Hi all....know I've been around for a while but like Jules just never got around to posting my situation up here for everyone. So here goes...
28 was living in Madison, WI pre-lyme....moved home to my parents in Hastings, MN b/c couldn't live on my own any longer this past summer...now making treks to Madison when able to. Hoping to move back to Madison for good in the next 6 months.
Applied to social security for disability in 6/05...still waiting for their decision. But have been awarded long term disability from my past job. So that's a definite god send.
Am seeing a llmd in Springfield MI....Dr. Charles Crist.
Have been dxd with Lyme twice -
AFter trip to east coast with my family at age 15, began getting sick/pain a few months later. Now remember had a big swollen red spot on my shin...didn't look like a bulls eye rash at all. But all tests through 1991-92 were negative or indeterminate but after battling for a year a doctor finally agreed to treat. Lyme went dormant. Began relapse 3 years later with onset of symptoms with increasing regularity over next 13 years, until becoming acute this past March in an alarming fashion starting with Optic Neuritis in both eyes. All of these symptoms and episodes at the time were overlooked as lyme related, and were sadly 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 case of strep in a row leading to tonisl removal at age 27 (2004) - requiring 2 seperate emergency surgeries to stop the bleeding and a loss of another job due to slow healing and recovery!
4 months of reoccuring pink eye (up till then had never even had pink eye!) leading to a dramatic loss of vision in both eyes upon waking up one morning 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, forget what it's actually called but it means i have semi-permanent damage to communication highway between eyes and my brain. docs don't know if or when it will ever heal.
Tested for Lyme using Elisa/Titer...over 4 different times from 2/05-5/05 all came back negative.
Spinal Tap done (4/05) all normal....less than 3% 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. Had to some doctors suggested MS,would have been diagnosed with it but my family wouldn't accept it so convinced me to see Dr. C in 5/05.
Then I finally tested positive after sending for results from Ingenex labs. Postive 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! So much for all the other docs being right about being negative for Lymes and having MS.
Dxd Chronic Late Stage CNS Lyme in 5/05. Don't know if have any of the coinfections as didn't have money to test for them, but llmd is treating me as if have them. When I go to visit his office again in March am going to do tests finally and see if that's part of the problem to why i am not getting better faster.
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.
Began treatment in 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 for 1 week...this is how my pattern has been for all orals since beginning of treatment. Herxes left and right. Have been on Zithro, Doxy, Flagyl, Clindamyacin, Biaxin, Quinine, Hydroxychloroquine, and 3 rounds of IV through a Hickman Port; Rocephin 1 round and Primaxin 2 rounds. Both of these had to be pulsed as well since I couldnt' tolerate them. Am currently on Ceftin, 1/4 of a 500 mg tab every other day. All my body will handle. Any more than that and I'm in a herx for a week or more. Still have a long way to go.
Anyway here's a list of symptoms too ~
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
impaired gait (sometimes)
severe stabbing random pains (trunk/head/stomach/spine/etc)
intense, chronic headaches (blinding stabbing pains/pressure)
impairment of muscle coordination
loss of short term memory (cannot remember events sometimes from 5 mintues ago!)
loss of ability to problem solve/make decisions (produces anxiety attacks)
loss of ability to remember correct words/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
motion sickness to the point of throwing up when in car....hence no more driving for me.
itchy all over (continue to do all the detox I can all the time, and yet still i itch.)
sensitive points of skin/body
buzzing/ringing in ears, throughout entire body
numb/tingly feeling/pain throughout extremities/head
red spots/blotches on all joints after bath/shower/stress
swollen hands/knees/ankles, very red/painful/mottled
change in taste, decrease of smell
photosenstive/sound sensitive (to the point of wearing ear plugs to run water for a bath sometimes!)
nausea, almost constant
low body temp (96.8 - 97.9)
some days high fevers (101-103)
sudden onset of chills
hot/cold spots (most times one side of bod is cold/other is hot!)
burning or icy spots..feel like a dime size spot is on fire or frozen (varies on body)
chronic cold feet/hands causing pain and discoloration
severe pain in heel of both feet, unable to stand for more than a few minutes
insomnia - when can sleep only fitful for 2 hours in a row
muscle twitching/electric charges in legs/arms/neck
tremors in fingers/toes/neck
twitching eye muscles
extreme dry skin
numb arms/legs/feet/face (comes and goes, lasts hours or days!)
pressure in ears
stiff neck/grinding and swelling of vertebraes
extreme mood swings
intolerable of exercise, alcohol, or sugar....increases severity of all symptoms ridiculosuly.
Could keep listing them off but these are the main ones....Anyway sorry this is so long, but felt motivated to actually cut and paste most of this from a post i put on the board months ago on a symptoms list thread and just update it a bit to what's going on now.
Can't wait for days when I 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. anyway I am so glad to have you all on this board...don't know what I'd do without all of your support over th past months and in the future.