It’s May and that means it is Lyme disease awareness month.
Lyme disease is a bacterial infection spread by ticks. Although Ixodes scapularis, the species of tick known to transmit Lyme disease, is not recognized as a Montana resident, we know birds fly and ticks hitchhike, so no place is truly safe. Lyme is also carried by and may be transmitted by other biting insects, including mosquitoes.
The Centers for Disease Control estimates more than 300,000 Americans will be infected with Lyme disease this year. The early or acute phase of the infection is characterized by an expanding bull’s eye rash and flu-like symptoms that develop three to 30 days after the bite. However, not all transmitting bites result in a rash and not all rashes have a bull’s eye appearance. Fever, chills, headache, fatigue, and muscle and joint aches, especially during a time of year when the flu is not active, are an indication for considering an acute Lyme infection.
Unfortunately, many acute infections go undiagnosed and eventually develop into long-lasting chronic Lyme disease. Chronic Lyme is notoriously difficult to diagnose.
Chronic Lyme may be represented by any or all of the following types:
• Rheumatic: Migrating joint pains commonly involving the knees.
• Neurodegenerative: Shooting pains, tingling or numbness in hands or feet, and short term memory issues.
• Fatigue: A crushing fatigue not relieved by rest and often accompanied by disturbed sleep or insomnia.
• Neuropsych: ADD, ADHD, anxiety, depression, OCD, and bipolar disorders.
• Pain: Unrelenting localized or full body pain in muscles, joints and bones.
While any of these symptoms alone can be due to other causes, what makes Lyme unique is the involvement of many different bodily systems. It is difficult to believe a sore and swollen knee, constipation, tooth pain, heart palpitations, fatigue, unending migraines, a sore neck, and memory deficits are all related, but that’s Lyme. Additionally, no two patients have the same symptoms making it impossible to look for patterns. Lyme mimics and is often misdiagnosed as chronic fatigue, fibromyalgia, multiple sclerosis, ALS, arthritis, Lupus, dementia, Alzheimer’s, and some 350 other illnesses.
Further complicating diagnosis is that ticks are cesspools of disease. It is estimated 70 percent of bites also transmit other bacteria, protozoans, and viruses. One study found 64 percent of patients had between five and eight active coinfections, the most common being Bartonella, Babesia, EBV, HHV6, and Mycoplasma (not all are transmitted by ticks, some are opportunistic infections). Many of the symptoms overlap adding to the complexity of diagnosis.
If that’s not enough to make things difficult, we do not have good tests for either Lyme disease or many of the coinfections. Imagine a pregnancy test that gets it right 50 percent of the time. That is where we are with some of the Lyme tests. As a result, a negative Lyme test does not rule out Lyme disease.
The CDC recommends two-tier testing. First an ELISA (enzyme-linked immunosorbent assay) is run and if that is positive, then a Western Blot is run. If both of these are positive, then the patient has Lyme. However, this two-tier testing is only meant for tracking the spread of the disease. It is not for diagnosing patients. Unfortunately, many physicians use it for diagnosis causing countless patients with Lyme disease to fall through the cracks as testing positive for both can be difficult even with an active infection.
Yet testing is not needed to diagnose Lyme disease. Lyme is a clinical diagnosis meaning the physician evaluates the patient’s signs and symptoms and can diagnose from that alone. A positive Lyme test is not needed.
Sadly, chronic Lyme sufferers are some of the sickest of the sick. Anyone with multiple system involvement should consider Lyme disease. It is important to find a physician who is well versed in the nuances of the symptoms, coinfections, and testing. And always remember, a negative Lyme test does not rule out Lyme disease.
Dr. Joy Stevens is a Naturopathic physician specializing in tick-borne infections. She received her ND degree from Bastyr University. Prior to that, she worked as a petroleum engineer and as an attorney. She attended medical school after her own experience with misdiagnosed Lyme disease. Her motivation comes from a desire to ensure that what happened to her does not happen to anyone else.