What symptoms are different in CFID's & Lyme?

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Dec 11, 2005.

  1. HppeandMe

    HppeandMe New Member

    I was wondering if anyone knows what symptoms are different in Lyme and CFID's. If you know me you know that I have had exposure to tics. However, when I go to Chronic Fatigue doctor they say I fit Chronic Fatigue to a T. When I go to a Lyme doctor they say I fit Lyme to a T although none of the tests have come back positive even through Igenex. The Lyme dcotor wants to start me on a Pic Lyme for Lyme disease this week and I am willing to give it a try although I hear it hurts like crap and is quite pricey (insurance may not cover and I have to pay upfront). If it doesn't work I am on may way to disability fast. In any case, how can we tell which one it is if the majority of the symptoms overlap? Which ones don't?
  2. hopeful4

    hopeful4 New Member

    Just wanted to say that lyme disease is a clinical diagnosis. Symptoms can and do overlap. I was previously DX w/CFIDS/FM, and just this year with Lyme. I asked my doctor: "Does that mean I don't have CFIDS/FM?" She said, no, I have them all. Right now we're getting busy with treating the Lyme.

    I copied and pasted this from a previous post by karatelady52. Hope it helps. (I'm going to paste in one on CFIDS to follow.)

    Below is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover
  3. hopeful4

    hopeful4 New Member

    Lists of Symptoms of CFIDS
    From Katrina Berne,Ph.D., Running on Empty, The Complete Guide to CFS (CFIDS), 1995 pp. 57-60.

    The following list of symptoms is grouped into three general categories with approximate percentages of PWCs [person with CFIDS, or CFS] who experience them. These percentages are based upon information reported by Drs. Bell, Cheney, Fudenberg, Goldstein, Jessop, Komaroff, Peterson, and two surveys (Kansas City and Phoenix). Grouping symptoms into categories is done for convenience. It is likely that all symptoms are related to neuroimmune dysfunction.

    General or Physical Symptoms:

    Fatigue, often accompanied by nonrestorative sleep, generally worsened by exertion: 95-100%
    Nausea: 60-90%
    Irritable bowel syndrome (diarrhea, nausea, gas, abdominal pain): 50-90%
    Chronic sore throat: 50-90%
    Fevers/chills/sweats/feeling hot often: 60-95%
    Muscle and/or joint pain, neck pain: 65-95%
    Bladder/prostate problems, frequent urination: 20-95%
    Low blood pressure: 86%
    Recurrent illness and infections: 70-85%
    Malaise: 80%**
    Heat/cold intolerance: 75-80%
    Painful and/or swollen lymph nodes: 50-80%
    Systemic yeast/fungal infections: 30-80%
    Fungal infection of skin and nails: 71%
    Weight gain: 50-70%
    Increased/severe PMS: 70%
    Swelling, fluid retention: 55-70%
    Shortness of breath: 30-70%
    Subnormal body temperature: 65%**
    Severe allergies: 40-60%**
    Sensitivities to medicines, inhalants, odors, and foods: 25-65%
    Difficulty swallowing: 55-60%
    Heart palpitations: 40-60%
    Sinus pain: 56%
    Rash or flushing of face: 35-45%
    Chest pain: 40%
    Hair loss: 20-35%
    Eye pain: 30%**
    Pressure at the base of the skull: 30%
    Weight loss: 20-30%
    Tendency to bruise easily: 25%
    Vomiting: 20%
    Other general symptoms reported: Endometriosis; dryness of mouth, eyes; pressure sensation behind eyes; frequent canker sores; periodontal disease; pain in teeth, loose teeth, and endodontal problems; cough; TMJ syndrome; Mitral valve prolapse; Carpal tunnel syndrome; Serious cardiac rhythm disturbances; Pyriform muscle syndrome, causing sciatica; Impotence; Thyroid inflammation; Hypoglycemia or hypoglycemia- like symptoms; Swelling of nasal passages

    Neurological/Central Nervous System-related Symptoms:

    Confusion; inability to think clearly: 75-100%
    Concentration/attention deficit: 70-100%
    Sleep disorder/disturbance (insomnia, unrestorative sleep, unusual nightmares): 65-100%
    Muscle weakness: 85-95%
    Headache: 75-95% (daily headache: 50%)
    Memory problems (especially short-term memory): 80-90%
    Photosensitivity: 65-90%
    Disequilibrium, spatial disorientation, dizziness, vertigo: 60-90%
    Spaceyness, light-headedness: 75-85%
    Muscle twitching, involuntary movements: 55-80%
    Aphasia and/or dyscalculia: 75-80%
    Alcohol intolerance: 45-75%**
    Seizure-like episodes: 70%** (seizures: 2%)
    Coordination problems/clumsiness: 60%
    Paresthesias (numbness, tingling or other odd sensations in face and/or extremities): 25-60%
    Visual disturbance (scratchiness, blurring of vision, "floaters"): 45-55%
    Episodic hyperventilation: 40-45%
    Fainting or blackouts: 40%
    Strange taste in mouth (bitter, metallic): 25%
    Temporary paralysis after sleeping: 20%
    Earache: 20%
    Other symptoms reported: decreased libido; hallucinations; alteration of taste, smell, hearing; tinnitus

    Emotional/Psychological Symptoms:

    Anxiety: 70-90%
    Mood swings, excessive irritability, overreaction: 70-90%
    Depression: 65-90%
    Personality change: 55-75%
    Panic attacks: 30-40%

    These figures represent a range of percentages of reported symptoms in different studies. Patients do not necessarily experience these symptoms all the time. In most cases only one-third to one-half of those reporting individual symptoms indicated that they experienced the symptom at all times. In my survey of the Phoenix area group, figures were compiled to indicate the average total number of symptoms experienced all of the time (11 symptoms) and the average total number of symptoms experienced by each patient some of the time (18.6 symptoms).

    PWCs may experience symptoms other than those listed above. Some of the symptoms reported may have been experienced prior to the onset of CFIDS in a milder or different form. Additionally, other illnesses or conditions may exist simultaneously with CFIDS, complicating the diagnostic problems and often causing lack of clarity as to which symptoms are attributable to which conditions.

  4. hopeful4

    hopeful4 New Member

  5. tansy

    tansy New Member

    and other problems, mostly genetic, were contributing to my illness and disability. When all are taken into consideration it's no wonder I ended up in such a mess.

    Learning that I had borreliosis/lyme filled in some gaps that a Dx of just ME/CFS left unanswered, other chronic infections are invovled too. So whilst there are overlaps in symptoms, I was able to indentify those related to the chronic borrelia/lyme.

    An increasing number are testing postive or being clinically Dx with lyme disease. I knew this was a strong possibility before it was confirmed, but I can understand the confusion others feel.


    Atm I am not using pharmaceutical ABx, but I am making progress.

    For years I was severely disabled, and not just through fatigue and malaise; it made the simplest of tasks impossible, very difficult or exhausting. Now I am slowly getting my life back and am able to sustain higher levels of activity without the classic ME/CFS payback. My Tx are aimed at more than treating the borrelia, but it's been an important factor in making progress after all these years.

    love, Tansy

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