For
ease in downloading and printing, this Master
Lyme Symptom List is available in PDF format. Short
Symptom List It
is estimated that 30-50 percent of acute Lyme disease patients develop chronic
Lyme (chronic borreliosis; neuroborreliosis). That is, despite antibiotic and
other treatment, the Borrelia burgdorferi organism remains alive and well,
periodically causing a worsening of symptoms or causing new symptoms to appear.
Two-thirds of those bitten by an adult tick or tiny tick nymph never even know
they've been bitten, and fewer than 50 percent of those finding ticks or nymphs
feeding on them develop the "classic" bull's-eye rash that the CDC stipulates
as one of its diagnostic criteria; many people with Lyme never exhibit any type
of rash. There are
over 300 known strains of Bb and at least six genotypes, increasing the
difficulty in testing people for its presence. This is compounded by the fact
that the majority of public health and commercial labs such as Quest Diagnostics,
LabCorp, Unilab, etc., use a hierarchy of tests, established by the CDC and followed
by the AMA. The first of test to be done, the ELISA, is known to miss the organism
in the samples tested. Only when this less-than-accurate ELISA is positive is
a second test, the Western blot, ordered. Since
these labs use the Centers for Disease Control & Prevention's epidemiological
criteria, which even the CDC says is not to be used for diagnostic purposes, thousands
of people each year who get negative ELISA and Western Blots are told by their
doctors that they do not have Lyme, when in fact they do. Many
of those who go on to develop chronic Lyme do so because of not getting properly
diagnosed right away, or not getting the appropriate treatment (too many doctors
still prescribe too-short a period of antibiotics). Others keep testing negative
for the disease because the tests used do not detect the strain they have, or
the Bb is in one of its many presently undetectable morphs. Over
the past several years, as independent labs such as IgeneX and MDL have developed
more sensitive tests for Borrelia and other tickborne diseases, an increasing
number of people who were originally diagnosed with CFS and FM are turning up
positive for Borrelia and, frequently, one or more of the other tickborne
diseases. Others who are seronegative for Bb (getting false negatives on
tests) respond to appropriately aggressive antibiotic therapy, and may later show
positive on the Western blot IgM (early or reactivated infection) and/or IgG (chronic
or ongoing infection) tests, despite negative ELISAs and earlier Western blots. Note
on the following symptoms: Many of these are symptoms common to other diseases.
Getting a proper diagnosis for CFS, FM, and CMP is as much ruling out other diseases
(including proper testing and assessment for Lyme and other tickborne diseases)
as it is looking at the clues in dozens of tests and the actual physical exam.
In the case of Lyme disease, however, even if you test negative, many Lyme-knowledgeable
physicians and patients recommend starting on an appropriate antibiotic protocol
for Lyme, testing again after being on the antibiotics for 6-8 months. For
more on Lyme Disease, please see www.anapsid.org/lyme.
For a truncated
symptom list that may be more acceptable to physicians new to Lyme, see the listing
included in Joseph Burrasano MD's Diagnostic
Hints And Treatment Guidelines For Lyme And Other Tick Borne Illnesses.
AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE
Abnormal sensitivity to hot or cold Allergies (nasal, other; new, increased
or worsening) Canker sores (frequent) Chills and/or shakes when hungry
(may occur instead of feeling hungry) Cold hands and feet Extreme fatigue
after minimal exertion Feeling hot or cold often Flu-like symptoms, on-going
or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5
F / 37.5-38.6 C), chills Hair loss (alopecia) Herpes
simplex or shingles rash Increased susceptibility to infections Low-grade
fevers Low blood pressure (below 110/70) Low body temperature (below
97.5) Lymph nodes painful, swollen (in neck; under arms) Night sweats
(not related to menopause or fever) Orthostatic Intolerance (neurally mediated
hypotension) Reactive hypoglycemia and insulin resistance Thirst,
increased Temperature irregularities; often feeling hot or cold irrespective
of actual ambient temperature and body temperature; low body temperature (below
97.6 F / 36.4 C) Thyroid inflammation (acute thyroiditis; hypothyroidism;
Hashimoto's thyroiditis) CARDIOPULMONARY/RESPIRATORY/CIRCULATORY
Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations;
dysrhythmia) Cough Dyspnea (out of breath) or shortness of breath (air
hunger) after minimal or no exertion Heart attack Heart palpitations
Heart pounds so hard it shakes body, bed Pulse skips Serious rhythm disturbances
of heart Sighing, frequent, not related to mental/emotional state Stroke
Vasculitis CENTRAL
NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC
Abnormal CAT, MRI and/or SPECT scans Alcohol intolerance Aseptic meningitis
"Brainfog"; inability to think clearly Difficulty moving tongue
to speak Diminished or absent reflexes Fainting or blackouts; feeling
like you might faint Headaches (frequent, severe, recurring) Hearing fluctuations
(sounds fade then return) Hearing changes, often from day to day (need to
turn up, then down, volume of radio, TV) Joint or arthritic pain not relieved
by NSAIDs (ie, ibuprofen) Libido (decreased) Light-headedness, feeling
spaced-out Migraine headaches Muscle twitching Noise intolerance
Paralysis or severe weakness of limb Parasthesias (numbness, tingling, crawling,
itching sensations) in face, head, torso, extremities Photosensitivity
Radiculitis Seizures; seizure-like episodes Sensory alterations (hyper-
or hyposensitivity) - smell, taste, hearing (noise intolerance) Severe muscle
weakness Syncope (fainting) Tinnitus (ringing/noises in one or both ears)
Touch or weight of clothing on or against body causes discomfort or pain Tremors,
trembling COGNITIVE
FUNCTION Becoming
lost in familiar locations when driving Difficulty with simple calculations
(e.g., balancing checkbook) Difficulty expressing ideas in words Difficulty
moving your mouth to speak Difficulty making decisions Difficulty following
directions while driving Difficulty remembering names of objects Difficulty
remembering names of people Difficulty recognizing faces Difficulty following
simple written instructions Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions Difficulty following
complicated oral (spoken) instructions Difficulty integrating information
(putting ideas together to form a complete picture or concept) Difficulty
putting tasks or things in proper sequence Difficulty paying attention
Difficulty following a conversation when background noise is present Difficulty
making and/or retrieving memories (long/short-term memory deficits) Difficulty
understanding what you read Easily distracted during a task Feeling too
disoriented to drive Forgetting how to do routine things Forgetting the
use of common objects (such as, what to do with the shampoo when you are standing
in the shower) Forgetting how to get to familiar places Impaired ability
to concentrate Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (remembering what to do next) Poor judgment
Switching left and right Slowed and/or slurred speech Stuttering; stammering
Transposition (reversal) of numbers, words and/or letters when you speak and/or
speak Word-finding difficulty Using the wrong word DIGESTIVE/HEPATIC
Bloating; intestinal gas Decreased appetite Digestive chemicals (acid,
enzymes) reduced or absent Esophageal reflux; heartburn Frequent constipation
Frequent diarrhea Food cravings (especially carbohydrates, sweets) Food/Substance
intolerance IBS Liver function impaired; mild abnormalities Increased
appetite Nausea Spleen tender or enlarged Stomach ache, cramps
Vomiting Weight gain or loss EQUILIBRIUM/PERCEPTION
Bite your cheeks or tongue frequently Bump into things frequently Difficulty
discriminating printed matter despite proper vision correction Distances (difficulty
judging when driving; when putting things down on surfaces) Dizziness or vertigo
Dropping things frequently Dysequilibrium (balance problems) Impaired
coordination Loss of balance when standing with eyes closed Perception
(not quite seeing what you are looking at) Some patterns (stripes, checks)
cause dizziness Spatial disorientation Staggering gait (clumsy walking)
Words on printed page appear to jump off page or disappear when staring at them EYES/VISION
Acuity changes not related to prescription changes Blind spots Blurred
vision Conjunctivitis Diminished visual acuity in absence of actual vision
change Drooping eyelid Double vision Eye pain Flashes of light
perceived peripherally Optic neuritis or atrophy Oscillopsia (image jiggles)
Prescription changes more frequently Pressure sensation behind eyes Red
and/or tearing eyes Retinal damage Slowed accommodation (switching focus
from far to near, near to far) Spots or floaters not related to migraines
Swelling around eyes Uveitis and/or iritis Wandering or lazy eye HEAD/NECK/MOUTH
Bell's palsy (facial paralysis, one or both sides) Bruxism (grinding/clenching
teeth) Canker sores Dizziness when you turn your head or move Dry
chronic cough Dry eyes, nose and mouth (sicca syndrome) Pain in ears,
palate, gums Periodontal disease Prickling pain along skin of jaw
Problems swallowing, chewing Runny nose in absence of cold, allergies
Sinus infections Sore spot on the top of your head Temperomandibular Joint
Syndrome (TMJ) Unexplained toothaches Xerostoma (dry mouth) MUSCULOSKELETAL
Arthritic pain that migrates from joint to joint Carpal tunnel syndrome
Frozen shoulder Intermittent joint swelling Joint aches (arthralgia)
Joint pain, without redness or swelling Loss of tone "Lumpy, bumpy"
long muscles Morning stiffness Muscle aches (myalgia) Muscle pain,
stiffness, weakness Pyriform muscle syndrome Reduced range of motion
Stiff neck Writing causes pain in hand, arm shoulder PAIN
SYMPTOMS Abdominal
pain Chest pain Generalized pain Shooting or stabbing pains Painful
tender points (FMS: 11 out of 18 tender points) PSYCHOLOGICAL
SYMPTOMS/MOOD/EMOTIONS
Abrupt/Unpredictable mood swings Anxiety or fear for no obvious reason
Appetite increase/decrease Decreased self-esteem Depression or depressed
mood Feeling helpless and/or hopeless Feeling worthless Frequent crying
for no reason Helpless/Hopeless feelings Inability to enjoy previously
enjoyed activities Irritability; over-reaction New phobias/irrational
fears Panic attacks Personality changes (labile, irritable, anxious, confused,
forgetful) Phobias (irrational fears) Rage attacks; anger outbursts for
little or no reason Suicidal thoughts or suicide attempts SENSITIVITIES
Acute or abnormal reactions to medications Alteration in taste, smell, and/or
hearing Chemicals (alcohol, medications; lower tolerance for) Food sensitivities
Increased perception of and sensitivity to noise Light sensitivity Sensitivity
to odors (able to detect and/or react in concentrations far lower than before
and that healthy people cannot smell) SKIN
/ NAILS Abnormal
scarring Acrodermatitis Chronica Atrophician Blotchy or mottled skin
Bruise easily Bruises may take longer to appear, and/or longer to fade
Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Dermographia (minor scratch pressure on skin leaves vivid red welts) Dry,
itchy skin Easily scar Eczema or psoriasis Fragile nails Frequent
skin irritations Lymphadenosis benigna cutis Nails that curve under or
downward Overgrowing connective tissue (ingrown hair, adhesions, thickened/split
cuticles, cysts, fibroids) Painful skin (abnormal/excessive pain when scratched
or rubbed) "Paper" skin (feels fragile, tissue-thin when rubbed)
Rashes on body, face Vertical ridges or beads in nails SLEEP
SYMPTOMS Abnormal
brain activity in stage 4 sleep Altered sleep/wake patterns (alert/energetic
late at night, sleepy during day Difficulty falling asleep Difficulty
staying asleep (frequent and/or prolonged awakenings) Hypersomnia (excessive
sleeping) Myclonus (restless leg syndrome; occasional jerking of entire body)
Nightmares (frequent, extremely vivid and/or disturbing) Unrefreshing/Non-restorative
sleep UROGENITAL
/ REPRODUCTIVE
Decreased libido Discharge from breast or galactorrhea Endometriosis
Frequent urination Incontinence Impotence Infant: premature; low birth
weight; low muscle tone; failure to thrive Interstitial cystitis Miscarriage
or stillbirth Painful intercourse Painful urination or bladder Pelvic
and/or rectal pain Prostate pain Swollen testicles Other symptoms
worsen before start of menstruation Worsening of PMS OTHER
Abnormal or other changes in sweating Activity level reduced to less than
50% of pre-onset level Burning sensation (internal and/or external) Cancer
Changed voice Changes in sweat odor/body odor Delayed reaction to overactivity/exertion
(onset 24-48 hours after exertion) Electromagnetic (EM) sensitivity (electrical
storms, full moon, affect function of electrical devices) Fatigue, prolonged,
disabling, made worse by exertion or stress Fibrocystic breasts "Galloping"
cholesterol and triglycerides Hair loss (not related to age, hormones, diet,
medication) Hands hurt excessively when put in cold water Handwriting
changes, altering signature and/or other writing Hoarseness Painful, weak
grasp that gives way/lets go Periods of concentrated thinking causes physical
and mental exhaustion, increases pain Sore throat Swelling/Idiopathic
edema (fluid retention syndrome) Symptoms worsened by extremes of temperature
(hot, cold), stress, and/or air travel Symptoms change focus from time to
time, like infection is moving through the body Thickened mucus secretions
(nose, bowel, vaginal) Thickened "sleep" around eyes in mornings
Very attractive to biting flies and mosquitoes Weight changes (usually gain) COMMON
CO-INFECTIONS AND DISORDERS
Babesiosis Cytomegalovirus (CMV) Epstein-Barr virus (EBV) Ehrlichiosis
Herpesvirus HHV6 Iron deficiency Mercury or other metal toxicity
Mycoplasma Systemic mold and/or mold sensitivities Sources
Fibromyalgia & Chronic Myofascial Pain. Devin Starlanyl & Mary Ellen Copeland.
2001. New Harbinger Publications Inc. www.sover.net/~devstar Chronic
Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses. 2001. Katrina Berne.
Hunter House Publishing. www.livingwithillness.com The
Interface of Chronic Lyme Disease, CFS and FM. Bonnie Gorman. In, The Update.
Massachusetts CFIDS & FM Association. 18(3):1, 35-40. Fall 2002. www.masscfids.org Arthritis
Foundation www.arthritis.org American
College of Rheumatology www.rheumatology.org Fibromyalgia
Network www.fmnetnews.com Centers
for Disease Control & Prevention: CFS
www.cdc.gov/ncidod/diseases/cfs Lyme www.cdc.gov/ncidod/dvbid/lyme Jay
Goldstein, MD. (retired 2003) IgeneX,
Inc. www.igenex.com Medical
Diagnostic Laboratories (MDL) www.mdlab.com The
Carousel Network www.tcnsupport.org Melissa
Kaplan Chronic Neuroimmune Diseases
www.anapsid.org/cnd Lyme Disease
www.anapsid.org/lyme |