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MARYLAND
Tara Betton - Just like everyone else with Lyme I have struggled
for years to find out what was wrong with me. I am 33 years old and
otherwise healthy. Three years ago I started having pain in my lower
right abdomen and was tested by all kinds of doctors for all types
of conditions trying to explain my pain. I have spent thousands of
dollars, filed bankrupcy, lost a relationship with a man I loved
dearly, gave up two careers, destroyed the confidence of friends and
family and lost my sense of self worth trying to figure this out.
Most of this happened because no one else could see my
pain-therefore it did not exist. I stumbled upon a gynecologist (of
all people) who happened to be Lyme literate and THE SUN CAME OUT!
Since I have found her in January of this year I have been diagnosed
with Lyme, Ehrlichiosis, Bartonella, Babesiosis, Mycoplasm Penetrans,
H. Pylori infection, Leptin resistance, high C4a, low MSH and low
VEGF. All it took was someone who had educated herself on a disease
bombarding our area to run some blood tests that no one else had
run. The Ehrilichiosis has also ruined my spine therefore I am also
becoming a regular at my neurosurgeons office. I am on my 5th set of
antibiotics (two different at a time) since February and am herxing
severely even now. Today's visit with the doctor has me going to a
GI because all of the meds are eating away at my stomach. I am out
of work on short-term disability through my employer (which is about
to run out) and am searching for a therapist who will document my
cognitive disability to present to the government for Social
Security Disability. The doctor says that if I had been treated
three years ago when my symptoms appeared I wouldn't be in the
condition I am today. This is the same story that is told over and
over by Lyme patients. If you are new to the disease God bless you
and your family. The road has been very long and very hard and it's
not over yet. Sometimes I wonder if it will ever be.
* * * * * * * *
Michelle Gallagher
- 15 doctors, searching for what was wrong for 1 year, had the tick
at LEAST 2 years prior to getting EXTREMELY sick. Been on ABXs for
18 months, still suffer symptoms, mostly cruching HEAD PAIN! Still
searching for the answer to what can make me better? Do ozone steam,
infrared sauna, numerous supplements, acupuncture and most recently
ONdamed Electro magnetic device. Still suffering! Not ready to give
up hope though...Starting to add some herbs
* * * * * *
Nika Hamblin -
I first became ill in 1991 with a horrible flu that never
seemed to go away. It was followed by horrible unmitigating fatigue
and cognitive losses. For years, I tried to find out what was wrong
but doctors were unable to help until I was finally diagnosed with
Chronic Fatigue Syndrome in 1996. In 1998, after knee surgery, the
surgeon commented that he'd never seen such damage in a person of my
age (I was only 34). Having gained a lot of weight after becoming
ill in 1991, doctors told me to "just lose some weight." I knew
something was wrong with my metabolism but no one believed me.
During all this, I gave birth to two boys, both of whom have
struggled with numerous neurological challenges since birth. Despite
heavy early intervention, each year seemed to bring a new diagnosis:
sensory processing disorder, auditory processing disorder,
oppositional defiance disorder, learning disabilities, gross/fine
motor delays, etc. By some fluke, my oldest was diagnosed with lyme
in 2003 - surprisingly positive ELISA. Not knowing any better, we
did the usual round of antibiotics. However, his immune system was
never the same. His schoolwork suffered, his health continued to
decline. Repeated visits to the doctor revealed only a mysterious
virus. In Jan 2005, more bloodwork was finally performed; no lyme
but a mycoplasma infection. I asked if this could be related to lyme
and the pediatrician laughed at me. It didn't make sense that a 9
year old was so tired all the time so I did my own research. One
tidbit of information really hit home for me; most patients
diagnosed with CFS actually have lyme which can be passed in utero.
Sure enough,all of us have lyme according to positive IGENEX western
blots. My husband also has babesia. The boys are doing incredibly
well; the difference in schoolwork is amazing. A neuropsych eval
with a lyme specialist in summer 2005 showed that his processing
speed and short-term memory had declined more than 75% in 2 years.
But he's in school again and doing really well, with occasional
hiccups in treatment especially with the onset of colder weather. My
husband was on ketek for a year and mepron for babesia but now is
"cured." I continue to struggle after treatment with amoxicillin,
doxycyline, ketek, ceftin, and omnicef. My symptoms continue to
worsen. A visit to a homeopath showed that my body is simply pooped
from fighting infection for so long; until those systems are
corrected with supplements, I probably will not improve. Every day
is a struggle; I can't be the mom I want to be since mobility is
limited. My brain is not the same; I'm not as sharp as I used to be.
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S Whitmeyer - EM rash when I was
15 on trip to TX in 1987. Was taking tetracycline for acne and
continued into my 20's off and on with abx for acne. Throughout my
late teens and 20's had weird symptoms and tested for MS and
diabetes. In 2000 at end of pregnancy had terrible vertigo. Daughter
born with Severe heart defects and Reflux. D had 2 heart surgeries
in first year and 1 stomach (Nisin) surgery for reflux. I'm 34 now
and just diagnosed. First test through Labcorp--negative. Symptoms
worsened: Severe headaches, sore throat, tingling in hand, lip, eye,
and muscle twitches, UTI's, aching wrists, ankles, knees, calves,
shoulders; Extreme irritability, anxiety. Went to Neurologist. Told
me I had simmering headache syndrome (what is that?) 4 mos. after
Labcorp test I kept running into an acquaintance from my kids
preschool who I learned has Lyme. Third time I ran into her in a
month she told me to get tested through IGeneX. IGM showed positive
for Lyme and Bartonella. Got my children tested and both have Lyme.
They are ages 8 and 5. (Took them to Dr. J in CT). Husband has Lyme
too. All confirmed through IGenex. After 19 years I finally have an
an answer. I've been to at least 6-10 doctors or more over the years
and NOT 1 of them ever suggested Lyme. In fact, when Labcorp test
showed Neg the PA at the Dr.'s office said emphatically You Do Not
Have Lyme, If the test says Neg. you Don't have it. Yeah right.
Called her yesterday to inform her I Do have it through better
testing and maybe next time she won't let someone slip through the
cracks. Everyone in Family being treated and hopefully on road to
recovery.
* * * * * * * *
Diane Salser - "My Life With
Lyme" personal story is lengthy and published in the book, "All In
Your Head, Patient Stories from the Frontlines - Valid Reasons to
Debate Current Lyme Disease Guidelines" by PJ Langhoff. Email
pjay@lymeleague.com for
information on the book or for a copy of Diane's story for review.
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