Originally discovered in 1982, Lyme disease has been the most under-diagnosed and least understood illnesses of the 21st century. Categorized as the fastest spreading vector-borne illness in the country, the CDC estimates that there are up to 300,000 newly acquired cases per year, making Lyme an epidemic larger than AIDS, West Nile Virus and Avian Flu combined.
Lyme disease is defined as an infection caused by the spirochete bacteria, Borrelia burgdorferi (Bb); although, many other species of Borrelia can cause similar symptoms such as Relapsing Fever Borrelia (RFB). With over 100 strains in the United States, this diversity is thought to contribute to both the difficulty of obtaining an accurate diagnosis and maintaining long term remission.
In as many as 70% of cases, Lyme disease is accompanied by other co-infected tick-borne organisms that often require different natural antimicrobial or antibiotic therapies. The presence of these co-morbid infections can complicate and prolong treatment duration and is frequently a reason for prior treatment failure when left undiagnosed.
Symptoms of Lyme Disease
Lyme disease can manifest with a wide array of symptoms ranging from fatigue and joint pain to serious cardiac and debilitating neurologic problems. The initial infection will often cause flu-like symptoms 7-21 days after acquiring the illness. This frequently progresses to involve fatigue, fevers, headaches, chills, joint and muscle pain, and swollen lymph nodes. If left untreated or if inadequately treated, chronic and potentially more serious symptoms may develop.
A (partial) list of symptoms for the most common tick-borne diseases includes:
- Gradual onset/worsening of initial symptoms
- Multisystem involvement almost always (i.e. joint pain + fatigue + cognitive issues, etc)
- Migratory joint pain
- Stiff joints and loud crepitus/cracking with motion, especially neck.
- Headaches are often in the back of the head and are commonly associated with a stiff and painful neck.
- Afternoon fevers often with subnormal temps in AM.
- Moderate to severe fatigue and poor stamina/endurance.
- Symptoms seem to flare in 4-week cycles
- Muscle fasciculations/twitching and weakness
- Paresthesia/numbness and nerve pain; cranial nerve dysfunction affecting sensory organs such as visual acuity, smell, sound and balance.
- Sleep disturbance
- Bladder irritation and urgency
- Hypersensitivity to light and sound
- Chest pain; cardiac abnormalities especially racing heart and premature beats
- Neuropsychiatric symptoms – irritability, depression, anxiety, panic, mood swings that mimic bipolarity, rage and OCD
- Cognitive dysfunction causing short term memory loss, difficulty with word-finding, conversational skills and executive function/problem-solving skills.
- Gradual onset of illness; occasionally light sweats
- Disproportionately strong neurologic symptoms with more central nervous system involvement and peripheral neuropathic symptoms than musculoskeletal symptoms
- Neuropsychiatric symptoms including rage, disorientation, hallucination and other more serious adjustment order issues.
- Crawling, burning sensations on the body.
- GI upset, sore/burning sole of feet, AM fevers, swollen lymph nodes.
- Subcutaneous nodules on limbs, striations that appear as stretch marks in “odd” areas of the body like the thighs, low back and arms.
- Headaches that are severe ice-pick or stabbing in sensation; migraine level head pain.
- Elevated VEGF in some causing sensation of burning skin and feeling overheated.
- Rapid relapse in symptoms if treatment ended too soon.
- Abrupt onset of initial illness with high fevers, rigors and sweating, especially at night and often drenching; shaking chills
- Fatigue, global headaches that can feel like a ‘band’ that is creating severe pressure/squeezing.
- Dizziness, vertigo, tinnitus, chest pain, racing heart; labile or uncontrolled blood pressure.
- Severe muscle aching more than joint pain.
- Air hunger, dry cough, chronic sore throat
- Severe sleep disorders often with weird dreams or nightmares; severe anxiety, fear or panic
- Anemia and red blood cell rupture/hemolysis
- Very severe Lyme symptoms and poor response of Lyme to otherwise appropriate treatment
Ehrlichia and Anaplasma:
- Rapid onset of initial illness with fever.
- Headaches described as sharp and knife-like and behind eyes
- Low white blood cells and platelets
- Abdominal and/or right upper quadrant pain; often with unexplained elevations of liver enzymes
- Muscle pain, not joint pain which can be mild or severe
- Rapid response to treatment
It is very common to hear of people suffering from a constellation of signs and functional symptoms which are left unexplained even after visits to numerous doctors and specialists. With many clinicians focusing on a part rather than the whole, diagnoses can be given out of exclusion or end up vague and describing the symptom itself such as “reactive arthritis”, “mixed connective tissue disorder”, “abnormality of the autonomic nervous system” , “unspecified immune dysfunction”, fibromyalgia and chronic fatigue syndrome. And, when it is not possible to label the illness accordingly, it is often diagnosed as psychological or delusional in nature.
While a tick bite can be an important clue, most people have no recollection of ever being bitten. Additionally, standard lab testing is primarily effective only at diagnosing acute, not chronic Lyme disease. It is estimated that the standard two-tier test recommended by the Center for Disease Control (CDC) may miss up to 90% of chronic Lyme disease cases. The established diagnostic criteria for this test was never intended to effectively diagnose Lyme in human hosts but was instead designed as an epidemiologic tool to track the spread of Lyme disease.
Additionally, there is a widespread lack of education amongst healthcare providers regarding the presence and geographical distribution of Lyme which many people still consider rare and isolated to New England. Denying that Lyme disease could even be a consideration, many physicians ignore the possibility altogether.
It should be emphasized that no test can replace the ability of an astute and well trained Lyme-literate physician to make a clinical diagnosis based on history and symptoms. Lab testing for Lyme disease requires a physician that can appropriately interpret and understand the results.
Co-infection testing is determined based on the types of presenting symptoms either at the initial visit or after assessing initial response to treatment and changes to relevant lab markers. The most modern, well-validated and evidence-based labs are chosen to assist in making this assessment.
Treating Lyme Disease
After a diagnosis is established, the standard of care in the treatment of Lyme disease involves prescription antibiotic therapy, ideally lasting 3-6 weeks. Unfortunately, unless this medication is provided soon after the tick-bite (ideally within 1-2 months for acute illness), conventional treatment frequently proves inadequate. Either left with unresolved symptoms or relapsing within 6 months, many people will continue to suffer from lingering physical dysfunction and a wide range of potential functional complaints. Dismissed as Post Treatment Lyme Syndrome or psychosomatic, up to 20% of initially treated patients will be left struggling with these still unresolved, sometimes debilitating problems.