On a spring day in 2009, a 27-year-old mom from Virginia drove herself to the emergency room, presenting with a strange array of symptoms – rapid weight loss, unexplained bruising, muscle twitching, facial numbness, widespread muscle pain, blurred vision, persistent candida infection, and thirst. During intake, she also mentioned an increase in anxiety and depression since the birth of her second child just a few months prior. She explained how she had tried an antidepressant briefly, but stopped after experiencing worsening physical symptoms. With two young children to care for, she was scared and desperate for answers. After multiple visits to a primary care physician led to no explanation for her symptoms, the emergency room was her last hope. Even her own family was beginning to wonder if this was “all in her head.”
A young resident listened intently and examined her carefully, mentioning the possibility of an infectious or autoimmune process at play, which would warrant an inpatient stay and further testing. But he was quickly overruled by the supervising physician who entered the room a short time later. The seasoned doctor briefly assessed the young woman, saw that her basic lab work was in the normal range, then asked in hushed tones about the possibility of abuse occurring at home (presumably to offer an explanation for the bruising and distraught state). The young woman was shocked by the false assumption of abuse and the quick dismissal of all the other physical symptoms. Then she was discharged, sent home with only a referral for a psychiatrist – no explanation, no investigation, no additional testing – just a conclusion that this was “simply” a case of mental illness.
Thankfully, the young woman persisted in finding a health care provider that was willing to get to the root of her symptoms. And a few months later, she was diagnosed with Lyme disease, based on a positive Western blot test and clinical symptoms. Through an integrative approach to treatment, she gradually improved and now seeks to help educate others about her experience. With Lyme disease on the rise across the country and few physicians qualified to diagnose and treat this complex illness, true stories like these are becoming more and more common. Some say it is the untreated epidemic of the 21st century.
The Elusive Diagnosis
Even if a physician does suspect Lyme disease, it is estimated that standard testing misses up to 90% of chronic or late-stage cases. Testing can be inaccurate in early-stages as well, since antibodies may not appear for several weeks after a tick bite. And only about 50% of those bitten will have the telltale “bull’s-eye” rash (Erythema Migrans). Since the disease has been called “the Great Imitator,” diagnosis based on clinical symptoms can also be problematic. Chronic fatigue syndrome, fibromyalgia, multiple sclerosis, bipolar disorders, and Alzheimer’s disease are just a few of the conditions that it can mimic.
The director of the Lyme Disease Research Program at Columbia University, Dr. Brian Fallon, recommends the following types of testing for more accurate diagnosis:
- Western Blot serologic studies
- Lumbar puncture
- Neuropsychological testing
- Brain MRI and SPECT scans
ILADS (International Lyme and Associated Diseases Society) emphasizes the importance of using Lyme-specific laboratories for blood testing. They urge physicians not to rule out tick-borne illnesses based on blood tests alone (particularly when there is a strong clinical presentation), because of the high rate of false negatives. However, Lyme disease specialist Dr. Joseph Burrascano has developed a new technology that can test for the presence of the bacteria itself, rather than just antibodies. This is advantageous because (1) it is more accurate than testing for antibodies alone and (2) it can provide proof of active infection in chronic cases, validating the lingering symptoms often reported by patients (which are frequently dismissed by physicians as “post-Lyme syndrome”). This test has been validated and is now used here at Holtorf Medical Group.
Since these newer and more accurate testing procedures are not yet widely utilized, clinical presentation is a valuable part of the diagnosis process. Here are the most common symptoms reported by patients in the various stages of the disease (although they can vary widely).
Symptoms of Acute/Early-Stage Lyme may include:
(usually occurring within 1-2 weeks of the tick bite)
- Flu-like symptoms
- Muscle and joint pain
- Rash (may start small, then spread)
- Headache/stiff neck
- Swollen lymph nodes
Symptoms of Late-Stage Lyme may include:
- Debilitating fatigue
- Night sweats
- Severe headaches
- Migrating joint pains
- Muscle pain/twitching
- Heart complications
- Other neurological symptoms (ie. facial or optic nerve numbness, disturbed speech)
- Behavioral changes (often seen in children and teens)
- Digestive complaints (often seen in children)
The idea that Lyme disease can cause neurological and psychiatric disorders is not far-fetched when one considers that the bacterial culprit has been compared to the pathogen that causes syphilis. They are similar in both shape and behavior in the body, affecting multiple systems including the brain. There is also research backing this connection between Lyme borreliosis and neurological complications. It is referred to as “neuroborreliosis” or “Lyme encephalopathy.” A 2002 study in a psychiatric journal estimated that one-third of inpatient psychiatric patients showed symptoms of Borrelia burgdorferi infection and that their neurological symptoms improved when they were treated accordingly. Harvard psychiatrist Barbara Schildkrout says that around 100 medical conditions are disguised as psychiatric disorders. Additionally, 25% of all psychiatric disorders are thought to be directly linked with a medical condition, while up to 75% are thought to have a medical/physiological contributor. Specifically for Lyme disease, 15-40% of patients have been diagnosed with some type of neurological condition. With all this evidence of cross-over, Borrelia burgdorferi infection (and co-infections) should certainly be considered in psychiatric cases, when psychiatric medications alone are not effective.
Neurological/psychiatric symptoms may include:
- “Brain fog” and memory loss
- Irritability or rage/outbursts
- Anxiety/panic attacks
- Obsessive Compulsive Disorder
- Attention Deficit Disorder
- Autism-like syndrome
- Slowed processing/impaired visual or spatial processing
- Sleep disorders
- Mood swings or Bipolar disorders
An Integrative Approach
A multi-faceted, integrative, and individualized approach to treating Lyme borreliosis and other tick-borne illnesses is essential, due to the various co-infections and stages of the disease. The bacteria itself can change states in the body (cell wall vs. non-cell wall vs. cyst form), necessitating different forms of treatment. A therapeutic protocol may include a combination of antibiotics, antivirals, immune modulators, nutritional supplements, hormonal therapies, and other treatments based on the individual’s needs.
An anti-inflammatory diet can be helpful in managing symptoms as well, since chronic infection triggers a continuous release of inflammatory proteins, called cytokines. An anti-inflammatory diet includes plenty of green leafy vegetables, good quality olive oil, and foods high in omega-3 fatty acids, such as cold-water fish and nuts. Processed meats, refined grains, added sugars, alcohol, and foods fried in vegetable oils should be kept to a minimum.
Correct diagnosis and treatment can take time, but there is hope – get educated, find Lyme literate health care practitioners, and seek out support from other patients and loved ones. Most importantly, don’t give up!
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Holtorf, K. Lyme Disease – The Great Imitator. Holtorf Medical Group. Available at:
Accessed on March 17,2016
Holtorf, K. Lyme Disease and Psychiatric Disorders. Holtorf Medical Group. Available at:
Accessed on March 17, 2016.
Holtorf Medical Group, Inc. Lyme disease the Cause of 1/3 of Psychiatric Disorders? Available at:
Accessed on March 17, 2016.
Ramesh, G et al. Inflammation in the pathogenesis of lyme neuroborreliosis. Am J Pathol. 2015 May; 185(5): 1344-60.