who Thinks they have Lyme?

Discussion in 'Fibromyalgia Main Forum' started by clerty, Jul 15, 2008.

  1. clerty

    clerty New Member

    I have always thought that but no doctor belives me I am fed up arguing with them all the symptoms of Lyme I have
    stiff neck
    long spiral shaped floaters and circular shaped ones
    pain all over
    strange Nuerological symptoms
    strange Heart symptoms
    also as a child I had Bells Palysy twice.
    tremors and shakes


  2. bunnyfluff

    bunnyfluff Member

    about 40 people here in the last year or so have found out they had lyme (me included!)

    I never remember a tick bite, never had a rash, and tested neg. the first time. I subsequently had 2 positive tests since.

    Anyone with neurological symptoms should highly suspect lyme. With the Bells palsy, I would think that with type of history they would WANT to test you!!

    Symptom refresher:

    Lyme Disease ( commonly misspelled as Lime or Lymes ) 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.

    Lyme Disease, SYMPTOMS & CHARACTERISTICS, a compilation of peer-reviewed literature reports

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscreet 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.

    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 & the US 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.

    Free Canadian Lyme Disease Brochure

    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 effect from alcohol and possible worse hangover

    Several ppl here got the Igenex test sent directly to them (it is the most reliable) and had the blood drawn at a lab. There are a lot of people to help you, if you start to do research.

    Thanks for bringing it front and center, and I wish you luck in getting a Dx.

  3. bunnyfluff

    bunnyfluff Member

    Most Dr's don't know that Elisa lyme test is about 15% accurate.

    CD-57 is also a good test.

  4. monicaz49

    monicaz49 New Member

    I have quite a bit of your symptoms...and it does sound like lyme..but it could also very well be CFS.

    I have an igenex positive test.
    However, do I believee 100% that I have lyme?? No.
    I research alot on it and will always keep educated on it but am not trying to treat w/ long-term antibiotics at this time.

    I did attempt to about a year ago with no change in symptoms and the antibiotics were hard on my liver.

    [This Message was Edited on 07/15/2008]
  5. Rafiki

    Rafiki New Member

    re Lyme. I posted the link on the Lyme board earlier today.

  6. clerty

    clerty New Member

    For your replies