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My Boys' Lyme Stories
In their younger years, rural, wooded Scotland, CT
I hardly know where to begin, my boys have had Lyme disease so many
times!
JOEL
When Joel was 17, he had acute Lyme disease that began as a small bull's eye rash on one of
his upper thighs. We sought treatment right away and he had an apparent total recovery.
A little over a year later, after months of mild complaints of being tired and
slightly achy, Joel was re-evaluated for Lyme disease. His liver enzymes were abnormal but
he was negative for hepatitis. Was all this from Lyme disease? I don't think we can be
sure, but he's well now and his liver enzymes returned to normal following re-treatment
for Lyme disease. He stopped complaining about the aches, though his neck seems prone to
cracking at times.
 | Update- 4 years later...
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Joel spends a lot of time outdoors and checks himself regularly for ticks!
He uses insect repellent too. He's in great health and as active as ever.
BEN
Ben started complaining of an achy shoulder and jaw
about a year after I was diagnosed with Lyme disease. This was
not linked to a specific tick bite and no rash was found although he had had tick bites in
the past.
He also complained of some cognitive difficulties such as word finding
difficulty, reading, and trouble with math. The Western blot test for Lyme revealed that
he had had Lyme disease for some time. He was begun on aggressive antibiotic treatment and
continued for 5 or 6 months until he was assymptomatic for several weeks.
Then three years later, on vacation, Ben had a sudden acute bout of
severe TMJ (trans-mandibular jaw pain) remeniscent of earlier days but far worse. He could
not even open his mouth to eat. At that time, he sported a slight small rash at the site
of a known recent tick bite. He was put back on antibiotics for several weeks and has
apparently fully recovered.
| Update 4 years later...
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Ben is doing great; no recurrance of symptoms or re-infection.
TIM
Tim always seemed to marching to a different drum beat than his brothers. He
seemed to focus on the most obscure things and be totally oblivious to his surroundings at
times, yet at other times, the slightest repetitious noise would be so annoying to him. He
was sociable and interactive most of the time but always seemed to be in a fog. Having had
some exposure to autism and mental retardation, I felt Tim did not fall into either of
those categories with his peculiarisms. The doctor didn't seem to think there was any
problem either. But by the time he was seven years old, I knew something wasn't right. He
was overstressed by the same kind of school work his two older brothers had encountered at
his age, to the point he actually verbalized, "I wish I were dead!" He had too
many emotional outbursts compared to his brothers, even his younger brother!
This scared me into seeking consultation with local school specialists and
a pediatric neurologist. He was found to have an above average IQ but an extremely slow
processing speed. He was also less coordinated physically than his peers and lacked muscle
tone. As homeschooling parent, I chose to modify his curriculum to accomodate his
learning style. As I succumbed to the effects of chronic untreated Lyme disease, I
eventually was convicted that Tim needed to be thoroughly evaluated for Lyme disease. I
wondered if he could have gotten it congenitally as he never exhibited acute illness.
Tim also had a high tolerance for pain. The few vague aches and
pains, headaches, and joint problems he mentioned over the last couple years
could be from undiagnosed, untreated Lyme disease.
About a year after I got off antibiotics, I brought Tim
to a pediatric Lyme specialist for evaluation as his problems
persisted. Although routine tests (Elisa, Western
Blot) for Lyme disease were negative, a
blood culture for Lyme disease not available yet to the general public showed he had live spirochetal infection.
Other tests showed he had ehrlichiosis and babesiosis as well.
His symptoms seemed indicative of neonatal infection. Yet my other children did
not manifest this way.
Years later, I remembered that Tim, as
a newborn, had consumed donated breast milk from two friends while I was
hospitalized for a kidney stone. One of those women tried to commit suicide
within a year or a year and a half of his birth for no apparent reason. I had
lost touch with her due to a move. I have often wondered if she had Lyme disease
and these other tick-borne diseases which no one else in the family has had.
A cognitive evaluation by a neuropsychologist also revealed similar
findings to the tests done several years before. The findings included a diagnosis of
Aspbergers Syndrome, a mild form of autism, and slow processing speed that kept Tim
from meeting his potential in various subject areas.
So in Tim's case, we were dealing with two different but intertwined medical
problems. The antibiotic treatment has helped incredibly regarding lifting the brain fog,
alleviating vague pain and decreasing and almost completely
curtailing emotional outbursts. We
continued his treatment in hope of increasing his processing speed as much as possible. If
only we could upgrade his brain like we do our computers!
Tim finished his treatment for Lyme disease
after just over 2 years.
| Update, 1 1/2 years later...
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Tim was doing great with no complaints at all. We had him re-evaluated for Aspbergers Syndrome and were told although he has some characteristics of Aspbergers, he
does not fit the profile overall. He just has a personality deviation from the average kid
and he's "wired" differently as far as how he processes things in his brain. I
think that runs in the family on my side!
PETER
Peter is a very active boy. With a few hours of sleep every night, we find
his "batteries" are fully charged without fail by the next morning. However,
when he was about eight years old, a tick was found on
his scalp, and 1 1/2 weeks after the bite, he
developed a bull's eye rash near his right armpit. (Click for picture). He got the classic fever,
headache and malaise. Aggressive antibiotic treatment was begun and within a week he was
back to playing baseball though he tired more easily for a couple more weeks.
Phew... Not the end of his story, though...
One year later, Peter had a tick at the base of his neck. I removed
the tick but noticed a very pale, hard to see pink rash spread upward underneath his hair.
He also was not feeling well-- headache, malaise, slight fever. We got him on antibiotics
right away, but after six weeks (normal aggressive treatment for early, acute Lyme
disease,) his fatigue persisted. We continued antibiotic treatment a couple more months,
and Peter seems to have fully recovered.
| Update 2 years later
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Peter's doing great too! He has been off antibiotics
for 1 1/2 years
with no re-occurance of Lyme symptoms. He spends a lot of time outdoors like Joel. He's
found a few ticks crawling on him, but none of them have bitten him, thank the Lord!
A year or so after Peter's recovery, our
family relocated from a heavily wooded area to an open field, but there's still plenty of
ticks around. We've also converted our in & out cats to indoor cats despite their
longing to go out on the prowl.
We made it a whole year without any new cases of Lyme disease in
our immediate family! Only Tim remained on antibiotics for Lyme at present.
Then came the fall... Peter got 3 tick bites playing in a friend's wooded yard.
A few short weeks later, malaise and forgetfulness set in. But it went away.
Then it came back 3 or 4 weeks later, and went away. By the 3rd occurance, I
realized he was likely re-infected. He tested positive for Lyme disease again
and was re-treated for about 2 years due to persisting symptoms. Afterwards, he
was completely assymptomatic and remains so to this day.
GINGER
I suppose some of you are wondering how Ginger is... She's
is our chocolate labrador whom
we've had for years. Well, long before any of us had been diagnosed with Lyme disease, she had acute Lyme disease herself. She suffered malaise, a limp that came
and went, lack of appetite and had a depressed look about her. We immediately suspected
Lyme disease. She was treated with amoxycillin and recovered quickly.
She also had the canine variety of Lyme vaccine. It doesn't always
work that well. Yet despite numerous tick bites since, she has never
exhibited recurring
Lyme disease. She's a tough, frolicky old pup, and aside from a funny gait due to a car
incident in 1989, she hardly showed her age of thirteen!
| Update, one year later...
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We had to put Ginger down as her age finally caught up with her. We miss
her dearly.
Nancy B.
Email Nancy: mailto:nancy[AT]lymesupport.com
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My Boys' Lyme Stories
