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    Old 03-25-2005, 03:23 PM   #16
    bbird
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    Location: CT
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    Re: Symptoms Listings - PLEASE CONTRIBUTE

    Female
    43
    Onset of symptoms: February 2003

    Severe fibromyalgia pain; started as point pain, but has progressed to where i have patches of skin (like inside knee to ankle area, inside wrist area from wrist to elbow) that are incredibly painful to the touch. it feels like there's tremendous inflamation or something. patches change locations constantly
    Joint Pain
    Horrific Fatigue
    Severe Headaches
    Memory Problems (cannot find particular word)
    Concentration poor
    Balance problems
    Double/blurred vision
    Ringing in Ears
    Tingling at ends of extremeties
    Eyes burning - dry & hot
    Weight gain (but 50 percent of the time i'm in bed?)
    Heart races really bad
    Increase in blood pressure
    Increase in cholesterol & triglycerides
    Alcohol intolerance
    nausea
    stomach pain
    difficulty swallowing
    Low normal temperature (98 degrees) with frequent low grade fevers
    Bone pain
    Sleep problems
    Profuse Sweating
    Tongue Soars
    Itchy all over
    Jaw Pain
    Depression

    Not having a good time, that's for sure!

     
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    Old 03-26-2005, 08:07 AM   #17
    hdnighttrain
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    Re: Symptoms Listings - PLEASE CONTRIBUTE

    Female, age 34, RN
    Live in southwestern PA

    symptoms for over 1 year, not diagnosed but see a rheumy in April,

    imbalance, dizzy, swimmy sensation
    heavy, weak limbs arms and legs
    tingling of extremities
    heat and cold intolerance
    shakyness
    anxiety/panic attacks
    acne
    tremors/head bob
    ear stuffiness/itching
    dry skin patches/ never had a bullseye rash
    itchiness
    visual disturbances(increased floaters/flashes/sparks of lights/dimming of vision/blurry vision)
    shimmering in the distance like a heat wave effect
    burning of skin especially top of shoulders and neck
    neck pain/shoulder pain and stiffness
    acid reflux
    severe menstrual cramps
    clumsyness/motor skills off
    cognitive issues, hard to read, spell, recall names and words
    much more but these are the biggest ones for me, have been diagnosed with fibro but not convinced as I live with these things on a daily basis and dont have the typical flares.

     
    Old 03-28-2005, 06:35 AM   #18
    230lakelady
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    Re: Symptoms Listings - PLEASE CONTRIBUTE

    Are you being treated with any thing now. My daughter has almost the same symptoms and they are calling her condition Charcot-Marie-Tooth.

     
    Old 06-25-2005, 10:23 AM   #19
    Roman77
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    Re: Symptoms Listings - PLEASE CONTRIBUTE

    Female 28 living in Madison, WI....

    Dxd Lyme Twice -

    At age 15 equivocal tests through 1991-92 but after battling for a year a doctor finally agreed to treat. Lyme went dormant. Began relapse 3 years later with onset of periodic symptoms with increasing regularity over next 13 years. Although these symptoms and episodes at the time were overlooked as being lyme related, only looked and treated as seperate events. Including:

    Colds, flus, and sinus infection after sinus infection, too numerous to count.

    2 boughts with mono (1997, 2000) that each lasted 6 or more months causing me to lose 2 different jobs!

    Dxd with Hypoglycemia in 2000.

    Dxd with Raynauds syndrome in 2001.

    About 15 months of strep (onset 2002), case after strep in a row leading to tonisl removal at age 27 (2004) - requiring 2 emergency surgeries to stop the bleeding and a loss of another job due to slow healing and recovery!

    4 months of reoccuring pink eye leading to a dramatic loss of vision (both eyes) in 3/05 leading to a diagnosis of Optic Neuritis in 4/05.

    EEG/VER (visual evoked potential) testing confirmed episode of Opitic
    Neuritis in 4/05, permanent damage to communication highway between eyes and my brain.

    Tested for Lyme using Elisa/Titer...all the rest over 4 different times from 3/05-5/05 all came back negative.

    Spinal Tap done (4/05) all normal....only 20% of people with Chronic Lyme will test +

    MRI scans of brain/c-spine in 3/05 showing multiple areas of extreme dymelynation of white matter in vision centers, speech, as well as cognitive areas.

    Almost diagnosed MS....would have been if had not gone to LLMD in MO in 5/05 where I finally tested positive in both IgMs ( *for bands 18, 23-25, 28, 30, 31, 34, 39, 41, 45, 58, 93)and IgG's (*for bands 30, 31, 39, 41, 45, 58, 66, 93) which meet CDC requirements plus an extra 5 bands or so!

    Dxd CNS Lyme in 5/05.
    Dxd with Hypercoagulation.
    Dxd with Chronic Instestinal Yeast...ongoing treatment of Nystatin.
    Dxd Neurotransmitter Deficent with almost non existent levels of Seratonin, Dopamine, Norepinephrine, Epinephrine. On Amino Acid Protocal for Non-Parkinson Related Diseases.

    Beggining treatmet 5/05....treated with 200mg Doxy 2 bid...3 days later Herxed for 4 weeks. 6/18 restarted Doxy at 100mg 1 bid...1 day later Herxed...still waiting for end of Herx to restart treatment at 100mg of Doxy 2 times a week for next 3-4 weeks, at that time will then add sliver of Flagyl until can tolerate higher doses of treatment. If this doesn't work then LLMD is suggesting IV treatment. Hope this works.

    Symptoms: (list is long...onset of these beginning 1/05, acute by 3/05)

    chronic, severe fatigue and exhaustion
    swollen, aching, stabbing pains in all joints (varies from day to day where!)
    cracking/popping joints - chronic pain
    sore/stiff/popping jaw almost like TMJ
    bruised, painful muscles all over body
    heart palpatations
    chest pains
    impaired gait (sometimes)
    severe stabbing random pains (trunk/head/stomach/spine/etc)
    intense, chronic headaches (blinding stabbing pains/pressure)
    impairment of muscle coordination (speech became very difficult)
    loss of short term memory (cannot remember events from 5 mintues ago!)
    loss of ability to problem solve/make decisions (produces anxiety attacks)
    stuttering speech patterns/slurring of words
    loss of ability to use word recall
    saying/writing wrong words/letters (mixed up or entirely wrong!)
    cannot follow conversation becomes to overstimulated/complex for me
    inability to concentrate
    loss of vision in both eyes (gradually came back - now have multiple images/floaters/auras/after images/grainy-fuzzy vision in both)
    chronic sore throat
    decrease in balance
    vertigo/dizziness
    motion sickness
    itchy all over (just can't seem to scratch the right spot)
    sensitive points of skin/body - cannot be touched or excruiatiing pain!
    buzzing/ringing in ears, throughout entire body
    numb/tingly feeling throughout extremities
    red spots/blotches after bath/shower/stress
    change in taste, decrease of smell
    extreme thirst
    hair loss
    photosenstive/sound sensitive (to the point of wearing ear plugs to run water for a bath sometimes!)
    nausea
    mouth ulcers
    nose ulcers
    low body temp (96.8 - 97.9)
    some days high fevers (101-103)
    hot/cold spots (most times one side of bod is cold/other is hot!)
    chronic cold feet/hands causing pain and discoloration
    severe pain in heel of both feet, unable to stand for more than a minute!
    insomnia - when can sleep only fitful for 2 hours in a row!
    night sweats
    vivid dreams/nightmares
    muscle twitching/electric charges in legs/arms/neck
    tremors in fingers/toes/neck
    twitching eye muscles
    swollen glands
    multiple allergies
    dry skin
    numb arms/legs/feet/face (comes and goes, lasts hours or days!)
    pressure in ears
    stiff neck/grinding and swelling of vertebraes
    burning/dry eyes
    extreme mood swings
    no patience
    consistently hard to swallow
    weight gain 20 pounds in 3 months (in bed more than 50% of the time)
    intolerable of exercise


    Could keep listing them off but these are the main ones.... Can't wait for days when I can feel just plain "crappy" agin rather than super extra crappy! This lengthy battle has so far cost me 3 jobs, more money than I can count, a good deal of my youth, and a few friends as well. Nasty business this Lyme...nasty indeed.
    __________________
    "Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

     
    Old 06-25-2005, 04:09 PM   #20
    TeeDee
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    Join Date: May 2005
    Location: Outside of Portland, OR.
    Posts: 177
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    Re: Symptoms Listings - PLEASE CONTRIBUTE

    49 yr.old female
    Born and raised on the northern Oregon coast, now living near Portland.

    Was an avid camper and woods-playing child/adolescent. At 17 had severe infectious mononucleosis with flu-like symptoms and awful fatigue that lasted over three months. No memory of rash.

    At 18 had nasal polyps removed and went on allergy shots. Continued having allergy problems but dealt with it.

    Got married and had two healthy children. Had a bout with optic neuritis at age 27 when I learned that it was a good sign of MS. Watched for more symptoms of MS and at the age of 28 had more nasal polyps removed but wasn't diagnosed with MS until 1992 at age 36 after another case of optic neuritis.

    Diagnosed with Lyme Disease in Sept. of 2004. For the past four years have had continuing "MS" problems and frequently need to use a wheelchair. These include:

    Dizziness
    Numbness, mostly on one side
    Fatigue
    Brain "fog"
    Foot-drop

     
    Old 04-22-2008, 08:29 AM   #21
    SUZYQ1957
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    Location: Menomonie, WI, USA
    Posts: 3
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    Thumbs up Re: Symptoms Listings - PLEASE CONTRIBUTE

    Female 50 years old
    No positive Bb results.
    Possible Anaplasmosis
    Killer Cell Count 30
    Symptoms:

    Symptoms Since 2000
    Left knee gives out when climbing steps – inconsistently -

    Symptoms Since 2004
    Right toe trips or drags on occasion
    Fall down when thrown off balance
    Inability to correct off balance or “catch myself”
    Several months stiff neck in the morning – Tried changing positions,chiropractors, ortho pillows.
    Insomnia – usually helped with melatonin
    Occasional recurring rash on lower stomach – same location –no itching
    Zero tolerance to alcohol – Progressively worsening
    Progressive Symptoms Since April:
    No real pain in muscles or joints
    Menstrual Cycle stopped (no other symptoms of menopause)
    Right hand cold/white –
    Right side of face, tongue, and arm tingling and numb
    Balance issues – right leg/hip muscles weak
    Toe drop when walking –both feet
    Trip often/fall easily – Legs and feet feel very “Heavy” Occasionally arms as well
    Startled greatly by normal noises: Phone ringing, Car horn, dog barking, Toaster coming up
    Symptoms Since start of 400 mg Doxycycline Daily –
    -No noticeable difference of symptoms when started taking 200mg/daily -

    First Week- 400 mg daily – all have since diminished
    Constant Headache – located only in forehead area
    Nausea – flushed feeling
    Night sweats
    Fatigued, body aches, exhausted

    Since first week – Progressively – All listed since 2000 in addition:
    Much Worsened Balance – Fall/trip more easily
    Drop things I’m holding
    Brain Fog
    Can’t think of correct word usage – I am otherwise articulate!
    Typing, handwriting, and small motor skills diminished
    Spelling difficulty
    Drift off into thought – daydream
    Difficulty staying with a task through completion
    Flushed feeling – Red face only – Chilled body temp - chilled
    Electric shock sensation in lower legs
    Lower leg tremors
    Shuffling walk – tiptoe walking
    Cry easily – overly emotional
    Low energy/interest to do any activity
    Chills/prickly feeling skin
    Often have to clear throat
    Red dots and small rash appearing sporadically on chest/stomach
    Constant sense of falling over backwards
    Pain and stiffness in muscles and joints – Moves daily from one location to another
    Have been on 2 grams IV Rocephin since January.
    When will symptoms improve????

    What if it's not Lymes Disease???

    Is there anyone that has had a similar experience?

    Last summer I spent 3 days at Mayo in Rochester - Many things ruled out all things normal.
    Three years ago I was white-water rafting and jogging!!!
    Only went to the doctor for an annual exam- Never sick!
    I know neurological issues take time to resolve - I just need some encouragement.

     
    Old 04-22-2008, 08:52 AM   #22
    SUZYQ1957
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    Join Date: Apr 2008
    Location: Menomonie, WI, USA
    Posts: 3
    SUZYQ1957 HB User
    Thumbs up Re: Symptoms Listings - PLEASE CONTRIBUTE

    Female 50 years old
    No positive Bb results.
    Possible Anaplasmosis
    Killer Cell Count 30
    Symptoms:

    Symptoms Since 2000
    Left knee gives out when climbing steps – inconsistently -

    Symptoms Since 2004
    Right toe trips or drags on occasion
    Fall down when thrown off balance
    Inability to correct off balance or “catch myself”
    Several months stiff neck in the morning – Tried changing positions,chiropractors, ortho pillows.
    Insomnia – usually helped with melatonin
    Occasional recurring rash on lower stomach – same location –no itching
    Zero tolerance to alcohol – Progressively worsening
    Progressive Symptoms Since April:
    No real pain in muscles or joints
    Menstrual Cycle stopped (no other symptoms of menopause)
    Right hand cold/white –
    Right side of face, tongue, and arm tingling and numb
    Balance issues – right leg/hip muscles weak
    Toe drop when walking –both feet
    Trip often/fall easily – Legs and feet feel very “Heavy” Occasionally arms as well
    Startled greatly by normal noises: Phone ringing, Car horn, dog barking, Toaster coming up
    Symptoms Since start of 400 mg Doxycycline Daily –
    -No noticeable difference of symptoms when started taking 200mg/daily -

    First Week- 400 mg daily – all have since diminished
    Constant Headache – located only in forehead area
    Nausea – flushed feeling
    Night sweats
    Fatigued, body aches, exhausted

    Since first week – Progressively – All listed since 2000 in addition:
    Much Worsened Balance – Fall/trip more easily
    Drop things I’m holding
    Brain Fog
    Can’t think of correct word usage – I am otherwise articulate!
    Typing, handwriting, and small motor skills diminished
    Spelling difficulty
    Drift off into thought – daydream
    Difficulty staying with a task through completion
    Flushed feeling – Red face only – Chilled body temp - chilled
    Electric shock sensation in lower legs
    Lower leg tremors
    Shuffling walk – tiptoe walking
    Cry easily – overly emotional
    Low energy/interest to do any activity
    Chills/prickly feeling skin
    Often have to clear throat
    Red dots and small rash appearing sporadically on chest/stomach
    Constant sense of falling over backwards
    Pain and stiffness in muscles and joints – Moves daily from one location to another
    Have been on 2 grams IV Rocephin since January.
    When will symptoms improve????

    What if it's not Lymes Disease???

    Is there anyone that has had a similar experience?

    Last summer I spent 3 days at Mayo in Rochester - Many things ruled out all things normal.
    Three years ago I was white-water rafting and jogging!!!
    Only went to the doctor for an annual exam- Never sick!
    I know neurological issues take time to resolve - I just need some encouragement.

     
    Old 05-03-2008, 11:31 AM   #23
    Braveheart07
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    Join Date: Nov 2007
    Location: Seaford, NY
    Posts: 134
    Braveheart07 HB User
    Re: Symptoms Listings - PLEASE CONTRIBUTE

    SuzyQ--
    I have very similar symptoms to yours---8 months ago I was hiking up Half Dome in Yosemite--now I can barely walk without a cane--even then I have balance problems---I was told by 2 neurologists that I have ALS(one was the head of neurology at Columbia Presbyterian in NYC)--so no matter how long it takes IV Rocephin to work (I started yesterday)it's better than the alternative----I've read that it can take months to see any improvement. I'm not a very patient person, but what choice do I have ?? Read the stories on this board--there is a wealth of information---and ask questions---there are very helpful, knowledgeable people here---
    Hang in there---there is light at the end of the tunnel !
    Feel better--
    Doug

     
    Old 05-04-2008, 09:21 PM   #24
    tiresome
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    Join Date: Nov 2004
    Posts: 167
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    Re: Symptoms Listings - PLEASE CONTRIBUTE

    Female
    Age 45
    Bitten in 1999 or 2000, top of head couldn't see if I had a rash but did have a sharp hard spot for weeks after.

    Had strange sensation in head like a shock or ripple.
    confusion
    word finding difficulty, can think of what word begins with but not word
    shin pain
    strange itching in feet when lay down for bed, goes away when I get up comes back when I lay down
    foot, hand and face itching
    foot pain, wake up with feet that feel like I have been standing hours
    face discolored, people keep telling me makeup needs blended but not wearing any, stops right at jaw line
    severe fatigue in body
    mind fatigue (brain fog?)
    right eye vision suddlenly went weird stayed that way 4 months but improved just not gone completely (lost 5% perifial (sp) but came back)
    night vision problems
    blurry vision
    eye muscle twitching
    muscle twitching
    stabbing pains, anywhere jaw, chin, collar bone, legs, arms ect
    severe calf pain both legs, affects walking
    low normal temp, run low grade fever a couple weeks a month with chills
    arm and hand pain, just holding a milk jug can feel like 50 lbs
    loss of balance
    ear pain, had mastoiditis twice last year
    cysts in sinuses, 2 1/2 centimeters right and 2 centimeters left
    told I limp sometimes but not aware
    sound sensitivity, bubbles in pop can sounds like rain pounding on a tin roof
    headaches
    night sweats (or any time I sleep)
    arms and legs go numb whenever they want
    weight gain (inablility to do anything most the time with out resting a lot)
    heart palpitations (especially when startled while sleeping) pair, multi PVC's, skip beats
    Halucinate (told not true hals because I will realize orange lion is a towel draped on tub ect)
    neck pain (gland back of neck always swollen)
    All symptoms come and go, thankfully never all at once or I wouldn't have survived until finally getting diagnosed last week. Thank God for this board or I would have agreed with docs that said tests normal so your normal go to a therapist. (After reading list can almost think I am nuts except many of you have same symptoms)
    Also as a child I remember being bitten by ticks many times. Always seemed to be in my ears.

     
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