Hello everyone, I am a 21 year old female from
Long Island, New York, although I feel like I have the health of an 80
year old woman. I go to college in upstate New York and just began my
senior year. This past November, I experience my first of many strange
episodes. I was driving home from school when all of a sudden I felt
this miserable sensation throughout my body, almost like a hot flash.
It felt as if a venom was traveling through my veins from head to toe. I
felt as if I was on the verge of passing out and my heart was racing. I
was very nausea, dizzy, and became extremely weak. I called 911 and
was taken to the hospital, being released later that day with "anxiety".
I didn't think anything of it, and went on with everyday life.
However, a few weeks later, the same thing happened and this is where my
10 month journey began. What started off as these random episodes has
turned my life into a living nightmare, so much as that I am considering
withdrawing from school. These episodes have turned to start
resembling seizures (I have severe jerking of my limbs), but do not
fall into the common criteria for a seizure. From November until now,
getting worse with each month, I feel HORRIBLE everyday. I have had
such strange sensations and symptoms that have lead me to over 25
doctors of every type imaginable, and numerous visits to the ER. I have
recently pieced together that these episodes occur only 24-48 hours
after alcohol use, and since I have stopped drinking, the episodes have
stopped. However, the misery that I feel everyday has only gotten worse
with time. Although I was tested for Lyme by my Neurologist back in
November and had a spinal tap this past July to which both were
negative, I FINALLY tested positive 2 weeks ago when I went to an
infectious disease doctor. Although my ELISA, PCR and Western Blot iGg
test came back negative for Lyme, my Western Blot iGm test came back
positive. This doctor still refused to put me on anti-biotics and
insisted that I come back in a month to re-test. My mom went to a Lyme
Disease Association Forum out in Riverhead and researched a bunch of
ILADS doctors considering my infectious disease doctor was of no help. I
have recently gone to an ILADS doctor who took a series of bloodwork to
be sent to Igenex, but it won't be back until next week. I feel so
confident that I have Lyme due to the uncanny similarities of my
symptoms although I never noticed a rash, but are looking for any
reassurance as to whether anyone else has had some of my symptoms...here
goes the list (I might be here for a while
)
Everyday Symptoms:
-CONSTANT MALAISE (I can't put my finger on what feels wrong but I constantly feel like something just isn't right)
-Visual
disturbances (floaters, flashes, peripheral shadows, what looks like
millions of tiny particles-- it looks like i can see air, words moving
on paper while reading and looks as if the floors is moving like waves
sometimes)
-Ringing, pulsing in ear
-Feeling the need to "pop" my left ear, pressure
-Uncontrollable muscle spasms (hundreds a day all over body)
-Extreme eye twitch in upper eyelid of my left eye
-Creaking/cracking in the base of my skull/neck that is getting worse with time
-Dizziness/the "spins" sensation
-Head rocking (my head shakes up and down in what seems to by rhythm with my pulse)
-Throbbing/pulsing sensation in my head/neck/face(it feels like I can feel my pulse in my brain)
-Shaky hands, arms, muscles (My hands tremble, I notice it a lot when I read magazines because the pages shake)
-Increasingly worse heart palpitations that have been recorded by my cardiologist
-Sensation when I'm laying down as if I am rocking on a boat
-Body rocking (my body actually rocks back and forth involuntarily on occasion)
-CONSTANT FATIGUE ALL DAY, EVERY DAY
-Inability to fall asleep at night
-Body weakness/heaviness
-Irregular menstural cycle
-Sudden muscle jerks/movements
-Loss of balance/tip over while walking/walk into things
-Vibration sensation in my feet
-Feeling as if I can't take a satisfying, deep breath
-Loss of energy
-The chills
-Pressure and sometimes pain in my knees, hips
-Slowed processing of information
-Inability to keep concentration
-Headaches/ sharp pains in the back of my head that last for a few seconds but are persistent
--I'm sure many more that I am forgetting
I
must add that all of this has lead to anxiety and depression which has
only made matters that much worse. I do take .25mg Xanax when I feel
very sick and although I become relaxed, my symptoms do not decrease. I
never have the desire to do anything anymore and I lay around all day
because of how sick I feel. I just started 100mg 2 times a day of oral
doxycyclene but havn't felt any improvement yet. Has anyone had Herx
reaction to anti-biotics and if so, how long did it last?
I need
help...I feel like I have no where to turn and my parents feel so
helpless. I have had every test imaginable from a colonoscopy to MRI's,
MRA's, an EGG, EMG, a spinal tap and countless amounts of bloodwork. I
have seen an infectious disease doctor, a neurologist, cardiologist,
endocrinologist, GI, Opthamologist, Neuro-opthamologist, movement
disorder specialist, and the list goes on. Doctor after doctor has told
me that they can't classify my condition or that this is some kind of
strange anxiety. I truely feel that I know my body and it's not. If
ANYONE can please comment on my story, relay some helpful advice or let
me know if you've had any of my symptoms PLEASE DO, I will appreciate it
more than you know. The past 10 months have turned my life into a
living nightmare and I am losing hope of feeling like my normal, happy
self with each day that passes. The only thing that brings me comfort
is reading symptoms and stories of other people and feeling as if I'm
not alone. I think that it's so wonderful that people can join together
to help eachother and offer advice and consolation and hope that this
will turn out positive for me
Thank you for your time and please feel free to contact me!
Post edited by: michele611, at: 09/21/2007 09:15
This list of symptoms could be mine. I no longer have all of the symptoms all the time. I'm 63 - I can learn to live with this. Wonder how this poor girl is doing now - 6 years later ...
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