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 People are always asking what my symptoms are.  It's so difficult to explain in one short conversation - where do I even begin?  Each day is different, and each person is different.  The Lyme bacteria make their way into EVERY part of our bodies, and the longer we have it, the worse it is.  

 

Most people are surprised to hear that this can be a fatal disease.  Often times, it's when the spirochetes make their way to the heart or the brain.   Deaths are often labeled things such as "cardiac arrest" without any reference to Lyme.    

 
For me, the symptom I struggle with the most is my pain.  I have lived the past 10 years with such debilitating back, hip, leg and foot pain that my activities are severely limited - it's very difficult to stand and difficult to sit, for any amount of time.  My nerves are so tight that my hips, legs, and arms feel like a rubber band about to snap.  The more I walk, the tighter it gets.  The only time I'm somewhat ok is when I'm lying on my bed with a heating pad or in an Epsom salt bath.  And it is only getting worse over time.   I’ve been taking narcotics for years just to get through my days, which has not been good for my liver!  I hope to one day wean off of them and then be pain free!!   
 
Below is a more extensive list of chronic Lyme symptoms.  Each person is different, but one thing rings true – it’s amazing how these bacteria can infiltrate our entire bodies and create a war inside of us! 
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Comprehensive List of Chronic Lyme Symptoms

 

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

Nerve pain
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

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