Is this the most tragic Chronic Fatigue Syndrome and HHV-6 story?
From The Virus Within by Nicholas Regush.
In the fall of 1996, Tina, in her forties, spiraled ever deeper into
depression, suffering from repeated attacks of migraine headaches.
Desperate, she offered herself the only prescription that seemed fitting:
suicide by drug overdose.
When news of her suicide attempt spread throughout the area,
people were shocked. What could drive Tina to such straits? Yet
the real tragedy was still on the horizon.
Several months before, Tina had experienced a flurry of flu-like
symptoms: difficulty in breathing, nausea, diarrhea, fever, and
aches all over her body. The symptoms were noted in her medical
record, but she made nothing of them. After all, such symptoms
are common and transient, usually abating without medical intervention.
In fact, many early symptoms of disease are subtle and do not
attract attention until the disease is well established. This is probably
why it took so long for Tina's son Len to receive appropriate
medical consideration.
In September 1997, soon after the young boy returned to
school after summer vacation, his teacher, Gail, detected a change
in his personality from the previous year. Len seemed sad and
withdrawn more often than usual, and what had been occasional
flashes of anger occurred with increasing frequency. Gail also noticed
that his writing skills were in decline. She reasoned that such
changes were to be expected in a boy whose mother had attempted
suicide.
By early 1998, Len's behavior had deteriorated. In school he
was so aggressive with classmates and defiant with his teacher that
he was twice suspended. Other times he was so fatigued during afternoon
classes that he would fall asleep. On most days he was either
too tired or distracted to complete his homework. He was
also undergoing physical changes. There were days when he complained
of muscle and joint pain and of having weak legs. Once he
soiled his clothes and on another occasion could not control his
bladder.
Observing Len's erratic and baffling behavior, school officials
concluded that he was likely "acting out" in response to a troubled
home life. They also decided his schoolwork difficulties were the
result of an attention-deficit disorder and that what he needed was
old-fashioned school discipline. That approach did not bring any
benefit. In April, Len became so aggressive that he threatened his
brother, Fred, with a knife. He had also started to have double vision,
particularly when he was tired or stressed. Tina, who by this
time had awakened to her son's plight, agreed with school officials
that Len needed medical testing.
The first warning sign came from a CT (computerized axial tomography)
brain scan that revealed some shadowy areas that appeared
to be abnormal. Len was then referred by the hospital to
a neurologist, who began a more detailed medical investigation.
The neurological exam, which included tests for muscle tone and
strength, revealed nothing of concern except for swelling in both
eyes of his optic disc, the small blind spot on the surface of the
retina. The swelling usually occurs when increased pressure is applied
from the brain to the optic disc; nerves that surround the optic
nerves from the disc are connected to nerve-covering sheaths of
the brain.
Hoping for a clearer look at Len's brain, his doctor requested
an MRI (magnetic resonance imaging) scan that can produce more
detailed images than the CT. The MRI revealed, in the words of
the doctor, "fairly extensive white matter disease present with a
frontal lobe predominance." Though the "white matter"—the inner
areas of the brain rich in nerve fibers—appeared to be diseased,
only when sample tissue was removed from Len's frontal
lobe a few weeks later did it become evident that the white matter
nerve cells had holes and looked like Swiss cheese.
While the tests continued, the only therapy offered was steroids
to ease the swelling in the eyes and opiates to tame the headaches
he was having. Len's mysterious condition continued to deteriorate
rapidly. Soon he could no longer walk without help. He felt
wiped out much of the day and had severe headaches. He developed
speech impediments and an abnormal sensitivity to light. His
teacher, Gail, who visited Len at home, found making emotional
contact with him increasingly difficult. Tina feared the worst.
Over the next three months, doctors at several medical centers
were asked to consult on the case. Their reviews of biopsy materials
led to conflicting opinions. One doctor suggested Len was suffering
from a tumor while others thought that some of his nerve
fibers were being damaged because they were losing their protective
myelin sheaths.
But not one of the doctors initially involved in the case thought
of searching for a virus that could be hiding well camouflaged in
the pieces of tissue extracted from Len's frontal lobe.
