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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.





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