could not focus. These symptoms made it difficult to advocate for myself; I could not focus or think straight.
In the absence of a positive medical finding, I was told I was “crazy”, depressed, that I was just making it up. Over the years I was told repeatedly that my symptoms were “psychogenic” (that is, originating of my mind) by numerous doctors.
• At age 20 (I am now 29 years old) I found a Lyme disease specialist (Kenneth B. Liegner, M.D., P.C., Internal & Critical Care Medicine Lyme Borreliosis & Related Disorders, 8 Barnard Road, Armonk, New York 10504) who diagnosed and treated me based on my symptoms. I experienced significant improvement under his care.
•Years later my condition worsened again .After extensive testing, brain specs, spinal taps, MRIs, and lab work sent to a special lab in California (Igenix), I finally had a medical diagnosis based on serology! This specialized lab found the Lyme bacteria in my spinal fluid, which then allowed me to receive medical treatment that was covered by my insurance company. I received treatment from Dr. Richard Horowitz of Hyde Park, N.Y. He placed me on oral antibiotics, intravenous antibiotics and injections. With this approach my health improved and I felt I had my life back for the first time in years. This was also the first time I was covered by my insurance company for treatment: this was a great relief!
• There were finally periods of remission again, but gradually I went back on to the Lyme disease roller coaster. Periods of minor improvement were peppered with old and new symptoms, one as debilitating as the next. I tended to deny my symptoms. I was “sick and tired of being sick and tired!”
• I had to return to my home state for my family to care for me since I became so ill again! I found another Lyme literate Doctor, Dr. Alphonse Campo in Stamford, Connecticut. It was found that I had adrenal exhaustion and hypo-thyroidism, more than likely a direct or indirect result of the Lyme disease. The new course of treatment included antibiotics, and other heavy duty prescription medication for Lyme and co-infections, B 12 injections, medication for nausea, medication for pain and exhaustion, thyroid medication and assorted treatments for sinus and upper respiratory conditions, treatment for migraines, herbal therapy, psychotropic medication to even out my mood, and medication for anxiety. I was a walking pharmacy, but I began to experience some relief.
Each person is affected differently by the disease depending upon where the bacteria move and multiply in the body. In my case, I finally had clear evidence that the bacteria were multiplying in my spinal cord. It now made sense that Lyme disease could affect my feelings, cognition and emotions.
From my own experience, it is clear that this disease not only causes physical symptoms but it can cause emotional or mental health issues as well. Depression, anxiety, and Attention Deficit Disorder are just a few that I experienced. Not only did my physical symptoms develop as a result of Lyme disease, but psychiatric symptoms developed that were not in evidence previously.
I do not speak as an expert, but as a person who has become ill with an insidious and complex disease. Since diagnosis and treatment is still so undeveloped, I have found it critical to become my own advocate, no matter how sick I am. I have made it my priority to research what is known about the disease, and to pursue treatments based on my hard won knowledge. I have a particular interest in discovering how to distinguish between primary depression, or depression as a consequence of having Lyme. This is where I have tried to focus most of my research.
What is Lyme Disease? The History and Biology of the Disease
In the United States it is believed, as Vanderhoof-Forscher (1997) point out, that Lyme disease was discovered in 1977 in the small town of Lyme, Connecticut; hence then naming of the disease(p.36). A woman named Polly Murray living in Old Lyme, Connecticut found that she developed rashes, headaches and swollen joints and later, she also suffered memory loss, nausea, shooting pains throughout her body along with intense fatigue. She went to major medical centers in New York and Boston but was told consistently that her illness was psychogenic.
As family members and neighbors developed the same or worse symptoms, she was more committed than ever to uncover the true cause of this strange complex of symptoms. Finally she called the Connecticut Department of Health. Her persistence eventually led to researchers Mast and Burrows to identify successful treatment of patients with antibiotics bitten by ticks as reported in the Journal of the American Medical Association.
The first actual recorded case of Lyme disease or condition associated with it, according to Vanderhoof-Forscher (1997) was not in America, but in Germany in 1883 (p.37).
In 1909 a Swedish physician, while at a meeting of the Swedish Society of Dermatology, presented research that can be considered ground-breaking about a ring-like, expanding lesion that he had observed. This physician was Arvid Afzelius; he published his work after 12 years and hypothesized that this particular rash was caused by the bite of an Ixodes tick. This rash is now know as an “erythema migrans” (EM) and can be considered a characteristic sign of Lyme disease as well as used as a tool for diagnosing the disease.
Vanderhoof –Forscher (1997) also tells us in 1945 researchers in Europe had published research papers in reference to very similar if not identical symptomology to that of the disease we later identified as “Lyme” (p.36).
Research continued and cases of this disease were showing up in other countries; foundations were formed to help aid in the research. According to Vanderhoof-Forscher (1997) the main “pioneers” of Lyme disease research and discovery were mainly Europeans. In America a brilliant researcher working at the Rocky Mountain Laboratories of the National Institutes of Health named Willy Burgdorfer actually discovered the spirochete named Borrelia burgdorferi (Bb) in honor of this pioneering work.
It then became unequivocally known that Lyme disease is an illness that is transmitted through the bite of a tick. Not all ticks carry Lyme disease; the most common carrier is the deer tick. This particular bacterium is shaped like a corkscrew and is called a spirochete; it is in some ways similar to the one that causes syphilis.
Lyme disease is then a multi-symptomatic illness which can and in many cases does affect the central nervous system. Individuals with Lyme disease can also be infected by other bacterial, viral, amoebic and parasitic organisms through the bite of a tick. Multiple infections can occur at the same time!
Here are some fascinating, but nightmarish facets being studied now: based on my study of the research on Lyme disease, it appears that
• Bb has the ability (within the first few weeks of initial infection) to invade the central nervous system (or CNS) via the cerebrospinal fluid (or CSF). Spirochetes can then attach to glial cell (cells in the brain that are particular to the nervous system) as well as other brain tissues. It also penetrates deep into body tissue and other body fluids, not staying in the blood.
• Amazingly, it has been shown that spirochetes have the ability to genetically alter themselves and create a new strain of spirochete.
• Another confounding factor is that once bitten, symptoms may not appear initially, for months or possibly years possibly due to a latency period possibly relating to the replication rate, and or due to the ability of the spirochete cells to be covered by a “viral cloak” which hides its identity to the fighter white blood cells!
• Lyme disease is very difficult to diagnose through laboratory testing. These blood tests are not highly reliable, although there appear to be some that are more reliable than others. The Infectious Disease Society has developed recommendations for the diagnosis and treatment of Lyme disease that are restrictive and that exclude many who are suffering from the clinical symptoms from the diagnosis; it therefore, excludes many from treatment.
• Since these organisms are so complex and not fully understood, there appears to be a high rate of results coming back as a false-negative. Bb is extremely difficult to culture; some of the “antigens” of Bb are also shared by bacteria that cause other diseases. This then adds to the problem of a clearly defined diagnosis.
In the event that blood serology comes back negative Lyme literate physicians are then drawn to look carefully at the clinical symptoms. A full evaluation is then needed, looking at the patient’s full health history, current symptoms, physical exam, neurological exam, and current mental status.
The Stages and Symptoms
Many people have been lead to believe that first symptom and “tell all” of Lyme disease is a “bulls-eye” rash, or medically known as an “erythema migrans.” This has actually proven to be false. Estimates suggest that roughly 1/3 of people do not recall getting the rash or getting bit; other estimates are even higher.
“Lyme literate Physicians” have determined that aggressive treatment needs to be started immediately. Among this group of Lyme treaters, it is also believed that the sooner a person is treated after getting infected the higher the chance for successful treatment. If an individual is undertreated then Lyme disease may come back as chronic and with many additional problems, complicating diagnosis; additional treatment will be more costly than if initial treatment was immediate.
There are believed to be distinct stages of Lyme disease;
• Some of the symptoms of early Lyme disease can include: headache, fatigue, malaise, serious muscle aches and pains, fevers, chills, sore throat, profuse sweating, diarrhea, swollen glands, and joint pain.
• Symptoms that are typical in later stages of Lyme disease can also include: sleep disturbance, photophobia, extreme irritability, word-finding problems, and dyslexic-like errors. It can also have dermatologic, arthritic, ophthalmologic, cardiac, neurologic, and psychiatric manifestations.
Mental Effects, Psychological Illness, and Other Possibilities
My focus will now be on the mental and emotional complications of Lyme disease. There are multi-dimensional challenges to the Lyme patient:
• The patient may suffer with a range of roving physical symptoms
• A full range of psychiatric manifestations may develop
• Physical and emotional pain de-stabilize
• The Lyme patient may be subject to a medical establishment that often fails to listen to the patient, and accuses the victim of fabricating symptoms.
• Medical insurance companies, based on the model that is economically driven supports a restrictive definition of the disease, little knowing that failure to quickly and aggressively treat creates multiple conditions that cost insurance companies so much more.
• Self doubt is inevitable under the circumstances. Lyme disease is a disease you can’t see; suffering on the inside may not necessarily be visible on the outside, confounding loved ones and providers alike. ”But you look so good” is a common refrain, but to the Lyme patient when physical and emotional pain is not validated existential despair intensifies.
• Add to this picture the possibility that Lyme disease can actually cause or exacerbate psychiatric illness and you can see that the suffering and confusion exponentially increase.
There is a broad range of psychiatric reactions or disorders that are proposed as being associated with Lyme disease. Dr. Robert Bransfield, a psychiatrist from Red Hook New Jersey, has developed an extensive psychiatric evaluation based on his observation of the Lyme patient. He has identified many psychiatric conditions that are associated with Lyme disease:
- bipolar disorder
- panic attacks
- major depression
- anorexia nervosa
- thought disorder
- auditory hallucinations
- olfactory hallucinations
- visual hallucinations
- personality changes
- violent outbursts
- and obsessive-compulsive disorder
Depression is the most common psychiatric syndrome affecting an estimated one third or more of all Lyme disease patients. As I mentioned earlier it is suggested that during diagnosis of Lyme disease while gathering an individual’s clinical profile, psychiatric disorders should be included.
Psychiatric evaluations can become very difficult and complicated especially when the individual’s symptoms appear after they have already been through a standard course of antibiotic treatment. In some people psychiatric manifestations are the predominate symptom and they can range in severity from agitated or depressive states to someone who looks as if they have clinical dementia. Studies have been done and have shown that individuals with Lyme disease do have a higher rate of mental health illness or psychiatric problems.
A case study that was done on children with Lyme disease actually showed that behavioral or mood disturbances were the second most common symptom resulting in mood labiality, decreased interest in play, and or poor performance in school; it has also been said to be linked with ADD and ADHD.
The psychiatric symptoms of an individual with Lyme disease often do not fit into a neat textbook definition. There may be multiple conditions not usually seen together in one patient. These patients may not respond well to psychiatric medication. Psychiatric symptoms can get worse as the Lyme bacteria grow more active and reproduce, and then patients may experience “flare-ups” of their physical and psychiatric symptoms, which often times are triggered by the Herxheimer reaction or stress.
Individuals with Lyme disease can develop emotional impulsivity; some may become verbally abusive while others may become withdrawn and lose self confidence.
These complexes of medical and psychiatric stressors may diminish a person’s ability to cope with daily life challenges and daily tasks. It appears that part of the reason for this is that the part of your brain that deals with signs and signals, like a processing center, can also be affected by Lyme disease. Lyme disease can cause swelling in the brain and thus affects the ability to control thoughts, concentrate, and process things. There has also been speculation that temporal lobe seizures may contribute to angry outbursts, and other changes.
Lyme disease not only diminishes the quality of life individuals; families and marriages are affected when one or more family members are diagnosis with Lyme and or co infections. If only one individual in the home has the disease it can be hard for other family members to truly understand what they are experiencing and accept the reality of their inner condition. Lyme disease may show up in a combination of mixed and confusing symptoms not always allowing those around that person to clearly identify the source of the problems. Add to that low frustration tolerance and sudden and unusual personality changes in the Lyme patient, and then it can get even more destructive to family interaction.
If more than one family member has the disease it may be slightly easier for them to understand each other which may be considered positive. However, you now have two individuals with the same disease that can be presenting completely different symptoms. When two or more people feel tired, ill, pained, a previously well functioning family can end up in a downward spiral.
Because the effects the disease can have on the brain Lyme disease patients are not as capable at thinking things through; they may tend to be impulsive. During an angry outburst or in a fit of crying this can turn explosive and destructive. In a “Lyme Rage” it is possible that domestic abuse may be fostered; it is often overlooked as part of the etiology of a family breakdown.
There are also some secondary psychological issues that Lyme disease patients tend to face. These consist of symptoms like:
- low self-esteem
- feelings of alienation
- feeling inadequate
- And doubting one’s own sanity.
Individuals with Lyme disease will often say that they feel like they have lost complete control of everything, not just of their body and emotions, but of their ability to even think clearly and comprehend as they did in the past. Many people are not sure where to go for help, information or treatment. These secondary issues can be just as difficult to deal with as the direct effect of the disease itself.
Many doctors, when faced with negative blood work or serology, will suggest that the patient be evaluated by a psychiatrist. Considering that Lyme disease may manifest with psychiatric symptoms it may be helpful to review how the person may be helped with psychotropic medications. However, comprehensive treatment needs to be addressed from both the mind (psychiatric) and body (physical) standpoints together. Without this, the patient may feel stigmatized and misunderstood. It may feel like a judgment – “You are crazy”- rather than a secondary effect of a physical, medical condition.
Unfortunately, many mental health practitioners are not aware of the potential connection between this complex of physical diseases and the manifestation of psychiatric symptoms. If the origin of the psychiatric symptoms is Lyme or co infection, treatment with psychotropic medications may help, but do not address the underlying medical cause. The four most telling signs that we are not dealing with a “simple” psychiatric condition follow:
1. If uncharacteristic psychiatric symptoms appeared after infection (if in fact, that can be determined)
2. If psychotropic medications do not seem to have the expected result, and/or
3. There is multiple, changing symptomology not usually seen in patients
4. And there may be roving physical symptoms that run the gamut across several bodily systems, as in nervous, cardiovascular, urinary, reproductive, endocrine, lymphatic, digestive, muscular and skeletal systems.
Another factor affecting outcome is the immediacy of treatment. If medical treatment for Lyme or co- infections is delayed due to the understanding that the psychiatric symptoms are solely the result of psychological and emotional problems, then treatment of the cause itself is delayed. In that case, Lyme disease itself may still be active and spreading, continuing to do its damage. Such delays in treatment can lead to chronic neurological and other physical problems. It is therefore extremely important for mental health professionals to be aware of the possibility that what looks psychiatric may have its origin in an undiagnosed medical condition.
The Effects of the Controversy
I will only briefly mention the “Lyme controversy”. Many medical professionals disagree on almost all aspects of Lyme disease; there are medical boards that have had long drawn out meetings and conferences about Lyme disease questioning its very existence; there are insurance companies refusing to pay for treatment.
The fact that significant research findings about the disease/s are continuing to be published does not make the controversy any less contentious. Just like Syphilis in previous years, both of these diseases could be called “the great imitator.” Both bacterial diseases can travel throughout the body and affect multiple body systems – including the brain. “Syphilis psychosis” has similarities to the more severe psychiatric manifestations of Lyme disease and co-infections. It was similarly misunderstood and misdiagnosed in regard to Syphilis.
Controversies rage as to whether this disease can be passed down from mother to child as well as if it should be considered a sexually transmitted disease. Considering that a spirochete can pass through the blood brain barrier, it seems plausible that spirochetes can pass through the placenta to the fetus. That is a topic that should be carefully studies since it has implications for family planning and health.
Many have agreed that aggressive treatment should be initiated as soon as possible, preferably immediately after infection is an individual’s best chance at getting better. Others take a wait and see attitude, waiting for symptoms to appear even though a rash has been observed.
A portion of the medical community focuses on the long term harmful effects of antibiotics. Unfortunately, some of these same medical professionals do not offer alternatives, either focusing on symptom alleviation or leaving the patient to fend for themselves in uncharted territory.
Some in integrative, holistic or homeopathic medicine suggest a more natural, herbal, homeopathic or holistic approach that minimizes dangerous side-effects of antibiotics and other prescribed medications.
Another aspect of the controversy has to do with the recognition of psychiatric manifestations of Lyme and company. Many health professionals are identifying that psychological manifestations are truly caused by the Lyme disease and or co-infections; some see that psychiatric disorders that predate onset of infection may be exacerbated once chronic Lyme settles in. Others deny or are unaware that there could be such a connection between a physical illness and the mental and emotional functioning of a person.
Conclusions and Final Thoughts
Following a review of my own personal experience and studying the data available on the subject of the connection between Lyme disease and psychiatric symptoms, I am convinced that there is a connection. Spirochetes and other bacteria and viruses multiplying inside the brain could be the basis of a very disturbing horror film! Not only that: the microbes themselves enter into the sacred territory of our brains and they also produce neuro-toxins which inflame and disrupt function. When the microbes are killed off neurotoxins are produced that worsen symptoms associated with the function of that particular part of the brain or body!
• Disease Intelligence: This is obviously a very smart disease. It can change form and make genetic alterations like a magician! It can travel not just in our blood, but through our spinal fluid, attach to our brain matter, enter into other body fluids, go deep into body tissue; basically anywhere it wants to go.
• Disease Spreading: Research reveals that this is actually becoming a global epidemic.
• Under-diagnosis: Too many cases go undiagnosed or and misdiagnosed before finally getting the correct diagnosis; then so much damage may already be done.
• Increase in Vectors: There is new research out suggesting that certain birds can actually carry ticks on them; this would help explain the unexpected spread in location. It is also being suggested that coyotes and bear can carry ticks infected with Lyme disease, in addition to deer and mice. In many areas wild life are making their way back to areas where they used to roam or are being brought into sanctuaries and state parks; this too could be carrying infected ticks all over. Overpopulation and the eradication of burning fields has also promoted the unchallenged growth of the tick population. The result is that more and more people are getting bit by this tiny little tick, sometimes almost too small to see without a magnifying glass. Lack of knowledge and the difficulty of spotting the intruder add to the risk.
• Medical Treatment: The medical community is divided. The debate has been emotional, at time leading to intense witch-hunting techniques as in the arrest and fining of Dr. Charles Ray Jones, (Pediatric Lyme specialist of New Haven). Doctors have been black-mailed, as in the McCarthy days, and run out of business for providing treatment for chronically ill Lyme patients. This has created a cloud of suspicion, fear and secrecy that is unheard of. In most recent times the HIV epidemic (in its early stages) was infected with similar emotional, irrational, blaming and attacking dynamics. Doctors in good faith who try to provide help to their suffering patients have operated in fear of their licenses, causing some of them to pull back on treatment.
• Education: A major priority should be to educate the entire medical community. The fields that need ongoing illumination are: psychiatry, chiropractic, neurology, cardiology, dermatology, endocrinology, gastroenterology, infectious disease, neurology, ophthalmology, rheumatology, and primary care practitioners. Each of these specialized fields may be exposed to a particular symptom that has its origin in a microbial infection such as Lyme or co-infection. Treatment of the particular organ or system may yield some temporary results, but not treat the underlying disorder which may then move on to the next organ or system. Also those in the fields of Primary Care, geriatrics and pediatrics are dealing the most vulnerable on either end of the age spectrum and all in-between. It is critical that they become aware of the intersection of various disease states and possible bacterial or viral infection.
• Education: the public. Lyme disease is an epidemic disease that is quietly and deceptively disabling people one by one without prejudice. Education would also then help in the actual diagnosis and treatment of the disease. The documentary, “Under our Skin” is a chilling film about the tragedy of this complex of diseases.
• In response to the vacuum of affordable, rational diagnosis and treatment of Lyme disease and co-infections, a democratic ground-swell demanding more research and treatment options has emerged. Lyme disease support groups are proliferating, and there is an underground social network that populates, not only facebook, but many blogs, twitters, and other social media.
• Patients are now seeking alternative treatments such as Rife treatments, Chinese herbal treatments, homeopathy, vitamin therapies, the treatment of vitamin deficiencies directly or indirectly caused by the microbial infections. Hyperbaric Oxygen treatments, infrared saunas, nutritional and exercise programs support the ever-expanding desire to be well, in a larger sense.
Final note: Mental health is not something that should ever be taken lightly. The mind is fragile, and the direct and indirect stressors of Lyme disease and Company can induce feelings of anger, frustration helplessness and alienation. Suffering from a painful and debilitating disease can be alleviated by an understanding and committed medical and alternative community of health care providers. Support from other patients from the Lyme network can provide the critical validation that is part of the healing. Solace and hope are so important in the journey toward healing. Until research, medical and alternative practice offers a more comprehensive and reliable diagnostic and treatment protocol, I take solace in the knowledge that I am not alone.
Barbour, Alan G. M.D. (1996). Lyme Disease; The Cause, the Cure, the Controversy. Baltimore: John Hopkins University Press
Burrascano, Joseph J. JR M.D. (2008). Advanced Topics in Lyme Disease; Diagnosis Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, 16th Edition.
Lang, D & DeSilva, D M.D. (1993), Coping with Lyme Disease; A Practical Guide To Dealing With Diagnosis And Treatment. New York: H Holt & Co.
Vanderhoof-Forschner, K. (1997). Everything You Need To Know About Lyme Disease and Other Tick-Borne Disorders. New York: John Willer
Andrews, V. (2004). The Psychological Effects Of Lyme Disease; Can a tick bite drive you crazy? Doctors warn that Lyme disease may cause personality changes. Retrieved November, 1, 2009 From IgeneX, Inc web site: http://www.igenex.com/psychological_effects.htm
Bransfield, R M.D. (n.d). The Neuropsychiatric Assessment of Lyme Disease. Retrieved 11/8/2009 from web search: http://www.mentalhealthandillness.com/tnaold.html
Fallon, B M.D., M.P.H. & Nields, J M.D. (1994) Lyme Disease: A Neuropsychiatric Illness. Retrieved on November 20, 2009 from the American Journal of Psychiatry through: http://www.angelfire.com/biz/romarkaraoke/lymeart.html
56. Chronic Lyme disease hobbles Spanish Fork woman
57. By Carrie A. Moore
58. Deseret News
59. Published: Sunday, Dec. 27, 2009 8:54 p.m. MST
Lyme disease takes wing on its spread inland
By Robert Miller, Staff Writer
Published: 09:54 p.m., Monday, December 28, 2009